Things have been pretty crazy here since we left on Sunday. We have a nice apt. for our stay here in Houston. I will definitely post some pics of it later. We have had 2 rough nights due to the girls. Both girls had a rough night the first night but Emily did well last night. Rachel had a horrible night last night because we kept her port accessed (left a 1 in. needle taped down on her chest so she could have IV access today) and everytime she rolled on to it she woke up very upset. We probably got about 4 hrs. of sleep last night. Hopefully tonight will be better- I told the anesthesiologist we won't be leaving her accessed again!
Yesterday Rachel had an MRI. It was a very long day to say the least. Her scans showed no significant change which is good. Today we are at the proton center and she is getting a stimulation right now to get the machine ready for her. It takes them a week to prepare everything for her to get her radiation. She has a mask and a bean bag that's molded to fit her legs. They try to make her as comfy as possible. We really like the anesthesiologist here because she's all about making this experience enjoyable for all of us. The childlife specialist here has great toys and they've done a good job of entertaining her today between appointments.
We met with the radiation oncologist today. He joked with us that Rachel doesn't make any biological sense but it's really worked out in her favor! He said that her kind of tumor is typically very aggressive but Rachel's hasn't been. Originally he wanted to give her the max dose of radiation she could get but now he doesn't know how much she'll need because her cancer might respond better than originally thought. He has decided that he can't come up with a concrete plan for her treatment (that's always been the problem with Rach) so she is going to get 20 doses of radiation & then he's going to do an MRI mid-treatment to decide where to go from there. He is hopeful that she's going to benefit from it but of course nobody knows! We feel good about our meeting with the doc this morning because they are hopeful and excited about how well she's done. When we told the anesthesiologist she had PNET and we've been at this about 2 yrs. she told us we are extremely blessed to still have Rachel! She also told us that we need to share Rachel's story because it proves that miracles do happen for cancer patients. We couldn't agree with her more!
I'll post some pictures up later. Just wanted to let everyone know that we made it and what's going on.
Amy I almost cried reading your post! The fact that Rachel is truly a miracle is so wonderful and exciting. I am praying for her constant healing and for your whole family as they go through these long days of tests. kiss Rachel for me!(especially since she would not get near me in person!!) :) christa
ReplyDeleteAmy- Amazing news! Thanks for being so prompt with the update! I did cry when I read it but I already knew what a little miracle Rach is. Love ya'll
ReplyDeleteHello, My name is Robyn Gregory. You do not know me, however we have been praying for Rachel since she was diagnosed. I learned of your story from a co-worker of mine who goes to Church with your Mother at Sts. Peter and Paul. Rachel truly is inspiring and such a strong little girl. We pray for a miracle for your daughter to be completely healed. How wonderful to hear that good reports you are getting in Houston. I just felt moved to send you a note. I also realized while reading your post, that Rachel has PNet. There is a little girl that we have been praying for and I beleieve she has exactly what Rachel has? This family is really struggling and I feel Rachel might be an inspiration to this family. The website to her story is www.caringbridge.com/visit/mcraekate
ReplyDeleteGod Bless you all!
Thinking of you all and praying for strength. Thanks for the update, we all knew she went to Houston! Take care! Rachel is a miracle, I don't know if I ever todl you this but I keep a picture of her on my desk at work, when things get tough and I don't think I can do anymore- I look at little Rachel and know I can!! Love you all!
ReplyDeleteCassie
Thanks for the comments we really appreciate them. I will check out the caring bridge site for the other girl. Thanks so much for letting me know about her.
ReplyDelete