God's Perfect Plan for Myla

Done

2008-05-05T18:18:00.005-04:00

Myla's ANC jumped to 1,459 today, which meant that she is now strong enough to begin another round of chemo. However, too much time has passed since her last round, and her primary doctor is strongly leaning toward NOT having Myla complete the fifth and final round of her chemo treatments. Discussions are still underway, but it appears that we are not heading back to Riley Hospital for another long inpatient stay.

Is this good news? Could be. Generally, I think it is. Going through with another round of chemo could be too toxic for Myla's system, and it's appears that this is exactly what may have caused Myla to land in the ICU during the previous round. Preventing her from undergoing this again sounds like a good thing. On the other hand, not completing the final round slightly decreases her chances for survival overall. So, instead of Myla having a 50% chance of reaching her 5th birthday, the odds drop to 45%. Not good. However, our primary doctor feels that avoiding the potential danger of the final round, which could kill her, outweighs the slight decrease in overall survival odds.

Further complicating the picture is the matter of timing. Because so much time has passed since the end of the 4th round of chemo, the 5th round would be less like round 5 and more like a random round 1. In other words, the sequencing of the treatment has been disrupted by the long pause we've been living, so there may not be much value in subjecting her to chemo at this point.

Where do we go from here? We'll continue to take Myla into Riley for blood tests, and she'll likely have her PIC line removed during one of our upcoming visits. And given that her ANC is up, we'll soon be able to go outside and do things that normal families do for a change. We're looking forward to that, and I'll take a ton of pictures in the process.

As far as the blog, I'm not sure what to do with it. I'll keep it available in hopes that it somehow offers information and insight to families who have yet to walk down the path we've traveled. And if Myla relapses, then I'll likely just pick up here where we left off. In the meantime, I'll be posting our pictures on my Flickr account, which is at http://www.flickr.com/photos/bluefork/. I feel the need to have a bit more privacy with our family pictures now that the chemo treatments are done, so I'll be making these images available only to "family" and "friends." If you have been following this blog, then I'm very likely to consider you a "friend," so feel free to join Flickr--it's free--and add me as contact. I know that many of you who have been following Myla would like to continue seeing pictures of her, so I want to make them available for you. As for the storyline, I'm going to refer you to Melissa's Caring Bridge Site at http://caringbridge.org/visit/gomyla.

It's impossible to summarize the gratitude we feel for the prayers, the meals, the gift cards, the toys for Raul Matthew, the blankets and cuddly animals for Myla, etc.. We appreciate the support you have shown us more than words can express.

So, that's where we are. Oddly, I'm finding this a welcome, but jarring transition to make. In some ways, I feel as if I'm a prisoner who has just been released from the big house. I'm standing outside the prison gate unsure of which direction to walk. In the days and weeks to come, we'll try to find normal again.

Thanks again.

Raul

Still waiting...again

2008-05-01T23:41:00.001-04:00

Today's ANC: 470. The next blood test is scheduled for Monday.

Still Waiting Some More

2008-04-28T15:27:00.004-04:00

Things appear to be headed in the right direction, but we'll still be at home for a few more days. Here are the results from today's blood test:

ANC: 403 (up from 350 last Thursday)
Hemoglobin: 9.6 (up from 8.7)
Platelets: 382 (up from 302)
White Blood Cell Count: 1,200 (up from 1,000)

Still waiting some more...

2008-04-24T20:00:00.000-04:00

Today's ANC: Down to 350. Next up: Blood test on Monday, and then on Thursday if needed, and then a bone marrow test if her ANC isn't closer to a thousand by then.

Still Waiting

2008-04-21T21:32:00.002-04:00

Myla's ANC was only 438 today--down from the 500 last Friday--so we continue to wait for her ANC to get closer to 1,000 before she is readmitted for her final round of chemo. A nurse will come to our home on Thursday, as she did today, and we'll see what the numbers are then. We're hoping to be admitted on Friday. :)

Turned Away

2008-04-18T22:22:00.002-04:00

"Not yet."

That's the official word from Riley regarding Myla's admission. Her ANC wasn't high enough to begin the 5th round of chemo--it was only 500--so we are waiting until Monday to see if it's closer to the 1,000 level.

Pictures

2008-04-16T12:51:00.002-04:00

Here are a few pictures from the last couple of weeks:

Raul Matthew in his Grandpa Byrom's fireman's outfit
Raul Matthew and my mom with RCA Dome in background
Myla in her bouncy seat
Myla smiling
Myla tilting her head to the side
Myla oblivious that Denise is about to eat her lollipop (okay, it's really an oxygen sensor). :)
Myla "eating" rice cereal
Myla looking over Mommy's shoulder

Thanks to the Jasay's for the great dinner last night and to Denise Page for tonight's meal!

We're Scheduled for Friday

2008-04-15T00:10:00.002-04:00

Melissa took Myla into the clinic today, and we learned that Myla will be admitted on Friday for her 5th round of chemo. Her ANC has dropped in about half. It's now in the 400-range, but that's to be expected given that Myla is no longer on the GCSF medication that is designed to boost her white blood cell count. Thankfully, her platelet count has risen to 55 (or 55,000).

I wasn't feeling well today and didn't make it into campus where I could upload some new pictures, but I'll post them when I can. Melissa, Raul Matthew, and Myla will return home tomorrow around noon, so we'll be able to spend a few days together before we head back to Riley on Friday.

Thanks so much to Diana Metz for providing a wonderful dinner for us to enjoy tomorrow!

Together Again!

2008-04-13T13:39:00.004-04:00

I'm feeling well enough to get out, so I'm down in Greenwood with the rest of the fam for the weekend. Myla is doing well, though there are some concerns about whether her platelet levels are high enough for her blood to clot. Last Monday, Myla's platelets were 65 (or 65,000), but they had dropped to 32 by Thursday. When they drop below 20, then the body has difficulty stopping bleeding both inside and out. As far as outside, there are some concerns with the area around Myla's PIC line, so we're keeping an eye on that. And as far as inside, well that's a bit harder to see, but there is always the danger of internal bleeding that goes undetected. We have an appointment for Myla at the Riley Outpatient Center at 10 AM Monday, so we're hoping that her blood stays where it should be until then. :)

Thanks so much to the Gollner family for bringing me pizza for dinner on Friday night! This made my entire week!!! :)

Sick and Separated

2008-04-11T00:26:00.003-04:00

I'm still at home in Kokomo recovering from bronchitis and Melissa and the kids are still down with the Byroms in Greenwood. Hopefully, I'll be well enough in a couple of days for us to be together again. I spent my birthday alone, if you don't count the cats, but maybe I should count them after all given how happy they've been to have someone to cuddle up with for a change.

Melissa took Myla to the Riley Outpatient Clinic today. It appears that Myla won't be ready to start the 5th round of chemo on Monday as originally planned.

Thanks to Hannah for sending me a link to a video on the Indianapolis Colts website in which Myla makes an appearance during a recent visit by one of the Colts players to Riley. You can watch the video at www.colts.com. Just click on the "Community, Baskets of Hope" option under the video section on the right side of the screen.

Update

2008-04-08T06:01:00.003-04:00

Sorry for the lack of updates...I've had flu-like symptoms since last Wednesday. I've spent most of the last week in bed, so I haven't had much to report. I returned to Kokomo on Sunday afternoon to recover while the rest of the family is staying with the Byroms down in Greenwood. Melissa had planned to return home today, but I encouraged her to stay down there until I get checked out by our doctor.

Free at Last, for now

2008-04-04T23:01:00.004-04:00

Myla was released tonight from Riley! :) We'll have to come back on Monday and Thursday of next week before being readmitted on Monday, April 14. In the meantime, we'll try to enjoy some family time. Thanks for all of your prayers.

Thursday

2008-04-03T22:34:00.003-04:00

Myla's ANC is 50, and we are planning on leaving the hospital tomorrow. We have decided to stay with the PIC line, which is working well now, in place of having another central line put into her chest. We have to be back to the hospital on Monday, so we'll likely camp out at Melissa's parents' house in nearby Greenwood, and then head back to Kokomo on Monday evening.

Wednesday

2008-04-02T16:53:00.007-04:00

Some good news--Myla's ANC is 90 a second day in a row, so we're anticipating that it will continue to climb. The plan now is for Myla to have another surgery on Friday to install the central line in her chest before we leave for home that same day. This seems a bit rushed to me, but the doctors seem antsy to get her out of the hospital before the weekend starts. We'll see.

Three quick notes:

We've been moved to another hospital room again. So, we're back to sharing a room with another family.
Raul Matthew is almost over his turn with the flu, and I'm sensing that my turn is next. The Byroms and I have taken turns staying with Raul Matthew because he can't be in the cancer ward with the cough he has had.
One of the doctors told us that the reason that Myla's heart rate was slowing down was because the line has been inserted too far and was actually down in her heart.

Tuesday

2008-04-01T15:23:00.002-04:00

Myla's ANC is 90 today, so that's a great sign that her system is coming back to life! Once her ANC is high enough, she'll be scheduled for a surgery to remove her PIC line and put in another central line in her chest.

My laptop computer has died, so my updates may be a bit slower for a while.

Sunday

2008-03-30T08:18:00.002-04:00

Myla's ANC is still zero, but this has been a better day. We are still thinking through whether to have Myla's PIC line replaced by another central line.

If you have been following this blog, then you've noticed a new look to this page compliments of Rebecca Phong, whose child has also seen the inside of Riley hospital far too often. Rebecca's daughter is facing some challenges of her own right now, so the revisions to this blog will take place whenever they take place. It already looks a LOT better than what I had done before. Thanks, Rebecca!

Saturday

2008-03-29T17:06:00.001-04:00

Today finds Myla--and us--continuing to adjust to the PIC line she had installed yesterday. Myla paused for a picture with Nana before nurses came to change the dressing around her new line. Here's the deal: Myla's line was placed in a less than ideal location. The base of the plastic part that feeds into her vein is stitched to her forearm, while the insertion point is located in her bicep. Here's a picture. If she bends her arm, then the insertion point is crammed further into her vein. Not only does this sound painful, but it seems that this has a higher chance of also introducing infection. We'll have to do some more thinking about this and talk with the medical staff. All I know is that this looks painful, and I certainly wouldn't want this in my arm. Anyway, here's what her PIC line looked with the new dressing and here's a splint we requested to keep Myla from being able to bend her arm. This looks workable for a few hours, but for a couple of months? Wow.

As far as we know, Myla's ANC is still zero.

I had a surprisingly emotional response as we stood in line for dinner last night at the Ronald McDonald House here at the hospital. The dinner was brought in by a family--not an uncommon event. This dinner, though, was also the one-year birthday party for a child who had recently passed away at Riley. I took a piece of the birthday cake for Melissa because I knew she could eat it in blissful ignorance up on the 5th floor, but I found this a difficult dessert to eat, no matter how you slice it. Happy birthday to Jack.

5:24 PM: Myla's heart rate has become low (70 beats per minute) and irregular after having the dressing for the PIC line changed. The medical team is looking into this now.

6:13 PM: Myla's heart rate is back up where it should be--in the 120 range per minute, but arm is bleeding where the PIC line goes in, so they are giving her some platelets to boost her ability to form blood clots. Her platelet count is currently 65--short for 65,000--so boosting her platelet count should help stop the bleeding. In the meantime, we've had the flexible splint replaced with one that can't bend as easily. The other one was slipping off, and this was going to be a losing proposition with Myla beginning to grow more curious about this new thing that was on her arm. After getting some good advice from one member of the medical staff, Melissa and I are strongly leaning toward having this PIC line taken out and a central line installed in Myla's chest once her ANC count gets strong enough.

8:55 PM: We've replaced the green splint with yet another one, but that is also bending too much. We are waiting on an x-ray machine to get to the room to check on the placement of this PIC line inside Myla. The end of the line basically runs into her heart, and there is concern that the line is affecting her heart rate somehow. This was presented as a risk present with the insertion procedure, but with Myla's heart rate going back down again, we have to consider this as a possible cause.

9:36 PM: The x-ray showed that the PIC line is inserted too far, and this is causing the irregular heart beat. So, we are waiting for doctors to come to the room to remove the stitches and readjust the line.

9:41 PM: The procedure just started. Myla was sound asleep, but...

9:51 PM: The procedure is done, and the PIC line was retracted by almost a full inch! Myla is still crying as they are cleaning the area and putting on the new dressing, and we're waiting on another x-ray to check the new positioning. We're exhausted, so I might not offer another update tonight. Thanks for your continued prayers. It's been a difficult few days, even after getting out of ICU.

Friday

2008-03-28T14:54:00.000-04:00

Myla's ANC is still zero. We are waiting to take Myla down to the radiology department on the first floor for Myla to get her PIC line inserted into one of her arms.

5:04 PM: We're back from radiology, and Myla has her new PIC line. She almost seemed to protest on the trip down there as evidenced by this picture. The procedure went fairly well, but they had to try several locations before they found a place that worked. I guess her veins were too small for some of the other spots. Unfortunately, the insertion of the line ended up close to the elbow, so Myla will need a splint of some sort to prevent her from bending her arm for the next couple of months. Here's a shot of Nana helping Melissa put on a hospital garment on Myla for the procedure, and another of Audrey putting numbing cream on Myla's arms. Here's another image of Myla looking happier earlier today.

Myla is also teething, so that can't be much fun either. Meanwhile, we are waiting for word on when Myla's other line will be removed.

Thursday

2008-03-27T16:43:00.000-04:00

Today has been a miserable day for Myla. She has been having some intense intestinal pains on and off since about 4 AM, and she also appears to have caught a cold. Her ANC it still at zero, and her platelets have dropped once again into the 20s, so she got a fresh batch of platelets today. She doesn't have a fever, so that's the positive news. The area around her central line is bleeding, so there is talk of taking this out and putting in a PIC line instead. This line would function the same as the central line, but it would be placed in her arm instead of in her chest. This procedure could take place tomorrow, maybe.

My Grandma Canez is here from Tucson for a visit, and we're hoping Myla can perk up in time to give us a few smiles before she leaves on Sunday. (Not more than a few minutes after I typed this, Myla took a short break to offer some smiles.) We also got a visit from Courtney Roby of the Indianapolis Colts.

Thanks to Keri Lyn for the shoes for Myla that will remind her of those white and black cats back at home!

Wednesday

2008-03-26T23:19:00.000-04:00

Myla's ANC is still zero, so the waiting game continues. Her platelets fell again today, but only down to 52, so they are still keeping an eye on this. Besides this, Melissa voiced concern that Myla seems to sleep all the time, despite being taken off the medications she had been on to manage her withdrawals from the dopamine she had been given while in the ICU.

We need rest.

Tuesday

2008-03-25T21:02:00.000-04:00

A few pictures of a much happier Myla:

Myla chewing on a Rice Krispies package
Myla looking over Granmma's shoulder
Myla laughing at Mommy

We also moved to a private hospital room today!

Monday

2008-03-24T23:07:00.001-04:00

Myla's ANC remained a zero for another day, but there are some indications that her immune system could come back to life soon. Here's the puzzling part, though: Her body has been greedily consuming the platelet transfusions she has been receiving. For example, yesterday her platelets were at 157, but they dropped all the way down to 22 today--a fall that has left both doctors and nurses mystified. Generally, platelets drop when a child has a fever, and this happened when Myla had a fever in the ICU. Now, however, she has no fever, and yet she is not able to keep her platelet number elevated. Things get serious--life or death serious--when platelets drop below 20, because as I understand it, the body has no way to stop bleeding. Cuts on the outside are easy enough to see, but internal bleeding could also take place. So, that's the main issue we're working through today.

Sunday

2008-03-23T21:17:00.000-04:00

Myla is doing well, but her ANC is still at zero despite being given the GCSF drug designed to boost her white blood cell count. It's just a matter of waiting. :)

Saturday

2008-03-22T00:01:00.000-04:00

Today I'm planning to give the blog a rest.

In the meantime, please encourage yourself by reading the very best of this blog by reviewing the comments YOU all have posted to my entries during the past week. We will cherish your insights for years to come. Thanks so much!

ICU Day 8

2008-03-21T12:38:00.000-04:00

12:38 PM: We're still waiting on a bed to open up on the 5th floor. In the meantime, Myla is sleeping peacefully. Here are some pictures from the last couple of days:

Myla listens to her Grandpa Byrom.
Myla held by Aunt Kim.
A huge yawn from Myla.
Myla sleeping peacefully.
Myla looking more like herself.
Raul Matthew and a new friend.
Write your own caption for this picture taken outside the cancer center.
The dark windows in this picture--that's our room with a lovely view at the Ronald McDonald House.
I need one of these to carry my lunch in.

2:02 PM: We're now back up on the 5th floor and sharing a room with another patient. It's tight quarters, so Raul Matthew and I headed back to Kokomo for the evening.

ICU Day 7

2008-03-20T11:31:00.000-04:00

11:25 AM: After some intense days, I just got some great news! One of our doctors just saved a bunch of money by switching to GEICO. Myla also got her NG tube taken out. That's the nasogastric tube that runs through the nose, past the esophagus, and into the stomach. This tube had been helpful in giving her medicines and especially in pumping out what seemed like gallons of the green bile she was producing. The removal of the tube should help with Myla's ability to nurse. If you are on the bored side today, stick a tube up your nose (but be careful), wrap it around your head, and then try to drink from a 1/2 empty can of Coke.

Further, preparations are underway so it's only in the dry heaves stage, but we are about to be retched from the bowels of the ICU to the 5th floor. I know, it's an icky metaphor. When you are done with the Coke experiment, you can use Lakoff and Johnson's Metaphors we Live By to figure out what I'm really saying about the organizational culture of hospital life. It's not that our time in the ICU has been a totally bad experience. It's just a different system, and it takes a little time to learn the rules of the game. For example, there is only one phone in the entire ICU for parents to use, but if you can smuggle in a pack of smokes for your nurse, she'll make sure you get phone time. It's all about knowing how the system works, just like the rest of life.

I am expecting a boring afternoon as we transition up to the 5th floor, so I'm not planning an update until early evening, let's say 8:00. However, if there is breaking news to report, then I'll break in. In the meantime, I'm hoping to catch a picture of a Myla smile. :)

6:13 PM: Today has gone really well with Melissa holding Myla in the rocking chair. At times, Melissa was deep asleep and Myla was just looking around with her wide eyes. She even flashed a short smile at Melissa, but it was over before I could swing my camera around at her. At least we're on the right track. Tonight, we'll remain in the ICU. Even though Melissa is with a great child, there is no room for her in the 5th floor inn, and we can't head for a stable because Myla is still neutropenic. In fact, her numbers dropped today meaning that her ANC is back to zero. In other words, she has no defense system yet. But, that's normal, and I think we're in good shape. I learned today that the TPN supplemental nutrition that Myla is getting through her central line is $1,000 a day. I told Raul Matthew, "That's enough to buy you a Happy Meal from now to the end of the year." His response: A shrug of the shoulders.

10:18 PM: No exciting news to report, thankfully. We do have, however, a major decision facing us. When Myla's primary doctor saw how sick Myla had become, she decided that this would be Myla's last round of chemotherapy. Of course, she didn't tell us this at the time, but now that Myla seems to have bounced back so well, she is open again to the idea of us continuing with 5th and final round of chemo. Very simply, here's the issue: A 5th round of chemo would likely improve Myla's chances of survival, but it could also kill her. What to do? We're leaning very strongly toward completing the 5th round, and here's why.

