Matthew

Matthew has been a serious red-head from the time he was about 7 months old. His hair stood straight-up, just like porcupine spikes until he was

about a year-old. There were a few good temper tantrums to go along with it, but other than that, he was a perfect toddler!

When I returned from a conference in the Fall of '95, Matt and his 4 year-old brother, Joey, had developed colds. Joey's went away. Matt's didn't. At 2 years, 2 months old, Matt was diagnosed with a cancerous brain tumor.

There were many trips to the doctor for tests and procedures starting that Fall. The one persistent symptom we were unable to get a handle on was the near-daily vomiting, with no other signs of illness. The pediatrician suggested we hospitalize Matt and do some intense and invasive testing, but like him, we did not think the problem warranted that course of diagnostics. We were certain the outcome was going to be insignificant and uneventful.

After 3 months of running back and forth to the doctor, the babysitter and I noticed some "tipsy walking" as we called Matt's ever-so-subtle dizziness. My husband, Greg, had not seen it, but the vomiting and being tipsy became alarming to us both.

A call to the doctor with this report led us to the office of a neurologist. Matt threw such a fit in his office I was beside myself! A usual neurological exam and a little observation directed us to an MRI to rule out a brain stem tumor. The neurologist noticed Matt's dizziness and was sure the diagnosis was going to be Benign Vertigo of Infancy, something usually outgrown by the age of 3. Whew, one more year of the vomiting and we'd be done. Wrong again.

On 2/6/96 the neurologist told us our son had a brain tumor (medulloblastoma, on the floor of the 4th ventricle), that it was malignant, and he would need surgery as soon as possible. His tumor was located in the cerebellum, at the base of the brain stem, right where the circuits for all vital functions are connected.

We were flabbergasted, amongst other things! I don't think I even absorbed what he said, other than to hear that we weren't going home that day. My husband went back with the neurologist and looked at the scans. There it was, bigger than life, as it became known around the hospital floor.

We met with the neurosurgeon that afternoon and learned of our options: 1) We could have the surgery as planned in the morning 2) get a second opinion or 3) do nothing, which the tumor would grow so quickly that within 30 days he would be in an irreversible coma.

We selected the surgery as we did not have time for a second opinion as we saw the situation. Our third child was due in 8 weeks and we had to get this problem taken care of and get on with our lives. Surgery went on as scheduled the next morning and it was the hardest thing for my husband to hand over our son to the anesthesiologist. We were coming to learn how drastically the surgery would affect our son's life.

While the surgery was completely successful in removing all of the tumor, there were complications that took on a rather radical impression, very quickly. Matt required a tracheostomy and a gastrostomy tube. The neurological center of his brain had become very disrupted and it was obvious to us we were on a whole new journey that we couldn't even begin to understand.

The records reveal that Matt's post-op recovery was very difficult, at best. Matt was no longer demonstrating any motor functions, including holding his head up or putting his pacifier in his mouth. He lay almost motionless on the hospital bed, not needing crib rails for his personal safety. Amongst the tubes, machines, drainage bags, pumps, ventilator, and monitors, our son laid in complete frustration and fear.

We thought we had never cried so much in grief and despair as we had with the diagnosis, but now that our son may never talk or cry again or eat naturally was more than we could bear.

We learned how to use an ambu bag (manual resuscitator), suctioning equipment, and various pumps and machines before we were discharged 2 months later. In between that time, we had our first of 13 very intense courses of chemotherapy at Rockford Memorial Hospital where our medical team had so capably saved his life thus far. My husband held Matt for the first time one month after surgery. He held him as we were being prepared to transfer to Swedish American Hospital where chemotherapy is routinely administered to pediatric patients.

Matt had not regained any of his functions at that time, yet, and it was like holding a 30 pound new-born in your lap with IV tubing, ventilator hoses, and feeding lines running everywhere. It was very difficult for me to hold Matt with my pregnant stomach replacing my lap, but the nursing team made sure we did it from time to time! This was no small ordeal!

