(9 years since diagnosis)

While I was rooting through the bathroom cupboards the other day looking for cold medicine, I came across a drawer full of medical supplies.  Alcohol prep pads, a stethoscope, nebulizer supplies, inhalers, skin break-down creams, all kinds of stuff.  I know in another closet, high up on the top shelf in the back, I have isolation masks, sterile gloves, oxygen tubing, syringes and some tegaderm.  Why, in heavens name, am I saving this stuff?

It’s been 9 years today since Matt had his brain tumor surgery.  We haven’t used or needed some of this stuff in about 4 or 5 years.  And I even moved it from the other house to our new house. 

Well, in all honesty, I do know why I have moved this stuff and saved it. 

I have saved it for two reasons.  Number one, you never know when this kind of stuff will come in handy. (Ha?  Most people probably stock extra band-aids and ace wraps).  Number two, you never know when the other shoe will drop and we will need it all again.  (Why would I want to re-purchase or have the insurance company buy such high-priced medical supplies again?)

The truth of the matter is that as a cancer kid parent, the little, tiny, choking feeling that is parked way in the back of our minds and hearts never goes away.  We know that it is always a possibility that the cancer could return and we will have to put on our hip boots and go deep.  And maybe I keep the supplies around for the sake of Murphy’s Law:  If you keep it you won’t need it, but if you throw it away, you will need it.

But today is a day of celebration!  French silk pie and a Billy Gilman CD in Matt’s honor.  We are doing it quietly because Matt really does not like to reminisce about that time in his/our life.  It is really only by our photographs and conversations that he recalls much of it since he was just a toddler at the age of 2 when he was first diagnosed. 

Matt is in the fourth grade and working about 3 years behind grade level.  He continues to receive speech and occupational therapy at school, resource room support for language arts and math, and private therapy for PT, OT and speech.  He walks about the house and classroom without any assistance, and he is transitioning from a loftstrand crutch to a straight cane for longer distances. 

Matt is quite a whiz on the computer and completes his spelling words by accessing the Word Art function from the tool bar.  J  Matt is able to find almost any clip art picture he wants from a disk with 25,000 pictures on it.  Santa brought him an Alpha Smart for Christmas and while it was meant for educational support, he finds much enjoyment in his pastime using it for writing text for his current passions:  Top Gun, Jimmy Neutron, presidents of the United States, etc.

Matt loves golf and takes adapted golf lessons in the summer and fall.  He can hit a ball about 6-10 feet.  This is a significant improvement from the 1-2 feet when he first started.  

Medically, he is seen yearly at the UW-Madison Children’s Hospital for long-term neuro-oncology survivors.  He has an MRI prior to the visit and is then seen by the oncologist (or her nurse practitioner), the neurologist, and the physiatrist.  The endocrinologist sees him twice a year as we monitor his sluggish growth.  To date, he does not require growth hormones and does not take any medications.

We have been blessed with Matt’s good health and are humbled by his many recoveries and successes.  There have been many caregivers and medical practitioners in our life.  In fact, there still are many incredible people in our life, keeping with us on this journey. 

Our family, friends, neighbors, church family, park district staff, school community, and oh, so many others, continue to raise us up and hold us close.  We are truly grateful.  We stay abreast of pediatric oncology and brain tumor issues by subscribing to on-line listserves.  These lists continue to educate us, support us, comfort us and enable us to provide help to other parents who are at various points in their child’s journey.

Childhood cancer (or other cancers) never goes away.  We make adjustments and new traditions in our family because of and in spite of our circumstances.  On the other hand, we seize the day and the moment for celebrations and successes.  Every day is our gift and yours.  Celebrate!

	Halloween - 2004 almost 11 yo				Golf – 2004 10.5 yo
		Matt - The Baker – 11y.o Jan. 05