Christmas in September

Jeffrey prayed for breakfast this morning: "Please, let today be the day that they let Michael come home." Moments later the phone rang with news that Michael was finally going to be released! As we piled into the car to head to school, Timothy said that he felt like it was Christmas Day and he'd just gotten exactly what he wished for. That rather perfectly describes the way we all feel.

Thirteen days after he began a four-day round of chemo, Michael is finally home. He is completely drained, achy, exhausted, but . . . home! Merry Christmas, everyone!

The Blessing of "C. diff"

Michael is still at the hospital!  We are finishing day eleven for this round.  For reasons the doctors can't explain, his body is taking far longer than expected to "flush out" one of the chemotherapy drugs.  He started clearing the drug quite well, and he has been terribly close to being sent home since last Tuesday.  Each day brings more blood tests and more disappointing results.

Since last Monday, Michael showed some symptoms that made them concerned.  He was tested for C. diff (a bacterial infection of the intestines--trust me, that's all you want to know); he's got it.  It was a flurry of activity when they diagnosed the C. diff.  They slapped a quarantined notice on his door, wheeled a special cart of gowns and gloves outside the room, and issued the lock-down.  While that means that Michael can't leave his room, it also means that we can't have a roommate.  We have had some lovely roommates, but no one really wants to have a roommate.  Sharing a room affects every aspect of your stay.  The C. diff has turned into a real blessing!

(Michael also wants me to note that getting to watch the past few Cardinals baseballs games on tv has been a pretty good perk, too.)

The Third Round

Michael went back to Children's on September 16 for his third round of chemo.  This one has been the worst.  An anticipated three to four day stay has turned into almost a week.  He has been quite sick, has developed an infection, struggled with a fever and some difficulties with his heart, and can't seem to flush out the chemo to the levels required to be able to leave.  It's been difficult to accept that there is nothing that he can do to make his body work faster, but he's doing his best to have a good attitude.

Special Blood

Once the topic of bone marrow transplant (BMT) arose, the rest of the kids in the family became an important part of Michael's future.  Having a family donor as a bone marrow match is of great benefit when looking into BMT.

The four siblings went to their pediatrician one morning to get their blood drawn.  They were excited to see if they could help Michael and to get to miss an hour of school!  They each did very well.  They sat so still and didn't make a peep.  Kristen sweetly asked the nurses:  "Are you only going to get blood from my arm?  I have LOTS of bloods all over, and he can have it all!"  The nurses were impressed with their willing attitudes.  The kids certainly had a story to tell when they got back to school.

We waited to hear if any were a perfect match for about a week.  Then the call came . . .  Timothy is a perfect match for Michael!  It was a wonderful answer to prayers and made BMT a viable option for Michael.  Timothy's response was incredible.  He tells everyone who will listen that "he has special blood that can save Michael's life" and shows them all the imaginary hole in his arm where they found that "special blood."  He is looking forward to the anticipated time that he will get to spend in the hospital with Michael and all the attention that he'll get during the preparatory appointments in the meantime.  Michael's response was a bit guarded at first.  Since Timothy's greatest aspirations are to be a beautiful ballerina or a sparkling fairy princess, Michael was concerned that some of that insanity might seep in during transplant.  Once we assured him that he would still prefer basketball to bedazzling, he was excited.

The decision about BMT has yet to be made.  Michael will have another bone marrow biopsy in early October.  The results of that test will determine which course will be best for Michael.

Life in the Seventh Grade

Michael was excited to be able to go to school for the first time on August 25, having only missed three days of the school year.  He quickly found himself surrounded by great friends who were offering to carry his backback, help with his schedule, and get him caught up on homework.  His teachers greatly extended themselves to help him fill in the missing days and know what work he could do at home.  What a blessing Christian friends and a Christian school have been!

Since then, Michael has only missed school on the days that he was in the hospital.  He has been working hard at home and in the hospital to keep up to date on his work.  I'm not sure that he enjoys having a mother who is a teacher, but it's worked out well that I am able to provide some help.

Michael enjoys the social aspect of school.  He had fun one day staying after school to watch a soccer game.  He admitted that he would have rather been on the team playing than sitting in the stands watching, but maybe next year??

"Fun" at the Hospital

Though it sounds unbelievable, the time Michael has spent at Children's is not all bad.  The staff is focused not just on making the children comfortable but allowing them to have some experiences that could actually be ones they would enjoy.

During his second round, the St. Louis Cardinal's mascot Fred Bird came for a visit!  Fred Bird came with the umpires from the Cards game the night before.  The umpires and Fred Bird spent quite a while visiting, brought gifts, and took lots of pictures that Michael will be able to display.  Different groups within the hospital have provided Michael with lots of gifts from blankets and pillows to games and books.  He is truly learning to appreciate the small joys in the midst of the larger trial.

So many of YOU have made his time in the hospital comfortable.  We've been amazed at how many have come to visit.  The snacks, the books, the movies, the games that you've brought or sent have made the time go by as quickly as possible.  We thank God for each of you and your thoughtfulness.

The Days that Changed Everything

On July 19th, after spending a week at camp and just seeming too tired, listless, and pale for reasonable explanation, we took Michael to see his pediatrician.  It was only his second "sick" visit to his doctor in his life.  It didn't take her long to send him right to Children's Hospital in St. Louis with suspicions ranging from a virus to cancer.  Before the day was over, the diagnosis was made--Acute Lymphoblastic Leukemia, and Michael was admitted into the hospital.  He spent the next month undergoing chemotherapy while the rest of our family grew accustomed to a new "normal."

Michael suffered few side effects from his initial round of chemo.  We were all thankful for this and the way that so many wonderful family and friends surrounded him and us with great care.  On August 19, we learned that Michael's leukemia was in remission.  What an answer to the prayers of so many!

Michael returned after a few weeks for another round of chemo.  It was more difficult for him, but it was only days instead of weeks.

His first real setback came quickly after that second round.  On the evening of our celebration for Kristen's fourth birthday, Michael developed a fever and had to return to Children's for several days.  These fevers are said to be typical, but they are frustrating.  While we can plan for scheduled visits to the hospital, these surprises leave all of us a little unsettled.

The past weeks have been a whirlwind of activity, information, and emotion, but we have seen God bring us through each step.  Though it's hard to say, we are looking forward to what He has planned for Michael and our family in the coming months and years.