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.

Cross One Off the List

Michael's days of radiation are over. His report is that "it wasn't too bad." Each of the last three days, he was transported twice via wheelchair for a long walk through connecting walkways to the radiation department of Barnes-Jewish Hospital next door. After the typically long wait there, he would undergo about 20 minutes (10 minutes on each side) of total body irradiation. He would simply be positioned in an awkward sitting pose, be secured with various velcro straps and tape, and then . . . sit. Then they'd swivel him around and repeat the process. Even though it was boring, we pray that it accomplished its purpose.

The immediate side effects were not too severe. Thank you all for your specific prayers. After the initial day's sickness and jaw pain, he did not suffer much anymore. A general "sick" feeling remains, but it doesn't bother his spirits too much. The radiation is somehow quite harsh on the saliva glands which causes the jaw pain and some other odd reactions in the mouth. Again, Michael seems to endure those things with quiet grace. The long term effects of the radiation may not be felt for quite a while. He is expected to struggle with any exposure to the sun, cataracts, and some stunted growth within the next decade.

We are happy to say that we can cross off "radiation" and move on to the next challenge. Each day brings its own unique trials, but one of my favorite verses (Ps 46:1) says: "God is our refuge and strength, a very present help in trouble." What an amazing promise!

Let the Games Begin.

Today began two important events: the World Series and our bone marrow transplant adventure. Michael entered the hospital on Tuesday afternoon and settled in. His radiation began early Wednesday morning. He is to undergo twice daily radiation through Friday. The first day went as predicted; he experienced some sickness and rather intense jaw pain. The day ended on a great note when he watched his Cardinals win the first game of the World Series! He even muted his television to listen to the fireworks live.

He will start his chemotherapy on Saturday. One drug will require four showers a day but will supposedly give his skin a nice tan. Next Wednesday will be a day of resting from all treatment in preparation for the transplant the following day.

The time here will be long, so the plan is to keep him busy. His art and occupational therapists are teaming up today to help him make a "rally squirrel" rally towel for the game tonight. He'll see a physical therapist regularly. The room is outfitted with a great tv and Xbox. He plans to begin learning to play the new guitar that his church youth group's gifts helped him to purchase. (I would add the fact that I'm always armed with exciting school work that he can do, but he has forbidden me to mention it.) A calendar hangs in the room to chart each appointment or event and help him to count down the days until the hospital stay can end.

We cannot be sure when the end will be for this stay. Until then, we will just be content to cross the days off one at a time.

Time Out!

We hit the pause button as a family this past weekend. These next weeks will prove to be a huge trial for all of us--Michael foremost, parents, and siblings. Dad and Mom will take turns spending days and nights at the hospital, so we can share time at home with the children and at the hospital with Michael. Except on transplant day, the four siblings will not be able to visit Michael at any point over his stay in the hospital. (They are permitted to look through two glass walls at him, but that's not going to entertain the troops for very long.) Given these huge changes, we decided to spend some dedicated time together.

We've never taken one of these "staycations" that are so popular these days, but that was our only option. We'd planned one night at a hotel (love those business account hotel points!) for swimming, jumping on beds, junk food and breakfast buffets, but Michael's recent surgery was rescheduled which made those plans impossible. Instead, we hid out at home--"camping out," playing games, watching movies, snacking, and relaxing. We took some time to visit a nearby state park and play, walk, and take lots of pictures. We stayed up late and got up later. It was a great final celebration of what used to pass as "normal" in our little "party of seven."

I don't know that we are ready for what lies ahead, but we are quietly turning the page to begin the next chapter.

Hamsters on a Wheel

For the past two and a half weeks, we have truly felt like those poor creatures who run themselves into exhaustion and end up right where they began. (Lest you think that I feel even a slight compassion for hamsters, let me assure you that I view them as part of the disgusting rodent family that should NEVER be elevated to pet-status. My pet peeves, however, are a topic for a different blog entirely.)

The normal path to a bone marrow transplant takes several months. Much preparation is done to make sure that the patient's body is strong enough to face transplant and to establish a baseline for future measurement and testing. We have had to squeeze the usual timeline into a little over two weeks. We've spent almost every day at the hospital running from scan to test to appointment. Michael's had his eyes, ears, teeth, heart, lungs, kidneys, and countless other organs checked and rechecked. He even spent several hours taking IQ, personality, and a version of standardized achievement tests. He's met with doctors, advocates, coordinators, and therapists. We even had to throw in a couple of appointments for Timothy to clear him as a healthy, viable donor. Everyone has done his best to make the experience pleasant for us (We love you and your obsessive calendars, Erin F.!), but it has been a true whirlwind.

