Biopsy Day

Tomorrow Michael will undergo another bone marrow biopsy.  It is hard to believe that four months have passed since the last biopsy, but the months have come and gone quickly and without any major incident.

Michael has a full day ahead of him.  He will first visit the oncology clinic and then have his biopsy. The afternoon holds tests on his heart, lungs, and ears.  We should have biopsy results in about two weeks.  The other tests will determine if the chemotherapy and radiation have caused any damage.  Those results will trickle back to us over the next week or so.

 

During the last biopsy, Michael required additional anesthesia during the biopsy.  While not cause for alarm, it may indicate that the frequent sedations are taking their toll on his body.

 

It will be a long day for Michael (and his sad mom who will not be able to be with him this time).  Thanks again for praying with us.

Happy Birthday!

Michael hit a milestone last weekend.  His immune system is one year old!  He did not appreciate my efforts to celebrate:  I tried to sing "Happy Birthday!" and repeatedly commented about "what a big boy" he is now.  He prefers to keep things a little more low-key. 

 

Since all of us weren't even together much over the weekend, it was difficult to have an official celebration.  We just spent every opportunity we had together remembering October 27, 2011--the events, the fears, the hopes, the intense physical struggles, the prayers, the people, the love and kindness, the blessings and victories.  Each one of us had a different perspective on the bone marrow transplant and the months that followed, but we could all agree that the last year has been an amazing miracle.

 

A year ago, the doctors, nurses, and coordinators were teaching us about all the side effects and complications that could occur as a result of bone marrow transplants.  In spite of all their promises and warnings, Michael has been free of complications.  The worst side effect Michael has suffered has been a mild skin rash.  It is simply hard to believe that the child I look at today is the same child who was so desperately sick one year ago.

 

I know I've shared before the prognosis that the doctors have given is that if Michael can remain in remission for two years, they do not anticipate the cancer ever returning.  One year down; one year to go!

Lather, Rinse, Repeat

Once the school year starts, life always seems to take on a prescribed routine.  An exciting, chaotic, unpredictable routine!  We have settled into the crazy routine for a month now, and Michael seems to have made the adjustment without any problems.

 

Playing on the soccer team seems to be the most exciting part of the school year so far for Michael.  The physical effort and long hours on game days tend to exhaust him, but he enjoys every minute.  When I sit and watch him play in a game, I am simply overwhelmed.  Just one year ago he was so weakened by chemotherapy and preparing to face the fight of his life with a bone marrow transplant.  Soccer was the furthest thing from my mind then.  What a year it has been!

 

Michael's clinic visit last month was uneventful.  All bloodwork and his checkup were fine.  He'll have another visit next week.  We remain just amazed at and thankful for God's goodness to Michael and our family.

Our next big day will be sometime in early December.  Michael will have another bone marrow biopsy.  Until then, we'll keep taking each day and its "routine" excitement one at a time.

A New Start

The school year has begun!  We had some days shortened due to heat and ended the week with a tornado warning, but according to Kristen, our new Kindergartener, it was the Best Week EVER!  All the kids are adjusting well to another new school year.

Michael is doing well with juggling the physical demands of being a part of his soccer team and adjusting to attending school at school instead of at home.  He's been tired, but just being "one of the guys" again has encouraged him.  This will be an exciting school year.

 

Our first day of school

 

Good News!

The phone call we'd been waiting for finally came!  The results of Michael's biopsy are back.  We are so thankful to report that it's all good news:  there is currently no sign of cancer or the Philadelphia chromosome.  The new, healthy marrow is still 95% engrafted.  Only one more test result was pending, but the doctors were confident that it would simply reaffirm what the rest of the tests showed.

Thank you for praying with us.  We remain incredibly grateful for Michael's continued health and are excited to see what God's plan is for Michael's future.

Whirlwind Month

The month of August has passed so quickly!  We are in our very last days of summer; school starts for the kids on Monday.  (ALL the kids go to school this year.  It will be a sad day and a difficult adjustment for Mommy, but I don't suppose that you check our blog to get an update on the life crises of middle-aged women.) 

