Wednesday, May 25, 2011

The Buzz on Full Brain & Spine Radiation

Tuesday May 24th we went to see Dr. Douglas at the Proton Beam Institute in Bloomington Indiana. We knew going in that this would be a dismal appointment but felt this was a much needed step in our attempt to gain as much knowledge about our options as possible.

The clinic itself is wonderful. Its new, up to date, and generally you get a "homey" feeling. I even talked with a mom in the playroom whose little one was just diagnosed 4 weeks ago and just started focal radiation. They too see Dr. Shih and we were just chatting about cancer and Riley in general.

We got into our exam room and sat down with a doctor and a Resident. We discussed Keegan's past medical issues and current issues. We discussed things he is able and unable to do at this time and a general "look over" as to his current health concerns. They left, went out and looked at all Keegan's MRI's and scans and brought Dr. Douglas back to the room about 10 minutes later.

Dr. Douglas is a previous pediatrician, a previous Pediatric oncologist and now a pediatric radiologist. He seems to be a very brilliant man with lots of insight into medulloblastoma (he has been working with Pediatric cancer for 30 years).

Right off the top he warned us that doing full brain and spine radiation right now at this point in time will lower his IQ 30 points. That is ALOT and quite frankly, I was flabbergasted, but nonetheless we kept conversing. He said the longer we can wait on this full brain and spine radiation the better, just by getting him to 3 years old the difference in IQ effect is tremendous. Instead of 30 points it would only drop 20-25 pts. While that is still more than we would like, this is our best bet at beating this disease. Which I believe is still only 50/50.

So let me explain this IQ drop a little more. So what they are telling us is that he will be able to do what he can currently do at the time of the radiation. What will be a problem, will be gaining future knowledge, functioning, and life skills. So if we can get him to a walk, talking "average" toddler state before we have to radiate, he has a better chance at a more "normal" life.

This is the most severe side effect of this type of radiation, and the biggest factor as to what we decided to do. The doctor assures us that he won't loose his personality and when asked about his quality of life he couldn't really say because that is all Keegan would really know. He wouldn't remember the "before radiation" days. I don't know how I feel about this, yea its good he will not remember how he "used" to be, but not being able to really determine what kind of quality his life would be for however long is real tough.

Some other side effects of Proton Beam Radiation are inability for the spine to grow correctly thus having a shorter torso. I don't think its anything major per sei but I think its enough they need to tell you it can happen. Since we would be giving a large dose of radiation to the brain and primarily the original site of the tumor he would most likely need growth hormones for the rest of his life because the pituitary glad would be damaged due to the radiation.

Cataracts are another side effect to worry about although Dr. Douglas said children's lens transplants are done pretty routinely and are quite easy, as to make us feel better about childhood cataracts. Last but not least and I am sure there are many more side effects I am missing but secondary malignancies are always a possibility and that is about 2%-4%.

Dr. Douglas, like ourselves, is banking on Sloan Kettering to help buy some time. He kind of agreed with us on our plan of action so far and thinks radiation should be our last route. The regimen he would need is 6 weeks of chemo 5 days a week. Not a really easy small regimen.

We feel more comfortable knowing these facts now and what will happen if and when this road is chosen. Like mentioned in the last paragraph we are trying everything else first but if and when it comes to this I think we both feel more comfortable knowing he won't loose ground with skills, they will just be tougher to maintain.

The best thing we can do for ourselves at this point in time is to educate ourselves as much as possible before making any major decision and we are praying for guidance and peace in whatever decisions we choose.


  1. Is there any way they can hook you up with a family who has done this type of therapy? Someone you can sit down with and they can tell you the pros and cons of their decision to do this? Maybe it could give you some insight into what life could be like after the fact to help you better make your decisions.

    I'm glad you were able to get some questions answered today. We're still praying hard over here!

  2. Hi Beth,
    My name is Pam (Sedgwick) Penttila. I am Tom Sedgwick's younger cousin & live in MA as well. I am sorry for all you are going through with your baby. I am a Christian and will pray for you & your baby as often as I think about you. I do believe Jesus is still your Healer and will pray that He touches Keegan. I will pray for strength and peace for you knowing your little guy is in His hands. Also will pray for favor with the doctors and that God will give you the wisdom and discernment to make the right decisions for Keegan. I am a mother of 3 & can't imagine how hard this is for you. God bless you Beth - you are an inspiration to all. Know that no prayer misses the throne of God - He hears them all.
    Psalm 56 says "You put my tears in Your bottle, Are they not in Your book, when I cry out to You, my enemies will turn back; this I know, because God is for me. In God I have put my trust, I will not be afraid."
    With Love from a distant cousin, but there is no distance in the Spirit,

  3. Hi Beth,

    Thank you for explaining this to us! I have been and will be continuing to cover you in prayer and know Jesus will guide your decision.

    There is no doubt about it, this is very hard to go through but know you are not going through it alone. Jesus is with you every step of the way, even if you don't like how things are going He is in control. I will be continuing to pray for a miracle of 100% healing.

    Jesus, I know you are with Beth, Ryan and Keegan. I know You feel their pain and the struggle they are having over which direction to take. Please guide them and give them an overwhelming peace. Please let Your presence be felt by them at all times. You are a good God and I know You love Keegan more than they do, please heal this baby. Touch him and remove this cancer. You are our mighty physician and healer and at Your word he will be healed.
    Thank you Jesus for what You will do and we trust Your perfect will will come about.
    In the name of Jesus, amen.

    Praying and praying,

  4. Hello, I'm a new reader here. I'm so sorry for your baby's illness. I'm a nurse (very soon an oncology nurse) and work with adults with lung cancer and other respiratory diseases. It's hard enough when adults are affected by this tertible disease...but a little's horrible. I'll add your family to my prayer list, and added your button to my blog. From what I've learned, proton radiation should be much safer and with less unwanted effects than ordinary radiation?! That was some year ago now, it is probably more researched now. Radiation in small children is always ver difficult though..:( I hope you will get some more info, guidance and support in your decisions. You're in my prayers. Hugs all the way from Sweden.

  5. Hi Beth:
    You and your family are amazing. Thank you for continuing to share your journey with us. I cannot imagine how difficult it is for you, but know that the knowledge that you are obtaining and sharing is priceless. I am most appreciative. Stay strong! You are doing everything right by your son. Regards, Shawnee Jackson (Mom of SGBS boy McCaul)


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