First, if the 5th round would increase Myla's chances for survival, then it would make sense to do it.
Second, this more aggressive approach seems warranted given Myla's aggressive AML. Even if Myla were to make it past the 5th round with flying colors, her chances of surviving to age 5 are only 50%. My thought is that since this disease is so aggressive, why take a passive approach to her treatment? (I know, because the treatment might kill her. And that's the dilemma).
Third, in order to fight the infection Myla seems to have had, she was given a medicine called GCSF, which is designed to make her body produce white blood cells faster after a round of chemo than it normally would have. In other words, it makes her ANC go up faster. This is good, but the potential downside is that it could also fan the flames of any chemo cells still in her. Put another way, if the last medince she gets in her treatment has been shown to bring leukemia back to life, then it sounds too risky to just walk away from treatment at this point. To me, that would be like placing another log on a campfire you think has gone out and then just hiking away. It just makes sense to head into a fifth round, but not without Myla getting plenty of rest in between rounds 4 & 5. In fact, her doctor is talking about taking a month off between these rounds.

That's that major decision we have to make. A relatively minor decision is what to do with Myla's central line. We need to have it taken out before we head home because it's a temporary line held in place by 2 stitches, and there is too much risk of it coming out while we are at home. So, do we have the new central line installed before or after her break? Personally, I'm leaning toward having it installed before we leave the hospital because it will keep Myla from getting poked several times during that period. Plus, without a central line, Melissa might have to give Myla shots of GCSF daily. The beauty of the central line is that it eliminates all of the poking.

10:42 PM: Melissa just reported that Myla had a messy diaper, so that's great news as it's evidence that her digestive system is starting to work again. She also ate well once she got the NG tube taken out.

ICU Day 6

2008-03-19T06:57:00.000-04:00

6:55 AM: Melissa's mom just called me to say that Myla's condition has worsened, so we're heading back over to the hospital. Apparently, she has been screaming the last 4 hours, her skin is showing a mottled redness she had when they thought she had septic shock, and another buildup of medical people is starting in the hospital room. I'll try to let you know what I found out when I get there.

7:13 AM: I had just pulled the car up to the overhang in front of the Ronald McDonald House so that Raul Matthew wouldn't have to walk to the parking lot in the rain when a second call came in--this one passing that Melissa thinks it would be better to let Raul Matthew sleep. So, I'm back at the room for now. In the meantime, here's what I know: Myla has been screaming for the past few hours, and the pain medication they have given her appears to be having no effect. The doctors just examined an x-ray they took this morning, and their assessment is that Myla's pain is caused by gas. If so, that's a good sign, I guess, as it would indicate that her digestive system is taking steps to return to normal. She hasn't eaten a thing since last Friday, so that has to be factored into the picture as well. From what I understand, the doctors are looking for a way to better manage her pain. There was a question about whether she can have another dose of morphine. Melissa's mom also reported that the purplish color that had concerned doctors on Friday had made a partial return, so we'll have to keep an eye on that. Her blood pressure seems acceptable and her heart rate has been in the 150s even with her crying, and that's significantly less than the 220s we had seen on Friday. Myla's cry is also different, and she seems to have difficulty breathing as well. Apparently, doctors are also a bit concerned that her vocal chords are swelling up due to the crying and possibly the residual irritation of having been on a ventilator.

12:34 PM: Melissa called to tell me that Myla is doing much better now. The pain had been caused by gas in her system, and after she had a small bowel movement she calmed down. She's now been sleeping for a couple of hours. So, that's good news. Some great news is that Myla's ANC is 40 today! This means that her immune system is coming back to life, which means that her own body will soon be able to fight off any infections and she won't have to rely soley on antibiotics to do the job. Melissa also reported that Myla's color has returned to normal, and she might even be able to nurse sometime this afternoon. Further, they told us we could probably head back up to the cancer center on the 5th floor tomorrow! That's great news because it gets us out of the germy environment of the ICU that serves a general population of kids having everything from chicken pox to MRSA.

3:48 PM: Myla is sleeping with a wonderful peace about her this afternoon, or at least in the times I've been in and out of the room. She awoke for about 20 minutes as the nurses were changing her lines, but she was seemed content and held onto my finger as she fell back to sleep. Okay, she held onto one of my fingers for those of you who might be concerned about me. :) Raul Matthew did a wonderful job cohosting the bingo show on the hospital TV network this afternoon with Beth from Child Life! Here are some recent photos:

Myla yesterday with her eyes open.
Raul Matthew and Audrey doing Tae Kwon Do in the ICU.
Myla being held by Melissa, Audrey, and Julie.
A resident examining Myla last night.
Aunt Kim visits with Raul Matthew.
Myla gripping Grandma's hand.
Myla's belly. The circle of ink marked the area that had been red and bulging. Looks much better now!

11:19 PM: The evening finds Myla alternating between sleeping and fussing. Her vital signs and temperature all look good, but she would rather cry than nurse. Hopefully, she'll just pass the time by staying in a contented sleep. Same for Melissa. She's been averaging about 2 hours of sleep during the last few days. With tomorrow comes the prospect of moving out of ICU and back to the 5th floor. But, that all depends on how well she is doing tomorrow. Melissa is not convinced that Myla should be heading away from ICU quite yet, so we'll see. From what I understand, there is not a private room available in the hemoc floor where we usually stay, so that means we might end up sharing a room with another patient or being placed temporarily in the Stem Cell unit which is also on the same floor. Wherever we go, it will be nice to leave ICU behind us. I never thought I would look forward to taking my child to the cancer ward, but I guess that's where we are tonight. :)

ICU Day 5

2008-03-18T10:35:00.000-04:00

10:39 AM: Today finds Myla doing well, though she alternates between stretches of sleep and agitation. She seems to be in pain when she is awake, so we're looking into solutions. They don't want her thrashing around, so perhaps they will give her sedatives. She was far more alert this morning than she even was last night. Myla tries to cry from time to time, but her voice isn't strong enough to make more than a light squeak.

They have also just begun to back her off the dopamine, one of the 2 drugs they have given her to make her heart work harder. The other drug is milrinone, and there is talk of slowly scaling that one back today as well.

We're sitting by Myla's bed watching her blood pressure--it's high at 132/86--and making sure that she breathes well. Ocassionally, the monitor's alarm will sound indicating that she isn't breathing. Sometimes that's the case, and we just have to shake her, but other times the connection to the monitor failed to pick up her respiratory rate.

11:32 AM: We just attended the daily rounds with the doctors, which is a briefing of Myla's condition during the last 24 hours along with what they plan to do during the next day. In short, they are planning to discontinue the dopamine immediately and ween her off of the milrinone.

11:00 PM: Myla was in and out of sleeping most of the day, but when she was awake, she wasn't a happy camper. She seems to have a fair amount of pain due to perhaps her mucositus, her bowels, and maybe even the irritation caused by the ventilator tube that had been in her throat. We made it through most of the day without calling for pain killers, but toward the evening hours some meds became needed. For the first time, we were able to hold Myla, and when I get a chance tomorrow, I'll post pictures of Myla being held by Melissa, Audrey our nurse, and Julie the master catkeeper. We are keeping a particular eye on Myla's blood pressure which had been high at times throughout the day and on her temperature which had been as low as 94.7 degrees. I'm anticipating that the main focus for tomorrow will be to begin weening Myla off the milrinone, which they haven't started to do yet. They will also continue to reduce her supply of oxygen. She is currently getting an air supply of 6 liters per _______? consisting of 30% oxygen. They'll reduce her to 4 liters tomorrow.

Tomorrow will also be a big day for Raul Matthew as he gets to cohost a hospital-wide TV broadcast of a Bingo game. That's about it from here. Thanks again for your prayers.

ICU Day 4

2008-03-17T22:29:00.000-04:00

10:07 PM: Today turned out to be a great day overall for Myla! She was taken off the ventilation machine and is now breathing on her own. In fact, things were going so well that I decided to head back to the Ronald McDonald House to do some much overdue grading, when soon thereafter the call came for me to come back to the ICU because Myla was having trouble breathing. The respiratory therapists gave Myla some meds to open up her airways and our nurse for tonight sucked the mucous from Myla's mouth to help her breath better. After the elation of seeing Myla extubated, we faced the possibility of seeing that thing back go in tonight, but so far, the medicines seem to be working and Myla appears to be breathing comfortably again.

And now, for some photos:

Myla getting wheeled out for her surgery and Raul Matthew eagerly awaiting her return.
Myla after her surgery.
Myla today after getting her ventilator tube taken out!
The picture of Myla I placed above her bed to remind the medical staff who they are dealing with.
Doctors checking on Myla tonight (1 & 2).
Raul Matthew "helping" the echocardiogram technician enter data.
The bear that Hannah and Jared (shown with Melissa) brought for Myla.
A visit on Saturday from "Uncle Mike."
Thanks to Stacy for the passes to the Indianapolis Zoo. I took Raul Matthew there on Sunday to get him out of the insanity of the hospital environment, and he got out his energy in the butterfly display at the White River State Park conservatory. Memorable animals included a lion, lioness, zebra, dolphins, blue butterfly, orange butterfly, rhinos, emu, rabbit, and an ear. Let's make that 2 ears.

Thanks again to all of you for your continued prayers and support. Melissa and I see God's hand in the events of the last few days. If you think about it, had Myla not run such a high fever, they would not have taken the chest x-ray that revealed the imminent danger posed by her old central line.

There is talk of Myla leaving the ICU within the next couple of days. Of course, that's just talk, but it's good-sounding talk to us. Myla's primary doctor was elated at Myla's condition today. Seeing her excitement was encouraging to us.

11:02 PM: Right before Raul Matthew and I left for the Ronald McDonald House, Myla opened her eyes and looked around the room in earnest for the first time. She also responded to Raul Matthew's voice as he said goodnight to her. I'm hoping to capture a smile from her tomorrow. :)

ICU Day 3

2008-03-17T00:34:00.000-04:00

Myla continues to rest in a sedated state. Her color looks better, and the respiratory therapists have begun the process of weaning her from the ventilator. Her vital signs look good, but she showed signs of being in pain on Sunday night. Her digestive problems don't appear to have worsened, but she is still producing a lot of green bile that is being pumped out of her. One of her doctors proposed that her problem might be a side-effect of 2 of the chemos she has had. Apparently, they can leak through the walls of the intestines, enter the abdominal cavity, and cause an infection that can't be detected in the blood stream, hence explaining why her blood cultures have yet to shows signs of an infection. If this is the case, then the 3 antibiotics Myla is on might be able to fight off this infection in her belly. From what I understand, this stuff would then be reabsorbed into the intestines and passed out of the system from there. The doctor explained that this type of infection could also explain the herniated look of Myla's belly button. So, the big picture is that this infection could be taken care of during the next few days with the antibiotics and the resurgence of Myla's own defense system. She was given another drug to that will cause her white blood cells to reappear earlier than they normally would. The downside is that this could also cause any residual leukemia to also make a faster rebound, though this is unlikely.

It's hard to talk about timetables of when we will get out of ICU and back home to the 5th floor, but making the move by next weekend is a possibility. But first, Myla has to be off both the medicine that is making her heart pump more strongly and the ventilator. It's possible that she could be off the ventilator by Tuesday, and once they have checked that off the list, then they would back off the heart medication. Once this is complete, then they would still keep her another 1-2 days for observation.

Thanks to all of you for your continued prayers and concerns, to Ed and Jenn for offering to bring coffee by the hospital, for Mike for visiting on Saturday, and to Hannah and Jared for visiting Myla and bringing a Build a Bear from concerned members at her church. I'll post pictures tomorrow!

10:07 PM: Today turned out to be a great day overall for Myla! She was taken off the ventilation machine and is now breathing on her own. In fact, things were going so well that I decided to head back to the Ronald McDonald House to do some much overdue grading, when soon thereafter the call came for me to come back to the ICU because Myla was having trouble breathing. The respiratory therapists gave Myla some meds to open up her airways and our nurse for tonight sucked the mucous from Myla's mouth to help her breath better. After the elation of seeing Myla extubated, we faced the possibility of seeing that thing back go in tonight, but so far, the medicines seem to be working and Myla appears to be breathing comfortably again.

And now, for some photos:

Myla getting wheeled out for her surgery and Raul Matthew eagerly awaiting her return.
Myla after her surgery.
Myla today after getting her ventilator tube taken out!
The picture of Myla I placed above her bed to remind the medical staff who they are dealing with.
Doctors checking on Myla tonight (1 & 2).
Raul Matthew "helping" the echocardiogram technician enter data.
The bear that Hannah and Jared (shown with Melissa) brought for Myla.
A visit on Saturday from "Uncle Mike."
Thanks to Stacy for the passes to the Indianapolis Zoo. I took Raul Matthew there on Sunday to get him out of the insanity of the hospital environment, and he got out his energy in the butterfly display at the White River State Park conservatory. Memorable animals included a lion, lioness, zebra, dolphins, blue butterfly, orange butterfly, rhinos, emu, rabbit, and an ear. Let's make that 2 ears.

ICU Day 2

2008-03-16T01:27:00.000-04:00

1:27 AM: Myla continues to rest in a heavily sedated state--just where they want her for now. Her temperature has remained elevated for most of Saturday (in the 101-102 range), but her vital signs remained stable and her condition showed no signs of worsening. General surgery is still keeping a close eye on the abdominal complications she is showing, but her swollen stomach around the belly button area shows no major signs of getting worse. Melissa had the idea tonight that Myla could have a hernia in the belly button area that has obstructed the flow of her intestines, so we'll have to run that by the medical staff. The blood cultures for two different tests have so far failed to show that Myla has an infection of any sort, so that's good in the sense that she either doesn't have an infection or the infection she has is not particularly aggressive. Because of this, looking into other explanations for her condition makes sense.

For some reason, I found myself bothered by the thought that the medical staff in the ICU had only seen the sick Myla, and not the smiling version that the rest of us see on a daily basis. Then I remembered that I had an extra 8 x 10 photo of this picture of Myla--a picture that now hangs at the head of her hospital bed for all to see. I wish that all sick children had such a picture hanging above their beds as a reminder to doctors and nurses that the child they are working on is not an impersonal blob, but a real person.

Of course, we've spent all our time on the Hematology/Oncology floor at Riley Hospital where the nurses are legendary when it comes to seeing their patients as the little people they are. Christina W. came into work at least an hour before her shift just to visit with us, and she even brought us brownies. Melissa joked with Christina about having her come up to Kokomo to change the dressing on Myla's new central line, and Christina said in all seriousness that she would do it without hesitation if that's what we needed. This is just the tip of the iceberg. I can't tell you the number of times that Audrey has stayed well after her shift had ended to help out with Myla or keep Melissa company. Here's a shot of Audrey after hours--again--holding Myla's hand in ICU. Sally O's comment on yesterday's blog entry is also typical of her and the encouragement she has given to us, and as you can see in the picture, she has taken time to help Raul Matthew through Myla's treatments. Erin, as with all the nurses we've had in HEMOC, was impressively competent when it came to handling Myla's worsening condition. I was particularly impressed with how she voiced her concerns to the doctors over a procedure she sensed may not have been in Myla's best interest. For me, as a communication professor, that was a lot of fun to watch. Emily also showed up yesterday to share encouragement and show the same concern for Myla that she's had all along. Denise also stayed after her shift and along with Christina W. offered some very helpful insights when Melissa and I were struggling to figure out how to proceed with our consent of Myla's central line surgery. We also weren't surprised to find that Stacy, Marian, and even Larissa from the Riley Outpatient Clinic who loathes seeing me with my camera but if you know what you are looking for you can find her among my pictures--even she was there to offer support. And once we got to the ICU, Denise told us that our new nurse, Lisa, is as good as they come, and she wasn't exaggerating. On Lisa's name badge is a small pair of red shoes that indicates that she has received the Red Shoes Award that Riley give for patient care that goes well beyond what's required or even expected. It didn't take long to figure out why she would have won that award, and I have often thought of how many of the nurses on the 5th floor are worthy of this type of award. Unfortunately, schedules didn't allow us to see all of our regular nurses, but their kindness and concern has been a major encouragement to us all. Christina A. included snacks for us on her personal grocery shopping list and brought those to us during our first week at Riley--a very nice gesture! Melissa and Julie combined to take the nursing profession to the next level, and Verity, who had just left to pursue new challenges after spending years on the floor was also a source of great encouragement. When I started this paragraph, I had no intentions of rolling out an Academy Awards type of thank you speech, but there are many other people that we could mention as well ranging from the cleaning staff to the doctors to the staff at Child Life services. Melissa's parents were also a huge help in keeping Raul Matthew occupied during a hectic and stressful day at the hospital.

Similarly related, thanks so much again for all of you who have posted encouraging comments to the blog during the last couple of days. I can't tell you how much it means to us to know that you all are concerned and praying. Of course, we already knew that you were, but it was especially meaningful to hear from many of you when we most needed the encouragement.

I want to close by announcing a formal end to the excitement we've had during the last couple of days. The format of this blog will now return to routine and somewhat boring blog entries with the understanding that "boring is good."

ICU Day 1

2008-03-15T15:01:00.000-04:00

11:53 PM (Friday): After a long discussion with the doctors and nurses, we consented to allow Myla to undergo a much needed surgery to take out her non-functioning central line and replace it with a temporary line that will also be placed in her chest. The surgery will begin sometime around 1:30 AM.

Pictures: For the complete set, check out http://flickr.com/photos/bluefork/. In the meantime, here are some "highlights":

More medical people than usual were in the room when Raul Matthew and I arrived this morning.
Here are some of the people who crowded our hospital room on the Hematology/Oncology floor. There seemed to be that many others waiting out in the hallway.
A chaplain was brought in to talk with us.
The head of the Riley Pediatric ICU was brought in to take over Myla's situation.
Myla not looking so with it.
Myla on her way to the ICU.
Melissa and I holding Myla's hands.
Myla on her way to get a CT scan for her intestines, and Melissa and I waiting.
On our way back from the second CT scan--this one for her head.
Myla on her ventilator.
Myla getting an ultrasound on her liver.
Myla getting an electrocardiogram.
The doctor who is about to do surgery on Myla's central line.
Pastor Treadway and his wife, Dawn, paid us a timely visit tonight.
Lisa is our nurse for this first night in the ICU. As with our regular nurses on the 5th floor, Lisa's service is first-class.

1:36 AM: Myla has been wheeled away for her surgery, which should take about 60-90 minutes. Here she is with her mask on for the short ride to the OR. Now that we have a few minutes to take a breath, I want to thank the many nurses from the hematology/oncology unit for coming down to the ICU to offer their support to Melissa. Many of them stayed well after their shifts were over to just be there an offer encouragement. Thanks to all of you! Thanks also to those of you who have left encouraging comments here on the blog during the past couple of days. This has been a boost to my spirit, even if I haven't had the time to write back. Some good news--Lisa encouraged us by saying that Myla's condition showed signs of improvement, and that she was now stable. That's the kind of big picture assessment that I found very encouraging. I can't tell you how many small picture assessments we found ourselves processing over the course of this long and difficult day, but the overall good news is that Myla is doing better now than she was yesterday afternoon. Even her coloring has started to improve, and her heart rate is now fairly steady at a much better 130 per minute.