During the last weeks, Michael has stayed quite busy.  He began soccer practice two weeks ago.  He feels that though he began quite behind the other boys in terms of physical strength and stamina, he has made great improvement.  He is really enjoying playing and looks forward to his first game next Tuesday evening.

 

In preparation for school, Michael also began a crash course online to improve his typing skills.  One of the classes that he missed last year was Keyboarding.  Our focus was to keep him current in all of his core subjects, so keyboarding skills were low on our list of priorities.  When he realized that his class would move on to Computer Skills this year, he decided to do what he could to catch up.

 

The Friends of Kids with Cancer is a wonderful organization in St. Louis that offers a wide variety of opportunities and events to encourage "kids with cancer" and their families.  They provided tickets to a couple of Cardinal games recently which Michael was able to enjoy with family and friends.  One evening they invited many families to attend an after-hours event at the Magic House (a children's museum and top attraction in St. Louis) and provided great entertainment, dinner, and bags of school supplies for each child.

Throw in a few sleepovers, miniature golfing, some bowling, more swimming, school shopping, and family outings . . . you are up-to-date.

 

Probably the biggest event of the last weeks for Michael was his latest biopsy.  Last Tuesday, we took him for what is becoming a pretty routine procedure.  He saw his doctors in the clinic first, and they thought he looked fine.  Preliminary blood work came back looking great as well.  The biopsy itself took a little longer than usual.  According to the nurses, Michael was "jumpy" under the initial sedation, so they had to continue increasing his dosage.  We spent a while trying to convince him that he did want to wake up and come home with us.  I'm sure better parents wouldn't have so enjoyed all the distorted faces and groggy comments, but at least we stopped short of taking pictures or video.  We are still waiting for the results of the biopsy.

A few days before we headed to the hospital for the biopsy, we got news that yet another family in our small world was affected by cancer.  A young boy, the little brother of some of our children's classmates, was diagnosed with a pelvic cancer.  We stopped by to visit with the sweet boy and his family while we were at Children's.  Again we were reminded of how thankful we are for this journey that Michael is taking; it has taught us much and opened our eyes and hearts to the suffering of so many others.  As we shared with our friends, we agreed that the peace that comes from knowing that our God loves and has the perfect plan for both of our sons can sustain us through any trial.

 

I think I can safely promise that the next update will come soon.  We expect biopsy results any day now.  I sure wish this lesson in patience were a little easier to learn!

The Conqueror Returns

Michael came home from his week at camp tired but happy and healthy.  He had a great time.  We were so thankful that he had color in his face, had a typical amount of teenage energy, and didn't need to nap repeatedly.  What a difference from last year!

He got home Saturday to find that an wonderful organization Friends of Kids with Cancer had given him a block of tickets to the Cardinals/Cubs game that evening.  Off he went with a family group to watch the Cardinals win 12-0.

Today brought another monthly checkup at the hospital.  The doctors declared that he looked great and would see him in August when he comes back for his next biopsy.

We'll keep you posted . . .

Dear Journal,

A year ago today, I began a record of Michael's journey in a journal of sorts.  The entry for July 19, 2011, is simply:  "Diagnosis:  ALL."  I obviously didn't write much, but the message in those few letters was life-changing.

Each day, the journal has grown.  It soon chronicled the change in his diagnosis to Ph+ ALL (Don't google it; its prognosis is frightening and certainly not God's plan for Michael so far!) and all the medical procedures that followed.  Many of you are mentioned in Michael's journal; you called, visited, sent encouraging cards, and helped in amazing ways.  The journal continues to record his path of remission and recovery.  I hope someday that Michael will be able to look back through the pages and remember with joy and gratefulness all that God has done for him.

Reaching the one-year milestone is bittersweet, but I think that Michael and our family can honestly say that we are thankful for what this past year has taught us and will continue to trust in the God Who holds our future.

Summer Camp

This week Michael is attending Junior high camp with his church youth group.  That sentence is loaded with meaning for this family.

It was after he arrived home from camp last year that it became obvious that there was a physical problem with Michael.  In the days prior to camp, he'd had a low fever that kept him home from a few activities.  The fever disappeared, though, so we packed him up and sent him off to camp.  He had a great time, but it ended up being a long week for him.  In addition to some bizarre injuries, like the bunk above him collapsing, he reported that he had been a bit tired all week.  When he got home, he napped.  And napped.  And napped.  The next two days, he just wasn't himself--tired, pale, disinterested in normal activity.  That's when I took him in to see the pediatrician to determine what might be wrong.  You know the story from that point . . .