Upon being admitted to the Intensive Care Unit at Swedish American Hospital , we met a whole new team of players that were to become our new, loving medical family. Our oncologist remained the same, and he was instrumental in persuading the insurance companies to allow me to deliver our baby at the same hospital where Matt was being treated. As it turned out, I went to the hospital on 4/15/96 and delivered Caroline Elizabeth and Matt was admitted on 4/16 for round 3 of chemo. Our first family picture with our new baby was in Matt's hospital room, him with his bald head and Mickey Mouse ears and me in my hospital gown.

Matt's chemotherapy included Vincristine, VP-16, Cisplatin, Carboplatin, and Cyclophosphamide, as well as other drugs and fluids to counteract toxicity. His first 5 courses of induction chemotherapy were scheduled every 21 days, unless his blood counts and bone marrow had not recovered well enough to continue on schedule. Within this schedule, there were many occasions of infections, including losing his first central line before the second course of chemo. The central line was critical to the support of his IV fluids, lab work, and chemotherapy administration.

Soon after Matt's initial rounds of chemotherapy, he developed Interstitial Lung Disease. This inflammation of the lungs required him to have oxygen all of the time and to take a steroid to help manage the inflammation. The steroid affected Matt's immune system by further suppressing his bone marrow, making recovery from one round of chemo to the next very difficult. It was somewhat risky and scary to have this as a confounding problem.

The next 8 courses of the maintenance chemotherapy protocol were scheduled on 49 day intervals, barring problems and complications. This was less hard on Matthew, but none-the-less, there were countless days spent in the hospital treating the many side effects and complications from the chemo and other problems related to infections. During the maintenance phase alone, Matt required a total of 45 blood/platelet transfusions. Dr. Torrey Mitchell, Matt's oncologist, said his bone marrow was unable to produce it's own red cells and platelets during the entire course of chemotherapy.

Inpatient physical, occupational, and speech therapy were always tried with Matt during chemo, but it was very difficult to engage him in the activities due to his fragile condition. Because of Matt's complicated situation, he had continuous nursing coverage at home for 5 months. This gradually tapered off over a year and a-half until we were down to 8 hours a night at the end of the chemotherapy protocol.

At 20 months into treatment, we were moving in on the final procedure to remove Matt's tracheostomy. His vocal chords had recovered enough to provide a patent airway. His voice and speech, however, were still far from being productive and functional. We were thrilled, none-the-less, to have some sound coming back from our young son. His gastrostomy tube broke 13 months into treatment, and he was taking solids fairly well at that point, so conjunctively, the doctors agreed to discontinue using it.

Finally, we completed chemotherapy on 10/1/97. Matt was almost 4 years old. We threw a huge party at a rented hall and it was remarkable to see as many as 200 caregivers, doctors, therapists, friends, neighbors, our church family, and our own families celebrate the end of this incredible journey with us.

Matt's recovery has been slow, but steady, and sometimes very frustrating.

Today (5/02), Matt still experiences significant motor delays, speech problems, and intellectual delays. He can walk quite well with his forearm cane and he is walking around the house without any support! We never expected he would recover this much balance. We have a wheelchair to use for outings that require endurance and efficiency. His speech is very intelligible but he will require continued therapy for articulation and oral-motor deficits. His intellectual functioning is in the mild range of impairment. He has had 2 eye surgeries to correct a nerve palsy as a result of the tumor surgery. It is still somewhat crossed,, but his vision is good.

We continue to see progress in Matt's recovery. Until he plateaus, we can expect progress.

Matt will see the oncologist on an annual basis. He sees his pulmonologist more often, but those visits are becoming infrequent as well. He will have MRI's every year for a very long time. We can never be sure his tumor will not reoccur, but we become more confident each day as time goes by that he is free of cancer.

Our ring of support has come from other families who have children with cancer, as well as our family and friends. We are involved with the Candlelighter's support group as well as some on-line groups. It is with their understanding and support that we find the strength to cope with life and life after cancer. It is also with their support and love that we recognize how fortunate we are that Matt's surgery and chemotherapy have saved his life.

If you would like to know more about Matt's disease or recovery, please email us at GREG-SHERI.WHITE@prodigy.net.

See our family photos on the album page!