More pictures:

Our empty ICU room after Myla was carted off for surgery.
Myla gripping Audrey's hand. (Audrey is one of our regular nurses from the 5th floor).
Some medical kit used to put the ventilation tube in Myla.
Outside the CT Scan room.
Stacy, our social worker, stopped by to offer her continued support.
Sally, another of our regular nurses, came down to the ICU to chat with Melissa.
Myla before being moved to the ICU.

3:40 AM: Myla is out of surgery and is doing well. The doctors were successful in taking out the old central line and putting in a new one. As it turned out, Myla had simply outgrown her old central line. It was installed back when she was less than 3 months old, and the growing she has done caused the tip of the central line to nearly withdraw from the artery it was in. Just a reminder--the central line is the tube through which Myla is given her chemo and medications. It could have been disasterous to have chemo pouring into her tissues and not into her blood stream, so it's a blessing that this was discovered. Further, the central line is also the way they draw blood samples from Myla. This way they don't have to poke her each time they need blood, which can be a traumatic experience for babies (and parents). So, the good news is that we now have a new and improved way to both give Myla medicine and to take the needed blood samples. Plus, I'm very glad that this is already over! It was a surprise to us that they would move her into surgery tonight, but this worked out well in the end. Further, Myla's vital signs remained strong throughout the surgery. That's a great improvement from earlier in the day. We learned tonight that the medical team performed sternal rubs on Myla during her first CT scan test because she was unresponsive.

The bottom line on today is that Myla has an infection that her natural defenses can't fight. That's because her ANC is down to zero due to the chemo. So, they will give her antibiotics in hopes of countering the infection and hope this stems the tide until Myla's immune system is back in action. The upcoming days and weeks will tell this story.

1:15 PM: Myla is sleeping and doing well. Nothing new to report. I was encouraged by all of the comments left on the blog, and I'll read them to Melissa today. :)

Intensive Care

2008-03-14T15:08:00.000-04:00

3:25 PM: I don't have time to offer much of an update, but it's been a difficult day and we have been moved to the ICU on the 2nd floor. Myla is due for a CT scan at 3:30 for a complication with her intestines. Her vital signs have not been stable today, and she is in critical shape. To complicate things further, they are not able to draw blood from her central line so they have to poke her each time they need to draw blood, which is a lot. Her fever stayed around 103 last night, and she is retaining a lot of fluid, which they are thinking is due to sepsis, an infection in the blood. We're just trying to keep her breathing and get her ready for the CT scan. They have also pumped her stomach to relieve some of the pressure from abdominal swelling. When they pumped her a couple of hours ago, her stomach looked relatively normal again, but in the time that's passed it's swelled up quite a bit again. Her hands and feet are very cold and shows signs of poor circulation. She is also off the pain medication because it was slowing down her respiration too much.

4:38 PM: Just got back from the CT scan, and the news there appears to be good. She has some blockage in her intestines, but it's not enough to call for surgery, which was one of the options on the table. Unfortunately, her vitals are still unstable. Her heart rate dropped to 40 during the scan, and the doctors have commented repeatedly that she is too lethargic too long after the sedatives she was given have worn off. "She's just not very awake" is what the doctor just said. Another doctoral fellow said that there is also some concern over the veins around her liver. More to come on that.

Doctor: "She just looks like she is tiring out to me."
Melissa: "Does that mean she is giving in to whatever is making her sick."
Doctor: "Yeah."

They are talking about putting her on a ventilator to help with her breathing.

The doctor just explained to me that the reason she is cold in her extremities despite the high temperature is that her body is directing its resources to the brain first and then to the kidneys. Basically, she is in a type of shock, in this case, septic shock. This is connected with the drop in blood pressure because Myla's fluids are leaking out of her veins and into the surrounding tissue, meaning that it's hard to keep the blood pressure up. One of the signs of this is that when you press on her foot, it takes 6-7 seconds for the color to return versus the normal 2-3 seconds.

4:57 PM: They are moving to put her on the ventilator "before she has an arrest."

5:00 PM: They are now calling for another CT scan, this one to look at her head. They are concerned that she has blood on the brain, or something.

6:06 PM: We just got back from the 2nd CT scan and are awaiting the results. In the meantime, they have called for an echocardiogram to take a closer look at her heart. It's as if her whole system is slowly crashing. We have also had some updates on the first CT scan, and her intestinal situation is worse than first reported. According to one doctor, her "belly is really sick. Really sick." More doctors will come in to talk to us about this.

6:16 PM: The word on the CT scan of her head is good--no problems there. The echocardiogram is in progress right now.

6:24 PM: Myla is being given a different medicine to boost her white blood cells in hopes that that this will help. Her primary doctor just warned us that it could be a few weeks before Myla is feeling well again.

6:30 PM: The doctor who did the echocardiogram said that "Her heart is doing what it should be doing." Her functions were a bit down, but that was expected given everything else she was going through. I didn't ask what these functions were, but the news sounded good, at least as far as her heart is concerned. Myla looks very different with the tube in her. She has so much tape on her face, and she kind of doesn't look human. Nurses also weren't able to draw blood from her foot because there wasn't enough blood pressure there. Nor did she respond to the pricks.

6:40 PM: Another doctor just explained that Myla's EF (ejection fraction) from the heart test was at 30% vs. 60% the last time they tested her just a few days ago. In other words, her heart isn't squeezing hard enough. So, more meds are being called for.

I'm not sure I'll get the chance to update again today, but I'll check back in when I get the chance. I'll post pictures when I get the chance, but the Internet connection here isn't strong enough for me to upload photos. I found it ironic that some of the darkest moments in life come when the lights are the brightest.

Fever

2008-03-13T09:41:00.000-04:00

5:05 AM: Melissa called me at the Ronald McDonald House to share that Myla had finally spiked the fever she had been flirting with during the last couple of days. The plan is to put her on antibiotics.

11:21 AM: Temp now at 104.2.

12:45 PM: Myla's heart rate had jumped to over 200 at one point--a side effect of the fever--but it's now back down in the 150 range, which might indicate that the fever is breaking. She is totally asleep right now, and the nurse came in to put a cool, damp cloth over her head. Personally, I thought it would have made more sense to put the wet cloth of Myla's head, but I'm not the medical professional here.

1:33 PM: Myla's heart rate is back up into the 170-range. The doctor came in to share that Myla's fever is likely due to an infection. As I write this, Myla's heart rate just shot up to 208. Anyway, the doctor stated that Myla may have an infection either in her mouth (due to the mouth sores caused by the chemo and the bacteria in her system) or around her central line--that tube that runs into her for chemo infusions and blood withdrawals. A blood sample was drawn early this morning for analysis, and we'll hear back from the lab when they know what the infection is. In the meantime, Myla is groaning like she did when she came out of the surgery for her central line. She is a very uncomfortable little girl, and as one of the nurses shared earlier, "This is the most sick she has ever been."

1:53 PM: The nurses just brought in a morphine pumping unit and attached it to the bottom of the chemo pole. This way, we'll be able to give her additional doses of morphine every 20 minutes as needed.

4:05 PM: Temp is now 101.3--good news. At least it's headed in the right direction.

8:34 PM: A lot is unfolding right now, more than I'll have the time to update here. Myla's condition has worsened and the doctors think she might be septic. Her fever has not gone down, her color is bad, she is retaining lots of water, and lots of other things. We've had a ton of doctors and nurses in the room tonight, and this attention on Myla is likely to continue. They are bringing and x-ray machine to our room to take a closer look at her lungs, and there is a lively debate about whether to use a bolus on Myla. That's probably misspelled, but it has to do with flushing her system, which apparently also runs the risk of flooding her lungs, etc. I'm not sure if I'll be able to update again tonight, but I'll try if things get slow and if the Internet is working. In the meantime, we would appreciate your prayers. Thanks.

9:21 PM: The Internet is hit and miss at the hospital tonight, so I might not be able to hyperlink images, but if you want to see pictures from today, click on http://flickr.com/photos/bluefork/. I'll try to post some specific images below if the computer will let me:

Myla with a wet washcloth on her head.
Melissa feeding Myla with a bottle, a first for her.
Nurses trying to see in Myla's eyes.
Myla opened her eyes to see the commotion of the double pole being assembled to bear the extra equipment she needs. Raul Matthew put the old pole to good use in the hallway.
And now for the warm-n-fuzzy picture of the day: A shot of Raul Matthew making friends with a stray cat at Jackson Morrow Park in Kokomo yesterday.

10:08 PM: Some of the doctors just stopped in after looking at the x-rays. Myla's lungs looked find, and that's great, but they also found that her central line had become dislocated inside her chest. From the way I understand it, the opening of the line is pushed up against the wall of her vein. The bottom line is that she'll need to undergo surgery to reinsert the line on the other side of her chest. We're not sure when this surgery will be, but we know at least that they will get her infection under control before doing this procedure.

10:22 PM: The ever helpful wikipedia provided this description of septic shock: "Septic shock is a very serious medical condition caused by decreased tissue perfusion and oxygen delivery as a result of infection and sepsis. It can cause multiple organ failure and death. Its most common victims are children, immunocompromised individuals, and the elderly, as their immune systems cannot cope with the infection as well as healthy adults are able. The mortality rate from septic shock is approximately 50%." The article went on to state: "Treatment primarily consists of 1) Volume resuscitation 2) Early antibiotic administration 3) Rapid source identification and control and 4) Support of major organ dysfunction." I see the staff here working on #1 by giving her the bolus, on #2 by giving her 3 antibiotics, and on #3 by taking her blood for analysis.

10:27 PM: Once the blood work comes back soon, then Myla will get 2 hours of blood transfusions followed by getting a diuretic called Lasix followed by 2 more hours of blood transfusions.

12:12 AM: Wow! Myla erupted into a fire hydrant of green vomit. How something so little could gush that much is truly amazing. Despite this and her high temperature, Myla is at least looking around and moving her hands for the first time all day.

1:40 AM: Things have been more quiet the last hour and a half.

100th Entry

2008-03-11T20:54:00.000-04:00

And it feels like it. Sorry for not updating this in a few days. Things have been relatively slow, and I've found myself completely unmotivated to update this thing, but I know many of you are checking this daily, so I'll continue to offer appreciative updates. I think I'm finding myself just done with this experience, so I haven't found much novel to write about lately. It's basically been one heaping after the next of the same ol' stuff. But, that's not all bad. As the doctors say around here, "Boring is good."

Myla's chemo infusions for this 4th round ended on Monday morning. She had only 7 days of chemo this time around, and so she now finds herself waiting for the chemo to take her immune system down to zero before it takes a couple of weeks to rebuild. Unfortunately, her side effects are running ahead of schedule and she has been experiencing mucositis since we've been here. This basically means painful mouth sores and lots of mucus running the entire way from mouth to, well, you know. Last night, she was teetering on spiking a fever, but thankfully didn't cross that line. We'll be keeping a constant watch on this for the next several days.

Some pictures from the last few days:

Myla with a nurse.
A cafeteria worker here at Riley who wanted me to take her picture. I replaced the boring wall with a different background information. Yes, I too was bored.
It's finally beginning to feel warm enough to take pictures outside, so I took Raul Matthew downtown Indianapolis. If you are bored, then you can check out some of the recent pictures at http://flickr.com/photos/bluefork/
And speaking of blue, here's a shot of the blue chemo that Myla got during 4 days of this visit. I came to the hospital at 4 AM to get this shot. :)

That's all that's going on here. I plan for the next few days to be boring as well. But if life gets exciting, I'll be sure to offer new updates. Thanks again for all your prayers. And a special thanks to Sarah Willis of Bible Baptist Church for the two blankets she made for the kids!

Round 4, Day 4

2008-03-06T17:54:00.000-05:00

Highlights from the day included:

Attending the Dr. Suess activity in the atrium of the hospital.
Myla getting a blood transfusion.

Here's also my favorite picture of Myla from the last few days.

Round 4, Days 2 & 3

2008-03-05T17:44:00.000-05:00

Not much to report here, and that's good. The chemo seems to be going well, and we are enjoying the ease of life that goes along with having a bathroom in our hospital room. On Tuesday, I watched a dedication ceremony for the new Riley expansion project featuring suits and the local media, and I spent most of Wednesday back in Kokomo doing the teaching thing.

Round 4, Day 1

2008-03-04T00:09:00.000-05:00

Yep, we're back at it again. I'll get you started with some pictures.

Melissa carrying Myla to the car.
Myla arriving in style in her fuzzy hat.
In the waiting room (1 & 2).
Myla having her echocardiogram (1, 2, & 3).
To the waiting room of the hematology/oncology MSA.
Blood pressure, height, and weight. Oh, and hat size.
We rode the elevators (1, 2, & 3) before heading to our room, which turned out to be the same room we were in for Myla's first round of chemo.
Myla (1 & 2) before her chemo and our dinner.
A few more shots of Myla (1, 2, & 3), Myla with her grandpa Byrom (1 & 2), our room at the Ronald McDonald House, and the beam we signed that will be placed atop the new Riley Hospital expansion.

I skipped out on teaching my classes today so that I could help move us into the hospital. Speeches were scheduled for these classes, so I have about 3 hours of speeches to grade via DVD. Exciting. :)

Break

2008-03-03T01:56:00.000-05:00

We spent a wonderful break at home and caught up on some much needed rest. The hightlights of the week included some wonderful meals organized by Angie Gollner and the Kokomo Area Schools at Home (KASH) as well as a visit from the Canezes. To catch you up on the happenings, here are some pictures from the break:

I have to start with these: When cat yawns get out of control.
Raul Matthew having fun with medical equipment in the kitchen.
Myla on a mattress.
Myla smiling at Raul Matthew.
Myla looking over Melissa's shoulder.
Myla asleep over Melissa's shoulder.
The lunar eclipse.
Myla with a big smile.
Some of the great food caring others brought to us: pizza, "Mexican" lasagna, enchilladas, some great chocolate dessert, cake, fruit, potatoes and carrots, and much more! I had planned to take pictures of everything we got, be there were times we ate first and thought about pictures later. :)
Some of the food I had a chance to cook from a $3 Cuban cook book I got a while back: black beans and rice, sofrito chicken, some other chicken I made (and the marinade)--can't remember the name, and cinnamon rolls. After looking back at all these pictures, I am hungry again!
Melissa
Melissa with her hand on Myla's head
Myla was entertained by Britley, Whitley, and by Raul Matthew, who did a magic show for us.
During the last weekend of our break, we got a visit from the Canezes. Here are some shots of Lucy holding Myla (1, 2, 3, 4, & 5), my father Raul holding Myla (1, 2, 3, & 4), and some other shots of us together (1, 2, & 3). We also played games at home (1, 2, & 3) and the 3 Rauls headed to the Auto Heritage Museum (1, 2, & 3), Shipshawana junk show, and Starbucks.

Bone Marrow Test at the Riley

2008-02-29T22:40:00.000-05:00

We headed into the Riley Outpatient Center for another bone marrow test that would tell us how effectively Myla's chemo treatments have been working. To make a long story short, she is doing quite well, and the chemo appears to be working. So, that means that we'll continue with rounds 4 & 5 of the chemotherapy versus undergoing a bone marrow transplant. Here are some pictures:

Driving to Indy on a cold, winter morning.
In the waiting room (1 & 2).
Temp, height, and weight.
Myla waiting before getting her blood drawn.
Myla got tired of waiting and fell asleep on Melissa (1 & 2).
We then moved to the procedure room for the bone marrow aspiration (1, 2, 3, & 4).
Here are some random shots after the procedure: 1, 2, 3, 4, 5, 6, 7, 8, 9, & 10).
Melissa carting Myla across the parking garage.

Home at Last

2008-02-21T15:16:00.000-05:00

Round 3 of chemo is finally over! We returned home yesterday and plan to spend the next few days catching up on some badly needed rest.

Next on the agenda is another bone marrow test on 2/29, followed by readmission for round 4 beginning on 3/3, we think.

In the meantime, the blog will get a rest during our break unless there is something urgent to report. I likely will post some new pictures at http://www.flickr.com/photos/bluefork/ from time to time.

Thanks from all of us for your continued prayers and support!

Raul

Round 3, Day 23

2008-02-19T20:25:00.001-05:00

We might be headed home tomorrow. :)

Round 3, Day 21

2008-02-17T17:30:00.001-05:00

First, some pictures:

First floor of the Riley Outpatient Center (ROC)
Myla in one of her jailbird outfits. If you select the original size, you can see me reflected in her eyes. I could expand on this metaphor, but I'll leave that to the country singers.
The remote in our room.
What happens when you use too much bleach in the washers.
Raul Matthew lost a tooth today.
The construction plastic getting torn by the high winds today.
Thou shalt not covet thy mother's cookie.
Myla sleeping

Thanks again for your continued prayers. Myla continues to recover well from this third round of chemo, and keep watching each day for her ANC to begin rebuilding. It was 20 on Friday but has been 0 the last 2 days.

Last night, things went south for one of the little ones on our floor, leading to more drama than a Shakespeare festival. It was interesting to watch the nurses swing into crisis mode. I've had the privilege of observing them up close for a few months now, and I can say without reservation that the nurses here on the 5th floor of Riley Hospital are professionals in the truest sense of the word. Sadly, the child was moved to another part of the hospital. Within a short time, their room was cleared out and prepared for another patient who came that same night. All that was left was this Valentines Day decoration that had been ripped from their door during the commotion, only to be left behind in the corner of the hallway.

Round 3, Day 20

2008-02-16T13:35:00.000-05:00

Wow...I hadn't realized that my last update was on Tuesday. In this case, no news has been good news, and there is the possibility that we might head home sometime next week.

Here are some recent pictures:

Myla holding her hands together
Myla's foot peeking out of the crib
Melissa smiling at Myla
Myla studying Grandma's necklace
Myla with wide eyes
Thanks for all the Valentine Day cards!!!!
Melissa
Myla reaching for Melissa's bottled water
Myla smiling and looking all happy
Some odd light source in our sink

Round 3, Day 16

2008-02-12T19:42:00.000-05:00

Overall, things appear to be going well today. Myla doesn't have a fever, and she's done fairly well at keeping her food down. There is also some talk that we might be headed home in about a week if her ANC starts to go up soon. So, that's the good news.

We are working through a couple of concerns, however.

First, there is still talk of putting Myla on a supplemental nutritional program that would be given via IV, and there is also the possibility of giving her formula through a tube that would run through her nose. This is still just talk, and the decision will be based on Myla's ability to gain weight over the next couple of days. There are potential complications with the nutritional plans, so we are doing what we can to keep Myla fat and happy.

Second, we lost our access to the shared bathroom in our hospital room when the patient next to us moved to another room. Our room shares a bathroom with the room next to us, but policies state that only patients have access to the bathroom. Despite this, the previous patient had been kind enough to allow us to use the bathroom anyway. Unfortunately, she was moved to a different room this morning, and a new family in need of isolation was put in there. This complicates things a bit because anytime Melissa needs to use the bathroom, she has to hand Myla off and walk OUTSIDE our unit to use the public restroom that is shared not just by the family lounge on the 5th floor, but also by any parents and visitors of patients in the Stem Cell unit located on our same floor. There is a closet in the laundry room located off the family lounge that serves as the only shower available for Melissa, and the Stem Cell unit, and any visitors, etc.

