Matthew's Story

since his older brother was never a big weight gainer this was not a very big red flag. In addition he didn't have any other signs that something was wrong. Until now...

When the doctor felt his tummy, which he did at every appointment, he exclaimed, "Whoa, what is that?" Sure enough, a large lump could be felt from the middle of his abdomen around to the left side of his body. And if you looked at it, you could actually see it! His rib cage was sticking out! How could I have not seen that before! What kind of mother was I?

The pediatrician said there was a possibility that his spleen was enlarged due to pneumonia and he wanted to check his blood counts. He made an appointment for us to go to Children's Hospital the following afternoon for an ultrasound and failure to thrive.

The following day, the ultrasound technician and attending physician were very quiet throughout the procedure while Matthew screamed and we tried to console him. Then they excused themselves and 10 minutes later four people came in to tell us that our baby had cancer. It was a large kidney cancer called Wilm's tumor. Then they told us, "if your child has to have cancer, this is the best one to have". I think this was supposed to comfort us.

A CT scan was scheduled for the following day and surgery on Thursday the 16th of November, Matthew's first birthday. The anesthesia for the CT scan and surgery was a concern because of the pneumonia, but they were concerned that the tumor was so large that if they waited any longer, it might rupture so we pushed ahead.

The tumor turned out to occupy the majority of his abdomen, from the bladder to the diaphragm and it filled the entire left side of his abdomen and crossed into the right side. All of his organs were squashed. It was no wonder he hardly ate, there wasn't any room! It was amazing that he didn't have other symptoms such as bowel problems, vomiting, or blood in his urine or stool.

During surgery, the doctor came out and showed us the tumor. He held it in a jar and I was shocked at how large it was. I was also surprised at the appearance of it. I was expecting some black, ugly, evil looking thing, but it just looked like some really big, bloody organ. There was barely any kidney tissue left, it had all been taken over by the tumor. The good news was that the other kidney looked fine.

Three days later we learned that Matthew had a Favorable Histology Wilm's tumor although there were areas that looked "different". There had been some spread to the local tissue and lymph nodes so he was Stage III. He went on a three-drug regimen rather than the normal two-drug regimen, and was classified as "high risk" although nobody seemed to be worried about it. They told us that he had an 85-90% chance at a cure, but that it was really more like 95%. As close to a guarantee as you can get.

Matthew had six months of outpatient chemo with Vincristine, Doxorubicin, and Actinomycin-D. He also had five days of radiation to his abdomen. I had been in the process of weaning him from breast milk but the doctors said that I should continue to nurse him because it might be the only thing he would keep down. And we could both benefit from the closeness. But two months into treatment, he stopped eating altogether. So had NG (nasogastric) tube feedings for three months. It was very traumatic and he didn't understand why Mommy had to keep shoving a tube down his nose every time he pulled it out. Consequently, he stopped talking for 6 months and wouldn't have anything to do with me for a long time after that. But I had no choice.

The whole ordeal was absolutely awful. I felt like I was in a living hell. I didn't know any of the other families and none of my friends or family could understand what it was like. Everyone kept saying how lucky we were to have "good cancer". The funny thing was that I didn?t feel lucky.

Matthew finished treatment in late May of 1996. He was declared cured and we were given the closet thing to a guarantee that there is with cancer. We would go in every three months for a chest x-ray and abdominal ultrasound since relapses usually show up in the lungs, the other kidney or in the original site. We also did blood counts, weight, and visited with the oncologist.

We were so grateful for Matthew's health and he continued developing well. We found out we were expecting our third child and I began nursing school. Life started to return to "normal", although we still always had this feeling of being different.

I remember this intense desire to run through the hallways of the hospital screaming. I just wanted to get away from it, but I couldn't. How could this be happening to our baby??? Again??? There we so many questions and no answers. But we felt strongly that we could turn to God and put our questions in His hands and He helped with this terrible burden.