The final step for clearance to head to BMT was a simple surgery today. Michael needed to have his port (the internal line for all IV access) removed and a broviac (an external option that provides multiple lines to access) inserted. The surgery was only 45 minutes long, but we were there for eight hours. He is still experiencing a good bit of pain and has been quite sick. He was disappointed to not be able to keep his port as a souvenir, but will settle for the battle scars on his chest. He's also not a big fan of the lines that now protrude from his chest and will limit his activity. He said that this has been his worst day so far. "Bring back the chemo" was his opinion.

The bottom line is that Michael and Timothy are cleared for the transplant . . . and . . . we are tired!

To BMT or Not To BMT?

I never thought we'd face this question. Bone marrow transplants sound ominous, but it turns out that our answer was rather easy!

We could continue with the chemo and inhibitor drug for the next three years with the hope that they would prove effective in keeping his cancer in remission. There is no assurance that he would maintain remission, though. The best number that they could provide was "better than 60%." If at any point, Michael was not in remission, he would head to BMT. Looking down the road of the next three years, we learned that he would repeatedly face the same chemotherapies that made his last round of chemo rather rough.

On the other hand, a successful bone marrow transplant may provide a complete cure. Many struggle to find a suitable donor, and having a perfectly matched sibling donor is considered to be a terrific opportunity. The actual transplant and the recovery come with a long list of risks and side effects, but it should all be over in about one year. The year would be unpleasant, somewhat lonely, and full of many little battles, but Michael could resume a "normal" life far sooner.

Michael's initial reaction never changed--BMT. We spent a little more time praying and learning as much as we could. The doctors did not counsel us to make the decision either way. There was a rush to decide, though, because Michael was due to have another bone marrow biopsy. A "remission" result would make him ready for transplant and at a perfect "strong" time to handle the transplant. So, in a short time, we decided to undergo the BMT.

Michael will enter the hospital on Tuesday, Oct 18th. The first week will actually be a final round of chemo with radiation. The radiation is new for him, so we are praying that it will go well. This round is to remove any final cancer cells and prepare some room for new bone marrow. On the 27th, Timothy will have a sedated procedure, much like Michael's biopsies, to harvest his bone marrow. The actual transplant will take place about an hour later and is rather anti-climactic. The marrow will simply be hung in an IV bag and slowly infused. Then begins a long period of waiting for Michael to battle any rejection, to fight possible infection while he is completely susceptible, and to recover to normal white blood cell levels. He may be able to go home as early as 4-6 weeks later. Once home, his new lifestyle will be very protected for a long time.

Even though this seemed like a difficult decision, it ended up being a simple one. To BMT it is!

It Will NEVER Get Old!

We got the call today that Michael's biopsy last Friday showed that he is still in remission! "Remission" is suddenly becoming one of my favorite words; I don't think hearing it will ever get old.

Being in remission was the first step toward a bone marrow transplant. We're taking a rather warped path to get there which I'll take time to explain soon. In the meantime, we are just rejoicing that God has blessed with the good news of success in Michael's treatment so far. Thank you to each one of you that have prayed with us.

Diary of a Wimpy Kid

Michael's dreams of being a broad-shouldered, muscle-bound, hulking specimen of manliness died long ago. He's been wearing "slim" jeans, most even with those hidden elastic, cinching bands, since his toddler days. I can vividly remember the seasons that he insisted on tucking in his sweaters and sweatshirts just to help keep his pants up. He's accepted that he's built more for basketball than football (Sorry, Uncle Troy!).

The past days have made him far more aware of his physical limitations. The effects of his cancer and its treatment are becoming quite obvious. Michael struggles to stay awake for more than a few hours. His muscles have become so weak that even walking causes the uncomfortable soreness that most of us associate with those dreaded workouts. His energetic periods are predictably short.

His response has been interesting. Though he certainly has his moments of disappointment, he has PUSHED himself. He has gotten on the treadmill several times, even if only to walk for a half a mile. He has chosen school and church over sleeping or relaxing several times. He even spent a few minutes last night outside sighting in his shotgun for youth hunting season this weekend. I don't think he'll remember the times that he ended up thrown to the ground from the gun's recoil if he "bags his deer"!

He observed recently when thinking about keeping up with his classmates: "Mom, I was never the tough kid in class, but now I'm going to have to work hard just to be the wimpiest kid in class!" I was immediately reminded of God's promises in Isaiah 40:29-31. How thankful I am to know that "He giveth power to the faint; and to them that have no might he increaseth strength . . . they that wait upon the Lord shall renew their strength . . ."