Granted, in the grand scheme of things, this isn't a major thing, but it does make our time here a bit more difficult. That's not to mention the raw sewage that pushed its way into my shower at the Ronald McDonald House or the fact that there are now NO FORKS--metal or plastic--over at the RMH at the moment. During the first two trips, I had a box of plastic forks with me, so maybe I just didn't notice glitches like this as much. The House even sealed off the kitchen area that we share with 5 other rooms because someone (or someones) left dirty dishes in the sink...again. Not only did they tape the area off like a crime scene, but those who transgressed the boundary discovered that the House had also removed all the dishes and cooking ware from the kitchen.

Really, I'm not complaining...just describing a bit what the last few days have been like. I guess we are feeling a bit unsettled and are looking forward to when we can get back home to our own bathroom, and kitchen.

Despite all this, the medical staff at Riley has been great in helping us develop answers to our many questions. And the Ronald McDonald House...they called a plumber. So, really, I can't complain.

Melissa shared with me that Myla is in the bottom 3% of babies for weight, but around 50% when it comes to length.

And now, for some pictures:

Raul Matthew and Myla.
Myla "pointing" toward a toy.
Myla getting cozy with Melissa.
The room next to us where our "neighbor" moved out.
Melissa and Raul Matthew entertaining Myla.
Myla's first tooth coming in!
Myla chewing on her fist.
Myla up close.
Melissa holding Myla and new toys from the Magic Castle. [The Magic Castle is a cart that volunteers push around the hospital and use to hand out toys to the kids.]
Here's our car this morning after the huge snowfall we didn't get.
A couple more shots of freshly fallen snow on the burned out vehicles, and here's a tire from the car.

For fun, here's a link we can relate with: "You know you're a parent of a kid with cancer when..."

Finally, a special thanks to the faculty and staff of the School of Business at IU Kokomo for their generous gift and kind card!

Round 3, Day 14

2008-02-10T19:12:00.000-05:00

Just a quick update today. Myla appears to be doing a lot better today. She is now off the heavy antibiotics and a blood test revealed that there is no infection left in her blood stream. Her fever has passed, and the redness in her eyes has largely gone away. She seems to be eating okay, but they are still keeping a very close eye on her weight.

A few pictures:

A car fire in the parking lot of the Ronald McDonald House last night.
Myla
During a walk we took last night in the hospital.
Raul Matthew and Myla.
Myla doing the RCA dog pose.
A conference I spoke at on Friday in the IT building of IUPUI.
Artwork by Raul Matthew.
Raul Matthew looking at the railroad tracks in Lafayette, Indiana.

We've made it through what has been our most difficult week at Riley. We'll likely be here another 2 weeks or so before heading back for a short break of 7-10 days.

Tonight, we are ordering Chinese food for dinner!

Evening Update

2008-02-07T21:12:00.000-05:00

Today has been a difficult one, and Myla wasn't able to keep things down again tonight. Earlier in the day, Melissa tried to feed Myla with a bottle to see if she could get more fluids down her that way. At 9:15 PM, we still have a couple of hours to go before Myla can have more medicine to prevent nausea, so we are hoping she can keep things down until then, otherwise the medical staff said they would have to "do something they don't want to do." We didn't ask what; we're just watching the clock.

Round 3, Day 11

2008-02-07T06:58:00.000-05:00

This is turning out to be a rough week for our little Myla (and Melissa). The week started with us struggling with whether to treat the redness in Myla's eyes (chemical conjunctivitis) with saline eye drops or the more potent steroid drops. The redness has largely passed, so we're thinking that our idea to persuade the medical staff to give Myla the steroid drops was probably a good one. In even the recent past, steroid drops were given by default to all patients taking high doses of the chemo drug called Ara-C (or cytarabine), but Riley Hospital backed off giving steroids after the potential of long-term eye damage was brought to their attention by an ophthalmologist who warned of the increased potential for getting cataracts and glaucoma later in life. Working through how to treat Myla's conjunctivitis was largely the preoccupation of Monday and Tuesday. (Oh, and we also celebrated Melissa's birthday on Tuesday). :)

Yesterday, Melissa was awoken first thing in the morning to be informed by our nurse that the doctors plan to put Myla on a regimen of supplemental nutrition. Although Myla has gained weight overall during this trip, her eating times and "output" have both declined this week. She also threw up a good portion of what she had eaten last night, so that didn't help matters either.

Myla's condition got more serious this morning when she spiked a fever--the bane of all patients on chemo. Myla's ANC is also now at zero, which means she can't fight an infection, and it's probably an infection causing the fever. Therein lies the problem. Myla is now hooked up to the IV pole again. She had been "free" for the last few days, but she'll be back on during the next few days for the antibiotic treatments.

I'll update this as I get a chance.

Round 3, Day 10

2008-02-06T12:37:00.000-05:00

And now, for some pictures:

Here's our new hospital room.
Melissa turned 29 again yesterday.
Myla looking much better.
Raul Matthew celebrating Super Tuesday.
Myla suffering the indignities of being human.

Round 3, Day 9

2008-02-05T17:40:00.001-05:00

Thanks for your prayers....Myla appears to be doing much better today. Tomorrow...pictures!

Round 3, Day 8

2008-02-04T13:20:00.000-05:00

Today finds us with two interesting developments. First, we are being moved to a different hospital room because a new patient in need of isolation needs our current room. (Some rooms are set up for isolation, others aren't.) Second, Myla's redness of the eyes worsened throughout the night and Melissa just told me over the phone that Myla won't open her eyes if the lights are on. Here's a picture from last night when we started to take more notice of her symptoms. We suspect that the redness is due to the high dosage of Ara-C, one of the chemo concoctions she was given in a dose that was nearly 12 times stronger than what she had during the first two rounds. The Ara-C causes a type of chemical conjunctivitis that affects the eyes. From what I read online, it's like having Clorox sprayed in your eyes. But if you look at the picture, you can see that she has a rash-like redness on other parts of her head as well. We're not sure if that is also chemical conjunctivitis, or something else such as an allergic reaction. Hmmm.

I don't have time to create links to other images, but you can see some additional pictures from the last couple of days at http://www.flickr.com/photos/bluefork/

Round 3, Day 7

2008-02-03T22:57:00.000-05:00

Myla has some redness around her eyes that flared up today. She also has a rash that comes and goes on her head. Myla will be given some extra eye drops to help with the irritation in her eyes, but we'll just have to watch to see what happens with the rest of the rash.

Round 3, Day 5

2008-02-01T19:26:00.000-05:00

We awoke to find that the lion that was supposed to be last night's big snow storm turned out to be nothing but a malnourished alley cat. Here's the extent of the precip we got at the Ronald McDonald House. When Raul Matthew and I arrived at the hospital room this morning, I noticed immediately that Myla looked oddly different from the way she looked just the night before. I told Melissa, "Myla looks drugged--the same way she looked when she was under anesthesia for the bone marrow procedure." Melissa had made the same exact observation earlier in speaking with the nurses. This picture really didn't capture it, but there was something different in Myla's eyes. Her ANC is actually on rise--it's over 2,000 now, but her hemoglobin had fallen slightly from the 8.7 yesterday to 8.5 this morning. Her responses were slow, and she looked pale, so after some discussion with members of the medical team, a blood transfusion was ordered.

Now that the infusion is complete, her color has returned, but she still isn't acting her normal happy self. We're thinking that this is just the effects of the heavy chemo finally kicking in. We've just got two more hours of chemo tonight (8:30 - 10:30) and one more hour in the morning at 8:30.

To keep us entertained, we are watching part 3 of the PBS series, Tubapalooza. You can find the following description online: "U.S. Congressman (D-OH) and accomplished tubist, Dennis Kucinich, tours the exiting world of tuba music with stops in Moscow, Sydney, and Amsterdam before performing a repertoire of patriotic tuba solos at the Cleveland Symphony Orchestra Hall. A 20-year member of the Power to the People Brass Band, Kucinich brings the tuba to life in this critically-acclaimed series that explores the history and social impact of tuba music across a diversity of cultures. This foray into the exotic world of the concert tuba is brought to you by a generous grant from the John D. & Bubbles T. MacArthur Foundation." Tubas really aren't my thing, but the series has been fairly interesting so far. I'm glad they make programs like this for viewers like me.

Round 3, Day 4

2008-01-31T17:32:00.000-05:00

Some pictures...

From yesterday, I happened to be home at the time that "construction" began on SR 26 just outside our place. Seven people have died at the entrance to our apartment complex, so the hill seen here will be leveled. The loud noises from the earth movers will keep the cats entertained for weeks, I'm sure.
Myla showed an interesting range of emotions when a couple of nurses stopped in last night. Here's a shot of Myla asking, "Why me???" (I was going to say these were "a couple of her favorite nurses," but all our nurses have been favorites so far.) A moment later, Myla was entertaining us with her smile and laugh.
Raul Matthew holding Myla.
Myla asleep and Melissa pretending to be asleep.
Myla's eye drops.
Myla's finger nails.
Socks for Myla and chili spices from Raul and Lucy. Thanks!
The new door for an old colleague. Wait, I meant former colleague. :)
Inside the new student center at IUPUI where I spent part of the afternoon writing a reference letter for Ashley, my advisee, who is applying to grad school at Purdue.
Today's lunch, a rice bowl.

Round 3, Day 3

2008-01-30T09:07:00.000-05:00

As I drove to Kokomo this morning to teach my classes at IU Kokomo, I watched the temperature drop from 9 degrees in Indianapolis to 5 degrees in Kokomo. Despite the temp, I took mental pictures of the cool things--literally--that I saw on my drive into school, things like old barns awash in the light of the rising sun and rusty farm equipment cloaked in a veil of glistening frost. I was tempted to pull over and take a few shots with my camera, but the motivation simply wasn't there. Meanwhile, I'm dressed like a tree--brown pants and green sweater--because I lost a contest to Raul Matthew last night.

Some images from the last couple of days:

Nurses double-checking Myla's info before starting the chemo.
Myla smiling in a pink outfit.
Myla's first infusion of chemo during this 3rd round.
The exciting world of giving eye drop dropping.
Raul Matthew's drawing of a nuclear submarine.
Our room at the Ronald McDonald House (another view). Here are additional views out our window, out our door, out the main door, and into our bathroom.
Myla in a giraffe outfit.
Raul Matthew's chemo pig, complete with IV pole.

Round 3, Day 2

2008-01-29T21:32:00.000-05:00

Today finds Myla doing well overall. She seemed to be developing a rash of some sort--perhaps a reaction to something she was given. Thankfully, this went away, leaving the evening thunderstorms that passed through as the only major excitement worth mentioning here. Thanks again for your prayers.

10:58 PM: Melissa handed Myla off to a couple of our nurses so that she could walk Raul Matthew and I to the elevator. When she returned to the room, they commented that Myla was acting a bit strange, so they'll keep a close eye on her throughout the night.

A few hours ago it was 52 degrees. Now, it's 20 with a wind chill 0f -4, and it's supposed to drop into the single digits by 8 AM just in time for my commute back to Kokomo.

Round 3, Day 1

2008-01-28T19:29:00.000-05:00

Today was the big day for starting Myla's 3rd round of chemotherapy--a round that the doctors are calling "Intensification 1" because the chemo infusions in these last three rounds are more intense.

My pictures are uploading slowly tonight, so I'll give you a few visual appetizers to hold you over until the rest of this blog entry is linked to today's photos.

Myla in her play seat.
Myla biting her lips because of teething.
The remains of my dry cleaners that recently burned down.
Melissa kissing Myla's cheek.
Myla looking content.
A cool door. (Yes, I'm still waiting for Myla's pictures to upload.)

After teaching class this morning, we loaded into the Volvo and drove South from Kokomo to the Riley Hospital for Children in Indianapolis. We stopped first at the ROC--the Riley Outpatient Center. In what has become a familiar drill to us, we served time in the waiting room on the 3rd floor before we headed into the clinic area for the measurement of Myla's blood pressure, length, and weight.

We then headed back to room 10 where a nurse came in with the medical supplies needed to take Myla's blood for the testing of her ANC (absolute neutrophil count). After changing the dressing on Myla's central line, it took a lot of work to draw blood from Myla's central line because of a flap of clotted blood (or something) had developed over the interior opening of Myla's central line. The flap is pushed open when infusions are pushed through her line, but it closes and forms a barrier when blood is sucked back the other way. There is medicine available to help dissolve this flap, but after some additional work and creative position of Myla by Melissa, the nurse was able to draw the blood needed for the ANC test.

Meanwhile, we waited in the room until a doctor we hadn't seen before came into the room to announce that Myla would be admitted based on her excellent ANC of 1,800. That's good news, because it means that the leukemia is not crowding out her good white blood cells. The last time we were admitted, her ANC had only risen to the 700 range before sinking to the 300s on the day of her admission. So, that's got to be a good sign. We then headed down the hall, up the service elevator, and into the Childrens' Cancer Center located on the 5th floor of Riley. We were assigned a room of our own, which was great because we didn't have to share a room with another sick child.

We weren't sure whether Raul Matthew and I would be able to get into the Ronald McDonald House tonight, but just past 7 PM we got a call telling us that a room had opened up.

It's almost 8:30, and Myla's chemo will be starting in a few minutes. She'll get two hour-long infusions, back to back, every 12 hours for the next five days.

T minus 1 Day

2008-01-27T14:02:00.000-05:00

Melissa is putting the final touches on this home trip by napping with Myla on the couch. Meanwhile, the two cats are asleep and Raul Matthew is looking for something for something quiet to do that will keep him entertained without waking up those who slumber among us.

Sometime today, we'll get more serious about packing for the month ahead. We'll try to travel light for our trip down tomorrow, and that means my Lodge cast iron skillet stays behind. Or, maybe not.

That's all that's going on here at the moment.

I'll be back tomorrow evening sometime to give a photo-infused account of the day's activities. I'm getting used to the standard sequence of shots during our trips to Riley, including shots of the drive to Indy, us in the waiting room of the ROC (Riley Outpatient Center), Myla getting her blood pressure taken, then measured for length, then weighed, then escorted to a small room where she'll get her blood drawn, then a shot of us waiting in the room, then the arrival of the IV pole, etc..

All of that, and MUCH more, in tomorrow's blog.

Carry On

2008-01-24T10:27:00.000-05:00

That's the word from Dr. Kumar, who called to inform us that Myla will NOT be having a bone marrow transplant, at least not now. Instead, she'll continue with the three remaining rounds of chemo, and if the leukemia is still present after the 3rd round, then a transplant may be called for.

Even though they don't know if the abnormal cells the pathologist spotted were leukemic, those cells were included, as it turns out, in the 2-3% level of blasts they reported on Monday. In light of this, the medical staff didn't think it would be worth it to subject such a young child to the drastic step that is a bone marrow transplant, especially because Myla doesn't have an exact match for the marrow.

That's the update for now, and I find myself somewhat relieved. Ideally, we could proceed with a bone marrow transplant with an exact donor match, but let's just pray that this third round knocks the leukemia out for good.

I had an interesting thought last night. Raul Matthew is not a match, but what if another sibling who is not yet born turned out to be a match? If Myla makes it through these five rounds of chemo, there is still a good chance that she could have a relapse within the next five years. By then, perhaps her new sibling would be old enough to be a donor. The chances that this new sibling would be an exact match would only be 25%, so the odds aren't great, and going through another pregnancy with our situation is a bit crazy. It's something to think about, though.

The home nurse came this morning to take Myla's blood. Her numbers are 3,200 for the white blood cell count, 10.8 for hemoglobin, 442,000 for platelets, and 544 for ANC.

Still Waiting...

2008-01-23T22:16:00.000-05:00

We haven't heard any news back from the medical team about which way they are leaning, but neither did we expect to, at least not today. Maybe tomorrow, though.

I spent some time today reading through some of the blogs kept by parents of other children who have had or still have AML. I'm including some links to those sites below because they offer a fairly good picture of what Myla might be in for. These blogs might be helpful because we can see what other parents were thinking when they were in the same exact spot we are. Of course, not all situations are the same, but some of this reading might give us an edge as we evaluate the suggestions of the medical staff. Melissa and I are both leaning against doing a bone marrow transplant if it turns out that Myla's condition is only borderline. In other words, if there isn't a strong reason to do the transplant, then we think continuing with the current protocol of 5 chemo rounds would be best. And now, for the other blogs:

Some children who are surviving:

Joshua
Robynn
Jacey
Paul

Some children who didn't survive:

Abby
Alina
Amanda
Anthony
Chassidy
Christopher
Dustin
Jacob
Jayden
Katja
Lorina
Mason
Sasha
Steven
Summer
"Wild Bill"

Critical Update

2008-01-22T17:17:00.001-05:00

5:11 PM: Melissa just heard back from Dr. Kumar who had called to pass along the report from the pathologist regarding the bone marrow test that Myla had yesterday. They spotted some abnormal monoblasts that could turn out to be leukemia, and that would mean that the overall level of blasts in Myla's bone marrow might be above the 5% they had hoped to find. The bottom line is that we don't know for sure, so Dr. Kumar is likely to call for another bone marrow aspiration in addition to a bone marrow biopsy, the latter which Myla hasn't had before. The biopsy would take part of the bone (not just the marrow), which would give them a better read on what is going on with the bone marrow production. We'll likely take her in for these tests next Monday.

The good news is that Dr. Kumar's gut feeling is that the chemo is still probably working for Myla. Dr. Kumar said that the blast percentage had generally been in the 10-15% range for those patients who did not respond well to the chemo treatments. So, Myla appears to be a borderline case. On the other hand, she is also a baby,which introduces more uncertainty into the mix.

Where does that leave us now? We are waiting to hear back from the head of the clinical study that Myla is participating in. He is in Kansas City. Never met him. Yet, he, along with the medical staff at Riley, will decide whether Myla continues with the remaining rounds of chemo, or whether she should undergo a bone marrow transplant. This is an extremely important decision.

Melissa and I both request your increased prayers during the next few days as this important decision is being made. This truly is a critical time. If you have followed this blog for a while, you have probably picked up that I avoid writing in a "crisis" mode. [Ironically, I just got another call from Melissa informing me that Raul Matthew's finger came very close to being super glued to the nose of one of our cats. Now THAT could have been a crisis! I'm not sure who would have come out on the losing end of that one.] But back to the serious stuff--if you are the praying type, we could use those prayers about now. Praying that the medical staff has the insight and wisdom needed to make the proper decision would be an outstanding request to make. :)

Meanwhile, life continues, so here are some cute & cuddly pictures of Myla that I've taken during the last few days:

Myla leaving the hospital under the cover of night after finishing her 2nd round of chemo.
Myla with Papa, her grandpa.
Myla playing with her thumb--she has just discovered her hands within the last couple of weeks.
Myla smiling.
Myla just being Myla.

And now, for the pictures from yesterday's trip to Riley Hospital. We left on a cold winter morning that found me having to drive behind ice-caked semis while also dealing with this group in the back seat. After serving time in the waiting room, we headed back to where Myla had her blood pressure taken followed by being measured and weighed. We then waited in another waiting room before we moved to a private room where blood was drawn from Myla's central line. After waiting for about an hour for a pain numbing cream to do its work, we headed to the procedure room where Myla was given some additional drugs to make her sleepy before she got another round of chemotherapy in her spine. Next came the bone marrow aspiration--the part where they draw marrow from her bones. After her procedure, Myla was both very groggy and VERY active. (I need an insurance estimate to repair the damage to the moon roof during our drive home last night.) After the procedure, Melissa helped the nurse change the dressing on Myla's central line before putting her in a new outfit that my mom sent us. Thanks, Mom.

