Wednesday, September 14, 2005


We got the results of the MRI today and had a meeting with our neurosurgeon Dr. Ward, our oncologist Dr. Dunn and neurologist Dr. Shapiro. The MRI shows extensive damage to the cerebral cortex. Theo is severely brain damaged. The damage occurred from the original bleed of the tumor. Remember that the initial surgery to remove the tumor occurred as an emergency surgery after a very significant change in his pupils was noticed. That was the very first post/email. That bleed caused this damage which was not apparent until now. After that first surgery, they showed us on a follow up scan where there were some darker gray areas in the brain (healthy tissue shows up as very bright gray/white) and told us then that these gray areas might be stroke, blood, damage, or just swelling, it was too early to tell. I held out for swelling or for very minimal damage that would eventually correct itself, but not cause a lot of long term problem for him. I was wrong. They are unable to tell me exactly what type of functioning level he might be able to have. Mainly because he's so young and had not reached any real developmetnal milestones yet anyway. Also because the young brain is so changeable, it's hard to say what he may or may not do. He may never do anything more than he is doing right now--lying in bed doing baby stuff, pretty much at a 1 month or newborn level; except he is not sucking and probably will not ever be able to eat without a tube. He may eventually gain a small amount of function, maybe sitting up, maybe grasping--we don't know and neither do the doctors. It's very doubtful that he will walk or talk or have significant relationships. In light of all this, we have decided to discontinue the chemotherapy. We don't want to put him through that stress. In three months or so (this was the time period suggested by the doctors) we will take another look and see whether the tumor has come back and then do palliative care, keeping him as comfortable as possible.

Another issue that is more immediate is that he has developed an infection. They do periodic blood cultures on all people with these Hickman lines to check for infection. If the infection is in the central line (the Hickman), which is very common in people who have them, it is easily taken care of. He is already on antibiotics. If the infection is in the shunt, we will have to make more decisions about his care. The treatment for an infection in a shunt is another brain surgery to remove the shunt and then to place another one on the other side of the brain. Or we can choose to forgo the stress of the treatment. The infection would develop into a case of ventriculitis (infection of the ventricles) which would lead to death. We have decided that if the infection is in the shunt we will most likely not pursue the treatment. We want Theo to be in no pain and to be as comfortable as we can possibly help him to be.

I know this is very hard to read, very hard to wrap your mind around. I am so sorry to have to tell you all this news. I am heartbroken and feel more sadness than I thought would be possible in my lifetime. But I do feel more at peace than I felt yesterday or even earlier today. Jamie feels the same way. We need all your prayers for strength and peace. Theo needs your love and good thoughts.

I will continue to keep you posted about the infection and on anything new that happens.

We love you all--
Karla, Jamie and Theo


~~Tam said...

If there were any words that I could say that would be able to make this all better, I would have said them ages ago when this all began. You are a magnificent person and Theo couldn't have anyone better to be his mom other than yourself.

Barbara said...

I commend you for being so strong, I dont think i would be so strong if put in your position. Whatever your decision is and whatever the next step or move is, I know and you already know you love that little boy with your entire heart and soul. I pray that Theo, you and your family have peace. I am sorry for what you are going through, I wish there was more I could say or do for you. I will pray and light candles for you and your family.

Suzy said...

We have not officially met. I am "Jonathan's mom" from the PICU. My heart breaks for you. Please know we will continue to pray for your family and for your peace.