First and foremost, all is well with Ally. She had her spinal tap today and we found out an hour later that her spinal fluid was clear of any cancer cells. Thank you God. She did really well through the spinal. She never actually falls asleep, and often she screams. Today she did not scream for us. So that was good. She was, for the first time, acting relatively goofy right after it was done. She was making everyone in the room laugh. She would say "I see you over there Daddy. I see you too Mommy"...just in a goofy voice. They invert her afterwards (head below her feet so the spinal chemo runs to her brain) and she took a pretty good nap.
We did have one unplanned event. She had to get an IVIG infusion this month...she hadn't gotten one in about six months. This is basically something that builds up her immunity (which had tested lower than normal on her today at 300, supposed to be above 600) and with school starting Dr B felt it was important. After 15 minutes into the two hour drip, she started with severe stomach pain and her face got blotchy. She was having a reaction (which has never before happened with this). It was a little scary because it can actually start to hinder her breathing. They clamped her off and paged Dr. B and he came right up. (another first for us) Again, he stressed that he wanted her to have the infusion. So they premedicated her with tylenol, benadryl, and hydrocortisone and slowed down the drip speed. She did alright, but it made for a very long day. Left the house at 745 am and got home close to 7 pm. That is a long day.
I will do anything as long as that spinal fluid remains clear.
I do have to say I have enjoyed not being at the hospital so much. As soon as I went back in and up to the fourth floor, the smells reminded me of many past days that were not so good. It is amazing how it can all come right back to me in an instant. Last fall we spent weeks on end in there. The playground, the cafeteria, the gift shop, all of it was my home. I can't help but cry when I go back. I am not sure if it is tears of joy that I am no longer there or tears of sadness for what I have been through. I truly can't tell, so maybe it is both. I am just so grateful that this Fall is shaping up to be different.
Today, they gave us a date. Her chemotherapy treatment will be over on September 17th, 2011. Exactly one year from tomorrow, Friday. I can't even start a countdown, it would go against my grain. But I can pray pray and pray that that day actually arrives.
Two weeks from today is the Light the Night Walk for Ally. I am trying to get everyone signed up soon, so if you are planning to walk, could you please sign up here. We are most grateful for the LARGE team we have already built (over 100 walkers now).
http://pages.lightthenight.org/soh/Dayton10/AllysArmy
Thursday, September 16, 2010
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Hooray for clear!! A wonderful answer to all our prayers, and now a light shining brightly at the end of this tunnel. Sept. 17, 2011 will be here before you know it!
ReplyDeleteSo glad to hear that yesterday was not so terrible. We have to keep the faith, our prayers will be answered.
ReplyDeleteWhew. Thank God for a clear spinal tap. That's something to celebrate. And I can't imagine the emotions that surface when you head up to that floor. I'm just glad you are letting yourself feel them....oh, and one more thing. I agree with not counting down to Sept 17, 2011, but I do have complete faith that the day will come soon when the chemo is all over.
ReplyDeleteWOOHOO !
ReplyDeleteSounds like all is well. Hoping to get a team for the walk. Janel, hugs to you and Ally, you all are running a good race. :)
hey! just wanted to let you know i got your adorable gift today :) i LOVE the Ally's Army shirt... so cute! I can't wait to try it on Hallie. You are too thoughtful. Thanks again. Glad to hear things are going well :)
ReplyDeleteGod is good and you are amazing.
ReplyDelete{hugs}
Amanda
Wow, what awesome news, a clear tap, that is wonderful. I remember waiting for bone marrow results--always nerve racking, and I am so glad that you all get to go to Hollywood, you all deserve it very much. Keep going that one day at a time, it will go a great deal faster, I know. Take care and keep up the good work. My thoughts and prayers are always with all of you.
ReplyDeleteI'm so happy to hear Ally's good news! God does listen and answer. Continuing to pray for Ally and your family.
ReplyDelete