During the procedures, I took a few construction pictures out the window to mark the occasion. Get this, the first roofing panel on the south side of the new 10-story Riley Hospital for Children building was being installed by workers exactly as Myla was getting chemo in her spine. Here's what the roof looked like when we left. I know, the roof thing isn't cute and cuddly, but the roof will always have a special meaning to us. Or, at least to me. I'm not sure Melissa gets into coincidental sentiments. :)

Back Home for Another Week

2008-01-21T16:03:00.000-05:00

We returned to Riley Hospital this morning for a bone marrow test on Myla that would tell us how effective the second round of chemotherapy was. This test was significant because the results help determine whether Myla will move forward with the remaining 3 rounds of chemotherapy (preferred) or undergo a bone marrow transplant (not preferred). Thankfully, the results showed that Myla's leukemia is in remission, and that's good news! Her bone marrow still contained 2-3% of the leukemia cells, and any reading under 5% is good. In fact, one doctor told us that normal people might have 2-3% leukemia cells in their marrow. Interesting.

What do the results mean? It means that the chemo protocol is working. What it doesn't mean, however, is that Myla's chances for survival are any better than when she first started her treatments. Dr. Kumar was careful to reiterate that Myla still has a 50-50 chance of surviving AML, and this will still be the case when we are dismissed from the hospital following her final round of chemo in May or June. In other words, half the children who survive the chemo treatments and leave the hospital with the disease in remission live long enough to see their 5th birthday.

Later in the week we will find out if a bone marrow transplant is in the plans.

Myla's ANC today was 714, which was a bit lower than what the doctors would like to see as she heads into the 3rd round of chemo, so they sent us back home with the choice of being readmitted on Friday or the following Monday. We decided on Monday to give us a few more days of family time.

The next round of chemo involves only 5 days of chemo infusions, but the chemo is more intensive--the doses are not only higher, but they are flushed into her system much faster than the previous two rounds. The doctors talked to us today about the higher risks that Myla might face when the next round starts, and while they are serious, we are cautiously optimistic.

When I get the chance, I'll post some pictures from today. Thanks again for your concerns and prayers. Thanks also to BBC for the gas cards that Holly Foster dropped off for us!

January 16

2008-01-16T17:10:00.000-05:00

I flew out the door in a rush this morning only to find the Griswold cloaked with a thick coat of wintry frost. Frost isn't a big deal usually, but this limo wannabe has more glass than the Crystal Cathedral. Despite this, I made it to class on time, and I was surprised to find that my students had taken up a generous collection to help with our gas expenses! That was very kind of them, and of course, they all get As for the semester. Thanks so much!

This class is part of the Freshman Learning Community experience we have at Indiana University Kokomo, and that means that this group of about 40 students takes 4 classes together--2 in the fall and 2 in the spring. There are three of us who teach the course, and this semester we are offering a course in public speaking and another on special topics in the humanities, the latter of which deals with issues such as immigration, the impact of emergent communication technologies on society, and various issues relating to persuasion and social influence. Good stuff, all of it.

We started the semester in the humanities course by reading through Stephen Bloom's excellent ethnographic account of the immigration issue in Postville, Iowa. His book, entitled, Postville: A clash of cultures, tells the true story of what happened when a group of Hasidic Jews invaded the sleepy town of Postville to found the largest Kosher meat processing plant in the country. Since the book was written in 2001, Hispanics have entered the mix and now outnumber both the original locals and the Jews. It's an interesting read, and rather than just discussing the book in class, I gave students the task of putting on a play illustrating the key themes in Bloom's narrative. With roughly 40 students and a limited time frame for putting it on, this was a daunting task. Thankfully, one of our students, Zach, stepped up and provided some timely and much needed organizational leadership. Within a few minutes, the class was divided into groups dealing with plot drafting, character development, and stage management, among others. It was fun to watch Zach help his classmates take ownership of the project, and several other leaders also emerged throughout the class period. Sometimes my most effective teaching occurs when I'm out of the way. :)

Today finds Myla being her normal, happy self. I like to make her smile and sometimes giggle by holding her up in the air and saying, "My" (swooping her to the right), "la" (swooping her to the left and pausing for effect), and then dropping her a few inches on "pop!" It's an interesting experiment in finding that fine line between fun and fear--the same cognitive process used in designing a theme park thrill ride, I guess.

Thanks to Karla, my colleague, for the Japanese seasonings she brought back from her recent trip to Hawaii. The red pepper mixture has me thinking of things to pan sear, and there is enough Wasabi powder to make several milkshakes. Every work environment should have a Karla, but most aren't that blessed.

First Full Day at Home

2008-01-15T19:15:00.000-05:00

We made it home just fine last night, despite encountering a snow storm that made the highway almost impossible to see for several minutes. A lot of fun that was!

Myla is doing well. :)

Headed Home!

2008-01-14T15:23:00.000-05:00

The parole board at Riley has voted to release us, so we'll head back home to Kokomo this afternoon after Myla finishes a blood transfusion. As we come to the end of this second round of Myla's chemotherapy, we find ourselves thankful once again for your prayers and the encouraging comments you have sent us! This support has been a great boost to us, and I know Melissa has especially appreciated hearing from those of you who have posted comments on her Caring Bridge website.

It's been said that "timing is everything," and Myla is starting to teethe just as we are heading home. That means that she is likely to get a fever, so there is a chance that we might end up back here in the next couple of days after all. (If she gets any fever over 100.5, she must go back to the Cancer Center after stopping a local hospital to get started on antibiotics). On a humorous note, Melissa said that when mothers ask her what pain killer she gave Myla to deal with the pain of teething, she is likely to tell them, "Morphine." (That's what the hospital would likely give her as part of treating the fever.)

In about an hour, I will attempt to make an uneventful exit from the parking garage. This should be no big deal, because I do this every day. But for whatever reason, strange things have happened during the previous two times we have left Riley as a family to head home. Those of you who have been reading this blog know that I broke the rear axle of our green car the first time we headed back from Riley, and I killed the battery on the Griswold by leaving the lights on last time. So, today I have a third car--the Volvo, and it too is parked on the top floor of the parking garage, just waiting.

Day 25

2008-01-13T12:33:00.000-05:00

Melissa got the news from Dr. Kumar this morning that we might be headed home tomorrow!

Day 24

2008-01-12T19:01:00.000-05:00

Okay, so my failed attempt at prophecy didn't work out on Thursday, so we found ourselves still in the hospital--but with good news! Myla's ANC had risen to 17 by yesterday, and that means that we might be headed home in a few days! As Melissa pointed out on her Caring Bridge site, today’s report put Myla’s ANC back at zero, but that doesn’t mean much because this number came from the lab the hospital uses on the weekend. Apparently, the results from the M-F lab are more reliable.

Raul Matthew and I headed up north for the day. We spent the afternoon at a basketball tournament at Peru High School with my friend, Mike, and his family. Mike’s nephew, Kyle, starts on the Maconaquah 7th grade boys team, which won the tournament by downing Peru in the final game. After the win, Mike, Raul Matthew, and I headed to Dairy Queen for lunch, and while there, Mike gave us a monetary gift sent from congregation of the Bethany Evangelical Free Church in Rensselaer, Indiana. Thanks so much for your generosity!

We then headed back home to drop off some things and spend a few minutes checking on the cats before heading back down to Indy. As it turned out, neither of us felt like leaving home, so we decided to spend the night here in Kokomo for a change. Raul Matthew has been watching some of his favorite videos tonight and I've done laundry and done some catching up some on e-mails.

Day 22 (Prophetic Version)

2008-01-11T01:24:00.000-05:00

Note: This post was written prior to Thursday. This is an attempt at prophecy.

The strangest thing happened today--the medical staff came in this morning to inform us that Myla's original diagnosis had been a bad mistake. She's perfectly fine, and I'm writing this on our way down to Disney World with our cats, where the hospital will be putting us up in the Magic Kingdom for the next month at their expense.

Anyway, this has all been an interesting experience, and we will always treasure the tokens of kindness you sent our way during this trying time.

A special thanks to my colleagues for covering all my classes until I return from our extended vacation, and to my chair and dean for being so understanding.

Please keep following the blog for pictures and updates on our vacation.

Day 21

2008-01-10T01:11:00.000-05:00

$1,000,000.00

That's how much a bone marrow transplant will cost, according to what a nurse told Melissa. If it comes to this--and I'm not implying that it will--we'll be able to "put it on the Underhills' bill" because we have good insurance, at least, I think.

And speaking of money, Melissa and I want to pass on a special word of thanks to her cousin, Keri Lyn. Get this--not only did she raise money in her office for us, but she also worked her Tupperware business just so she could give the profits to us! Wow. Thanks so much!!!

I also want to thank my colleagues at IU Kokomo. We got a generous gifts from the staff in Continuing Studies, Student Activities, Campus Climate, Career Services, and Child Care in addition to a gas card and a salon gift card for Melissa from the Staff and Leadership Councils. Granted, I've slowed down on taking pictures of myself filling up the car with gas. The cold weather and the suspicious looks I get from people have put a damper on that, but rest assured that we are very thankful for all of your generosity. If I get the chance, I'll take pictures of Melissa's Great Spa Adventure. :)

http://www.caringbridge.org/visit/gomyla. This is the address for the Caring Bridge website Melissa has launched to also keep you updated on Myla's condition.

Day 20

2008-01-08T20:36:00.001-05:00

Another good day! Not much to report on the medical front--just another day of waiting. I spent most of the day working on teaching and administrative tasks, but I was able to spend some time in the hospital room tonight where Myla continued to be all smiles. I really need to update her main picture here on the blog. That was taken before she had learned to light up a room with her beaming smile.

Tonight, we watched the NBC/MSNBC news coverage of the New Hampshire primary. I can't help but wonder if the NBC group is pulling for Hillary because when she finished second to Obama during the Iowa Caucus, the same talking heads blabbered on incessantly about Huckabee and his victory. For the most part, the Democratic candidates were but small blips on the radar of Keith Olberman and Chris Matthews. Olberman going on and on about Huckabee? I've seen odd things before in my life. This was one of them. But tonight...oh tonight...it was a different outcome, and a vastly different treatment. Did anyone else notice this shift in emphasis? Maybe it was just me. Often, it is just me. But really, I never heard a single word tonight about how Chuck Norris finished in the voting. Odd.

So, I just started an introduction to public speaking course yesterday at Indiana University Kokomo, and I can't help but wonder if any of my budding rhetorical scholars listened to Obama's concession speech or to Clinton's victory speech. How could they pass up this opportunity to hone their analytical skills by watching speakers deliver a string of soundbites written by others? Such wishful thinking on my part, I know. But if I'm wrong about their motivation and engagement with the democratic process, then my students can prove me wrong by posting their insights as a comment to this blog entry. Imitating Ben Stein on Ferris Bueller's Day Off: "Anyone know what this means? Class? Anyone? Anyone? Anyone have any thoughts?"

An especially ripe line for analysis was Clinton's statement that went something like this: "I listened to you, and in so doing, I found my voice." (Cue the raucous applause and the sight of placards frenetically thrusting upward). I'll have to discuss this line in my class tomorrow morning. :) If there was ever a line written by a political speech writer, that was it. Look no further. It's beauty is due in part to its strategic ambiguity. It sounds good, but what does it really say or mean? On one hand, it sounds as if Hillary has no voice of her own, and that she is just reflecting the views of the collective "you," which I'm assuming is the populace of New Hampshire. And given that New Hampshire is 96% Caucasian, does this mean that Clinton's new voice overlooks other segments of the population? I know, I know. I'll back off. It's just that this one line intrigued me. If I were Rush Limbaugh--and I'm not--then I'd be all over this line during tomorrow's foray into "excellence in broadcasting."

Yep, it's campaign time again, and for a C-SPAN junkie like me, this is a good time to be alive. Even Myla would smile to that.

Day 19

2008-01-07T14:06:00.001-05:00

Myla just keeps plugging away! Nothing but good news here.

Today was the start of the semester at IU Kokomo, so I made the pilgrimage north from Indy so that I could "stomp out ignorance," as a former colleague of mine was fond of saying. I don't know how much stomping out of ignorance I did, but I had an odd sensation when I walked down the hallway where my office is. I noticed that the tiles on the floor were about 8 inches squared, where as the tiles in the hallway of the Children's Cancer Center are 12 inches squared. I'm not sure why exactly this came to mind--you'd think I'd have better things to think about on the first day of a new semester--but this realization was accompanied by the strange sensation that--get this--I was walking much faster than usual, not to mention that I felt taller. I'm guessing that I was walking at a comfortable 3 miles an hour, but the 8 inch tiles gave the visual impression that I was moving closer to 4.5 miles per hour. It was as if I had become my own people mover. Personally, I can't think of a better way to start a new semester than with such a strong sense of progress.

I had another odd experience later in the day as I was driving back to Indianapolis. Stopping a red light, I had pulled up 15 feet or so behind a white van, and I found myself straining to make out the words on a bumper sticker mounted on a back window. I was pondering whether I should move closer to the van's bumper when AT THAT VERY INSTANT I heard a driving safety reminder on the radio about keeping a safe distance from the vehicles in front of you. How completely odd and random was that? In a previous posting, I wrote about what I called "Very Freaky Verbal Coincidences," or VFVCs. This was my attempt to describe such experiences, which used to happen to me a lot, until I wrote that blog entry back on April 29, 2006. Since then, I have had only 3 such occurrences.

Day 17

2008-01-06T01:02:00.000-05:00

A special thanks to Fred and Jan Hakes for having Raul Matthew and I over for dinner at their lovely home! It was such a nice treat get away for some great food and even better conversation.

Day 16

2008-01-05T00:38:00.000-05:00

This morning, Melissa and I attended the first of an experimental meeting held in the cancer center at Riley. Each day, the medical staff meets to discuss each patient's status. In the past, these meetings have been closed door, but now, the staff has invited parents to the part of the meeting in which their child's case is discussed. Pretty cool if you ask me. And to top it off, we took Myla to the meeting! We were only there for a few minutes to hear a basic update on the metrics of things like Myla's overnight stool output, but it was nice being invited. These meetings are held each morning, so we'll see how long families are invited to attend.

Myla is doing well considering the circumstances, but there are signs that she is sensing pain from what might be the onset of mucositus, a common side effect of chemotherapy. She has been fussier than usual, and she continues to look as if she is not feeling well. We could put her on morphine, and likely will eventually, but the medical staff also agrees with Melissa's decision not to rush into pumping Myla full of pain killers at the first signs of discomfort.

Raul Matthew and I returned to Kokomo where we ran around town doing fun things like paying bills and shopping. And on the way back from picking up some ingredients for dishes I plan to make next week, I made the very impulsive decision to stop into the birthing center at the Howard Regional Medical Center to pass on the address to this blog to the nurses who helped bring Myla into the world. In the parking lot as we were leaving, I said to Raul Matthew, "That was a very impromptu activity." Then I had to explain what impromptu was, but I couldn't help but wonder if someone there needed the update on Myla's condition at this time. Either way, it felt interesting to be back on the second floor where Myla was born. How exactly did it feel interesting? I'm not really sure. It just seemed so familiar, and yet so far removed from our present lives.

Thanks to the Byroms for the Bob Evans gift card. We ate there tonight in K-town--another impromptu decision. I learned tonight that the restaurant will soon be rolling out not just a new line of coffee, but larger coffee mugs to for serving this more toxic brew. This change is in addition to the new tea baskets you can order so that you can make a variety of teas at your table. All I know is that old man Evans dies, and the restaurant starts changing the recipe for success. Before you know it, the place that used to be "down on the farm" will be serving uptown offerings like sushi and fois gras.

Day 14

2008-01-03T00:05:00.001-05:00

Myla wasn't her smiling happy self today as her ANC dropped to zero. She slept more than usual, looked red around her swollen and bleary eyes, and just looked miserable, as if she had the flu. Despite the relatively miserable day, the drop in Myla's ANC comes as good news because it indicates that the second round of chemo is working.

We are, however, back to that relatively dangerous time in which Myla's immune system has no ability to fight off infections. She'll be without defense for the next couple of weeks until her ANC rebounds. Since we have been here at Riley during this second round of chemo, things have gone very smoothly, and there is an extent to which that can be expected. Most of the complications don't come when chemo is given, but in the days that follow. In other words, Myla's boat may be sailing from the smooth waters of the chemo carribean to the stormy seas that characterize sailing in the North Atlantic this time of year.

On a dryer note, I went to an Indiana Pacers game tonight with my good friend and former college room mate, Mike Knoerzer. We were given great seats through the Ronald McDonald House, so it was interesting to see an NBA game up close, and even more interesting to meet another family with a child at Riley.

Day 13

2008-01-01T20:13:00.000-05:00

All is well. :)

Entry from Melissa

2007-12-31T23:10:00.000-05:00

This silly poem is dedicated to all the wonderful nurses who have cared for Myla. THANK YOU!

Twas the morning of chemo, and all through the floor,
Not a patient was stirring, not even a door.
IV poles still stood by the bedrail with care,
In hopes that the nurse soon would be there.

The patients were nestled all snug in their beds,
While visions of going home danced in their heads.
And Myla in her cute socks, and I in my chair,
Had just settled our eyes in a tired glassy stare.

When out in the hall there arose such a clatter,
I looked at the door to see what was the matter.
Away to Myla's bed, as fast as I dare,
Tore off her diaper, and smeared on Sensi-Care.

The light from the hallway came in through the door
And I finished changing Myla so her bottom wasn't sore.
When, who to my curious eyes should come in,
But two nurses to signal "LET CHEMO BEGIN."

With little experience, I watched as they came,
They looked at their papers and bags for the name.
More rapid than eagles the process began,
It was obvious to me that they had a plan.

"Now Myla's her name, her number is this,
All three chemos today, not one will we miss.
Cytarabine first, Daunorubicin next,
Etoposide last, so dictates her text."

As dry leaves that before the wild hurricane fly,
When they meet with an obstacle, mount to the sky.
So quickly the nurses checked all of her info,
Myla's upset, "oh she's wet -don't you know!"

The nurses confirmed Myla's name and her dose,
Then Myla smiled because the nurse had come close.
The nurse became silent and programmed the pump,
Myla's chemo not yet has made her a grump.

The nurse on her hands ChemoBloc blue-colored gloves,
With her bright yellow gown that everyone loves.
A bundle of bags and tubes in her hands,
Just as on paper Myla's protocol demands.

Her eyes-how they twinkled! Her smile so merry
As she hooked up one chemo, whose color was cherry.
To keep Myla from sick, the Zofran was given,
With the alcohol wipes she cleaned off her lumen.

To check blood return before chemo begins,
The nurse next to Myla holds the syringe,
She sees Myla's central line is not blocked,
"Patient-occluded" beeps if clamp is still locked.

The nurse, oh how pleasant, and confident be,
Taking such good care of Myla and me.
A wink of her eye and a twist of her head,
Soon gave me to know I had nothing to dread.

She spoke not a word, but went straight to her work,
Pushed the pump button, then turned with a jerk.
Making notes on her "brain," then weighing a diaper,
Myla's Gramma sat with her camera beside her.

