Numbering our Days

It's Day 4. The transplant team has taught us to label each day by number. The days before the transplant were -5, -4, -3, etc. It was much like a rocket launch. Just without the rocket. Or the launch. Or the national news coverage. Transplant day was Day 0, and now we begin the slow march to Day 100.

Most days will just hold quiet struggles and small victories, but some days are important landmarks. The transplanted marrow is expected to engraft by Day 7 or 8. At that point, Michael's blood counts are supposed to start rising, and they'll begin watching for any signs of graft vs. host disease or other complications. Day 30 will quite possibly be the most important of this journey so far; Michael will have another bone marrow biopsy to determine his remission status after transplant. Pending good results, he will continue in basic isolation until Day 100 when a reevaluation will decide what "normal" activities he may be able to resume.

We are not sure at what point, Michael will be able to return home. He seems to be responding well recovering from the side effects of chemo and radiation. He is maintaining reasonable strength. He has had one fever, but it was quickly eliminated with antibiotics. With the mucositis pain, though, he is not eating or drinking. All of these things and the coming results of engraftment factor into the decision to allow him to go home.

Michael is still suffering from mucositis, the ulcerated sores in the mouth and throat, but his pain medications are helping. He has been sleeping quite a bit with periodic interruptions for taking medications or a session for physical therapy. The staff makes every effort keep his stay pleasant. His nurse today dressed up for Halloween as a Cardinal baseball player in Michael's honor.

Four days down, ninety-six to go!

Hanging Up the Cape

Our superhero went back to school today. It was time to return to reality. He has thoroughly enjoyed soaking up the wonderful attention that came with his new-found notoriety.

After the transplant on Thursday, Timothy bounced back quickly on Friday. The nausea was gone. He had very little pain at all. He wanted to experience everything. He ordered all of his favorite meals by 10 in the morning. I got rather nervous calling the hospital cafeteria after they started questioning whether I was truly ordering again for the patient in the room. He took a walk all over the ninth floor. My job was to follow with his IV pole, and I felt as though I were walking a rabid squirrel! He tried to meet and talk to all of Michael's nurses and doctors, finally deciding that Michael had way too many friends. He even helped to remove his own IV. On the way out, he stopped at the information desk to let them know: "I'll be back, but I'll only be visiting from now on."

We are so thankful that he was willing to do what he could for his brother and pleased that he had such a pleasant experience. He proudly saved some souvenirs from his little adventure. Anyone want to guess what he plans on taking to school the next time he has Show and Tell?

Our Own Little Superhero

It's official. We need to get Timothy a superhero costume. On second thought, maybe his hospital jammies will be just perfect.

Timothy did such a wonderful job today. The harvest of his bone marrow went perfectly this morning. He had a difficult time waking up from the surgery; the anesthesia-haze frustrated him for quite a while. He joined Michael in his room for the transplant and alternated between watching and napping. He enjoyed getting lots of visitors and receiving cards from his classmates and balloons from family friends. He had really been looking forward to being able to order all the hospital food that he wanted, but he struggled with nausea and vomiting well into the evening. He is fast asleep at this point, and I'm praying he will wake up to feel much better tomorrow.

Timothy's attitude throughout has been so sweet. At one point during the transplant while resting on the bed with Michael, he quietly asked, "So is my blood helping you to feel better yet, Michael?" He and Michael played a board game together when the transplant was over, and it was incredibly touching to watch the two of them do something so simple and "normal" on such a huge day for our family. When asked later whether he thought he or Michael had had the worse day, his immediate response was: "Oh, Michael. He has to spend lots more days in the hospital than me!" Probably the most important conversation with Timothy took place on the way to the hospital early this morning. He told me that he was happy to give his blood to save Michael's life just like Jesus was happy to give his blood to save all of us. Timothy certainly puts lots of things into proper perspective for us.

It will be many days before we are able to tell what the result of this transplant will be for Michael. One thing is sure, though. Today Timothy has certainly done everything in his (superhero) power to help his big brother.

