Emmett has completed his first two weeks of proton radiation therapy. He receives radiation at the Francis H. Burr Proton Therapy Center at Massachusetts General Hospital. This is across town from Children's Hospital Boston / Dana-Farber Cancer Institute where the rest of his treatments have been to date
One challenge we faced in preparing for radiation were the differing opinions of these two world-class hospitals. Dana-Farber's protocol prescribes radiation in parallel with intrathecal chemotherapy (chemo injected directly into Emmett's brain/spinal fluid). Mass General, however, feels that radiation with concurrent intratheal
chemo increases Emmett's risk of paralysis, especially considering the
trauma his spinal cord has already experienced. If Dana-Farber were to insist on administering intrathecal chemo, Mass General says they would lower the dose of radiation delivered to his spinal cord to a level they feel it could tolerate with chemo, but which is lower than what they feel is necessary to successfully treat the tumor.
We are extremely hesitant to deviate even slightly from the DF protocol because no one knows exactly what makes it so successful (survival is 50%). All other studies quote survival for kids Emmett's age as 10%. The question Mass General says we need to ask ourselves is if we want Emmett to survive badly enough to risk paralyzing him from the neck down.
How do you answer that question as a parent? Can you imagine paralyzing your 2-yr-old child? How would we explain to Emmett why his body doesn't work anymore? Would he ever understand? What kind of life would he have? Would he be happy? How would the pain of having a paralyzed Emmett compare to the pain of losing Emmett?
Words can't express the agony we experienced while wrestling with these questions.
Recognizing the radiation as a key element in successfully treating AT/RT, Dana-Farber agreed to forgo intrathecal chemo during radiation, but only if Emmett's spinal fluid was clear of cancerous cells. So last Wednesday they did a lumbar puncture after his radiation treatment to get a CSF sample. We held our breath and prayed for two days until the results came back Friday night - clear! Another miracle. Now we have to pray that his CSF stays clear until radiation completes (and longer!).
We'll post more info on radiation therapy soon...but we wanted to provide this prelude first.
6 comments:
We are praying still! Much love... The Sweeneys
MD Anderson down is Houston is where we did Gavin's proton radiation and ran into a similar issue. The compromise between the two facilities was to hold all intrathecal chemo during radiation. We made up the missed doses of IT chemo later.
Praying for you all. These decisions are so difficult.
Much love,
Stacie Smith
Mama for another AT/RT warrior
www.smithscooptexas.blogspot.com
I can't even imagine the pain from just having to make such horrible decisions... you and Emmett are all in our prayers...
No, I can't imagine how wrenching it must be to make these decisions. You are all so incredibly brave. And tremendous examples of faith and love. Praying for many, many more miracles to come your way.
Hi, Thanks for contacting me through Gabriel's blog, and sorry it has taken me a little time to come back to you.
I have read your blog now and am up to date with where Emmett is in his treatment protocol. I understand how utterly hard this is for you. It is a long and painful journey and I am sad that yet another family has to embark on it. It will change you forever, it did me. But not necessarily in a bad way - it will make you know just what is important in life.
Gabriel, as I think you may know, did not have radiotherapy at all. We live in the UK and because he had a tumour in his brain and on his spine, radiotherapy was not an option available to us. We have had to make some pretty horrendous decisions during his treatment and my only tip is to go with your instinct and to listen to advice from your team. You must trust your team. If you lose faith in them, the journey will be all the more difficult.
We did not compliment Gabriel's treatment with any other treatments. It used to frustrate me when people would advise that he ate certain foods - we could barely get him to eat a thing (he eats everything now). My big tip is this though - always talk positively around him. Do not let people talk about how ill he is in front of him. He must only hear positive things and must believe he is getting better. We are big believers in the power of positive thinking. Gabriel was always told that he was getting better, that the medicines were 'squishing the sicky'. We never let him hear words like 'brain tumour, cancer, death'. What 2 year old should hear those words? He is 6 years old and he still does not hear those words, although the older he gets, the more information we slowly drip feed to him as he is now starting to know something massive happened in his life that did not happen to his friends.
We also willed him to want to survive. On his sickest days, we would talk about him getting better and playing outside. We kept photos of his friends and family all around him. We talked to him about them.
We also prayed, went to see a healer within the Catholic Church, took him to Lourdes in France (but only when he was out of treatment (by about a year) as he was to vulnerable to go during treatment).
I don't know why Gabriel has done so incredibly well. His name means 'The Messanger' and he is a message of Hope to other families embarking on the AT/RT journey. I used to picture him in a school uniform and will him, in my heart, to get to that age. He is now a happy, healthy six year old little boy.
I wish you the very best for your journey and will pray for Emmett. The key is to try and take each day as it comes. Hand on heart, I can say that some of the days during our treatment were the happiest of my life because I truly understood how lucky I was to have my child with me that day, at that moment. Some were unquestionably the hardest of my life and on those days, I leaned on my husband, my family and my friends. Gabriel never knew that I had those days. xxx
Oh wonderful it is to hear from those who have children who survived AT/RT! Stacie, good to know you guys held intrathecal during radiation and everything worked out okay! This definitely brings us an increased measure of peace. Gabriel's mom, how wonderful to hear your story and know that Gabriel is school-age boy now fulfilling the vision you had years ago! There are many things we can learn from your story-we should be better about only talking positively around Emmett and saving the negative discussions for other times. We could also do better by always surrounding him with things that will lift and inspire him including the good things in life he can look forward to when treatment is over.
We appreciate you both taking the time to help us along this difficult journey. What an inspiration your warriors are! We look forward to keeping in touch with you both as we progress through Emmett's treatment.
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