The nurse walked to the door, gave us a smile,
And I knew at that moment she'd be back in a while.
As she pulled closed the door of Myla's and mine,
Then started the buzzer "THERE'S AIR-IN-THE-LINE!"

Day 12

2007-12-31T17:35:00.000-05:00

Thanks to Mary Pothoven for the friendly reminder to update this thing! :) I can be a slacker that way, especially when I don't have much to say. In general, no news is good news, and if things go south, then I'll likely issue updates hour-by-hour or even sooner as the situation dictates. Nonetheless, I appreciated the reminder to keep you all updated on Myla's condition.

Myla completed her chemo infusions for this second round on Thursday, so we are once again in that waiting phase for her ANC to reach zero--it's down to 14 today--and then rise again to a 100 or more before we can head back home for another week, a process which should take 2 or 3 weeks.

Myla seems to be doing exceptionally well, and the nurses continue to comment on how happy she always seems to be. Last night, a nurse told Myla, "You're the only person I've seen who smiles after finishing chemo treatments." Myla just smiled.

There hasn't been much to report during the last few days, aside from a blood transfusion. It takes a few minutes for the blood to make it through the line to Myla; here's a shot of the red stuff pushing the saline solution through the line. For some reason, I found this fascinating.

The nurses also unhooked Myla from the pumping equipment, so she is free! Melissa surprised me the other day by standing with Myla near the front entrance of the cancer center when I walked in. I was NOT expecting to see them out of the room, so that was a very pleasant surprise. We've taken a few walks around the circular hallway in the cancer center over the last couple of days.

I hadn't realized why I hadn't updated the blog during the last few days, but now that I think about it, I have shifted my focus to wanting to help some of the families who have just entered the cancer floor over the weekend. Melissa and I are hoping of ways to be an encouragement and source of helpful information for those families who are just now walking into this strange and potentially scary new world of childhood cancer. I'm kicking around some ways to add some helpful entries to this blog for newcomers to the Riley Hospital for Children, and I might even launch a lecture series (or something) either here at the hospital or over at the Ronald McDonald House.

Happy New Year to all of you!

A special greeting to one of my former students in Rossville who shared my blog with a family also staying at the Ronald McDonald House. The thing is, I have no idea who you might be, so, uh, who are you? :)

On a completely different note, I made the mistake two nights ago of picking up a paperback copy of Tom Wolfe's Bonfire of the Vanities. It's an interesting tale of race relations in NYC, and I've been using the satellite imagery on Google Maps to explore places mentioned in the book. As my students know, I could give a nerdy explanation of the joys of using modern technology to enhance both TV watching and book reading, but I'll exercise a modicum of self control, which will make me feel better in case I don't get around to making resolutions for the upcoming year.

Day 8

2007-12-28T00:29:00.000-05:00

Myla is having some kind of reaction to something (the chemo?). Melissa described the swelling in Myla's lower extremities as "cartoon foot." The medical staff doesn't seem to know what is causing the swelling, but they are keeping an eye on it as we continue to draw attention to it.

I spent most of the day in Kokomo yesterday getting some things done on the home front, and since Raul Matthew stayed at the hospital yesterday, I decided to take RM on the road today. We started by taking some pictures around downtown Indianapolis, then went to the conservatory at Garfield Park, and capped it off with attending the Christmas at the Indianapolis Zoo, compliments of Fred Hakes. Thanks, Fred!

Day 6

2007-12-25T11:40:00.000-05:00

I woke Raul Matthew just in time to head downstairs for Santa's visit to the Ronald McDonald House. There were so many huge bags down there that it resembled an overloaded New York City garbage barge, just with fewer seagulls. We got a large gift bag featuring an eclectic mix of gifts ranging from a tye-dye NASCAR t-shirt to baby wipes. Most interesting was the Charlton Heston "Pry this Rifle from my Cold, Dead Hands" Action Kit. This was odd, but I won't "punch a gifted camel in the mouth." It's just a motto I live by. This was all in addition to another gift bag of goodies that we found waiting in our room last night.

While at the Riley Ronald McDonald House this morning, I met our neighbor from the other RM House. She and her husband have a one-year old daughter who has been struggling to stay alive in Intensive Care. This little girl with a heart condition had to be resuscitated yesterday, so this family has been in my thoughts and prayers throughout the day. There are many people here who are in worse situations than we are in.

Raul Matthew and I headed to Riley at about 9:30 where we found Melissa and Myla asleep in their dark hospital room. To give them more time to sleep, we headed down the hall to the activity room where we played several games of Foosball. While the Cleveland Crabs were no match for the Florida Oranges, they were ultimately crushed by the New Jersey Eggplants. Don't ask.

We are among the few people left here in the cancer ward today, but are very thankful for how well Myla is doing. She has been a bit on the fussy side this morning, but she is not running a fever and seems to be doing well overall. There are just three more days left in this second round of chemotherapy, and that will be followed by another 3-4 weeks of recovery time here in the hospital. After that, we'll head back home for about a week before beginning the 3rd round.

Here's a family picture of us from today.

Day 5

2007-12-24T17:50:00.000-05:00

Myla's ANC was 858 today, which, as it turns out, means nothing much at this point given that the chemo will take it back down to zero once it kicks in. The bottom line today is that Myla is doing well and has been smiling lots today. Life is good.

This afternoon, we got a visit from Becky and Leah, who attend my inlaws' church. They visited this afternoon and dropped off a couple of great food baskets. Afterward, Melissa did a good job of changing the dressing for Myla's central line, and I played a supporting role in holding Myla's hands.

It's Christmas Eve, and things are fairly quiet here in the cancer ward, despite our room being sandwiched between patients who [this part of the entry has been deleted to protect the privacy of these patients.].

Thankfully, a number of families and organizations have brought in lots of food to both Ronald McDonald House locations (there is a 6-room RM house here in the hospital in addition to the much larger house that we stay in.) So, the food has been plentiful. We have also had the privilege of meeting a number of wonderful people, some who have walked down our path. On Saturday, I met Brad and Cheryl Stanley, whose son survived AML. It was their son's idea to found an organization to provide help to families dealing with childhood cancer, so they have run with that vision and now provide a ministry of support to those in need.

Thanks to all of you who have wished us a Merry Christmas. Your prayers, e-mails, and gifts of many kinds, and greatly appreciated. We are overwhelmed with blessings, both large and small. Each day I'm amazed that the Kennedy's gave us their Volvo, that the Sears transported it from Florida to Indiana, and that my friend Mike picked up the tab for the U-Haul car carrier. This has been such a blessing! We are also so thankful for the gas cards from Bible Baptist Church in Kokomo and from my C391 Cyberculture and Community class. Thanks also for special gifts from my parents, my Grandma Canez, my cousins in Tucson, the Andersons, Fred Hakes and the staff in the Continuing Studies at IU Kokomo, and those of you who have given anonymous gifts to us. All of these gifts have been meaningful first, and useful, second. I have been personally touched by the generosity of my colleagues, both faculty and staff, at IU Kokomo. You have been so helpful and supportive from the beginning of our situation.

Thanks also to the Greenwalds, a family who once spent Christmas here at Riley. They dropped off a gift and a kind note of encouragement. I also want to voice our thanks for the anonymous family connected with Riley who gave us a generous gift package, including a Wal-Mart gift card that enabled me to put new tires on the car. That turned out to be an interesting experience. Several customers and garage workers were standing awkwardly around the service counter at the Wal-Mart in Lafayette when the manager addressed the workers: "Uh, these people here (pointing to three customers) are from a funeral home. (Insert awkward pause). They were transporting a body (Insert pause) when they got a flat tire. Now the deal is that the body is not in a casket. (Insert another pause, during which I turned away to keep from bursting out in laughter at the wonderful awkwardness of the situation). The body is in a bag in the back of the van. Is anyone going to have a problem with this?" I took a picture of the van on my way out, so I might post this when I get my hands on it. To make the evening more bizarre, I got blocked in by a semi trailer bearing a new camouflaged military Hummer. The ENTIRE back parking lot was empty, but this guy (or woman) had to park in front of my car. :)

I am inevitably running the danger of not thanking someone in the blog because there are so many of you to thank for all that you have done, but we'll send our thanks to you the more traditional way. :)

Here's a picture of us tonight along with a shot of Myla and Raul Matthew with Grandpa Byrom.

Day 4

2007-12-23T23:55:00.000-05:00

Myla continues to do well. Here's a picture of her smiling in the black tights from Chris & Sheryl Plenio.

Last night, I found out that Tony Dungy gave us two tickets for today's Colts game. Ironically, Raul Matthew thought the dome was too loud last time, so I gave the ticket to my nephew, Briley, who is an avid Colts fan. Here's some shots of Peyton Manning giving his armband to a fan after the game, a Colts Santa (or something), a JumboTron picture to honor the late Representative Julia Carson, and the rise of the digital football fan. On our walk back, the 10 degree wind chill factor didn't stop this budding Einstein and his pot-bellied Gollum buddy from running around downtown Indy wearing blue and white paint in place of a shirt. More images are available here.

Day 3

2007-12-23T00:27:00.000-05:00

Myla did well today, and her ANC even rose to 585. The highlight of the day was a visit from the Kubiceks including Nancy, Sergio, Amelia, and their parents, Katherine and Keith.

Other pictures from today:

Raul Matthew working on school.
Raul Matthew and Grandma building a ginger bread house. Here's the finished product.
Carolers who sang their way around the cancer ward.

I also took about an hour this afternoon to explore some of IUPUI's campus:

Coleman Hall where 100,000 babies were born. Read more about it here.
Long Hospital which is on the creepy side.
Cavanaugh Hall where my former colleague at IU Kokomo, Dr. Terri Bourus now holds forth.
A chair that intrigued me.
If you get bored, you can check out additional images here.

Day 2

2007-12-21T10:55:00.000-05:00

It's nearly 11 AM and Raul Matthew is still catching up on some much-needed sleep. Meanwhile, I've been able to use the quiet of the morning to catch up on finalizing the assessment report for our communication arts degree.

Melissa just called from the hospital room to give me the latest numbers on Myla. Her ANC continues to fall--it's now 275. Her hemoglobin has also fallen from 10.2 on Monday to 9.2 yesterday to 8.2 this morning, so she'll likely get a blood transfusion before too long. Myla is also running a slight fever at 99.2, so that's something to keep a close eye on because it could indicate an infection. That wouldn't be welcome news because her weakened system would struggle to fight it off.

More later...

Second Round of Chemo, Day 1

2007-12-21T00:35:00.000-05:00

Britley watched us pack up our belongings before we headed back down to the Riley Hospital for Children in Indianapolis for the first day of Myla's second round of chemotherapy. We arrived at the Hematology/Oncology Medical Service Area on the 3rd floor of the Riley Outpatient Center for our 2:30 appointment. As usual, Myla had her blood pressure taken before being measured for length and weighed. She then had her lines prepped to receive some fluids via her central line. Her blood was also drawn for analysis, and we waited around in room 3 for what must have been an hour before Dr. Kumar came in to discuss the results of the blood test. Melissa and I thought it was funny that Myla had her fingers crossed as we waited. When Dr. Kumar arrived, she explained that Myla's ANC had dropped down to 324 from the 700 it had been on Monday. We had hoped that this number would have been closer to 1,000 before Myla started the second round of chemo, but as Dr. Kumar explained, the drop in the ANC was due to the presence of leukemia in her bone marrow. That's the bad news. The good news is that the leukemia is far less than what it was when Myla started the first round back on November 8. So, the bottom line is that Myla appears to be making some progress.

After consulting with our doctor, the nurse placed the mask over Myla's face and we headed down the hall, up the elevator, and through the doors of the cancer center to our new room. Here's the view out our front door. Once we had checked into the hospital room, I headed to the Ronald McDonald House to check in there. This time, our room is the top one on the corner as seen in this picture.

When I returned to the hospital, I found that Myla was being hooked up to more equipment. We spend a quiet first evening at the hospital that included the following:

Raul Matthew playing with magnets on the marker board.
Melissa posing for the camera.
The Byroms looking through the pictures we just recieved in the mail from an organization that specializes in free portraits of children with cancer.
A nurse checking on Myla's oxygen sensor.
Coloring, including an alien masterpiece from yours truly.
Myla being entertained by toys.
Another nurse came in to start Myla's first and second doses of chemotherapy.

The Way the Football Bounces

2007-12-19T13:29:00.000-05:00

We only thought we were going to be home for Christmas. :) As it turns out, we will be readmitted to the hospital tomorrow. The latest pathological analysis of Myla's bone marrow showed that the first round of chemo had not wiped out the leukemia, so she needs the second round of chemo sooner than later.

The good news is that Myla won't need another bone marrow test tomorrow when we go in. Instead, they will look at her ANC, which will hopefully be over 1,000 this time. If the ANC is lower than the 700 from Monday's test, then we're not really sure what would happen. This situation is a bit of a catch-22; we have to give her the chemo before the leukemia rebounds, yet her system may not have recovered enough to handle the chemo treatments. We're hoping that the three days that will have passed since Monday will have given her system the time it needs to recharge.

False Start

2007-12-18T05:14:00.000-05:00

We loaded up the car and left early on this cold morning to head back down to the Riley Hospital for Children in Indianapolis. Today was supposed to be the start of Myla's second round of chemotherapy, but it turns out that her system hasn't yet sufficiently recovered from the first round of chemo. The bottom line is that we were sent back home until Wednesday, December 26.

The good news is that we will be able to spend Christmas at home. The bad news is that...well, that part's a bit fuzzy. Myla's ANC count today was only 700, which was up only 115 from last Thursday. Generally, the ANC is supposed to multiply quickly. Her slow recovery isn't a good sign, but it's not necessarily a bad sign either. Some people just take longer to recover from the rounds of chemo.

With a score of 700, Myla's doctor would have admitted us today for the start of the second round. What sent us back home was that Myla's bone marrow wasn't rich enough. That's in layman's terms, and it just means that there weren't enough cells in the bone marrow yet. Proceeding with chemo before her bone marrow had recovered would have been dangerous as her system might not have been able to handle the second round of chemo ripping through the cells in the bone marrow before she was strong enough. So, waiting was the best option.

But, it was somewhat of a shock to find that we were headed back home for another 10 days. Ideally, they would try to admit us later this week, but they have to do another bone marrow test with richer marrow to assess the effectiveness of the first round of chemo. Because Myla's bone marrow was depleted today, it will take at least another week before she's ready for another bone marrow test, and that puts us into Monday of next week, which is Christmas Eve, which means that the outpatient wing of the hospital is closed until 12/26. That, ultimately, is why we are having to wait so long before we can return.

Here are some pictures from today:

The Volvo warms up for Melissa and Myla's first ride in it!
Melissa keeps the mask over Myla's face in the waiting room of the Riley Outpatient Center.
Myla always gets the following measurements when we are first called back: blood pressure, height, and weight.
Myla looks alert after putting up with all the measuring nonsense.
We headed back to room 7 where Myla got her blood drawn the easy way and patient identification attached to her ankle.
After a brief rest in the action, the nurse applied numbing cream to the points on Myla's back in preparation for both the bone marrow aspiration and the second dose of spinal chemo she would recieve today.
After all that fun, Myla pretended to wait patiently for Dr. Kumar to arrive with the results of the blood test.
After a brief inspection by Dr. Kumar, we headed to a waiting area on the second floor for another echo cardiogram. Although Myla looks calm in the pictures I've shown so far, she was very upset most of the time as she hadn't eaten in over four hours by this point. The medical staff did a great job on both the exam and on trying to entertain Myla using all means possible--including blowing bubbles. My magic trick of using the spinning light toy had only a limited effect this time around. After the exam, we walked back out using the same hallway we had been down on November 8, when Myla was first admitted. I wanted to take this picture because it was at this very spot that Melissa had voiced her concern over not being able to hold Myla over her shoulder for a long time. Thankfully, that worked itself out and Melissa could hold Myla over her shoulder within only a few days after the surgery. (I know, Myla isn't being held over the shoulder in the shot I took today, but that was because Melissa had to keep Myla's mask on her face.)
After the echo cardiogram, we waiting again in the lobby of the Hematology/Oncology area. Dr. Kumar explained the results of Myla's blood test and shared that even though her ANC count was relatively low at 700, she still planned to admit Myla as long as the bone marrow test had a good outcome.
Melissa took Myla to have the bone marrow aspiration and dose of spinal chemo, while I wisely left in pursuit of doing something else...anything else. This turned out to be a quick lunch at the Ronald McDonald House and snapping a picture of the Christmas tree in their courtyard.
Here are some shots of Myla after the procedure: A, B, C, & D.
After spending about an hour in the recovery area, we headed to another room where the nurse changed Myla's dressing.
We observed some swelling in Myla's face, so we ran this by the nurses and they gave Myla the okay to leave.

So, we did.

Recovery Update

2007-12-13T15:51:00.000-05:00

Great news--Myla's ANC is now up to 585! This is up from the low-200 range earlier in the week, so her system is recovering well.

Terri, a home nurse for Clarion Health paid us a visit on Monday. While she was here, Melissa changed the dressing for Myla's central line. If you faint at the sight of perspiration, then you might skip the following pictures. They aren't gory, but they are more medical than the previous pictures I've posted.

If you are still wondering whether you should have a look, I'll help you out. I'll give you a image, and you can decide for yourself whether to continue. Here it is: A sample picture of all the medical supplies used to change Myla's dressing.

If you are feeling queasy after seeing that, then just click here. If not, feel free to continue with the pictures.

It all began with Terri taking Myla's pulse and head measurement. Myla was then moved to the operating table (a.k.a., our kitchen table) where Melissa removed the outer dressing over Myla's chest. Myla waited patiently as Melissa used adhesive remover to slowly peel back this clear protective barrier. You can see the red and blue ends on Myla's central line--the tube used to draw blood and give morphine, antibiotics, chemo, etc. After the second layer was removed, you can see more clearly how the central line enters her chest. As Myla's happy camper permit expired, Melissa donned latex gloves and then cleaned the area using a sterile swab. The first and second layers of dressing were reapplied, and when all was finished, Myla was back to her normal self.

And they all lived happily ever after.

The End.

