School's Out! School's Out!

Tuesday was another landmark day.  We started with an appointment at the Hematology/Oncology Clinic at Children's Hospital and ended at the final Awards Ceremony at school.  Both events proved to be encouraging.

At the clinic appointment, Michael got good news.  The recent surgery to remove his broviac went perfectly, and the insertion site is healing beautifully.  He has gained a little more weight and was described as one of the most "rock solid" of the current transplant patients.  The transplant team is turning him back over for his continued care to the original team of oncology doctors.  They decreased his medications again; as of next Tuesday; he will only have one regular medication left to take.  We left the clinic so grateful for such a great report.

We raced from St. Louis back to school for the last event of the school year.  All of the kids were so excited (and so ready!) for this day.  We went to celebrate the end of the year awards for the younger kids but were quite surprised to find that Michael was included in the awards as well.  One of the teachers referred to him as the "ghost" in the classroom, but he was credited with some academic awards since he'd done the same work at the same time suffering at home with Mom.

It was wonderful and incredibly hard to think back over what this last school year included for our family.  When Jeffrey and Katherine were awarded their "Perfect Attendance" certificates, I marveled again at the wonderful health that God provided to our children this year to protect Michael.  When Timothy asked why he didn't get a perfect attendance award, I reminded him that he did miss a couple of days when he was at the hospital to share his "blood" with Michael.  He seemed perfectly satisfied with that little trade.  What a remarkable year!

Timothy has now finished first grade; Jeffrey, third grade, Katherine, fifth grade; and Michael, seventh grade.  The backpacks are emptied.  The year's important papers and keepsakes are on display or stored away.  The school year is finally just memories.  Bring on the summer!

Why Does a Pirate Wear an Eyepatch?

Michael was just wheeled back into surgery to remove his broviac.  These few quiet moments (well, as quiet as can be in a hospital) alone give me a chance to reflect on the last months and to take the liberty to share my own thoughts.

I am simply amazed at how much our lives have changed and at how many things have simply remained constant during our journey through cancer with Michael.  Those steadying, unchanging factors--the comfort and peace that come from faith in an all-knowing, all-powerful, all-loving God; the sweet, selfless care of so many wonderful family members and friends, old and new; and the crazy, predictably unpredictable life in our "party of seven"--have given us the foundation to continue to build our lives together.  The changes along this pathway have made our lives so much more sweet.

I won't bore you with all the ways our lives have changed.  Of course, Michael, Mark, and I feel like we are close to earning a medical degree, but the medical/physical changes are not important.  We have changed because of all of you!  So many of you quietly entered, or increased your presence, in our lives and truly modeled compassion and generosity to us and our children.  We will never be the same after experiencing such love.  So many of you prayed for Michael's healing and our family's strength.  We will never see prayer as "the least we can do" for someone again.

Probably the biggest change is in Michael.  He has always been a quiet, calm, "easy" child.  I know that entering the teen years is a hard time for any young man, and he has had to deal with a few extra issues and learn some BIG lessons on the way.  His cancer has forced him to recognize his complete reliance on God, to improve his responsibility in many areas (still working on this one!), and to become a bit more open and vocal.  In all our hours together in the hospital, we have enjoyed some interesting conversations.  For a mother to be able to spend lots of time talking, about all things superficial or truly important, with her usually quiet son is a wonderful change.  The most recent conversation was while we were waiting for his surgery.  He told me all these "interesting" things he had learned in his recent reading and researching.  I got to learn a plausible explanation for why all pirates seem to sport eyepatches.  Curious?  I'll let you ask him.

Next Step: Surgery

Monday will be the next big day in Michael's recovery.  Everything is lined up for his broviac-removal surgery.  He'll go in early (EARLY!) Monday morning for the surgery and should come home around noon, free of any bothersome lines coming out of his chest and the restrictions that come with them.

This is the first surgery that he is actually looking forward to.  Getting the broviac removed before the summer months means that he can swim freely, participate in any sporting activity he would like, and not suffer that junior high-aged embarrassment at being "different" when he spends time with friends.