The BIG Day

It has finally arrived! It's bone marrow transplant day! As I type, Timothy is in surgery to harvest his bone marrow. They anticipate that all will be ready to then transplant Timothy's marrow into Michael by early afternoon.

Timothy did quite well with the preparations. He mentioned that he was a bit scared on the way here, but it didn't slow him down one bit. While waiting for the surgery, he insisted on doing the school work that he will miss today and tomorrow. He checked several times to make sure that he was going to get a popsicle and get to order some hospital food ("breakfast AND lunch so I don't miss any of my meals") when he awoke. After he drank some medicine to make him sleepy, the real fun began. He began striking muscle poses, grunting, and talking rather slooooowly. I managed to catch most of it on video. I'm sure it will come in handy some day. He will be sedated for the entire procedure. They anticipate a little soreness and will keep him overnight to monitor any pain or reaction to the anesthesia. He will be allowed to visit with Michael while the marrow is being transplanted. His room for the night will be right next to Michael's.

Michael's day will be far less medically exciting. He will simply watch what will become his new bone marrow drip into his central line and wait. And wait. Right now he is worn out and tired but eager to get this new chapter started. The strict rules in the bone marrow unit are lifted for this one day, and all his siblings will be able to come visit this afternoon. It will be wonderful--noisy, but wonderful--to all be in the same room for a little while.

We can't possibly say it enough: Thank you for your prayers for Michael, for Timothy, and for all of us.

A Wonderful Thought!

Sometimes we're a little slow. Michael and I just had a moment of clarity that we thought we'd share with you. In the post earlier today, I mentioned that he was finished with his chemo. What we didn't fully appreciate was that he may indeed be totally finished with chemo . . . forever! If God allows this bone marrow transplant to work, to heal him, to provide a cure, then he will never need chemo again. Michael thinks that we should have had a little party as the last chemo was administered. It's a few hours late, but we are having a quiet celebration here!

WARNING: Rated R/G for "Really Gross"

This post is probably not for the faint of heart. I promised many loving friends to keep them up-to-date on Michael's journey, and I'm not sure how to do that without including some of the more unsavory aspects of his situation. He is still in good spirits and has finished all his chemotherapy. Feel free to skip the following paragraph if you'd like.

The job of most chemotherapy drugs is to slow, prevent, or interrupt the growth of cancer cells. To put it simply, the drugs have the same effect on normal cells, too. One of the big problems Michael is facing now is mucositis, a rather common side effect for bone marrow transplant patients. The cells of the mucous lining of his digestive tract are being destroyed; that lining is becoming inflamed and ulcerated. Painful mouth sores were expected. We are so thankful that he is not struggling with any of those mouth sores, but his throat (and probably on through to his stomach and intestines) is quite swollen. His saliva is so thick that it is nearly impossible to swallow. The result for him is that he is frequently gagging and vomiting. He also finds eating or drinking to be nearly impossible. Though this is a minor problem compared to some that others face, it is his current prayer to be rid of this issue.

Other than the mucositis, he seems to be doing pretty well. Today was full: he learned a new card game, made a "Go, Cards!" poster, did some experimenting with tin foil art, and had a physical therapy session. Tomorrow will be a day of complete rest from all chemotherapy.

I apologize for being rather graphic in this post. You can't say that I didn't warn you!

Squeaky Clean

The first of the two chemotherapies that Michael must have has been the most interesting so far. He received it Saturday and Sunday, and he seemed to tolerate it rather well. He was only sick a few times and spent the rest of the time resting, playing games, doing his homework, and watching the Cardinals' games.

This chemo has some strange side effects, though. It leaches through the skin. They anticipated that it would give Michael a nice tan, but unless it has yet to be seen . . . He must be related to his mother and is genetically unable to look any darker than Snow White. He is required to clean his skin every six hours. Every time the clock reaches the hour of 6 or 12, he must stop everything (including sleep--not his idea of fun) and shower WELL. This requires a complete change of clothing and all bed linens. The showering will continue for a while, but this chemotherapy is done. Never has a junior high-aged boy smelled so clean!

One more chemotherapy to go, and then it's on to the bone marrow transplant.