Now, almost a year later, he is back at camp.  To think that in that year he has battled a rare form of leukemia, undergone chemotherapy and radiation, gone into remission, received a successful bone marrow transplant from his brother, and has now regained the health and strength necessary for his doctors to grant him permission to attend a crazy week of Junior high camp reminds us of the perfect plan of a loving, sovereign God to Whom this family owes an immeasurable debt of gratitude.

I pray Michael enjoys every second of the great chapel challenges, the smelly camp water, the endless soda and snacking, the mud pit, the swimming, basketball, climbing wall, hiking, golfing, paint ball, horses, etc. On Saturday, I plan to celebrate each silly story and that duffel bag full of soggy, grass-stained clothing.

A Teenager! Yikes!!

Michael's birthday was a real cause for celebration this year.  He was quite proud to become a teenager.  He was finally old enough to open his own facebook account (I'm to put in a shameless plug here for any and all to send him friend requests.).  It may sound melodramatic, but the rest of us were just indescribably thankful to be celebrating another birthday with a healthy Michael.

Michael spent his birthday at not one, but two!, Cardinal games.  Tickets had been provided by sources that weren't even aware of the timing, but the games certainly made his birthday weekend exciting.  He had friends over for a sleepover.  I'm sure moms everywhere wonder as I do why these events are called "sleepovers," when the children involved DON'T sleep.  The guys had a great night together not sleeping.

A birthday surprise came in the form of a card shower from family and friends in our church and community.  He spent a long time opening and reading dozens of cards and notes, and he asked many times how so many people knew it was his birthday. The efforts of his grandma and aunts to organize the shower will long be remembered.

We celebrated quietly together as a family with his birthday dinner, cake, and gifts.  What an amazing milestone after an equally amazing year!

Ladies and Gentlemen, Please Welcome . . .

Mark has been a member of a local Rotary club for quite a few years now.  The Rotarians have been very supportive of Michael in his journey through leukemia.  Last week, it was Mark's turn to provide a speaker for their lunch meeting.  He asked if Michael would join him and share with the club what the past year has been like from his own perspective and be able to meet and thank those who have been so kind and encouraging to him.

Michael did attend and spoke for several minutes about his experiences.  He was nervous and reported later that he'd stumbled and repeated himself, but he truly did a fine job.  To his horror, he found out that one of the members records each speaker and posts the presentations online!  I've included the link to the video, if you'd like to watch it for yourself.

http://youtu.be/lSCVcBdC8Ms

Michael's not particularly eager to begin a career in public speaking, but I'm glad that he had this opportunity to share his story.

Business As Usual

Michael had a monthly checkup on June 26th.  Heading back to Children's is always bittersweet.  It's encouraging to have a scheduled appointment, get a good report, and visit with some of the doctors and nurses who made our stays there so pleasant.  Our light hearts are burdened, though, when we see some of the current patients who are struggling and when the sounds and smells take us back to our own difficult trials there.  These days are a powerful call to gratefulness and renewed perspective.

This month's report for Michael was a great one.  One of the ladies in the clinic said that Michael is the perfect patient, just shows up and does his business as usual with no surprises. I would leave it at that, but I live with a couple of gentlemen who rejoice at every opportunity to analyze numbers.  For those of you who are numbers freaks interested in the details, I'll record them.

• 5' 1 3/4"--a little growth
• 83 lbs.--a little gain
• ANC of 5,394--great!
• Thyroid levels were normal--a concern since one side had grown due to radiation

After one more regular checkup in late July, the next big date on the calendar for us is August 14th.  Michael will undergo his next biopsy.  That will be the nine-month marker for him in his journey to what we pray will be two years of remission in October 2013.  They were kind to schedule this biopsy so that the results should be back before the school year begins to avoid any starting/stopping of his 8th grade year should he relapse and need further treatment.  We are certainly praying that his remission will continue, and he may begin the school year celebrating!