Christmas Post from Melissa

2007-12-12T17:10:00.000-05:00

WE ARE HOME! and ONE DOWN, FOUR MORE TO GO! Of course, I'm talking about Myla's chemo treatments for her congenital Acute Myeloid Leukemia (AML). Since this disease is very aggressive, the treatment for it is very aggressive. I don't have space here to describe all the ways that God has been our strength and all the ways He has provided for us over the last four weeks: From praying a friend would call (and five minutes later she did) to God's gracious hand on Myla (you'd never outwardly know she had leukemia or chemo treatments) to someone giving us a car (1997 Volvo and getting it to us from Florida) to wonderful nurses who came at key moments (some who share our faith and others who don't) to my mom staying at the hospital with me to having a private room with a private bathroom to ....I could go on and on. God has been so gracious to our family in so many ways and has filled our hearts with His Peace. Daddy and Little Raul hung out together a lot putting puzzles together, going to museums, traveling to Kokomo lots to check on the cats, and coming to the hospital for visits with Mommy and Myla. (A real blessing has been that they have stayed at the Ronald McDonald House across the street from the hospital.) Myla and Mommy hung out together in her hospital room waiting for the day we could come home. A healthy immune system (Actual Neutrophil Count or ANC) would be 10,000 but Myla's is 222. That means I can't even trim her nails -- if I would accidentally snip her finger, infection could set in that could kill her. Our week at home is going fast but it has been a great break emotionally, mentally, and physically. Myla's ANC should be close to 1,000 by Monday, so, December 17 is scheduled to begin at 9:00 am with taking Myla to the Riley Outpatient Clinic for her next bone marrow aspiration, spinal tap, and chemo treatment in her spine and readmittance to the hospital to start round two of her chemo therapy. I can't put into words how much we appreciate all your prayers, notes of encouragement, notes with stickers and toys for Little Raul, gas cards, restaurant cards, monitary gifts, and offers to help with whatever we need. Yes, we'll be at the hospital over Christmas! Myla's last dose of chemo should end Christmas day. This Christmas will be even more meaningful to us as we celebrate the One we put our Hope in: the Lord Jesus Christ who came to earth so many years ago -- born as a baby, grew up to be a man who died on the cross to pay the penalty for our sin, then prepared a perfect place for all who would believe in Him. It's through our Faith in Jesus Christ that we can have Joy and Peace this holiday season -- not based on the outcomes of Myla's treatments but based on the trust we have in His character. Merry Christmas!

Thanks in Reverse

2007-12-08T19:36:00.000-05:00

I was running errands on this cold morning when I pulled up to a four-way stop. I noticed some fleeting commotion coming from the car to my left, but I couldn't make out what it was. I turned to my right and a found myself a few seconds later stopped behind that car at a red light at the intersection of Dixon and Alto roads on Kokomo's west side.

I was engrossed in changing the radio station when suddenly, the driver's door on the car in front of me flew open and out jumped a woman clad in grey sweats. The commotion had returned, and it was the same car! I was on full alert as the woman darted toward the back of her car, and I thought, "This must be a Chinese fire drill, and the person on the passenger's side must be having a slow day." But she kept coming toward me.

It hadn't dawned on me yet that this woman was Holly Foster, a former student of mine and fellow member at Bible Baptist Church. As it turned out, I was the one having the slow day. Holly was trying to give me more gas cards on behalf of the Genesis class at our church.

But at the moment, all I knew was that someone was coming after me.

And here's the bizarre part: I slammed my gear shift into reverse at some point between the time Holly passed the back of her car and when I finally recognized her. To make matters worse, Holly must have seen me prepare for evasive action because the gear shift is mounted in plain view on the steering column.

So, thanks to BBC and to Holly, in particular, for making this one of the most memorable gas card deliveries ever on the west side of Kokomo!

Home at Last!

2007-12-08T18:46:00.000-05:00

Myla's ANC was 92 this morning, so we were told we could leave the hospital for a few days! Being kicked out was a bit more like it as nurses came through about every five minutes to ask, "Are you still here?" It took me about an hour to load the car using the "Mother of All Red Wagons."

As you may recall, the last time we left Riley as a family, I had backed our car into a light pole on the top of the parking garage. This time, I was committed to avoiding any mishaps; I carefully parked the Country Squire away from a light pole. After delivering my second load with the "Mother of All Red Wagons," I tried to lock the doors before heading inside for another load.

Nothing happened.

I had left the lights on, and the battery was dead.

My father-in-law jump-started the car and then suggested that I repark the car and leave it running while I went to get another load back at the hospital room.

No problem. Pull car forward. I can do that. Leave car on. No problem. But in a few seconds, my mind had raced ahead to the details of packing the next load. So, you guessed it, I turned the car OFF! Meanwhile in mirror, I could see my father-in-law circling around the top of the parking lot to repark. I tried to restart the car, but with no luck.

After RE-restarting the car, I headed back to the hospital room to escort Melissa, Myla, and Mrs. Byrom to the parking garage. We weren't sure how Myla would handle the mask over her face that she was required to wear because of the construction at the hospital, but as it turned out, she laughed a good part of the walk out to the car. That was fun to see.

We made it back home by early afternoon, and found ourselves totally drained. We had left that strange and exotic world of the cancer center behind us. Well, almost. Melissa had put an empty box of "Chemo bloc" diaper changing gloves on top of our kitchen trash can. I can't explain why, but I stood there staring at that box and wondering why THAT THING was in our kitchen.

Despite reminders like this, it was good to be back home, although this is proving to be a significant transition in itself. I'm still expecting nurses to enter the room every five minutes, and there is a strange sense that Myla is no longer the focal point of attention.

Unfortunately, we can't have visitors during our few days at home. We have been instructed to treat our apartment as if it were a hospital room, and that means not having visitors during this critical time as Myla's immune system is rebuilding. One of our nurses, Erin, was quite emphatic about this. We learned that Erin can be entertaining and nurturing, but she can also get really serious when it comes to enforcing the no visitors policy.

The car arrives!

2007-12-08T18:19:00.000-05:00

When we awoke, we had hopes that Myla would be released from the hospital today, but as it turned out, her ANC dropped to 50. We will be here at least one more day.

In the meantime, Raul Matthew and I prepared to take a carload of our things back to Kokomo where we would also meet up with Winston and Doris Sears who were towing the Kennedy's gift of the Volvo back to Indiana. After loading the Griswold with most of what remained in our Ronald McDonald House room, we stopped by the hospital room to pick up some additional items. Surprisingly, Melissa had only a couple things for us to carry and not much else to say. That seemed odd to me. There's usually some extra detail she shares about what's in the bags I'm carrying, how to carry them, where to put them once we get home, or something. But this time, nothing. Just a warm smile and a goodbye.

So, out we headed, a bit sooner than I had anticipated. We headed northbound on US 31, a thoroughfare that runs through the heart of Indianapolis. As we were approaching the north side of town, another odd thing was happening a few miles to the east of us: The Sears missed the exit on 465 for 431, an exit they had taken countless of times on their previous trips. My plan was to get to Kokomo an hour or so before they arrived, but they were running a bit ahead of schedule. Meanwhile, I was literally scanning the traffic all around for Volvos because I wanted to see what they looked like. Right then I noticed a white Volvo merging into my line directly in front of me. Then I noticed that it was on a trailer. And it didn't have a licence plate. It was at this point that I realized we had just pulled behind the Sears who were towing our car back to Kokomo.

I had loaded the Sears' phone number on my new cell phone "just in case," so I called Doris and informed her that I was trying to make it up to Kokomo, but things were a bit slow going because there I was stuck behind a truck hauling a white Volvo on a trailer.

This never would have happened had Melissa wanted to talk more at the hospital or if the Sears had not missed the exit they always take. I saw this as just another example of God working out all the details on getting the car up here. Thanks again to both the Sears and Kennedys for making this possible! Here's a picture of them hauling the Volvo in front of us and another of Winston and Doris Sears along with Raul Matthew at a gas stop on the way to Kokomo.

It may sound insignificant, but I found myself almost as excited to get the pine needle and oak leaf that were under the windshield wiper. For me, it was just a little taste of home. I often have longings to return to central Florida like some Jews might have to return to their "homeland," but for different reasons, I'm sure.

Update from Melissa

2007-12-05T11:33:00.000-05:00

Apparently, as the white blood cells recover is one of the greatest risks for problems. For example, if there was any infection in the lungs, all white blood cells would target that and she could develop pneumonia very quickly. She also will be very uncomfortable as the cells spill out of the marrow. That probably explains her more frequent fussy times each day; It is obvious she is uncomfortable. Her ANC is 88 today. As I continue to understand, God has been so gracious to Myla through this!

Perry, Georgia

2007-12-04T21:51:00.000-05:00

We didn't ask people for it.
We didn't pursue it.
We didn't publicize our need for it.

But...we did pray for it.

And so it now sits, in Perry, Georgia, in the parking lot of some hotel.

From my understanding, this all started with a prayer in a park. Autumn Kennedy of Lakeland, Florida, was praying about Myla's situation when she felt the Lord's leading to help us meet a major need in our lives. I had never met Autumn. And aside from the occasional "most wanted" flyers posted by the Polk County Sheriff's Department, she had probably never heard of us. But after hearing about Myla's situation through Covenant Presbyterian Church in Lakeland--the church I attended while growing up--she wanted to help.

So, she called her husband, Chad, to see what he thought about her idea.

He thought it was great.

So, there it sits, in Perry, Georgia, in the parking lot of some hotel.

With the traveling we have to do, a newer and more dependable car would have met a major need. Our two cars are 15 and 21 years old, and we've been nursing them along for quite some time. They've been perfect for my 1o-minute commutes about town, but for longer trips, we had concerns. I usually rented a car for making trips to Indy.

So, we prayed, and shared our need for a better car to a few family members and a couple of close friends, but that was it. In the meantime, our transportation needs were being met by the generous gas cards from our church and other friends, so we were content. I told Melissa, "It would be great if we could just keep driving these cars into the ground." And as Melissa would tell you, I've been saying that for years.

To make a long story short, Chad and Autumn gave us their 1997 Volvo 850 station wagon! And so it sits, 694 miles away from us in Perry, Georgia, in the parking lot of some hotel.

But last week, it sat 1,065 miles away from us.

That was a problem.

After the Kennedys' made their generous offer, I wasn't sure what to do. I couldn't take time away from Myla to fly down and drive the car back. So, we did nothing, except for pray. I figured that if God wanted us to have this car, then He would also find a way to get it up here. I had told Melissa repeatedly that the last thing we would want is to come across as opportunistic regarding any aspect of Myla's condition. I told her that if God wanted us to have another car, then He would have to push it on us, and this involved solving the transportation problem.

Last week, my former college roommate, Mike, called to share that God was about to do just that. I had told him about the Kennedy's offer at some point, but then didn't think much else about it. As it turns out, Mike's parents, Winston and Doris Sears, haul recreational trailers from Indiana to various destinations across the country. Mike shared our situation with them, and they jumped at the idea to request a delivery to Florida just so that they could haul the Kennedys' car up here to Indiana. Wow! Isn't that amazing? I had expected this to take a few weeks, but they were on the road within a couple of days.

This has been a tremendous blessing. I'm delighted to receive this generous gift, but I'm almost as excited to see such a concrete example of God using people who are sensitive to His voice to meet the needs of other members in the body of Christ. In the book of Ephesians in the New Testament of the Bible, there is a verse that talks about the good works that God has prepared in advance for us to do. I'm convinced that this is one of those works that was planned from eternity past, and from my vantage point, it was fun to watch such a clear example of God's unfolding providence. I'm also humbled.

So tonight, I want to send a special thank you to the Kennedys, the Sears, and my friend Mike for the car that now sits in Perry, Georgia, in the parking lot of some hotel.

But just for tonight.

Back to Zero

2007-12-04T17:59:00.000-05:00

Myla's ANC is back to zero from the 26 reported earlier. As it turns out, the 26 was probably overinflated anyway because it was analyzed at a different lab. This is apparently typical because a different lab analyzes the results over the weekends.

The latest update: We might head home in another week.

Oh yeah, babe.

2007-12-02T15:17:00.000-05:00

DIRECTIONS: For the following question, select the one BEST answer:

Which of the following statements are true regarding the number 26?

It is a composite number.
It is the smallest number which is not a palindrome.
It is the number of miles in a marathon (plus 385 yards, of course).
It is the average number of times Emeril Lagasse says, "Oh yeah, babe," per episode of Emeril Live on the Food Network.
It is Myla's ANC, which means that her immune system is rebuilding.
All of the above.
All of the above except 4 & 6 because Emeril says, "Oh yeah, babe," far more than 26 times per episode.

If you selected option 7, your score is an A.

Oh yeah, babe.

After two weeks of Myla's ANC remaining at zero, her system is recharging itself!

We are now waiting for her ANC to reach a certain level before we are sent home for a few days. This level varies from doctor to doctor, and some "laid back" docs often dismiss patients once their ANC reaches the 100-200 range.

Oh yeah, babe.

More cautious doctors, however, usually wait until the count is in the 400-500 range.

After yesterday's chatter about us being released as early as Tuesday, the nurses are now predicting a release date closer to the end of the week.

Regardless of when we leave, we'll return on Monday, December 10, for another bone marrow test during which Myla will get her second dose of spinal chemotherapy.

This will be an outpatient procedure, and then we'll return home for a few more days.

Oh yeah, babe.

Annoying, isn't it? That's about how I felt when caught an episode of Emeril Live last week. Okay, I'll let it go.

So anyway, Raul Matthew and I are back in the hospital room today with Melissa, Myla, and Melissa's mother, Carole Byrom. Despite encouraging ANC count, Myla has felt poorly today, but she is sleeping now (4:57 PM), so that's good. [11 PM update: Myla was just given morphine to control pain caused by mucositis. Hopefully, she'll relax and sleep peacefully though the night.]

And now, for some pictures.

Myla watching the Colt's game this afternoon. Thanks for the outfit, Barb!
Raul Matthew surveys the mountain of soiled linens we found while taking a walk today through the creepy tunnel that runs underground between Riley and the University Hospital.
Myla's respiratory mask.
Myla with her thinking cap on. Why Melissa does things like this, I'll never know. (She'll try to tell you that I put the cap on Myla's head, but she's not writing this blog, is she?)
A Close-up of Melissa, Myla, and Raul Matthew.
Raul Matthew plays chess with Dale Byrom, his grandfather.
Certifiably adorable bunny slippers, a gift from the Pino family in Texas as part of the "Bunny by the Bay" collection. This gift package included some wonderful outfits and the softest stuffed bunny on this side of the solar system. When Plato contemplated the metaphysical properties of the Ideal soft bunny, this is what he had in mind, except that this is even softer!
A book of poems and prayers from Dr. & Dr. Jallad for Raul Matthew. It included a poem entitled, "My little sister."
Finally, here are some Christmas images from the Ronald McDonald House including an angel pretending to play a drum, a lantern-wielding shepherd who looks WAY too close to renderings of an adult Jesus to be placed in the Christmas set not to mention that they didn't have human growth hormones back then, two fake golden deer suffering from ORS (Oversized Ribbon Syndrome), and a gigantic purple Christmas ball that would put a large herd of Barney the Dinosaurs in the holiday spirit. Finally, nothing says Christmas quite like a McDonalds' Baked Apple Pie ornament.

Oh, yeah babe.

Sorry. Just had to get one more in.

There is one thing I'd like to know, however: How long would a Burger King ornament stay on a Christmas tree at the Ronald McDonald House? Inquiring minds want to know. Of course, I would NEVER conduct this type of research, and to my credit, on our first night here, I tackled Raul Matthew just before he rushed through the front doors of the Ronald McDonald House wearing a Burger King crown on his head! Some people. :)

Headed Home...Soon.

2007-12-01T12:22:00.000-05:00

Great news--one of the doctors told Melissa that Riley Hospital might send us home by Tuesday or Wednesday of next week! This will just depend on how quickly Myla's numbers increase. The medical staff continues to be amazed at how well she is handling her chemo treatments, and that's why they seem inclined to release her a bit early.

This means that we'll be home for about a week before turning around and coming back for her second of the five rounds of chemo treatments. Unfortunately, because of Myla's low immune system, we'll have to limit visitations during our time home and treat our apartment as if it were a hospital room. If you can't help yourself and JUST have to see Myla, then give us a call and we'll see how things are going. :) I want Melissa to get as much rest as possible during our few days at home, and we'll try to live a "normal life" for Raul Matthew's sake as well.

Meanwhile, Crib McD flooded the house with glut of Christmas decorations this morning. Pictures to come.

How we dealt with uncertainty, I think.

2007-11-29T21:58:00.000-05:00

Myla will live.

No, she's going to die.

Wait, maybe she will live after all.

Such has been the epistemological ping-pong game that Melissa and I have found ourselves playing during the last several weeks. We simply don't know whether Myla will survive her cancer. In fact, no one knows besides God. And last I checked, we're not Him.

This entry is a clumsy attempt to share our experience in dealing with the high levels of uncertainty regarding Myla's condition. I'm sure Melissa's version would be different from mine, but I sense that it would be only slightly different. For the most part, we have had similar cognitive and emotional responses to Myla's condition and to the uncertainty that surrounds it. Being in sync with one another has made this journey a much easier one to walk.

Let's travel back to the day Myla was born. I was driving back to the hospital that evening when I took a self-portrait of me behind the steering wheel of my rental car. Sometimes I do this just because I'm playing around, but this time, I sensed that this was one of those key moments in my life. Earlier that afternoon, a doctor who visited our room suggested that Myla might have histiocytosis. So while I was driving, I was thinking through the implications of this diagnosis with such intensity that Doppler radar might have picked up a rotation.

After hearing about the impromptu diagnosis earlier in the afternoon, I did what many of you would do--I went online and read the descriptions of this disease from sources like Wikipedia and the Histiocytosis Association of America. Some descriptions were more graphic, like this one from the online Health Encyclopedia:

"The tumors produce a punched-out appearance on bone x-ray. Tumors in weight-bearing bones, such as the legs or spine, may fracture spontaneously. There is often systemic (whole body) involvement as well, causing rashes, lung problems, gum infiltration, lymph gland swelling, hormonal problems, enlargement of the spleen and liver, and anemia. Not surprisingly, with a disease that affects so many systems and organs, histiocytosis may be deadly."

Wow. A mere 13 hours ago, everything seemed fine. Now, I wasn't so sure. I was fairly sure that I wasn't feeling so fine, but that comes with being a human in a situation like this.

The article continued, "Young children, especially infants, are more likely to have systemic involvement and a fatal outcome."

Ouch.

Meanwhile, Melissa was back at the hospital doing the Myla thing, and even though Melissa had heard the word histiocytosis, she knew little about it. Sometimes, ignorance is bliss, and what a difference a few hours can make. I felt overwhelmed with devastation at the thought that our precious little Myla might have a disease described online in such ugly terms. Ironically, doctors would later tell us that we should hope Myla has histiocyctosis instead of leukemia.

To make a long story short, we lived the first three months of Myla's life not knowing whether she was going to live. Of course, we're all going to die, but you know what I mean. On the other hand, I was struck by the idea that ALL of us are dying from the moment we are born. Some of us will die sooner than others, but the outcome is inevitable.

Somehow, I found myself spending a fair amount of time taking pictures in various cemeteries as I processed Myla's prognosis. I know, that sounds morbid, and I haven't even told Melissa that I had done this. Really, I'm not a fan of cemeteries--"Dude, let's pack a lunch and head for the stones"--but I think I was drawn there in part just because I wanted to take pictures of various grave markers using an assortment of lenses. Another part of me, though, used this experience to confront the prospect of Myla's death head-on. I don't recommend this for others, but for me, it helped.

While spending a couple of hours alone in a large cemetery in Indianapolis, I found a toy truck that someone had left at the grave of an infant boy. Ironically, it was the monster truck called the Grave Digger. I didn't know whether to laugh, cry, or maybe both. Just how do you respond to something like this? Wow. Walking through this huge cemetery reminded me that others have faced the loss of a child. This nightmare that we are experiencing--it's nothing new to the human experience. People by the millions have experienced the loss of a child.

Then, there was this. This scene reminded me that Myla would either be fine, or we would stand here, someday soon. Too soon.

But that's the reality, and from the start Melissa and I accepted the possibility of both sides of Myla's prognosis. Neither of us played the mental game of denial, and I guess that partially explains why I took that picture of me driving. Like Melissa would do later, I was grappling at that moment with the very real prospects of Myla's death.