When the pathology report came back, it confirmed the same exact histology as the first tumor. Because of the unusual way the tumor spread, they decided to take a closer look at this variation. Dr. Bruce Beckwith, the top Wilm's tumor pathologist in the country, said that it looked like renal cell carcinoma, which is a deadly adult kidney cancer, but that after running more tests, he couldn't rule it in and he couldn't rule it out. RCC is extremely rare in children and usually fatal after it has spread to the lymphatic system. But again, the pathologist couldn't say it was RCC for sure. So we were left with fighting a favorable histology Wilm's tumor with some weird variation that nobody has seen before. The oncologists told us that if it was RCC the prognosis would be extremely poor and there is no protocol for children. The only thing we could do was treat it as a relapsed Wilm's tumor. At the time, only 60 kids had been on the protocol.

The next shock came when we found out what treatment would consist of this time. Nine months of chemo with Carboplatin, Etoposide, and Cyclophosphamide with Mesna and G-CSF injections in his leg for 7-14 days after each round of chemo. All the chemo would be inpatient for either five days or three days at a time depending on which drug combination he was getting. He would have fevers and infections between rounds of chemo and would require lots of transfusions. There was a possibility that the chemo could cause leukemia (AML), bladder cancer, and Hodgkin's disease. We were also given the option to just go home and make Matthew comfortable.

We decided to fight.

Matthew was admitted for five days for his first round of chemo. The day after he was discharged
we were in the outpatient clinic for an appointment when I changed his dressing because we
hadn't received home care supplies yet. He had a line infection and we were admitted right on the
spot. He was in for another 10 days while he recovered from the line infection and we watched his
ANC go down to zero and slowly back up again. Then we were out for four days just to be back in
again for more chemo. I was overwhelmed! I couldn't believe that we had nine more months to go
like this! (It actually turned out to be 13 months)

Matthew wound up with fevers and infections after every round of chemo, except one. His ANC would be at 0 for about 8 days and he needed lots of transfusions and G-CSF. There were two rounds where he needed 8 transfusions after each round of chemo, which earned him the name "Platelet Boy". His counts were taking longer and longer to recover to the point where he could receive more chemo. Twice he went six weeks between rounds instead of three weeks. Because of all the setbacks he had, his chemo had to be reduced in half and it took thirteen months instead of nine. He would have gone another 2-3 months but we decided not to do the last two rounds of chemo because the docs were afraid that it might kill him, as it almost did a few times before.

In just over one year of treatment, Matthew had 14 rounds of chemo which led to 125 days as an inpatient in the hospital (this does not include the countless days in the outpatient clinic), 35 blood and platelet transfusions, 5 bouts of septic shock, 4 Hickman lines, one ambulance ride and one stay in the Intensive Care Unit. It was a rough year, but it could have been much worse!

Matthew had his line pulled on July 7, 1998 and has a beautiful head full of hair now! He is gaining weight (we didn't do the NG tube this time...we did TPN (IV Food) for 6 months instead) and his coloring is wonderful! I can hardly believe how much energy he has! Now he can play football and baseball again with his 10-year-old brother!

The docs say that with a "normal" Wilm's relapse there is about a 50/50 chance of survival. This is kind of a shock when we were originally told 90-95% chance the first time. But those are still better odds than some other first-time cancers. However, they don't know what kind of chances our little Matthew has because of the strange histology of his tumor. So for now we just thank God everyday that he is with us and deal with our fears and fortunes on a daily basis.

The chemo he was on has caused permanent hearing loss and immunosupression. He has now been exposed to six different chemotherapy drugs and radiation to 60% of his body. This leaves him at high risk for secondary cancers in addition to the constant threat of another relapse.

If you have a child with Wilm's tumor, I hope this doesn't scare you too much more than you already are. There are so many Wilm's tumor survivors who are doing great and the chances are very high that your child will be one of them. However, I also understand the need to be constantly prepared. Thinking about the possibility of relapse and/or death won't make it come true. Maybe it would have helped me to know all this info before Matthew relapsed because when they told us how hard his treatment was going to be, it was almost as devastating as hearing the word "relapse".