He is concerned about how quickly he'll recover.  He had a rough time after the surgery to insert the broviac; he experienced quite a bit of pain and spent several hours being sick.  We are praying that this surgery will be uneventful.

Michael is in his last week of seventh grade.  He is finishing up in each subject and preparing for final exams.  With surgery and the end of school, the next week and a half will be busy for Michael.

Thanks to each of you who have faithfully asked about Michael, rejoiced with us over his wonderful biopsy results, and will now pray for him during this next step.

May I Have an Oreo?

This morning the phone finally rang with the biopsy results.  The report was all wonderful!  There was no sign of cancer, no recurrence of the mutated chromosome (the "Philadelphia Chromosome" that caused his rare form of leukemia), no evidence of any viral or bacterial infection.  The new marrow is still 100% engrafted, and all the other tests on heart, lungs, eyes, and ears showed no problems.  Michael was declared to "look really good!"

We have been warned that we are in a fairly unusual position with Michael's remission.  Since his cancer is rare and the treatment used to get him into remission was rather new, the doctors cannot be sure of what to expect. They'll repeat the biopsies more often than usual and continue looking for both the chromosomal anomaly to return and the cancer which would certainly follow.  They continue to believe, though, that it would be unlikely that the cancer would return if Michael is able to reach two years of remission.  So far . . . six months!

We were thrilled (and relieved) to hear the news.  Michael's response was a bit understated as usual.  He smiled and nodded when I whispered details to him while I was still on the phone with the nurse.  When I asked him later how he'd like to celebrate, he calmly asked, "May I have an Oreo?"  Gotta love a kid who celebrates such an important milestone with milk and cookies.

Still Waiting . . .

The results of Michael's biopsy are still not back yet.  At this point, we are eager to hear the news--whatever it may be--and move on to the next step.  Our prayer is, of course, that he will still be in remission.  If that is the case, Michael would head to surgery as soon as possible to have his broviac removed.  We anticipate the call any day now.  Thank you for waiting and praying with us.

Sometimes It's the Little Things

Michael's six-month appointment and biopsy went well yesterday.  The clinic appointment was encouraging.  Michael was given more freedoms with his diet and permission to be more active socially.  It may even be possible for him to attend school during the last few weeks of the year.  The doctors eliminated one more of his medications.  Pending a good biopsy result, they agreed to remove Michael's broviac (the external central line) in the next couple of weeks.  Each little bit of good news was like the old cliche:  a breath of fresh air.

The biopsy itself went fine.  He experienced some pain which lasted into today, but it was manageable.  We wait now for up to two weeks for results.  Michael has complained each time of a horrible taste in his mouth after the anesthesia.  It seems like such a simple issue, but it makes any food or drink taste awful for the rest of the day.  For someone who has had to fast for 12 hours, eating becomes quite important!  It was one of my strangest prayer requests yet.  As he was waking up, he swallowed hard and groggily said, "I don't taste it."  Yesterday was full of these little things, but sometimes it's those little things that mean the most.

Six Month Biopsy Eve

It completely amazes us to report that Michael has reached the six month milestone since his biopsy.  These months have brought many, many blessings.  Michael has stayed healthy in spite of his compromised immune system.  His strength and stamina are constantly improving.  He has been able to stay current with school work.  Our entire family has been healthy—an amazing feat for seven active, social people—during this important time in Michael’s recovery.  So many of you have been such an encouragement to us as well.

We spent today at the hospital, running from test to test.  Once again, the heart, lungs, eyes, and ears needed to be checked for possible effects from the chemo and radiation.  Initial results seemed fine; complete results will take some time.

 We will return to the hospital tomorrow for another biopsy.  The butterflies take flight again.  It will be a long two weeks until we’ll know whether the cancer or the chromosomal defect has returned.  The words from Isaiah are a real comfort:  “Thou wilt keep him in perfect peace whose mind is stayed on Thee . . .”