A positive beginning….finally!


Disclaimer..the medical information included may not be 100% accurate…but I have done my best based on the information shared with me today. Danielle, Angela (lab tech that tests and stores the cells), and Dr. Davis were very patient answering my questions.

I am finally able to sit down and reflect on a chaotic day of waiting and wondering if Ryleigh was going to have her peripheral stem cell collection today.  Once again I have learned the lesson that each medical professional at BCCH has a specific role and at times there can be miscommunication between the experts.  When Ryleigh was admitted on Saturday she was treated as a chemo patient and so there was concern about her blood levels and poor counts.  Both Ryleigh and I asked the oncologist (she is a fellow which means she is a doctor who is specializing in oncology/hematology) if that was not the purpose of the chemo to knock out her mature cells so the bone marrow will kick into gear and make lots and lots of stem cells.  This doctor consistently said no…we need to get the counts up as she is at risk for infection.  So Ry and I were a bit discouraged because we had thought we understood the process.

This morning the nurse who coordinates the stem cell collection came in surprised that we were not in last Friday to have Ryleigh’s count’s monitored….but again I had asked about that twice a few weeks ago and the attending doctors said no, she can come in on Monday.  I have learned that weekends and holidays can cause confusion in care…something I am usually aware of.  Also, she was wondering why the concern for Ryleigh’s counts….in fact, they were perfect…they are looking for the neutrophils to be close to 0 so the special stem cells that are needed will grow so they can be collected.  So…..Ryleigh was ready today for having her cells harvested, in fact it would have been even more ideal yesterday.

In order to have the cells collected she needs to have a special central line inserted so they can get the amount of blood needed.  Unfortunately, the weekend team cancelled the line insertion that was supposed to happen.  She was not going to have a central line which means we lose the opportunity for the stem cell collection.  She was going to have to wait 3 weeks and then start over again!

The nurse coordinating this, her name is Danielle, went to ICU and begged for them to find a time for Ryleigh to have a line inserted (it requires sedation, ultra sound, and x-ray as well as the necessary medical teams.  They were short staffed and busy and they did not think it could happen. But, she has tenacity and went down there a couple of times and explained the situation.  They were short a procedure nurse and she volunteered to do it so they could accommodate Ryleigh.  So, yes her line was inserted!  So she was going to harvest today!!!!

stem cell collect 1
The Stem Cell Collecting Machine (not the technical term!)

As soon as she was completed that procedure (about an hour and a half) they had everything set up in her hospital room to collect the stem cells.  This is the machine that does the collecting: . It is takes the blood out of her body (her total volume of blood) is removed, the stem cells are removed, and then blood is returned to Ryleigh.  She had this happen 7 times and was hooked up to the machine for over 5 hours.  The centrifuge that spins really quickly and the different blood cells sort out because of their weight and gravity.  stem cell collect 4.

Stem cell collect 2
Thankful for the generous Wurflinger’s for the IPAD…it has made this process much easier for Ryleigh.

Ryleigh was in pain after the insertion of the catheter and any tug or pull on the central line was very uncomfortable for her…but she persevered and worked through her pain.  She used breathing and relaxation techniques learned at a kids yoga class that she took years ago.  I was very impressed by her skills at dealing with these types of situations.  Bittersweet pride as I have noticed a maturity in Ryleigh in coping with these really yucky situations.  She has come a long way in learning how to cope and be real with her feelings and then solve using a more proactive approach.  Ryleigh was very patient and tolerant during the harvest. She had to keep very still.

And the end result…..

Stem Cells Collection is a SUCCESS...
Stem Cells Collection is a SUCCESS…

 

So the plan is for Ryleigh to stay in the hospital tonight….she has blood work in a bit.  Her hemoglobin has dropped to 85…they suspect it is going to drop again and she may need a transfusion.  If it is has not dropped too much they might want to wait a few days and see if she can build it up herself instead of giving blood products.  They also need to check the stem cell collection tomorrow and make sure they have enough stem cells harvested for transplant.  She will need her central line in until that number is checked (around 9:30 am on Tuesday).  If there are enough stem cells…Ryleigh will be discharged tomorrow.  She will spend the next couple of weeks having some tests and have a more permanent central line put in….and then the plan will be to start the transplant process at the end of the month.  We are back on schedule!  So it was a day that started with uncertainty and ended up having excellent results!

7 thoughts on “A positive beginning….finally!

  1. WOW! What a day! We are so glad to hear it ended in success and your gal was a trooper!! Ups and downs and ups!! Hugs and love from all of us! Hope you sleep well tonight (or at least tomorrow if Ryleigh gets released). Hugs and love from all of us here in the hoof!

  2. oh my gosh oh my gosh as I read I could almost feel being there with you and feeling the overwhelming emotions that go on. Jo, you are such an amazing person and your daughters rock man they rock! I love you guys and keep you in my prays.

  3. Praise God that things are finally going the right way!!
    I have never had so much admiration as I have for the courage and tenacity for all three of you. God bless you all.

  4. Oh wow! I am thrilled that it turned out the counts were what they were supposed to be for the harvest! So thankful for the wonderful staff that moved mountains so the harvest couple happen and Ryleigh did not have to start over!❤

  5. Wow! I got squeamish reading it all. Such kudos to Ryleigh for her strength in this situation and so many like unto it! Hugs to all, rest mum! Thanks for sharing!

  6. Hi Jo:

    Glad to hear that things are going better, or at least the same but with a different interpretation. Weekends with a sick child are not much fun at BCCH! Hope all continues to go according to plan! Have a good day!

    Holly

    ________________________________

  7. Thank you for sharing all the info with us – it is amazing how you girls are doing and I think of you all so often – you are ALL amazing and I admire your strength Ryleigh – you are a star – keep strong – lots and lots of love … Dy

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