Saturday, June 7, 2014

Day One


It's official.  Fionny has begun chemotherapy for leukemia.  I still can't believe I'm typing those words about our boy.  But so it is.  We are on Day One of the 28-day Induction Phase of chemo.  In short, we've hit the ground running, folks.

Believe it or not, the very fact that we were able to begin chemotherapy yesterday morning was, in itself, a triumph.  We couldn't begin chemotherapy until Fionn's electrolytes had normalized.  That was our first big task.  Electrolyte management.  It is, in essence, what brought us to the ICU.

When we arrived to the ICU, Fionn's electrolyte levels were off-the-charts terrible.  For example, Fionn's phosphorus levels were 17-18 when we arrived.  A normal range is 3-6.  At last blood draw, it was measuring 4.0.  HUGE success.

Similarly, his uric acid levels were 36.3 when we arrived.  Normal is 2-5.  In fact, our oncologist said she had never seen uric acid levels so high.  Never.  In her 12 years working with cancer patients.  That was kind of scary to hear.  However, I'm happy to report that his uric acid is now .1.  

I'll throw a few more levels at you.  His initial potassium level was 7.2.  Normal is 3.5-5.  It is now 3.8.  Also, his initial platelet count was 4000.  Normal is 50,000.  Last blood draw, his platelets were measuring 36,000.  Still not ideal, but they are giving him regular transfusions of platelets to keep him at an acceptable level.  Apparently, it's very normal to have low platelet levels when you are in the midst of chemo.

You might be wondering how they brought his levels back down to a normal rate.  They attempted at first to regulate them with medication, and they had some success with this route.  But it wasn't happening fast enough.  So we began dialysis on Fionn's kidneys early Thursday morning in order to flush out the bad stuff and give him a bit of a reset.  In order to do this, they had to put a catheter in his groin which required him to be sedated.  Fionn handled this procedure beautifully.  What he has NOT handled beautifully has been the discomfort of having to keep his leg positioned in just the right way to ensure that the dialysis machine is working properly.  That is probably the biggest struggle we have had so far in terms of Fionn's reaction to his care.  That and the inability to drink water during those first 24 hours.  Believe me, hearing your son cry out, "Mommy, please can I have just a teeny bit of water?" and not being able to give it to him is just about the most heartbreaking thing I have experienced as a mommy.  It was awful.  

Anyway, back to dialysis.  It worked beautifully for Fionn.  It returned his electrolytes to stable levels and allowed the doctors to begin administering his first dosage of chemotherapy late Thursday night.  The levels have continued to get better and better.  Our doctors have been simply thrilled with the results.  It's pretty awesome to see the excitement on their faces. 

Fionn's electrolyte levels normalized so much, in fact, that we were able to take him off of the dialysis machines yesterday evening.  This was a huge success.  Now we are just waiting to see if his levels continue to be normal.  If they start to go haywire again due to the chemotherapy meds, we'll have to hook  him back up.  But it's been hours, and so far everything is looking good.  Assuming things continue in this direction for the next 24 hours, we should be able to move to the 4th floor Oncology Unit on Sunday.  Hopefully, we can move before they hook up Fionn to his next chemotherapy medication that day.  We shall see.

As you can probably tell, we are feeling very encouraged.  Everyone seems to think that things are going as well as can be expected.

Fionn, for his part, is milking this situation for all it is worth.  Demanding movies, toys and food items every few minutes and definitely playing the sympathy card.  Although he shared one of his doughnuts with me earlier, he peered into the plastic package and reported, "Sorry, Mama.  There is only one left, and it's for me.  I'm sick."

So yeah.  Our boy is still kicking. Chemo ain't got nothing on him.

We'll report back soon.

12 comments:

  1. Yes! Go Fionny!! We're praying for more triumphs; big and small. Love to all!

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  2. Go Fionny! Kick cancer's butt!!!

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  3. Way to go!!! So happy to hear that Fionny is able to milk things! Please let him know that toys, movies and doughnuts are just the beginning...I expect that your son will soon be leveraging a trip to Disney, a great train adventure and a swimming pool for the back yard with several great water slides!!!

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  4. Yay, Fionn! Love to hear those beautiful numbers!! Keep up the good work everyone!! I'm especially interested in Fionn's personal research project, "Doughnuts as additional, alternative therapy for leukemia". Let me know when the findings are published. :D

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  5. Keep up the good work Fionny!

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  6. That is great! Glad to hear that Fionn's stats are responding so positively and so quickly!

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  7. Update sounds great...Instead of baby steps, Fionn seems to be jumping over chasms...Great job, Fionn...Praying many times a day..God bless you all and give you peace...Marsha Goodwin

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  8. Fionn,you are an amazing little boy with awesome parents,family,and friends that love you so dearly!!you keep on showing the doctors there what you can do!!!I love you and can't wait to see you and to give you,baby brother,and your mom and dad a big hug!!!!keep up the good fight,Fionn!! xxxooo~~~~you are the one that named me~ Ga Ga~ ~you little mess!!

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  9. Yay Fionn! As rockstar as ever! Love you buddy!

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  10. Prayers to all the family. !!

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  11. Good job, Fionn!!! Prayers for you, buddy!!!

    Sara Brooks Beil

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  12. I am so at a loss for words...I will only say..Bless his little Heart and we will be praying for his recovery. ..As well as comfort for him during this unimaginable process...I have faith that the Lord will pull him through this with the help of doctors and families prayers and faith!!! It hurts my heart in its core hearing that he and all of you are going through this...but the thought of a miraculous recovery and what character it can build in him for him to cultivate and carry into his adult life is also so exciting that it brings a flood of tears to my eyes!!! God bless you and your family! !!!

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