A Working Man

This summer brought a first for Michael.  A good first.  He was finally old enough to work in our Vacation Bible School.  He eagerly signed up, attended all the planning meetings, and looked forward to his job for the week.

He was assigned to be a helper to the Games Director.  The daily schedule included three separate game times for our one hundred (+/-) children, ages four through sixth grade.  Michael helped assemble game equipment, assisted in guiding the groups in their various games, and often played the games with the children.  Each day he claimed that he worked hard and came home quite tired.  We were glad to see his willingness to serve.

At this point the most obvious lingering result from his battle with cancer seems to be his decreased strength or, at least, a difficulty in sustaining his strength and energy.  He is making much progress, but it will take time.  Junior high age boys are not known for their patience, so this process is a struggle for Michael.  We are praying that over the summer he will be able to rebuild to the point that when he begins the school year this fall, he will be as "normal" as possible.

Perfect Attendance?

(My computer has been gone the last few weeks for some "mystery" repairs, so I apologize for simply disappearing for a little while.)

After we returned from our mini-vacation, Kristen and then Timothy both developed sudden fevers which left them miserable and drained for a couple of days.  The fever and a sore throat were their only symptoms, and by the time I decided to call the pediatrician, they felt better.  The episode was a minor blip on the typical health radar; however, I spent quite a bit of time praying that whatever they had would not affect Michael.  The next days passed, and Michael was and continues to be fine!

The school report cards for the year arrived, and we celebrated each child's work and accomplishments.  I was proud of their grades, but what struck me most was that Katherine and Jeffrey had perfect attendance.  Timothy missed only three days of school; each of those days was spent at the hospital for testing or the transplant. No one, NO ONE, had been sick all year long. 

How had I missed that?  Until Kristen's and Timothy's fevers, we had not had a sick child for almost an entire year? My five very friendly, active, involved children had not caught even one bug from any of their dozens of classmates and friends?  During a year when Michael's immune system was so seriously compromised, his family stayed perfectly healthy?  OK, I'm belaboring the point . . . What an amazing answer to prayers!

Those Perfect Attendance certificates are extra special this year.

"Over the river and through the woods . . ."

Yes, to grandmother's house we went.  Michael was given permission to leave town for a "vacation,"  so we went to visit out-of-town relatives for a week.  We divided our time in Iowa between my parents' home and my sister's family's home.  It was a wonderful time of relaxing, nephews/cousins' birthday parties, meeting our newest nephew/cousin from AZ, cookouts (with s'mores!), backyard swimming, too many indoor and outdoor games to even count, a beach picnic, and lots of visiting and other fun activities.

While we stayed at both homes, we were able to meet or renew acquaintance with several sweet friends who have faithfully prayed for Michael and encouraged him from afar.  We were again reminded of what a true blessing so many of you have been.

It was hard for all of us to believe that the last time we left town was over Memorial Day weekend last year.  What a long, wonderful, exciting year it's been!

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 . . .”

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.

1, 2, 3, . . . , 98, 99, 100.

(I just found this blog post from a couple of weeks ago still in the "drafts."  Woops!  I apologize to those who were a part of creating the fun that you can finally read about and will try not to show my age so obviously from now on.)

As Michael's 100 days of isolation were ending, mysterious packages, labelled "Do not open until day 100," began arriving from near and far.  Several more gifts arrived soon after his big day.  It became obvious very quickly that an effort had been made to celebrate Michael's milestone by showering him with gifts in quantities of 100.  We were amazed at the generosity and imagination of friends and family.

When all the packages were opened, Michael found 100 (or 100ish) of each of the following:  marshmallows, hand-drawn smiley faces, Pringles, Oreos, Reeses' mini peanut butter cups, Hershey's kisses, pieces of beef jerky, different signatures in get well cards, pencils, minutes of the "The Shadow" on cd, baseball cards with 100 pages and collector's book, football cards, football stickers with NFL album, and new, sequential dollar bills.  He also received several 100-calorie snack packages, two 100+ piece puzzles, a 100-piece art project, an ice cream cake, a list of "100 Things to Be Thankful For," a "100 Wacky Things" game, and a "100 Random Facts" book.  There were even a few gifts of 100 things for the other children.

