So... it was not such a productive day. We arrived at the Huntsman Cancer Institute early this morning for a cranial workup and also the planning for the Total Body Irradiation. Alex got as far as the mask made for the cranial part and that was about it. The machine that they need to finalize everything for both the cranial and the total body was broken. Go figure. The woman that was arranging all the planning found me to tell me the bad news and told me that we would need to come back in on Friday to finish up the planning sessions. Well.. I decided to exercise my right to say "NO!" I told the woman that Friday was the ONLY day that we were not going to the hospital for one test or another and I was NOT dragging Alex there on Friday. I said we would be up at the hospital both Wednesday and Thursday for other tests and that they had better decide what day would work for them on the days we would be there. They decided to have us come in earlier on Monday (the day the cranial radiation is to start) and they would do the rest of the work up before the first treatment of cranial radiation. It will be a longer day, but we will ALREADY be there! I told her that the poor kid only has a few days left before she will not see the outside of the hospital for a LONG time. Friday is going to be one of those days. Period.
The consultation with the doctor who is in charge of this type of radiation treatment was very informative. I will say that everything that he told us would scare the crap out of any normal person. For us... the radiation just seems like a detail that we have to have done before the really scary stuff. Here are some of the radiation details... The total body radiation will take place with her standing up against a wall where the machine can project the radiation onto her whole body. The treatment will last 30 minutes each time. I guess with the machine being far enough away to include her whole body makes it so the photons take longer to reach everything they need to reach. Alex will be getting 18 Gray of radiation. This is like a "wattage". Alex received 12 Gray to the total brain back in 2008 and because radiation is cumulative she will only get 6 gray to the brain this time.... adding up to the 18 Gray which is said to be the biggest dose they can give Alex. It all gets a little confusing. Alex will have some lung protectors in place for the total body irradiation to cut down on how much they will receive. It won't totally keep them from getting any radiation but it will help. The other bad news to all this radiation, that is almost for certain, is it will make it impossible for Alex to ever have children. The doctor told us that 50% of the women who get half this dose of radiation have become sterile. For Alex this doesn't seem to be something that makes her too worried or sad... but I just know that things have a way of changing when it comes to wanting or not wanting children. There are so many different side effects from all this radiation. The dosage is designed to kill the bone marrow. If that doesn't tell you anything... One thing that Alex has in her favor is she is done growing. This could have long term side effects for those children who still have growing and other developing left to do.
Well... that is about it for the HUGE radiation work-up we had planned today. A big waste of time... Dan took the day off, so that was a big waste... things like this are frustrating, but nothing we can do about it. The 3 of us did have a nice lunch together anyway :O) Ooooh, and while we were at lunch, on the other side of town, I remembered that we were supposed to stop by the clinic for Alex to have a CBC (blood test) done. SO, for kicks, we got to run back up to the hospital for that. At least it was quick.
Tomorrow is another busy day. I hope that we are able to get everything accomplished. All 3 of us are heading north to Layton for our dental check-up. Alex must go for part of the bone marrow work-up and since we'll all be there... we may as well get that done also.
On a positive note, Alex seems to be doing really well today. She is lively and talkative. It's been a really nice day in spite of it all.
Thanks everyone for tuning in! It is so nice to have this support system. I don't know what I would do without you all!
NOW... let's talk BLOOD! The blood drive has been scheduled. At least one of them has. We are hoping to get another one going in the Salt Lake area soon, but nothing has been done yet. We do have one scheduled for December 18th... 10:00am until 2:00pm at 2300 University Park Boulevard, Layton, Utah (LDS chapel) Please email me if you can make it. ARUP will not do the blood drive unless we have enough people signed up to come. Please come and donate! It's so easy to give and it does so much good! Also... one thing we need the most of, and any blood type will do... is platelets. Platelets are very much needed all the time. They are a HUGE treatment in Bone Marrow Transplants. Platelets last only 5 days so they are needed on a continual basis. Like I said in a previous posting, Alex will need platelets almost daily. This type of donation is not as easy to do. It's safe... and you can actually donate platelets every 7 days... it's just not as easy as showing up to a blood drive. They don't have blood drives for platelets. You have to go to their facility and they take out blood like a whole blood donation, but then a machine spins off the platelets and takes them and the red blood cells are put back into your body. The machinery is a little more intense making it difficult to take on the road for a blood drive. Unfortunately. I am trying to get some small groups who are interested in going with me to donate. I think it would be much more fun to have someone to talk to while sitting there doing this. If anyone is interested, please please email me. sburbank35@aol.com If you want to make your own appointment to donate platelets (and PLEASE PLEASE DO!) you can click HERE.
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