If you have a child who has relapsed, it can seem like everyone is either relapsing or dying and there is no end in site. It took me a while to finally realize that everyone I bumped into was either newly diagnosed, relapsed, or dying but that was only because I was living in the hospital. I never saw the survivors. Keep your faith and remember that there are others who have been in your shoes.

Blessings
These are just some of the blessings that have come our way which helped make the chemo-life a little bit easier after Matthew relapsed. There is no way we can thank everyone who helped us, but please know how much your help means to us. We believe that everything happens for a reason and God's love is apparent when people help others in crisis, just as you have helped us.

I was not brought up with religion. Although my mom was Catholic and went to Catholic school and I was baptized Catholic, we never went to church and we never prayed, etc. When I was a young adult I rationalized away religion. So it seemed strange that when I was pregnant with Matthew I had this sudden STRONG urge to start going to church and start a relationship with God. Just out of the blue. So my hubby and I built a fairly solid foundation of faith by the time Matthew was diagnosed and I believe 100% that it was God's way of preparing us for what was to come. He knew that we needed to have faith, hope, and a relationship with Him to help us get through the ordeal.

And our church helped us so much through Matthew's treatment. We also got our very own guardian angel on earth in the form of a woman named Virginia. There were many moments that I would pray for an answer and somehow, I swear, within a day to sometimes MINUTES, my prayer was answered in the form of Virginia. There were times I was not sure we would be able to pay the rent, and the next day she would have sent us a $300 check in the mail without ANYONE mentioning it to her. One night as I was standing in the kitchen, I had two thoughts: what the heck am I going to make for dinner with no food, and how in the world can I come up with an acceptable Halloween costume? Not three minutes later, Virginia knocked on the door and had a hot dinner and a paper bag.... that had Halloween costumes in it for the kids! I almost passed out!! I've told her over and over that she is truly our Guardian Angel and that she must have a hot line to God. She just laughs and gives me a hug...never an explanation. Amazing!

We also had someone who would drop off a bag of stuff for dinner at the front door. It was as if someone took out $20 from the bank and would buy simple stuff like a pack of spaghetti, spaghetti sauce, bread, a bag of salad, and then put the remaining change in the bottom of the bag. There was no pattern to it (i.e. every other Wednesday or whatever) but it always came when we had used up the meals from church and the fridge was empty and Chris wasn't going to be paid for a few more days.... we never did figure out who it was. We learned from those experiences to be patient, God would somehow provide what we needed. And He did.

Paolo's Italian Restaurant: This great restaurant, located in Kent, WA, held a Benefit Brunch for Matthew in November 1997. And they didn't hold anything back! Along with the great food and people, there were clowns, balloons and face painting! Food distributors and grocery stores donated the food and many people volunteered their time to help. Matthew was discharged from the hospital that same morning and was able to make a short appearance and get a few balloon hats!

St. Philomena Catholic Church: The parishioners and staff of our church have provided us with spiritual guidance, meals, money, housekeeping, stacks of diapers, and lots of prayers! Matthew and Adam were baptized together here.

Mountain Climbers: Climbers who have strong legs and big hearts took a flag with Matthew's picture on it to summits around the world. These exciting events lead to one local talk show, eight newscasts, and six newspaper articles. The goal was to raise money for our family as well as raise public awareness about children who have cancer. But the moral boost it gave to our family is priceless.