We find ourselves constantly thanking others for their kindness to Michael and our entire family.  It is such an encouragement to us to know that so many care about our little struggles.  We truly feel blessed.

Field Trip

We might be guilty of breaking a rule or two, but it was for a VERY good cause.  The World Series trophy (which Michael would like to remind everyone that the Cardinals won) has been touring all over the area, and Michael really, REALLY wanted to see it.  You can see for yourself that we couldn't deny him his request.  Mark and Michael went to a local business and had a great time seeing the trophy up close.  While waiting in line, Michael even answered some trivia questions about the World Series and won a prize.  He came home with stories, pictures, and a huge smile.

We continue to be so thankful that Michael is staying healthy enough to allow him to take these occasional outings.  I'm not sure that such a public event was one of those "baby steps" that his doctors described, but I won't tell them if you won't.  Shhhhhhhh . . .

The Results Are In!

We headed to the hospital today for a normal clinic visit.  Since we expected to get the results of Michael's latest bone marrow biopsy, this clinic visit was anything but "normal" to us.  Today's news was so important, and my heart was quite heavy with all the possibilities of what we may hear.  I have to remind myself every time that we go to the hospital and the cancer clinic that these doctors, nurses, and staff deal with critical issues every day and that we are just one of many families who are suffering with childhood cancer.

The news for us today was wonderful!  Michael's biopsy showed NO sign of cancer.  I'll try to spare you all the boring details and simply add that he is healthy, still growing (up and out!), and looked good enough to them that they were willing to extend him to monthly visits.

Michael was pleased to hear that, pending continued good health, they'll remove his broviac (the external, IV line in his chest) after six months.  That timing would allow him to be free for the summer.

We had spent Valentine's Day at the hospital testing his heart, lungs, kidneys, eyes, and ears for any damage caused by the chemo and radiation.  Those test results showed no problems.  Is it possible to have too much good news?

The rest of the important "Keep Michael in Remission" two-year time line seems like a long road, but we can officially cross off 100 of those days.  Our assignment now is to continue to let him have a little more freedom while keeping him strong and protecting him from any viruses.  The next biopsy and round of testing will be at 180 days which will bring us to the end of April.  One day at a time, right?

One Hundred "Thank You's"

In all the craziness of the last two weeks, we had forgotten to give the final report on all the wonderful gifts from Michael's school friends. 

During the last days of his isolation, Michael received:

• Reese's, Airheads, Pringles, and gum
• Gatorade
• Silly String
• Bible puzzle book
• Origami kits

We could not have imagined a more kind and thoughtful way for Michael's friends to encourage him.  Thank you to each and every one who participated.

Baby Steps

Tonight our house was empty for the first time on a Wednesday night in months.  We all went together to our Wednesday night Awana and youth group programs.  All of us!

Since we are just supposed to take "baby steps" with reintroducing his weak immune system to exposure, Michael wasn't allowed to participate in all of the night's youth group activities.  He hid out in a quiet office (and took a spelling test, Mrs. Thaxton!) during the parts of the evening when all the 20+ teenagers are cooped up in a closed room.  He did join in when his small group met together and for the game time in the gymnasium. 

He was simply thrilled to do something normal, got to visit with lots of friends, and was one exhausted young man when we got home.  Tonight he's going to sleep like . . . a baby.

It's Official!

Michael had his +100 Day check-up today.  The doctors were pleased with everything they saw.  If you are interested in the stats:  Michael has gained another pound and a half, grown half an inch (since the start of the 100 days), and had great bloodwork.  His ANC was up to 3,000 today! 

The best part of the check-up was the Q&A session that followed.  Michael's complete isolation is officially over.  He must still be careful with exposure, but he can get out in public a bit more.  Crowds in closed spaces are either still forbidden or will require special precautions.  He's anxious to get back to church, but he'll have to sit in the balcony and visit with friends from a distance.  The food restrictions were also relaxed a bit.  He may gradually begin trying a few of the forbidden foods and be monitored closely for any trouble.  His IV infusion ended today as well; the anti-rejection drug was changed to an oral liquid, so he is now free from his constant line/pump setup.

