Week 9 Immunoglobulin

26 Jan

Despite having low platelets, red blood cells and white blood cells, last weekend was quite full.  All of Susie’s siblings, except for Doug, were in town.  The funny thing is they were in and out, so not at the same exact moment.  We got to see each one in targeted bursts and every day had an personalized adventure.  As our house was under quarantine, we also had the ability to close ourselves off when needed.  Pearl greatly enjoyed seeing her cousins, Bea and Scout.   Susie also received a beautiful blanket made by her sister Ann.  We finished the weekend with a brief visit from Susie’s cousin Amber, who brought us a delicious vegetarian lasagna (more than enough for two nights :-).

As Monday was Martin Luther King Day, we learned the pre-certification department for Aetna was closed.  The request for immunoglobulin (IVIG) approval was in pending mode and there was no one we could talk to at our insurance about its status.  From talking with the Texas Oncology person who follows up with the insurance companies, pre-certification can take 2-3 days.  So, we came to the conclusion that it could be Tuesday or Wednesday before we heard back from Aetna.  The decision was made to continue daily IV steroids while waiting for IVIG approval.  After a few phone calls later in the week, we received approval middle to end of day Wednesday.  So, Susie had her IVIG on Thursday.

With the IV steroids, Susie normally arrives at 9:30 am, gets a blood test and then sits down for a saline drip.  The steroids are then added to the IV.  It normally takes about a half hour for the steroids to complete.  We are normally out of the transfusion room by 11:30 am.  On Thursday, the process was similar except she had three bottles of IVIG added to the mix.  They started the first bottle slowly and observed her closely to make sure she did not have an allergic reaction.  About mid-way through the first bottle, Leora and Leona (Susie’s mom and aunt/ mom’s twin sister) came up to join Susie.  I had some work to do and knew she would enjoy their company.  I have a feeling there was a lot of laughter and smiling.  Susie finished around 3 pm and came home for a fancy lunch with Leora and Leona of peanut butter and jelly sandwiches with Ruffles potato chips (crisps for our friends in the UK).

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Friday was a snow day, I mean a dusting of sleet day, and schools were closed.  Susie’s appointments were moved from the morning to the afternoon. Good thing, as I hear there were a few multiple car pile-ups on the highways.  Her platelets hovered around 8k all week.  After the IVIG, her platelets had risen to 13k on Friday.  We are hoping to see a more pronounced improvement on Monday.  So, this weekend is laying low.  We had take out on Friday night and I made Schnitzel on Saturday.  This morning, Pearl is playing her Hobbit Ocarina (such a pleasure to hear) and we are overjoyed to learn Gabriel is going to Thailand this Spring Break for teaching rural farmers how to implement an organic composting system that he worked on last Fall as part of Cal Poly Engineers Without Borders.

Lastly, I’d like to mention that we really like Dr. Helmer.  He comes to Susie every day in the infusion room, holds her hand and smiles.  On Friday, he shared a Clementine with Susie.  He’s truly an amazing doctor.  We are so blessed.

Guy Lipof

Accomplished Engineering Executive with deep consulting and sales expertise in healthcare and life sciences, particularly in oncology, driving business strategy, delivering innovative solutions, and improving patient outcomes. Care partner and advocate for raising awareness about and investment towards Brain Cancer Research, such as Glioblastoma Multiforme and IDH mutant gliomas.