Another Cancer Birthday

It doesn't seem possible that it has been two years since Michael's initial cancer diagnosis.  On one hand, it seems like so long ago; on the other, the memories of that day are so fresh that it could have happened yesterday.

 

Seeing Michael's puzzled face and feeling my heart sink when our pediatrician got the blood test results and asked me to step out of the exam room with her . . .  Quickly packing bags for the other four children and trying to calm them while we all faced the unknown . . . Racing to Children's Hospital . . . Hearing those horrible words:  "Your son has cancer." . . . Trying to comfort family and friends while we shared with them Michael's news . . . Today we can replay each vivid scene and experience again every raw emotion; they seem to be frozen clearly in our minds.

 

The wonderful blessing is that while in the whirlwind of all the cancer-diagnosis chaos, we knew without a doubt that Michael was created, loved, and sustained each day by the GOD of the universe!  It was God's plan for Michael to begin his fight with cancer, and while we did not know the outcome, God did and would walk with us down our path.  He provided strength, hope, courage, comfort, love and kindness from so many of you, and healing to this point for Michael.  Our hearts are full every day, but especially on milestone days like this one.

Blog Reboot

After several months and many computer issues (imagine my huge, impatient, non-computer-savvy "siiiigh"), we are finally able to access and update the blog.  We'll try to get you caught up with just the highlights of the challenges and blessings of the last months.  Thank you for your continued interest in Michael's story.

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.