The most important information we learned today was about Michael's future.  The doctors explained that each day of the first two years of his treatment are the most crucial.  Getting Michael into remission and through the bone marrow transplant was the imperative and successful first step.  Now we move from biopsy to biopsy, looking for a relapse.  Each negative (good) biopsy lowers his risk of relapse.  If the two years pass without any sign of the cancer returning, the doctors are confident that a relapse is highly unlikely at that point.  Every "clear" day is another answered prayer!

The biopsy was a little rougher than normal.  Michael had a strange rash reaction during the procedure and needed to have some medication to stop the problem.  The extra drugs made it much harder for him to wake from the anesthesia.  He also had a bit more soreness and general pain in his lower back.  It's been a tough but exciting day.

It's Day 100!

We tried to think of a more inspiring title for this post, but we are just so happy to be able to say that it is Day 100 that we gave up.  Sometimes simplicity can best express the most complicated situations.

Since we weren't quite sure what new freedoms Michael might have, we just celebrated this milestone quietly at home.  At the exact time of his bone marrow transplant, he shot off some confetti cannons and had a silly string war with his siblings.  He chose some special foods and finished the day with a chocolate cake.

When we look back at the past months, we are amazed at the progress that Michael has made.  He has had no side effects, no illnesses, no graft vs. host disease, no issues with strength or stamina; other than some initial trouble with his stomach, he has had no problems at all!  One of his home health care nurses told me this week that Michael is one of the most stable bone marrow patients they've had. 

We are excited to hear what the doctors have to say this Tuesday about Michael's health and what the next months will hold.  A biopsy will follow that appointment.  We can never know what the results of each biopsy will be, but we are simply content with the health that Michael has today.  Thanks for praying with us about the next part of this journey.

The Amazing, Shrinking Mountain

What used to be a mountain of Michael's "100 Days of Gifts" has dwindled to a small pile, but that's great news around here.  He has less than a week left of his isolation.  He'll have to wait for a few days after the actual 100 marker until his next clinic visit on the 7th to officially end this loooong house arrest.  In the meantime, the gifts are still a wonderful treat each day.

For those of you keeping score at home, the recent two weeks have brought:

• Would You Rather?, Hit the Deck, Farkle, Skipbo, I Spy, Monopoly Deal, Mad Gab, and math games
• Andes mints, Twix, 3 Musketeers, candy corn,  Reese's, Tootsie Pops, Oreos, M&M's, Hershey's, and gum
• Melting art kit, paper airplane making book/kit
• Growing nutcracker figure
• Glow sticks
• Rubix cube
• Slime, Flarp, Silly string
• Slinky
• Punch balloons
• Wooden brain teaser
• Water gun (the whole family thanks this anonymous and incredibly thoughtful giver!)
• Miniature basketball
• Cardinal's stuffed baseball character

This list alone is overwhelming and generous.  Michael is so grateful to all of you.  We'll let you know the final tally soon.  When the 100 days are over.  In less than a week.  Oh, have I already mentioned that?  About almost finishing the 100 days of isolation?   Pardon me, please.  As an English teacher, I know better than to be redundant.  It's just hard to focus on good writing on Day 95 (which is really close to Day 100)!

Almost There

Michael is almost at the end of his 100 days of isolation!  He had a clinic visit this past Tuesday that went quite well.  The next time he returns to the clinic, his 100 days will be over.  He will learn what happens during the next phase of his recovery and what new rules he must follow.

The doctor was pleased to see that Michael's ANC was over 2,500; he had gained another three pounds, was strong, and still free of side effects of the transplant.  They did, however, discover a problem related to the radiation he had last fall. 

It is relatively common that total body irradiation may cause some abnormalities in the throat glands.  Michael's thyroid glands are beginning to change.  The doctors immediately ordered some tests that showed that one is swelling and the other is shrinking, but the hormone levels regulated by the thyroid are still just fine.  Since these changes are taking place much faster than "normal," the doctor anticipates that the swelling/shrinking will continue and will begin to affect his hormone levels.  When (or if!) this happens, he will just need to start hormone replacement therapy which consists of a daily pill for the rest of his life. They'll keep checking on this issue every three months.  This news was actually good; a real possibility was that this swelling could have been a cancerous mass caused by the radiation.  We find ourselves again so, so thankful.

