(14 years old, 7th grade, 12 years since diagnosis: medulloblastoma)
In about an hour on this Sunday morning I will be headed off to Walgreens to pick up Matt’s on-line order of digital pictures from his recent ski trip to Park City, Utah with Camp One Step at a Time. It amazes me each time he sits at the computer and figures out how to select prints from a medium, Google his favorite new singer, check the facts on imdb or complete a language arts or social studies assignment. The miracles are endless!
We just completed Matt’s 3-year re-evaluation and IEP at his school on Thursday. Every parent knows that while we root and cheer every single accomplishment our kids make, these darn IEP meetings cause sleeplessness and anxiety. We expected the diagnostic team along with some of his 7th grade teachers to recommend he receive more intensive special education services outside of the general education classroom. We carefully assembled the professional staff that very strongly agreed with us that Matt’s least restrictive environment is in the general education classroom. These individuals included his 6th grade co-teaching team, the school psychologist that has done his re-evaluations during the elementary grades, and the special education supervisor of the middle school building he attends. I met with the supervisor prior to the meeting and went over all the concerns and issues we wanted addressed in the IEP. I provided “our” support staff with the same information so we would have their professional perspective in the event I waffled or faltered and became emotionally undone if we had had to offer justification for our reasons.
All the anxiety and sleeplessness were for naught. The recommendation for more intensive special education services never came. He continues to perform in the mild range of cognitive impairment. (I think he measures a 59 on their achievement tests, but oh, he is so much more than that in living color!!!) His physical challenges are secondary to his main issues in terms of educational relevance. Matt even graduated from physical therapy services at this meeting!
The plan to continue providing Matt an appropriate education in the regular education classroom with individualized supports and modifications was the result of our meeting. We tweaked some things that were not going well this year by moving him out of one of his general education classes and into another one since his teacher didn’t seem to understand nor want to understand the educational inclusive model. We developed the plan where his 7th grade teachers, especially in this specific subject area, will begin the transition for next year by collaborating with the 8th grade teachers so they know what level of modification and support he will need to meet success in their class.
It was a good meeting. It was a long one, but worth every minute of it. I have said before that I thought the medical piece of Matt’s life was very difficult, but in some ways, it takes as much energy and work, at least mental and emotional energy, to make the educational component right for him. His team last year in 6th grade was fabulous and gave us a nice reprieve from the work it takes to ensure that his educational needs are being appropriately met. This year has been some work and lots of frustration in the one class, but overall, we have a team and school district that works with us. I know we are fortunate in that way. Our advocacy issues are heard and honored. His needs are well met. We are more fortunate than many families working to get appropriate education and services for their kids now that they have survived cancer at all.
Surviving cancer is like having a tornado or hurricane go through your life and once the crisis is over, the work begins. The devastating effects of childhood cancer never allow you to stop cleaning up.
Just as we had this new flurry of educational concerns, we have been thrust back into the world of medicine. My kitchen counter, which also doubles as my home office, is once again peppered with blood counts scribbled on the back of mail, grocery lists, etc. But, thankfully, we’re not having blood draws for cancer. Instead, we are dealing with a recurrence of ITP (those poor platelets!).
Matt had ITP in 1999 and was treated for 4 months. We’re not sure if the chicken pox virus scared away the ITP, but it was no longer an issue after he broke out. When the petechia decided to make an appearance on his face a few weeks ago, I dismissed it as potential acne/blemishes. Then a few big, new bruises showed up on his legs and I was sure the petechiae and bloody nose could not be mistaken! So we got a stat CBC, saw the doctor, and were admitted to the hospital for a short stay for the IV WinRHO treatment.
That stat CBC and short stay in the hospital stopped us on a dime. All those days of long ago came rushing back…the call button, the electric bed, the IV pump, the monitors in the room, the styrofoam cups with bendable straws, the old bathrooms in patient rooms, the hazardous waste containers, etc…. all seemed like a deja vu. Yet our star patient wanted nothing to do with the days of long ago. He snubbed the nurse’s offer to look at the DVD list, cared less about what the child life specialist brought in, and wouldn’t give up a good vein for the IV. The nurse finally found one in his foot, for goodness sakes!
