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 . . .”

The Next Hurdle

April 24.  In two more weeks Michael will face the next hurdle in this race.  That day marks six months (Day 180) since his bone marrow transplant.  He will have another biopsy done that day, and we will learn whether the transplant continues to be successful and if he is still in remission.

On one hand, the last six months have passed in an unbelievably quick blur.  The doctors are quite pleased with Michael's progress and remark with surprise at each clinic visit that he has not had any side effects, setbacks, or sickness due to his compromised immunity.  I am sure that if we had dealt with complications or hospital stays, we would feel that the time had been far more trying.

On the other hand, Michael has had to learn much patience over these months of following all the rules that govern what he can eat, where he can go, and whom he can see.  He is counting down these last fourteen days until his restrictions are lifted even more.  He'll have to wait until a full year has passed before his immune system is expected to be "normal" again.  No matter how long the days are for him, we count each healthy one as a true blessing, a gift.

The butterflies are already beginning their fluttering.  Even though we know God's plan is perfect, we still struggle while waiting for the results of each biopsy.  Should this biopsy show that the cancer and/or the chromosomal anomaly have returned, a new plan will begin to attempt to get Michael back into remission and repeat the transplant.  If the results show that he is still in remission, then biopsies will be repeated at frequent intervals.  Thank you for praying with us as Michael continues his journey.

If I Had One Wish . . .

During the first few days after Michael was initially diagnosed with leukemia, so many people with official titles and specialized roles, each bearing large binders of paperwork, came through the revolving door to his hospital room that our heads were spinning.  I was transported back in time to that first semester away at college when all the freshman information, dorm/campus handbooks, and the textbooks and syllabi for each class were dumped in my lap.  The overwhelmed, frightened feeling was similar, but this time the stakes were much, much higher.  One pamphlet stood out from the rest:  the Make-A-Wish program.

Michael's form of leukemia qualified him to be granted a "wish."  Just like you, we'd heard of this organization and the wonderful things it does to bring some hope and joy to a struggling child; now we were to be one of those Make-A-Wish families.

Over the next months, Michael spent quite a bit of time thinking and researching different options.  Narrowing down his interests to just one proved to be a challenge.  He knew that he didn't want a "thing" that he would likely outgrow and is too shy to really enjoy getting to meet someone or "become someone" (like a St. Louis Cardinal!) for a day, so he knew that he was interested in taking a trip.  He was also concerned with making a choice that our whole family would enjoy.

Our wish granters were able to visit with us this week.  Michael combined several interests in his wish and is excited to announce that he is headed to Universal Studios in Orlando, FL, Kennedy Space Center, and the beach!  It should be a week of lots of activity and some relaxation.  We aren't sure when Michael will be able to go; we'll leave the timing up to his doctors.  Even if he needs to wait a year, he certainly has something to look forward to.  It will be several amazing wishes come true!

Spring Break Update

Our family has just finished a week of spring break.  We fit in as many fun activities with family and friends as possible.

Michael had a clinic visit and physical therapy session during our break.  The clinic visit was fairly routine.  Michael had lost a small bit of weight, but they attributed it to his being far more active outdoors lately.  They were pleased with his continued health and recovery progress and began weaning him off another of his post-transplant drugs.  Plans are being made for his six-month biopsy in several weeks.  His physical therapy is coming along as well as they expected.

Michael was a bit frustrated to learn that his restrictions this summer will include no mowing (or even being around mowing).  Michael enjoys his time on the mower, but I'm afraid that his dad enjoys Michael's help with the mowing even more.  They had to spend some time consoling each other.

Now, it's back to the daily grind.  The kids will head off to school again in the morning, and Michael will get back to work on his studies with me at home.  The break was wonderful while it lasted!

Deep Despair

Michael got home and caught me working on his blog without him.  He insisted that I add another post tonight to let everyone know that he is in mourning.

He joined in all the March Madness and filled out his brackets with great confidence; unfortunately, he is a Duke fan.  With Duke's loss today, poor Michael's brackets are effectively ruined.  He would like everyone to observe a moment of silence.  (Is it wrong that I am rolling my eyes as I type?)

A Confession

Michael is gone this evening participating in a Nerf war with his youth group, so I'm taking liberties with his blog.

We have all learned so many lessons from Michael's cancer.  Our family will never be the same, and I must admit that the changes are an unexpected blessing.  One lesson in particular has been on my mind quite a bit over the last weeks.

Struggling, hurting people are all around us.  Just in the past few months, so many people that we know have been touched by cancer.  A new teacher at Michael's school was diagnosed with pancreatic cancer over the Christmas holidays.  One of Michael's teaching assistants from several years ago, who has since married and begun her own family, lost a newborn to brain cancer.  A church friend began intense treatment for prostate cancer.  A dear family member who has battled cancer for the past six years was just told that he should not expect to live more than a year.  I'm confident that you could add many more people to this list.

In the midst of all this heartache, I have become keenly aware of the fact that my compassion for others who are suffering has not driven me to reach out as I should have.  For months now, our family has been comforted and encouraged in many, many ways--small gestures, large gifts, thoughtful notes, anonymous acts of kindness, and many prayers--by loving people near and far.  When I think about the number of times that I could have shown the same love to others who were heartbroken, I'm ashamed of my poor efforts. 

I am committing to change this failure on my part into a genuine mission.  I don't know that I'll ever be that unique person who seems to know just what to do or say or give to help others when they have a need, but I can certainly do better.  Maybe I'll just send a card, make a meal, run errands, help with childcare, or simply sit and listen, but I will do something.  I offer a heartfelt thanks to those of you who are such lovely examples of true compassion and encourage everyone to join me in finding and uplifting someone who is hurting.