And speaking of the reality of death, is that all there is to it--a hole in the ground? If so, then I think the loss would be close to unbearable. As I toured that cemetery in Indy, I couldn't help but reflect on all the grief-stricken dramas that had been played out there. But for us, there was the hope that Myla's story would not end in a grave, but that she would be instantly in the presence of her Maker in heaven. So, from that standpoint, the jigsaw puzzle pieces of both Myla and a tragic death don't fit--at all.

I can imagine that people make similar statements as part of a mental mind game they play with themselves, and religion is often used as a psychological crutch for some in times of need--some way to deal with what Festinger called cognitive dissonance. But for Melissa and me, the application of deeply-held theological beliefs into our daily lives was nothing new. Myla's condition was just a new domain to apply them to. Believe me, if I were looking for some emotional tranquilizer, I wouldn't have been taking pictures among the dead. Nevertheless, there is great comfort to be found in the thought that Myla would be in heaven if we she were to die.

I also mentioned earlier that no one knows Myla's outcome but God. More than anything, it has been a shared sense of God's loving providence that has carried both Melissa and me through this trial. At a later time, I'll unpack the philosophical presuppositions that led Melissa and me to a belief in God, but for the time being, I'll just say that we never doubted God's goodness or power regarding Myla's situation. We have been so convinced of God's loving providence that we have been able to live with this potentially insane-causing level of uncertainty. We believe that God knows exactly what Myla's outcome will be. The prognosis isn't 50-50. In reality, it's 100-0.

Or, it's 0-100.

Either way, God knows the length of her life, He's loving, and He's in control of all things. I remember hearing a sermon back in my college days at Cedarville University by Dr. Erwin Lutzer, the senior pastor of the Moody Church in Chicago. The text was taken from Matthew 6 in the New Testament of the Bible, and topic was on worry. Lutzer stated that it makes no sense to worry, and he illustrated this by giving an example of man holding his suitcase while riding a bus because he thought the bus couldn't support both him and his suitcase. Worrying about Myla's outcome, as I see it, would be a lot like holding a heavy suitcase while riding a bus. Instead, we have worked to transfer our emotional baggage to the One who can bear all things.

Oh, and uh, that's NOT to say that we don't feel very real human emotions. We struggle, certainly. There are those moments, and there have been days I couldn't catch my breath. I recall one day in particular when we were convinced that Myla was going to die. Later that day I found myself alone in the baby section of Meijer shopping for something for Melissa had asked me to pick up. Surrounded by reminders of the cute and cuddly, I was struck by how radically far removed Myla's condition was from all these baby things that were soft and adorable. And for the first time in my life, I paid attention to parents shopping with their daughters. It seemed that all I could hear were the voices of children. That was a tough moment. So, Melissa and I are by no means immune to grief, but I don't think we will be paralyzed by it. (Actually, I did see one girl throw a MAJOR screaming fit in the shampoo aisle. I found myself thinking, "Well, maybe this thing isn't that bad after all." The things we think.) :)

I'll end with this. I believe that Myla's condition was not something that slipped through the cracks of divine providence. This didn't "just happen." I say that for several philosophical and theological reasons that I'll explore in later posts, but get this--the chances of Myla being born with AML are only 1 in 5,000,000. There were only about 3 million babies born in the United States last year, so a baby like Myla is born every couple of years. Further, most of the babies born with leukemia have ALL. Myla has a more rare form of leukemia known as AML--a cancer not generally found in infants, but in older men. I firmly believe that there is a reason for why Myla has this condition, but that's for another post.

How we Got Here

2007-11-29T10:33:00.000-05:00

This post explains the events leading up to Myla's hospitalization.

Let's start in December of last year. I was about to graduate from Purdue University in West Lafayette, Indiana, with my Ph.D. in Public Affairs and Issues Management. Because family was in town, Melissa and I had wanted to announce her pregnancy at the graduation party. That was going to be the high-point of the whole event. Unfortunately, her pregnancy tests refused to show a line until two days after company left town. Nonetheless, we rejoiced because we knew we would be having a second child. Raul Matthew was born a few days after I started my doctoral coursework, and Myla's pregnancy was confirmed only a few days after my graduation, meaning that our two kids are like "bookends" to my graduate work.

Soon the spring had passed, and with it, weeks of intense morning sickness. When summer finally arrived, it found Raul Matthew in swim lessons, Melissa making nesting preparations for our new baby, and me teaching a couple of classes at Indiana University Kokomo. Melissa's pregnancy kept her at home most of the time, but I tried to keep Raul Matthew busy by taking him to events like the county fair, community parades, the Indianapolis Zoo, and an American Legion baseball tournament. Life seemed fairly normal at this point.

As the pregnancy progressed, we took weekly trips to Melissa's doctor in Kokomo for stress tests, and these tests began to reveal that the baby's heart was skipping a beat about every sixth beat. To be on the safe side, we were sent to a pediatric cardiologist in Indianapolis on July 16 to have Myla's heart analyzed. Thankfully, the heart issue resolved as she developed and we moved forward with the sense that everything was okay. What a relief! This trip to Indy, though, was the first time we had experienced those unsettling feelings regarding Myla's health. But given that the results of the tests were good, we just moved on as normal.

Eleven days later, we found ourselves prematurely in the birthing center at Howard Regional Medical Center as Melissa was having precontractions. She had been experiencing these for a few days, but they escalated to the point where she wanted to be checked out--more for the health of Myla than for her personal comfort. Once admitted to the hospital, Melissa was assigned to a bed and then given two shots of terbutaline. This drug caused her hands to shake for a while. We spent a few hours watching a computer printout that told us Myla's heart rate and measured the strength of Melissa's contractions. With the situation stabilized, Raul Matthew and I walked to the nearby Steak-N-Shake for dinner. (The "shake" irony just dawned on me.) This was the first time that Raul Matthew and I had left Melissa behind at a hospital, and even if it was for only 30-minutes or so, it felt awkward.

On August 9, a Thursday, I took this picture of Melissa. We thought she still had a couple of weeks before the scheduled c-section, but that Saturday found us back in the birthing center with another round of contractions. On the following Monday, we met with Dr. Michelle Haendigis, Melissa's gynecologist, to discuss some of the metrics from the stress test that Melissa had at the hospital on Saturday. Up to this point, her doctor had strongly indicated that she did NOT want to deliver Myla early, so we were quite surprised when the doc announced plans to deliver NOW! The now turned out to be the next morning as that was the soonest surgery slot available, but even with one final night at home, this came as a surprise. So much for taking our time with final preparations. As I recall, we barely slept that night.

At 4:30 AM, we drove through a still darkness to Howard Regional Medical Center in Kokomo only to find that the glass doors to the front entrance were locked. We were off to a good start. :) After going through the emergency room entrance and meandering through deserted hallways under renovation, we arrived at the birthing unit where we were assigned a room. After a family picture, Melissa changed into her surgery gown, and I put on my scrubs. At 7:03, Dr. Haendigis swept into the room to see if we had any last questions before the operation, and four minutes later, Melissa was shuffling down the hall toward the surgery room. I waited in the hallway with Melissa's parents and Raul Matthew until 7:23 when I was invited into the surgery room and told where to sit. Five minutes later, Myla was born.

Now, dump in 2 cups of plot thickener and stir things up "real good."

To this point, there had been only minor concerns over Myla's health. The skipping heart had unskipped itself, and the early delivery meant that the baby wouldn't undergo another two weeks of stress from contractions. As the medical team repaired Melissa, I watched the nurses measure Myla. Strangely, they said nothing as they worked on her. I found that odd. After a few minutes, the nurses invited me over, and it was then that I got a closer look at several prominent spots on Myla's skin. I asked what the spots were, but the nurses were at a loss.

This, was the beginning of the uncertainty.

I thought it was odd that nurses who had delivered hundreds--perhaps even thousands--of babies had no clue what these spots could be. Surely Melissa's doctor would know? Nope. Later that day, neither the dermatologist or the pathologist know what the spots were. Wow.

Back to the delivery room. Just 36 minutes of giving birth, Melissa was then carted to the hospital room where she was able to hold Myla and begin her recovery. A couple hours later, I followed Myla down the hall where she had her blood pressure taken and was given her first bath. I continued to ask about the spots, but like before, nothing was known about them. I was almost more intrigued with the ignorance of the medical staff than I was with the spots themselves. As far as the spots, I couldn't help but think of the episode of Good Eats in which "cousin Ray" tried to sell Alton spoiled and spotted shrimp by declaring, "Them there's leopard shrimp." The medical staff seemed to know nothing about Myla's condition, so I came to an understanding with myself that Myla must be "one of them there leopard babies."

The next day we took a family picture with our new addition. Melissa was the picture of a content mother. As with the day before, doctors checked on her condition, but nothing was know for sure. A biopsy was taken at the request of Dr. Fondak, a dermatologist in Kokomo, and then sent to Dr. Bernie Ackerman in New York City for analysis. According to Dr. Fondak, "Bernie is God." If anyone would know, it would be this guy. Finally, there seemed to be someone who could answer our questions about what these spots were. All we could do is pray and wait for the results.

The spots began to fade as seen in this picture taken when Myla was 5 days old. Meanwhile, we carried on with life as normal with Raul Matthew playing "acorn barnacle" (don't ask) and me learning the ways of the wok. The semester started six days after she was born, and 4 days later, we were in Lafayette for Myla's first doctor appointment. Here's Myla sunning on the 26th to raise her bilirubin count. The next day, we paid a visit to the dermatological office of Dr. Fondak in Kokomo, and here's a picture of us in the parking lot before our meeting. His patients are generally elderly, so we were instructed to whisk Myla into a side room in the office and wait for Dr. Fondak to arrive, which he did shortly thereafter. During our discussion, he gave us the report he had received from Dr. Ackerman.

Here it was--finally.

The diagnosis, while not 100% certain, was leukemia cutis. I looked down at this poorly faxed copy of the report and struggled to process what this meant for Myla, and for us. The diagnosis was heavy, but there was still a ray of hope. More testing would be needed.

We were referred to one of the leading childrens' hospitals in the country for further testing, so on August 28, we arrived at the Riley Hospital for Children in Indianapolis where we headed up to the Hematology/Oncology MSA (Medical Service Area) on the 3rd floor of the Riley Outpatient Center. This was an unsettling experience for us. It was our first time of seeing lots of children with cancer with their bald heads and concentration camp appearances. What were we doing here? Despite the scary environment, I can't say enough about how wonderful the medical staff was to us during our visits, and Larissa and Kris in particular. They took a scary time and made it okay to be there. We were assigned to Dr. Kumar, who was wonderfully and cautiously optimistic about Myla's condition. We decided to continue with the CBC tests for the time being, but if Myla's white blood cells were to rise, then we would need to do a bone marrow test to confirm the presence of leukemia. They might have done this test earlier, but at two months old, the bones are so very small. At three months, it's not much better, but we'd have to do what needed to be done if it came to that.

During one of our visits to Riley, a dermatologist from the hospital came in to have a look at Myla. It didn't take him more than a couple of minutes to look at Myla's spots and conclude that she doesn't have leukemia! Instead, she had something called a "leukenoid reaction" of the skin. These spots would eventually disappear altogether. I wanted to celebrate and end this dreadful period of uncertainly altogether, but I still had a copy of the leukemia diagnosis from Bernie the Divine. I told the dermatologist, "I would love to believe you, really, but I have one major obstacle standing in the way of my optimism: I have this letter from another doctor in which has diagnosed her with leukemia after closely examining her biopsy sample. How am I supposed to interpret her condition in light of this conflicting information?" Like an actor in a TV drama, this doctor folded up the diagnosis and handed it to me while pronouncing: "Send this back to Dr. Ackerman with an invitation to Myla's first birthday party." It was one of those lines you would expect to see as an inset quotation within a Reader's Digest article. I admired the situational acting, and for the first time in a while, I felt the oppressive cloud of uncertainty lift. Myla might be okay after all. Melissa, however, was less inclined to join the party, and as it turned out, she was right.

In the days that followed, I tried to keep things normal for Raul Matthew as we played putt-putt golf, went to state parks, played games, and went to special events like this Civil War reenactment. Myla continued to grow and the spots continued to fade. Here she was at 5 1/2 weeks old.

On October 22, we took Myla back to Riley to have another Complete Blood Count (CBC) test done. Here's a picture of her looking happy in the waiting room, and another of her the following day. There was some cause for concern here as Myla's white blood cell counts had risen above the normal range. Plus, abnormal cells appeared in her blood. Although the spots were disappearing, the rising count and abnormal cells was cause for concern, and we could see it on Dr. Kumar's face. Her optimistic demeanor had largely vanished, and she spoke to us in comforting and concerned tones. We sensed that our lives were about to be turned upside down, but then again, this might just turn out to be nothing at all.

On October 30, we were back at Riley for another blood test. Unfortunately, her white blood cell count remained elevated, and there were also more of the abnormal cells in her blood stream--an indication of leukemia. It was now time for the only reliable test for leukemia--the bone marrow test.

The beginning of this blog picks up the rest of the story.

After writing this, I find myself emotionally exhausted . This entry has forced me to synthesize the events leading to Myla's diagnosis into a meaningful whole, and I guess that was good. To be honest, there were many points along this journey when I made conscious attempts to avoid remembering details. I figured that if her condition turns out to be nothing, then why would I ever want to go back and read the thoughts and feelings I had during this time? :) Anyway, I'm glad I did this, and I hope this fills in some of the missing details on Myla's story.

The Tunnel at the Beginning of the Light

2007-11-28T11:31:00.000-05:00

During the last few days, we have transitioned into a new phase of Myla's chemotherapy. The first 10 days were carefully measured by one chemo treatment after the next. Then that phase ended, and with it went the sense of measurable progress. There were no chemo treatments to check off. Now what?

If you have been to a televised football game know how anticlimactic TV time outs can be. One moment of the game is marked by intensity and rising the drama, and the next moment is just 22 players standing around looking like rhinos at the zoo on a slow day. Meanwhile, fans at the game can only wait as viewers at home watch Maria Sharapova snap pictures of that white rat-dog followed by ads featuring heavy-duty pickup trucks crashing through one block wall after the next. (By the way, if Chevy is supposed to be "like a rock," then why are GMC trucks constantly crashing through rock-like walls? Isn't that like, "A house divided against itself can't stand?" Or am I just reading too much into this?) Anyway, we've just been waiting during these last few days to see how Myla's system responds to the chemo.

We got a positive report from one of the doctors over the weekend. Myla's monocytes appeared to be reappearing, and that's a precursor of her immune system restoring itself. Today's blood tests, however, had the monocytes back at zero, so no rebuilding to report yet. Hopefully tomorrow. The initial report led one of the doctors to tell Melissa, "This isn't the light at the end of the tunnel, but at least we see the tunnel." So, the revised report, I guess, is that we hope the tunnel is just around the next bend.

We've had some encouraging developments during the last couple of days. The first one I can't share in detail yet, but I'll have more on this exciting development in the weeks that follow.

Second, we received a bouquet of cookies from Jenn and Don, both former students that I've had the pleasure learning from at Indiana University Kokomo. Thanks so much! I'm sure we'll eat the cookies, but in the meantime, the bouquet will make a great centerpiece to one of the Sandra Lee "tablescapes" that I make for each meal we have at the hospital. Finally, we received a large flock of cranes from Michael and Michelle Pothoven, two siblings from Plant City, Florida. They look great, and I'm sure they'll be fun for Myla to look at. Here are also some encouraging verses that Mary, their mother, included in the package.

Upon returning home today, Raul Matthew and I found several additional reasons to be thankful including a care package from David and Terese, and a cool 3-D card from DeDe (cat not included), dinner money from my Grandma Jones, and a Starbucks giftcard from Raul & Lucy Canez. We were also encouraged by kind notes from Jeff; Jane, Dale, & Sean; Bob & Janie, Kelly & Ed, Jerry & Joyce (check out the great handwriting here!); and Roger & Carmen. There are many more people that I want to thank on the blog, and hopefully I'll get a chance to do that in the next couple of days. Not being able to be at the hospital much has slowed me down in this respect.

I also want to say a special thanks to Julie for entertaining Raul Matthew while I taught class this afternoon!

Also, thanks to the Genesis class at Bible Baptist Church in Kokomo for the giftcard to convenient stores of, Speedway.

And now, without further ado, the pictures:

Our cat, Britley, standing guard over the cranes (yeah, right).
Oscar the Grouch tends to Myla.
Myla sleeping over Melissa's shoulder.
Myla laughing.
The messed-up parking situation on IU Kokomo's campus.
Two of my favorite students. I'm not sure who the two in the middle are. :)
The ubiquitous Epi-Clenz at Riley Hospital. Doctors and nurses use this cleanser each time they enter and exit our hospital room.
Myla getting her temperature checked. Here's how the ladybug on the ceiling saw this.
Myla looking around, smiling despite the cold stethoscope, and sleeping.
Raul Matthew and his grandmother working on projects in the hospital room.
A rare picture of me holding Myla.
Myla, again.

Fair warning: Tomorrow's post will fill you in on the details you missed leading up to Myla's hospitalization. "The Quest for Myla's Diagnosis--The Untold Story." Or something. This post will mainly explain what happened. On Friday, I want to follow with a related post about how Melissa and I have emotionally, spiritually, and psychologically processed the stratospheric levels of uncertainty during the early days of Myla's condition. And, eventually, I'll write the "Mylan Creed," which will be a more thorough and systematic explanation of how we have interpreted her condition.

Sick of being sick

2007-11-26T02:38:00.000-05:00

There hasn't been much to report on during the last few days, and that's not all bad. Myla's status has remained about the same, and it's just a waiting game until her immune system rebuilds itself. So far, the predictions of serious side effects have gone largely unfulfilled, and there is some indication that the medical staff are a bit taken back by the good shape she is in. For that, we are thankful. So, it has been a good "thanksgiving" after all.

On the downside, Raul Matthew has been sick with flu-like symptoms; we've been holed up in our room at the Ronald McDonald House for the last few days. Most of the people here at the house had taken off for the holidays, so it's been very slow, very quiet, and more than a tad on the lonely side. Not being able to see Melissa and Myla for Thanksgiving, even though they were only a block away, was a downer. I will say this, though--the care packages that my colleagues at IU Kokomo gave to Raul Matthew played a KEY role in keeping him occupied during this time. Thanks so much to all of you who contributed! You saved the day, or the entire weekend in this case! :)

Our intention during RM's sickness was to play it safe by staying away from the hospital room. We visited the hospital last night for a few hours since RM had seemed much better during the last couple of days. We thought he was finally over what he had.

WRONG! (I write this at 2:30 AM)

Very wrong. Let's just say that I have a few loads of laundry to do in the morning and leave it at that. RM hasn't kept much down since last Wednesday. I might need to take him back to his doctor today or tomorrow. I'm not convinced that he has the flu because he hasn't had much of a fever, but we'll see what they say.

Myla also had problems keeping things down, but that has been a side effect of the chemo treatments and not the flu. She's lost a few ounces of weight in the last couple of days. More noticeable to me was her thinning hair. This wasn't as apparent to Melissa because she has been with Myla the entire time, but it was the first thing I noticed. Not to worry, though. I've just placed an order online for a case of Ronco's "Hair in a Can."