Jordan’s Week – Email from Amy

From Amy Shahbaz:

–

Hello All!
I don’t want to say it too early but I think we might be having our new “normal” of a week.  Yeah!  The biggest factor has been managing Jordan’s poop issues.  We have been on either end of the extremes…constipation or diarrhea and it causes him to loose way too much weight, have tummy pains all the time, and wake up a lot at night and not want to go back down (and wake up his siblings all at the same time at 2 am…not fun!).  So pray specifically that we could just have “normal” poop and that I would be making wise choices as far as his diet, stool softeners, etc. and that his tummy could heal/settle.  Praise God that it doesn’t look like he got whatever tummy issue I was dealing with on Thanksgiving!  Pray that I can kick whatever allergies I think I am dealing with…it normally wouldn’t be an issue but I don’t want to risk the fact that it could be a cold around Jordan so that mask stays on for now.

The chemo’s largest impact on Jordan so far is his weakness…he was playing trains finally today and started crying cause he couldn’t stand up with the trains in his hands and go to the part of the track he wanted to be at.  It breaks my heart.  He can’t verbalize it all…but just says, mommy hold me…which means…help me get up!  I am thankful my career has been helping elderly mostly so I pick up on things quickly.  He is like a little grumpy (due to the steroids) old man that is walking by holding onto the furniture and should have a walker=)  Thankfully his siblings are really sensitive to his needs and bring him books, his favorite blue car, let him pick most of the “shows” (which is amazing as Jeremiah usually will not back down and wants his choice) and are “careful” around him.  The common statement are “mommy Jordan go to the doctor, pray Jordan feel better, Jordan has ouchie, it’s blue…no touch Jordan ouchie-only mommy touch.”

Sounds like the next round of chemo will be harder as his immune system (anc) will be at zero (starting the week of Christmas I think).  The MD said half of the kids with high risk ALL end up back in the hospital during this 2 month treatment plan with a fever as they literally have no resistance. The RN’s say that if Jordan does not fit into the “typical” treatment of “high risk ALL” Dr. Gaynon is the oncologist to have as he is the one who trains oncologists across the country on the treatment plans.  Just like with having quads, our perinatologist was not the one to answer all my silly questions, but he was the one we needed when “problems” arouse.  We are thankful to have Dr. Gaynon in charge of getting rid of Jordan’s cancer.  Our friends reminded us that our role is help Jordan be kid and have empathy for all he is dealing with.  My personality wants to know the plan and all the details…so pray that I focus on “my role” and take this journey a day at a time…as you cannot predict all the details I want planned out/prepared for at this point=)

12/9 will be the end of this first 28 day cycle of getting Jordan into remission.
So next wed will be the big day to pray…that he has no blast cells in his bone marrow (they will do a spinal tap, bone marrow biopsy, and get chemo in his spine while he is under anesthesia).  After that he will get his 2 chemo’s and then hopefully the oncologist will have the results for us. So it will be a long day=)

We are deeply touched and encouraged by the outpouring of support for our family and love for Jordan=)  Thank you!

Love,
The Shahbaz 6

No related posts.