Matthew's Story
(Occasionally I will change pictures, but they will always be of Matthew, his sister Bonnie and best-friend Graham during the summer of 2002. I am also currently working on Matthew's book where his story will be told in further detail.)
Hepatoblastoma is a rare childhood liver cancer. It occurs in only one child per million a year and accounts for one percent of all pediatric cancers worldwide. Because it is so rare, the research, funding and information is also rare.
The purpose of this webpage is to provide hope to parents who are looking for more information on this disease. After our son was diagnosed I searched for all the medical literature I could find on this disease and it was very limited. So I contacted other parents of Hepatoblastoma who had a webpage for their child, those parents led me to other parents of Hepatoblastoma and we formed our own support group. Other than God, my greatest source of hope and information came from these parents and I will share their stories in Section II. I hope these stories will give you what you may not find elsewhere and that is, Hope for Hepatoblastoma.
I also want to briefly share Matthew's two-year battle with Hepatoblastoma. If you were to ask me for the most important piece of advice, I would probably say, if the initial surgery does not rid all disease, immediately "get a transplant". At the time Matthew was diagnosed (2000) it wasn't considered a first option (like it is now) and I can't help but feel if we had transplanted instead of doing nine surgeries (including four liver resections), especially when his Afp was 65, it would have changed things.
We do not claim to be experts nor is this page intended to be a substitute for professional medical advice. Because of confidentiality issues, the names of doctors, surgeons and oncologists have been omitted from this page but if you want more detailed information, email me at J9bryan@aol.com or the parent (email addresses are provided & prior approval has been granted).
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Early Warning signs of Childhood Cancer (reprinted with permission from www.goldribbons.com)
Continued, unexplained weight loss
Headaches, often with vomiting, at night or early morning
Increased swelling or persistent pain in bones, joints, back, or legs
Lump or mass, especially in the abdomen, neck, chest, pelvis, or armpits
Development of excessive bruising, bleeding, or rash
Constant infections
A whitish color behind the pupil
Nausea which persists or vomiting without nausea
Constant tiredness or noticeable paleness
Eye or vision changes which occur suddenly and persist
Recurrent fevers of unknown origin
Now here is Matthew's story of courage and hope:
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"Mommy, I need to rest for a minute"; that was the first subtle sign. It was mid-May 2000 and Matthew was 4. At first I thought the S.C. heat was getting to him but the next week while riding his bike, he started crying saying it was too hard to pedal. I had his allergy medication switched to one that was non-sedating, hoping this would help his energy level.
In June he started having sporadic fevers of 100-101. I took him to the pediatrician three times that month (seeing various doctors in the practice) and I told of his decreased energy, fevers, and now night sweats. Each doctor told me it was viral, would run its course and not to worry about it.
On July 4th he had a 101 fever and severe abdominal pains. He was crying so hard I was sure he had food-poisoning or a bad stomach virus; still, the word "cancer" never entered my mind. I took him to the pediatrician for the fourth time, took my log and reviewed his symptoms (1) fevers of unknown origin (2) decreased energy (3) night sweats and now (4) abdominal pain. If you know anything about childhood cancer (which I didn't) you know these are all early warning signs but again he was diagnosed as "viral". This time I personally requested bloodwork and it showed his hemoglobin was low. This doctor told me the problem was Matthew was "anemic". I was handed a list of iron-rich foods to increase in his diet, instructed to give a multi-vitamin with iron and return in 6 weeks for another hemoglobin check.
Over the weekend Matthew lifted his arms to put on a shirt and I noticed his right ribcage seemed to stick out farther than the left one. On Monday morning I took him to a different pediatrician; this man had just joined this staff and after one abdominal examination he told me Matthew's liver was enlarged and complete bloodwork was ordered.
Almost two months had passed since his first appointment, he had four different abdominal examinations yet no one noticed an enlarged liver (by the size of it it had been that way for sometime). He wanted Matthew admitted to the children's hospital for an MRI.
That evening, July 13, 2000 at 8:30 pm, the pediatrican and resident came to tell us the news I had never expected to hear. The MRI showed a large mass in his right liver lobe that was creeping into the left and it resembled a rare malignant childhood cancer. We were in shock and spent the night crying "God, why our child?".
The next day we were escorted into a room of doctors, nurses and medical students to review his MRI. There in a room full of strangers we were shown the tumor that lived inside our son's body. An oncologist told us we could measure the amount of disease in his body by his Alpha Feta Protein. Normal is an 8 and Matthews was 394,000 so they were almost sure it was Hepatoblastoma but a surgical biopsy was done to confirm their diagnosis and at the same time a port-a-cath was inserted under his chest skin. Because of the number of sticks he would now be receiving, this would be used to access him for any bloodwork, transfusions, chemotherapy or other drugs that could be given intravenously.
