On Monday after the MRI we sent the cd via Fedex to the Burzynski Clinic, as we always do. That next morning I got an email from our doctor explaining that the cd was missing the spine MRI, that all that was on the cd was the brain MRI with and without contrast. Unfortunately, some of Kassidy's tumor is in the upper part of the cervical spine and by just looking at the brain MRI it would be unfair to give a complete reading; therefore deemed the test incomplete. I freaked out! All I could think of was they missed doing the test! She has to do it again! NO!!!!! My stomach notted up and I wanted to throw up.
I immediately called Steinberg to make sure the test was done. It was! Big whewwww! I then got annoyed because after Kassidy's scan on Monday we were asked to go up front to request a cd to be made for our copy where we usually just get it from our radiologist right after in 10 minutes. We sat and waited for 35 minutes with Kass feeling terrible. All she wanted to do was go home. Ryan finally got up to ask why it was taking so long and they had forgotten about us. Oh my gosh! In our desperation in getting out the place not only because of the cd fiasco but because it was the exact same location where Kassidy's tumor was first found on May 2011 (bad memories) we did not examine the cd to make sure all the scans were on it. We assumed that they just would be on it. Ugh! Another learning experience for the future.....
After confirming that Kass had had the MRI of the spine after all, I asked the lady if there was a way an out of town doctor could view the scans thru an online website or program. She said YES!!! Halleluyah! Why didn't I know about this before! I immediately went into action with the help of a friend that works at Steinberg to help me get the clinic setup with the program, login, password, but of course it was almost closing time in Texas. Dr. A also meanwhile requested cds to be overnighted with the correct scans on it just in case the IT department and the clinic couldn't get all the problems figured out with the program.
It ended being this morning before everything was finalized, but low and behold the radiologist at the clinic in Houston was able to pull all the scans up. Success!!! Glad that's over, it will pave the road for future scans to be read almost real time. Great news!
|Lala always knows when Kass needs loving.|
Funny how God works, in what I thought was disaster at that moment there was something better in store for us. Thanks again Heavenly Father for showing me that things happen for reasons, sometimes circumstances that we might not understand at the time, are to teach me patience and that things will workout on your own terms. I'm humbled! And thankful for friends that stepped up to help. We are truly blessed that way.
Thank you to all for keeping Kass in your prayers, I know I say this almost everytime, but I truly am thankful and I think if we keep knocking on God's door maybe he will hear us. I want him to heal our Kassidy, I want my daughter whole again!
Monday, Dr. Burzynski will be reviewing Kassidy's scans to give his opinion to see if we continue on the same dose or increase. We are also wondering how long he thinks Kass will be on ANP if she keeps getting a stable scan. Does having stable scans since last October mean she has stop responding to treatment? Praying for guidance!!!
Tonight we ended the night with a fabulous dinner at Cheesecake Factory. Kassidy's Make a Wish granters took us out to dinner to present Kass with the itinerary of her wish, the Australia trip. She is so excited to go!!!!!
|Dinner with Make a Wish granters|
Ryan and I are a stressing a bit about the flight from LAX to Sydney, 14 long hours. We are gonna try to keep her on treatment, but not sure if we will be able to. The pump cannot be on for takeoff and touchdown, but also while she's on treatment she drinks so much water and will require to be getting up every 30 minutes, and also while you are a high altitude the medicine bags fill with air which could be deadly if a big enough air bubble goes into her broviach line into her artery. So with all these concerns, I ask that you keep her in your prayers Saturday evening. If we cannot keep her in treatment we will have to give her a double dose of phenerghan and knock her out for the flight, we do not want her throwing up the whole time!
Can't wait to share stories and pictures when our return from Australia. Stay tuned!