Tuesday, May 4, 2010

Radiation Details

This post is going to be primarily medical in nature. I want to try to remember all of the information that was presented to us today when we met with Ally's new radiation oncologist: Dr Brenneman. We are feeling a whole new level of stress today. Much of it is the fear of the unknown. The doctor had some comforting words. The doctor also had some disturbing words. Once again we must have faith that we are doing the right thing for our daughter, so we accept the latest challenge and keep moving. But it is definitely not without stress.

First of all, the appointment did not start out very well. This was due to some minor problems like they didn't have us on their appointment books and they also didn't have a chart for Ally. This sent me into a bit of a panic, after we drove almost an hour to get there, but they were very nice and got it resolved and eventually found the stuff in their office. Then we sat in the waiting room for about 20 minutes. And listened to a little boy crying and screaming. For the whole 20 minutes. Not exactly the best first impression that we wanted to give to Ally. Jerad kept eyeing over at me with the "what should we do look" but there was nothing to do except grin and bear it. Ally, in her infinite laid-backness and somewhat steroid trance did not notice much.

After a long medical history and exam, etc, we were told about the radiation. She will get 8 days worth (in a row) to her brain. It will be at 1200 units (whatever they are) which is a very low dose all things considered. She will lie flat on a table inside a machine that looks like a CT scan (well, I think it is actually that too). Like a big open tunnel. Her head will be bolted down by this mask like contraption that she is able to breathe through and also see through. But she won't be able to move her head at all. Every single time she will start with a CT scan, followed by about 5 minutes of radiation. The whole appointment should be about 30 minutes, 10 minutes of which she is "bolted down". We cannot be in the room with her, obviously, but they will have a camera on her and we can watch her on a TV. She can bring her own music which may drown out some of the CT noise. She was assured that she would not feel a thing and this may be the only treatment that she has had yet where there is absolutely no pain. This is all good.

The immediate side effects are: nausea, headache, hair loss, and fatigue. They think these will all be very minimal...nothing like what chemotherapy patients feel. But...she will also be getting chemotherapy almost every day during this time also.

The long term side effects...this is where most of the stress comes in for us. There are three things that could happen
  1. Learning disabilities/Focus issues. These could start to come about years down the road, when she is in high school etc. BUT the dr thinks the chance of this is very small for Ally. Because she is getting the radiation in a low dose and also because she is older and her brain cells are mostly developed. I think he may have even said a 1% chance of this. Very small. This was truly my number one worry. Because who wants to go through the rest of their life without the ability to focus. That would be horrible if you ask me. But I don't think it will happen to her.
  2. The radiation can affect her pituitary gland, which is responsible for her growth hormones. The radiation could cause her to stop growing and be shorter. BUT he also said they would watch her on the growth chart, and if she flat lines out, they could just put her on a growth hormone to make her grow again. This doesn't concern me too much.
  3. Her chances of developing a secondary cancer are higher later in life. Like 20 to 30 years down the road. Some studies show she would be 20% more likely, but then he also quoted her at being more like 10% chance. And the cancer would be a brain tumor. Most likely a benign tumor that could be removed via surgery, but sometimes the tumor placement is inoperable. We were shocked to hear this. I know a 1 in 10 chance is not very high, but when it is your own child it becomes much more horrific. But he assured us the risk was worth the reward, because leukemic cells like to hide out in the brain. And we have to make sure they are blasted out of there. She will be getting a total of 9 CT scans. I was told 1 CT scan is equal to 3000 xrays. So in a matter of 10 days, it is like she is getting 27000 xrays.....plus the targeted radiation! I will try to block this fact out of my head from here on out.
Our only problem now is that they are debating which machine they are allowed to use to be in accordance with her protocol. As of right now, she is supposed to use the one that is downtown by University Hospital. But the machine at Westchester is actually newer. They are trying to get it approved by the COG so that we can save an additional 40 minutes driving each day. And allow her to use the newer machine...which is actually one of very few of them in the whole country. They did tell us either machine would do the exact same thing medically though.

We are due to go back Friday for them to make Ally's mask. She has a spinal tap on Tuesday followed by some long chemo...a whole day. So we are going to try to start the series of radiations next Wednesday...go everyday and finish on May 21.

Ally laid on her exam table listening to everything. She is not scared. She is fine with it and told the doctors such. As long as she can lay still in the mask, we will be good to go. Kids under 6 are put to sleep to ensure they remain still. I think Ally will do it on her own.

The crazy part of this whole thing...she has radiation on 8 days. On seven of those days she will also be getting a chemo infusion (ARA-C) from a home health nurse. We are going to be living and breathing treatments and doctors, etc. Thanks to all who have offered to help us through this time!

So that's the story. The long story. The big push at the end of our first marathon here.

8 comments:

  1. Wow. That is about all I can say. Such a full set of days coming up, but keep your eye on the prize. The big party is right around the corner. I will touch base with you as soon as I ship my last batch of orders out so we can chat about the donations. I am so excited!

    Now, I need to run. We are letting the boys stay up on a school night to watch Sponge Bob and drink Kool-aid. Next we will be heading to Walmart. (Hope that one made you laugh.)

    {hugs}
    Amanda

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  2. Catherine O'ChristieMay 5, 2010 at 4:21 PM

    Wow is a good thing to say. Hang in there. She is such a brave kid. You are in my thoughts and prayers. :)

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  3. Wow, what a list, but I know that this is the best thing for Ally. How come it is always the patient that is the strongest of the team!!! I know you saw this with your mom and I also saw it with John. Thank you so much for sharing all of the details. I hope they can move you closer so it will not be such a long trip. Hang in there team, the Army is always with you.

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  4. Intense. But I know you guys can do it. And I know Ally will continue to make you, and all of us, proud. The First Communions photos are great. And when you finish on May 21st, it'll also be my dad's birthday. Lots to celebrate! My thoughts and prayers will be with all of you in your journey.

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  5. Oh Janel is all I can say. It will be okay but a difficult road for any of us to imagine. We have friends going through it now and you know it will be tough and you all will make it. I know how much you must be looking forward to the end of this month. Life will get better, Ally will get better, you will get better and you will soon put this behind you. I have seen so many photos of children getting their masks made and it breaks my heart but in the end, it's worth it and try to focus on that part of it. I'm thinking of you all and praying everyday. She's so strong and such a fighter and brings us all so much inspiration as does her mother. I wish you a very happy mother's day.....a mother who is doing all she can to save her daughter's life and free her from cancer! You are awesome and she is very lucky to call you her mother :)
    Hugs coming your way,
    Diona

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  6. Dear Sweet Janel,
    Another deep, deep breath.
    Part of the journey, that you all must take, but not alone.
    You all are in so many friends daily thoughts and prayers.
    The day will come when Ally will be free of the cells. We have to believe.
    I can only imagine when you lay your head down at night the thoughts,
    dreams and hopes. BELIEVE.
    Hugs to all. :)

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  7. Your description of the radiation reminded me of another ALL survivor's experience. Check this out to see what her hospital did to make her experience better:

    http://members.shaw.ca/juliannabanana/radiation.htm

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  8. What an intensive program for sweet Ally to endure! No wonder she is such a mature girl for her age. God has given her such wisdom and strength to deal with all of this. I'm praying for all of you for extra strength for this part of your journey.

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