Sunday, August 28, 2016

More tales from our extremities

One would think that Spencer's ordeal was more than enough for one person, one family, one mom to endure last Wednesday, but no...that just happened to be the most extreme.

Oncology was interesting.  I guess we will start with Spencer since he's in the spotlight- Our oncologist is the only doc in the bone marrow transplant clinic that does a blood smear from a finger stick.  He is the only doctor who still finds value in looking that blood himself under the microscope. I appreciate that so much!  There are many little clues you can find a finger stick and looking at the live cells.

Spencer's smear showed a few abnormal/immature cells.  He said it's probably nothing to concern ourselves with but all the same, he would like to get the bone marrow biopsies done as soon as we can get it scheduled.  Since we are now in the big leagues, anesthesia for bone marrow biopies is not done. I will never, as long as I live, understand why this is acceptable.  At Huntsman, they only have one day a week that they schedule a bone marrow biopsy with sedation and only one can be done on that day.  I don't understand why, something about scheduling.  While we got permission to do sedation, the kids will have it done individually and on three separate trips to Utah.  Bleh!  For the majority of their lives, they have done this annually, and together.

Spencer continues to have some bad GI problems and lung issues so more appointments are in store for him.

Shelbie- we knew from our cardiology and pulmonology appointment that some of the granulomas have grown in her lungs and there are some new ones.  Because of this information, he doesn't want to do a PET scan just yet.  He thinks that despite the growth, she is still stable. He was puzzled by her depleted energy.  Other than that, she needs to follow up with GI and pulmonologist in 3-6 months.  We will see him every 6 months and bone marrow biopsy right away on Shelbie.

Sam is another mixed bag.  With two new lymph nodes enlarged in his lungs and another growth of unknown kind in his lungs, he is a mystery.  His heart was very worrisome to our Oncologist.  His rate is just so incredibly low.  It makes no sense to the doctors. Over the lunch break, he even met with our Cardiologist to make sure we shouldn't be doing something more.   He is also worried about Sam's vision loss that still happens frequently, I just stopped talking about it.  Sam will need his bone marrow biopsy, GI visit, Pulmonology visit, and a new one...Neurology.  Neurology is to try to determine why he is losing his vision.  Strange what we eventually come to accept as normal.

If you have been following along, I wrote a few weeks ago about how I think the doctors are dismissing the importance of the failing telomeres in the kids. I really believe the heart and lung issues and even the GI issues are directly related to the lack of telomere caps. The more I read, the more I feel strongly about this theory.

When Spencer was getting changed into a hospital gown for his oncology appointment, The doctor and I stepped out.  I didn't really know what to say to him so I just stood there staring down at the corner.  He broke my silence and said, "Can I ask you something?"
"Sure."
"I have a really good friend who is head of the Telomere Disease clinic at John Hopkins in Baltimore.  I have been thinking since I saw Sam and Shelbie this morning, that perhaps the reason we aren't understanding the way they feel is because of their short telomeres.  I wondered how you would feel if I called her and shared their records with her and perhaps she would be willing to have you come out and see if there is anything she can offer to help the kids feel better."

If that wasn't an inspired moment, I don't know what is.  I had prayed that morning that he would be wise and listen to the spirit.  I had no idea, his thought would be my exact thought.  I expressed to him that I felt the very same way!

I also said, "Part of me is really interested, but, at what point do we say, enough is enough and stop trying to find and fix problems that we both know will never be fixed?  I just don't know what is right anymore.  I don't know how much to keep putting these kids through, our family.  I feel like we are coming up on a crossroads where that decision has to be made.  I don't know what to do."

With his dark Lebanese eyes...He looked at me and I knew he could feel my heart and my hurt and my continuing sadness.  "I understand those feelings.  I don't think I know the right answer either."

With tears in my eyes, I responded, "I guess we just keep working together and trust that the answer will be known at the right time."

At the end of that long day in Oncology clinic, the kids each had a chance to say if they wanted to go to the Telomere clinic.  They all said yes.  We will wait and see what Dr. Shami's friend says and then make a plan.

Life this weekend has been hard.  I am realizing that the only way to hold on to life is to let go.  I'm tired and have lost the ability to focus.  Friday, the phone rang off the hook with nurses trying to get appointments for Pulmonolgy, Immunology, Gastroenterology, Neurology, Electrophysiology and bone marrow biopsies scheduled.  My new part time job is going to be spent in driving to and from Utah over the next two months.  There is so much that goes into scheduling three kids from the same family who live 4 hours away.  Still no dates and the thought of more phone calls this coming week makes me cringe.

I honestly have no clue how I am going to work with the schedule we will have to keep up and the toll these latest issues are taking on us.





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