Hi everyone! Wow, do I have information today. A lot of why I do these informative blogs is to give me some reference for a later time, so those that aren't interested in the details, I completely understand.
First of all, Alex is home and doing pretty well. The MRI result has shown some inflammation. There was no clear plan for this by the time we left today. So... unsure where we'll go from here on that issue. At least Alex knows that she wasn't having some phantom pain :o) I'll update when I know more about that issue. The HD methotrexate has cleared her system and she was released about 1:00 today. Much better time of day to get out of the hospital. On our way home from the hospital I got a call from the BMT coordinator with all of her pre-transplant work-up schedule and MUCH information. Here is the plan:
Tuesday, November 30th
11:30am - Oncology clinic for one more lumbar puncture. Will administer long acting
ARC chemotherapy.
Wednesday, December 1st - BMT work-up
9:00am - Pulmonary Function test
10:00am - ECKO test
10:30am - EKG
11:00am - Pre BMT labs
11:30am - consent consult with Dr. Boyer (I guess there is some type of study they want
me to know about - 30 page reading material tonight)
Monday, December 6th
9:00am - BMT clinic appointment
10:30am - Bone marrow biopsy/LP (lumbar puncture)
Possible surgery for new triple lumen port
Tuesday, December 7th - Radiation work-up
8:30am - Radiation consult - Huntsman Cancer Center
10:00am - Planning - Cranial Boost
11:30am - Planning - TBI (total body irradiation)
Wednesday, December 8th - Dental consult/check up
10:15am - Dental check up with X-Rays (family dentist)
The bone marrow people want this dental appointment done.
Thursday, December 9th (this sounds like a super fun day)
9:45am - Finance education
10:00am - Dietary education
10:30am - Pharmacy ed
11:15am - Nursing ed
1:00pm - social work
1:30pm - child life information
2:00pm - update history and physical
3:00pm - Admit consult with BMT director
Monday, December 13th
Cranial radiation - time to be announced
Tuesday, December 14th
Cranial radiation - time to be announced
Wednesday, December 15th
Cranial radiation and possible admit for new port surgery
One of the frustrating things on this HUGE "to do" list is a surgery for a new chest port. The port that was placed on the 19th of August was a double lumen port (2 I.V. accesses) and she needs a triple lumen port. This is VERY frustrating to me as the reason they were putting in the Broviac double lumen port was for a BMT. Why they didn't find out exactly what type of port should be placed is beyond me! SO... not that Alex is having so much fun and can't be pulled away for yet another surgery... but COME ON! So, we have two different tentative surgery dates. The first being the day she has her bone marrow biopsy on the 6th of December... or the last day of her cranial boost, December 15th, with an early admit for the surgery.
This is what a triple lumen port looks like. As of now, Alex only has 2 lumens.
BROVIAC® catheters are tunneled central venous catheters. The catheter is tunneled under the skin and placed in one of the veins just under the collarbone. The catheter is long enough to reach the large vein that enters the heart.
On the blood issues....
I found out what Alex's new blood type will be. She will now be A+ Not quite as common as O+ but I was urged to get people to come donate anything. Any type is great! But if anyone has A+ please come on down :o) Also, something that we need A LOT of in the coming months ahead are platelets. This is the slowest part of the blood that will recover. Many BMT patients need platelets every day. And every day will only provide a small boost of what is really needed. PLEASE GIVE BLOOD!!! I hope to have some information soon on the Blood Drive. Even if you don't live here in Utah, please know that you can hold your own Blood Drive in Alex's honor. I would be MORE than happy to give you information on getting in touch with the right people to organize this... Are you part of a church group? Have a company that would get involved? This is such an amazing and easy thing to give!!! Please help us get some blood stored up!
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