After four rounds of Cisplatin, Vincristine &5-FU his Afp fell to 16,000. We met with a local surgeon but because the tumor lied too close to the portal vein and main arteries in his liver, he felt Matthew was inoperable. He suggested Matthew do more chemo but his oncology team said he was becoming chemo-resistant. It was suggested we look into a liver-transplant. At the time transplant was experimental for Hepatoblastoma and there was not much data available so I decided to get a second opinion.
After spending hours researching, we decided to go to Johns Hopkins in Baltimore, Maryland who specialized in pediatric liver resections and transplants. We sent Matthew's latest scans via Fed-Ex to the head transplant surgeon. He called us the next day and told us he thought Matthew was resectable and would not need a transplant. One week later, we were on our way to Baltimore, Maryland. We, nor Matthew had no idea what lied ahead. He went through a six-hour operation and a month of recovery with many complications, at times we thought we were losing him. Two months later, his Afp was still 375 and a CT showed the cancer was again in his liver and now, lungs. We went back home in January and began chemo again, in hopes to rid the remaining and micro disease. During this time, it was the stories that other moms had given me (see below) that gave me the hope to keep going.
Matthew had four rounds of VP16 & Carboplatin to which he responded well. Five surgeries later his Afp was 65 but since there were no other chemotherapy agents left to try that he was not resistant to, we researched other modalities. I got the idea to use radiation from another mom of hepatoblastoma.
In February 2002, I arranged for us to meet with a radiation oncologist in Georgia who specialized in using radiation (we live in SC). He told us he had used this on four other cases, of which three were successful. However, Matthew did not respond and his Afp rose to 560.
By April his Afp was 2600 and Matthew started having random headaches so I asked for a head CT. We sobbed as we saw the 4 cm tumor on his brain, it was located in the right frontal lobe. A craniotomy was done and it was suggested we follow up with an experimental chemo of Celebrex, oral VP16 and Thalidomide. He did this for two months; however it also was not effective and his Afp continued to rise to 150,000. Again, I drew my strength to go-on from these other moms, from prayer and from God.
By June his afp was 340,000. A full-body Ct revealed his liver was peppered with lesions and he had three lesions in his trachea which were obstructing his breathing. His oncologist said he would try radiation on the trachea, not to be curative, just palliative. After two weeks of radiation his Afp was 580,000 and higher than when he was first diagnosed. The lesions remained unchanged so we stopped radiation and left for the mountains to get away from this nightmare that was closing in on us.
Almost two years after he was first diagnosed, July 5th, Matthew's Afp was 1,000,000 and his oncologist told us they had done all they could. He estimated his life expectancy to be weeks and suggested we call in hospice and have pain medication ready.
Somehow, the reality of his death was still uncomprehendable. By August his abdomen was extended and his pain was controlled by hydrocodone and morphine. However this caused unbearable itching so we switched to methadone. He had to use breathing treatments, nebulizer, oxygen as needed and vistaril for anxiety. He realy did not want to do anything, not even go outside, especially not without mommy. He would tire easily and state he was sad or bored. He started waking up crying with night terrors, which was heartbreaking, and we had to hold him and love him to get him back to sleep.
On August 25th, 2002, our precious little boy went to heaven but not without a story to tell. Matthew spoke several words which I started journaling. He talked about seeing two men, that we could not see, and I will write more about this in Matthew's book but we know that angels came to escort Matthew to heaven.
At midnight my bedroom door opened and Cooper called my name crying "Janine, he's gone..... Matthews gone, he's gone". I could not comprehend that, I had to see for myself. I stumbled to where he was and looked at Matthew's chest. No longer was it rising up and down, no longer could I see his heart beating fast. I fell to the floor and a wave of nauseau came over me like I have never felt before. I was shaking all over and saw Cooper walk to the phone and call EMT. From there, the nightmare began and ended.
I went and held my son in my arms and I held him for two hours. Matthew never went far without me and even if his daddy took him somewhere he always wanted to know when I would meet him there. That was our saying when he rode with his daddy, "I'll meet you there", and that seemed to comfort him. Now, this seemed to only comfort me, I held him for two hours and cried, "I'll meet you there buddy".
Because of so many miracles in my life, I was certain God would heal my son. It was very hard for me to believe He wouldn't and hard to understand why He did not. For over two years, we fought the good fight and endured many obstacles. I miss my son terribly but now pray, "Lord, come quickly". My prayer for others is that you know God and have His source of hope so you will be able to endure this nightmare before you and possibly slay this dragon called cancer that has come into your lives.
"...I hold my children with more tenderness than I used to and I'd like to think that some of the people around us, who saw how suddenly and drastically a family's life can change, hold their children a little dearer as well"
(Janes-Hodder & Keene, 1999, Childhood Cancer).
In Christ Alone, Janine Bryan