The mass on his lung turned out to be a very rare cancer called pleuropulmonary blastoma.
The tumor consumed his entire right lung and was wrapped around his heart.
With a very aggressive surgery and a massive team of doctors, the tumor was removed. A very special person from The Tomorrow Fund (one of many we would meet over the years) offered his help and my husband told him we didn’t need it, didn’t want it. Once we were done with this surgery we were never going to see this hospital again.
One month later Matthew began several treatments of chemotherapy. With every cycle of chemo, Matthew had to be admitted into the hospital. That was when we were truly introduced to The Tomorrow Fund Clinic and all of the wonderful and compassionate people associated with it.
After every dose of chemo, Matt’s blood cells would weaken and he would need to have blood transfusions, IV antibiotics, platelet transfusions and other procedures to help regain his normal blood count so he could go for his next cycle of treatments. Nine months of treatments, and what seemed like endless of hospital stays, and Matt was done.
Had it not been for The Tomorrow Fund Clinic, we would have never been able to handle it ourselves. Matt is one of five children; The Tomorrow Fund Clinic took all of us under their wings. I often heard them say that cancer is a family affair. It’s not just the child and the parents, it’s the entire family.
Through every difficult moment, day, week and month, the staff and volunteers of The Tomorrow Fund were with us to help us make the right decisions on what was best for Matthew, both physically and mentally. And what was best for us as a family. Matt was never alone in the hospital. There was always someone to help if we had a problem with sitters for the other children or just to get some fresh air. The Playroom was a godsend.
The Tomorrow Fund also provided us with a daily stipend to make sure we had food to keep us going. (When you have a sick child you forget to take care of yourself). May 2001 Matt is due to start his radiation. He finishes his treatments, and in July his port is removed and he is done!
August 28th 2001, the day before his 4th birthday, he is admitted back into the hospital.
This time he is vomiting and can’t hold his head up. A CT scan shows a mass on the right front side of his brain, a brain metastasis. The tumor is removed encapsulated so no other treatment is planned. Matthew enters pre-school.
December 2001, another tumor is discovered in the brain. We try chemotherapy before the upcoming operation. January 14th, 2002, another brain metastasis is resected. This time after the tumor is resected and he has a procedure that was the first for a patent his age-interoperative radiation. Seven more months of chemo and hundreds of more hours at the hospital and the clinic. The Tomorrow Fund was with us every step of the way. With every thing Matt went through, he rarely ever cried or complained. I credit that to The Tomorrow Fund Clinic. They never made it seem like he was any different from everyone else. He was made to feel comfortable in what he had to go through-this is what everybody goes through.
November 2002, an MRI, shows another shadow. Another neurosurgery. This time it is not a tumor. Because of the radiation Matt received, it was radiation necrosis. Matt is now in kindergarten he’s five years old.
April 2004, MRI shows another tumor, this time on the left side of the brain in the back.
The tumor is removed and Matt undergoes the same intraoperative radiation treatment as well as chemotherapy.
August 25th 2004, brain metastasis to the rear left side again. Tumor is resected and Matt undergoes gamma knife radiation. In October 2004, Matt receives a new treatment, Temozolomide. It is a chemo pill form that will go through the brain barrier. It is less invasive, but is effective. Matt has 14 cycles of that.
April 2005, recurrent brain metastasis. The tumor is resected and gamma knife radiation with more chemotherapy is used. We have tried many of the options available. All we can do is to hope for no more reoccurrences.
Matt's initial protocol is for MRI’s on a regular basis..
In August of 2008, Matthew becomes involved in a Late Effects program at The Tomorrow Fund Clinic. This program focuses on children who have been through treatments that have lasting negative effects. He begins a structured schedule of testing for all of his possible emotional and physical side effects from years of treatment.
January 2010, an MRI shows a large cyst and enhancement in Matt’s brain. There is no indication that the growth is cancerous, but the cyst has to be removed. The growth is removed and the biopsy shows it is not cancer!!!!!!!!!
February 2010 Matt has another surgery to correct the cause of swelling after the surgery in January. The incision would not heal properly due to the numerous resections. Because of all the surgeries Matt has had, his tissue has become scarred and is tough and thick and could not heal properly. His body could not heal itself so surgery is performed to stop the swelling.
March 1, 2010, Matt was released from the hospital. He will go back to school Monday, March 08, 2010. Wish us luck!!!!!!!!
Our journey has taken us over many years. During that time we have been in contact with many people and organizations. Medical conferences in St Louis, Minnesota and Washington, DC, talking with parents going through similar and, in many cases, unfortunate outcomes.
We are absolutely certain that the care provided by Hasbro Children’s Hospital and, in particular, The Tomorrow Fund, has made the difference in not only Matthew sleeping comfortable at home tonight, but in our entire family’s being able to deal with the past ten years.
- Cindy and Mike Bentley