As all long-term patients know, nothing goes quickly at the hospital and I had plenty of time not watching a movie to think back on the past few months and realized how “medical” we have become again. My cell phone contact list has at least five doctors’ phone numbers in it: the pediatrician, the endocrinologist, the orthopedist, the oncologist, and the orthodontist. Now we will add the hematologist. Geesh! And we just finished a marathon MRI for baseline scoliosis and a routine brain scan. (No news is good news on the brain scan!)
There has been a very luxurious reprieve from the doctor scene over the past 6 or 7 years. We dutifully visit the neuro-oncology team at the American Family Children’s Hospital in Madison, WI every year as part of his protocol to impress them with Matt’s remarkable outcome and wellness. The oncologist, neurologist, and psychiatrist and their various students, residents, etc, see him each visit. Now and again the social worker stops in but we are quite intact as a family and have pretty good support at school, so her work is a matter of formality with us. We will begin routine visits in their Caring for Life clinic later next month.
Matt does see the endocrinologist every six months and since he’s in the midst of puberty, it’s a wait and see situation to determine if he will need growth hormones. At the present time, he is growing well enough that it doesn’t look as though he will need hormone therapy. Even though he had a big growth spurt at our last visit, he still seems on the small side compared to his older brother and younger sister. The scoliosis is apparently significant enough that he will require a brace or possibly surgery at some point in the future. The orthopedist is overseeing this problem.
So as I reflected on the recent flurry of activity, it is surprising how fast the familiarity and memories take over our imaginations. Many memories are difficult, but there are many happy ones just the same. We keep it in perspective in our own way but it was a bit more difficult for our 16 and 12 year olds when we were bounced into the hospital a few weeks ago. When the supper list was on the counter, Matt and I were gone and Greg came later to the hospital, the reality that something was wrong with Matt hit our son and daughter. Both were apparently worried that Matt had cancer again. Both called friends and received much needed support. We were able to assure them that the ITP was not cancer and that Matt did not have cancer again. You could almost see the relief wash away.
The doctor ordered “no school” till further notice with his platelet count being so low. Matt had just returned from a week of snow skiing with Camp One Step at a Time, so this turned into an extended vacation! Matt loves and thrives on the experiences that Camp One Step at a Time provides. He has been on 2 ski trips to Park City, a dude ranch trip in Yucca, AZ, a White Sox game, a lobbying trip to Springfield, IL, and summer and winter overnight camps in the past 3 years. This is truly the highlight of his life!
His other extracurricular activities include Boy Scouts, middle school bowling, and CCD classes. His team and the opposing team cheered wildly when he threw a strike the other night at the bowling meet. His final score of that game was an all time high of 40 points! This is no under achievement. Who would have ever thought this child would have had the balance and motor control and planning to lift a bowling ball off the ball return and carry it to the approach line, much less roll it down the alley without fully losing his balance and toppling to the floor? He isn’t even using a ramp to roll the ball! Matt’s peers on his team are graciously supportive and the coach(es) have clearly welcomed him.
He enjoys putting together small group activities including a Christmas caroling party this past season. In some ways, we have to tweak the ideas to muster up the appeal for his same aged peers! Friendships and inclusion in age-appropriate activities continue to be a major focus in our life. Daniel, Evan and Collin have been super friends. His Boy Scout troop welcomes his participation in all activities. Matt has grandparents, aunts and uncles extraordinaire! His cousins celebrate and rejoice in his accomplishments and are always struck when he enlightens them with some unusual knowledge on some subject matter that even they don’t know anything about! His passions are deep and sincere. And at this very moment, the Legends of Country Music program is on the radio and that gives him all that much more to learn, study and download to his I-pod!
It’s been 12 years since his diagnosis. It’s been about 10 years since his treatment has been finished. He is living a good life, a full life, and has aspirations for a typical adult life. Along with his school support, extended family support, community support, and our endless hope and advocacy, we will help him accomplish all things possible.
If we can help on your journey with a child living with the effects of a brain tumor or other childhood cancer and its treatment effects, we would love to hear from you. Feel free to contact us: greg-sheri.white@prodigy.net.