We do have a tremendous problem facing us now, though.  What are we going to do to celebrate the end of Michael's 100 days?  Ideas, anyone??

Poof! No Eyebrows!

Years ago, a high school friend performed a humorous reading "Poof!  No Eyebrows!" by Patrick F McManus.  It told the story of two boys who experimented with black powder, a bicycle seat, and a match.  You don't need to hear the whole story to imagine how the author arrived at the title.

That reading crossed my mind many times over the last couple of months as we watched the chemotherapy change Michael's body.  Michael has always been thin, so the weight loss was obvious but not alarming.  He regularly wears his hair short in the summer, so he didn't look much different when he had his dad shave it close after the hair started thinning.  But, oh, those eyebrows!

Shortly after his bone marrow transplant hospital stay, Michael lost his eyebrows and eyelashes.  After all these months, he truly looked like a cancer patient.  It was undeniable and somehow oddly shocking and discouraging.  With all that he had faced, his little blonde eyebrows were the final straw for him.  He started wearing one of his many hats or stocking caps.  He would wear a hat when he went outside, when he was inside, when he ate, when he slept.  He wore a hat all. the. time.

Time has passed now, and the hat-wearing is subsiding.  Michael has new eyebrows, eyelashes, and a full (though short) head of hair.  He's been hoping to trade his straight, light blonde hair for darker blonde, curly locks.  I'm not sure that he'll get his wish, but he looks great.  He looks . . . like Michael.

Eyebrows!   I could never have imagined. 

Day 84

I remember posting back during our stay in the hospital after the bone marrow transplant that our days had become rather boring.  I also remember that we were quite satisfied with that report!  Weeeeell, we are still boring.

Michael's doctor actually called him "boring" at his clinic visit last week.  They were pleased enough with his progress that they did not need to see him for two weeks.  He is having absolutely no problems.  No side effects from the transplant.  No colds, fevers, viruses.  He is gaining a little bit of weight.  He has energy and is keeping up with his physical therapy regimen.  He is staying current with all of his school work.  The days are passing quickly and routinely.

Michael has a little more than two weeks left of his post-100 days of isolation and dietary restrictions.  His days are over on February 4th, but we'll have to wait until an appointment on the 7th to find out what Michael's new restrictions will be.  He'll have another bone marrow biopsy on that day to again evaluate the success of the transplant and look for the presence of any cancer.  The 7th is beginning to loom rather large on the horizon.  It will be wonderful for Michael to have more freedom, but knowing that we'll be waiting for biopsy results again is difficult.

Until then, we'll pray to continue enjoying our uneventful days.

And the Fun Continues . . .

No matter what happens each day in the Vaughn home, there is always one moment of suspense and excitement as Michael opens his daily gift.  We continue to be amazed at the thoughtfulness and generosity of so many wonderful friends.  It's been over two weeks again since we've updated you, so the list seems rather long.  If you recognize your gift, please know how much we appreciate you.  Each of your gifts have been special, fun, delicious--perfect in their own way.

• "Where the Red Fern Grows" and "Black Stallion" movies
• Toss Up! game
• Reeses' bar, 3 Musketeers, York patties, Andes mints, gum, mints, boxes of assorted candies, popcorn, Fruit Roll-ups, Mountain Dew
• Juggling set
• Devotional book
• TN Volunteers pen, pencil, knit ski hat, and flashlight
• Wooden brain teasers
• Jigsaw puzzle
• Cardinals 2011 Yearbook and T-shirt
• Wooden dinosaur, lizard, and race car models
• Motorized race car model
• Flarp, coloring supplies, silly string, basketball, bubbles
• Sizzlers magnets toy

Some Good News

The last time I got a personal call from Michael's doctor, the news was not great.  She was reporting the information about the virus and the possible complications it would present.  She called again today, but the news was much different.  Michael's most recent blood work was negative for the virus!

She explained that they were thrilled to find that Michael's ANC is at 1,800 and that he is fighting this virus off with no problem.  They are content to stop all further additional blood testing.  Michael was thankful to hear that he didn't need any further "pokes."  We were all thankful that this first mini-crisis has passed with a minimum of true danger.  Just so, so thankful.  Thanks for praying with us.