Mt. Rainier......................... Sept. 1997...................... Xavier Favellet
Mt. Whitney........................ Oct. 1998 (twice!)........... Rick Hartman
Mt. Aconcagua....................Jan. 1998....................... Kenny Pokora
Mt. Everest North Face...... May 1998....................... Craig John
Mt. Rainier......................... Sept. 1998 (2nd time!).... Xavier Favellet
Mt. Kilimanjaro................... Jan. 1999....................... Craig John
Mt. Aconcagua....................Jan. 2001....................... Eric & Monty

Songs Of Love: Wrote a song made especially for Matthew. The chorus of the song is "When you look upon a mountain top, you may see a flag flying high. And the flag, that's Matthew Randall's flag, is dancing in the sky." The song incorporates all the things he loves including playing football and baseball, his binky, Barney, Camp Sunshine, Disney World, and his two brothers, Adam and Andrew.

                       Des Moines Fire Department: The Firefighters who responded to my 911 call on May 15, 1998 were
                             touched so much by Matthew that they invited him to the fire station for an all-out special tour and dinner. They
                             served all of his favorite junk food, gave him a t-shirt, and let him squirt the firehose! They even took him in the
                             fire truck to get ice cream at the local Baskin-Robbins...lights, sirens, and all! When we got back to the fire
                             station, they set up the truck with the ladder completely extended. They even raised money for his fund and
                             came to our house in the fire truck and spoiled all three boys with toys!

The Sparrow Foundation: This is a 501(c)(3) nonprofit organization that helps
young people generate fundraisers for children in medical crisis. The football team from
Bellarmine Preparatory Catholic High School raised money for Matthew and our family.
Five of the football team captains and three of the girls from the soccer team came to
visit us at our house and played laser tag in the back yard! They dedicated the 1998
football season to Matthew!

Christmas Cheer: Many people contributed to our Christmas last year so that we were able to focus on taking care of Matthew and so all the boys could have a fun and memorable season. Our Christmas angels included the Amandus family, the Pointkowski family, Thrifty Car Rental, and the Huling Family. You helped show our children the true meaning of Christmas?unrelenting and unconditional love.

Prayers: Countless people from around the country have prayed for Matthew and our family. His name has been taken to Jerusalem and placed in the Wailing Wall twice. He has even been the subject of an entire church sermon in Midland, Michigan! He continues to inspire us and people all around, and we ask that you keep praying for him.

Cancer Camps: We had the wonderful opportunity to attend some various cancer camps. These offer a much0needed break from the rigors of cancer treatment while still maintaining a safe environment. We really love all the volunteers who work so hard to make us feel at home!

Camp Sunshine -- in Portland Maine is a family camp that we went to in the summer of 1997 and 1998.
Camp Agape -- is another family camp but is in Washington State, a little closer to home!
Camp Mak-A-Dream -- in Montana had a camp that Andrew went to for siblings of kids with cancer

Friends and Family: We really couldn't have made it through the last year without the love and support from all of our friends, new and old, and our family. You mean so much to us and we are forever grateful!

Make-A-Wish: Matthew's Make-A-Wish is to see Mickey Mouse and Winnie-the-Pooh at Disney World and Barney at Universal Studios. We tried to make this trip a few times in the last year but complications and set backs in Matthew's treatment caused us to postpone the trip. We are hoping to finally watch Matthew's Wish come true in November 1998!

Matthew was 2-1/2 when the one-year mark rolled around and we went in for one of his routine follow up visits. His oncologist told us there was a "shadow" behind his heart that showed up on the chest x-ray. It had been there three months earlier and didn't look any bigger. It was probably just a swollen lymph node from some virus. But they were concerned that his WBC and platelet counts were below normal and he hadn't gained any weight in three months. However, they were confident that it wasn't a relapse, because Wilm's tumors metastasize through the blood stream, not the lymph system.

A CT scan confirmed the lymph node enlargement. They decided to take the lump out and biopsy it "just to be safe". The problem was that the node was lodged between his aorta, lung and spinal column. The surgeon would have to collapse his lung to get to it. Thankfully he was able to use a laproscope so Matthew only had four 1-1/2 inch long incisions. They looked at the mass under the microscope in the OR and told us the cancer was back. We cried and prayed. As much as I was trying to prepare myself for the blow, it hit so much harder than I thought. Once again, I thought he was going to die.