Tuesday, March 4, 2014

Chemo Day 3 - Update from Mike

Today, Ava's pain from yesterday evening's spinal tap was unbearable for her.  She spent most of her waking hours crying and being unable to move.  The doctors were really surprised by this, since to them she is experiencing a very uncommon reaction.  She did receive "a couple pokes" according to the first report.  But when we took the bandaids off, there were five puncture points.  We're taking it as one of the common risk factors of spinal taps, and think it will go away eventually.  Last night and through the night, she received morphine for it.  Then all day today, she received oxycodone+tylenol.  Those things helped her sleep through much of the day, and 6pm was her first taste of food.  

Her stomach doesn't hurt anymore, nor does her head.  So we wonder if those things were triggered by a reaction to her first blood transfusion that she received yesterday.  The doctors are looking at whether to schedule allergy prep medicines going forward for blood transfusions.

Gwen came in today and had her labs drawn, so we should know in about a week how well she matches as a bone marrow donor for Ava.  I asked Gwen if she would be willing to get a shot to help Ava, and she agreed.  After she settled down from much crying due to one of those thick, fast flowing needles, I told Gwen, "When Ava heard you were getting a shot, she screamed and yelled at everyone, 'Don't do that to Gwen.  Don't give any shots to my sister!!'"  When I said that, Gwen listened and got really emotional.  She breathed really heavy about four times, as if to cry.  I think she realized in a new way how much her sister loves her.  
We received great help from Church members, who played with Gwen all day to allow her grandma to be with Ava while Esther and I consulted with the Nurse Practitioner about home care.  (That's not until next Tuesday at the earliest.)  Also, Ava's favorite (much older) boy from church came to visit and did magic tricks for her.  It really cheered her up from all her back pains.  Child Life also stopped by with a guitar, so that Ava could sing and play the drums to "Twinkle Twinkle, the ABC song, and Jesus Loves Me, which was a solo because the lady was a little rusty on that one.

From this morning's Complete Blood Count, Ava's WBC went down from 40k to 20k, which is a big win!  Her RBC went up to 9.6 (from 6.8), and her platelets went up to 50k from 42k.  The AML treatments are continuing to work.  Lastly, the spinal tap indicated that NO cancer cells were detected in the spinal fluid.  We are so thankful for that!

Numerous voice messages, Bible verses, phone calls, gifts delivered, financial donations, constant prayers, postings, visits, and more - have been a pure blessing.  I actually see hope in Esther's eyes, which means more to me than any of those great looking stats that came in this morning.  Her renewed trust and joy without the misgivings or hesitations seen over the past few days is the real backdrop of healing that awaits our daughter.  Esther can actually see it, no matter how dimly, and this puts an emotional and spiritual weight behind all the physical steps forward being made.

We're going to sleep well tonight!



As a side note, Mike commented how perfectly the childcare worked out today, timing and all. Thank you for being a blessing! (Update from Esther will also be coming in a little bit...)

1 comment:

luvleehaenah said...

Dear God,
I lift up my dear brother and sisters Mike, Esther, Ava and Gwen. Lord we know that you are a great and mighty God and we pray for your healing hands to touch Ava and bring her healing of her disease and to also overwhelm her with your loving and peaceful presence during her times of pain. We pray that Gwen will be a exact match as a bone marrow donor. Lord we thank you for the hope you give to your children during these times of trials.
2 Corinthians 1:3-7 ESV
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too. If we are afflicted, it is for your comfort and salvation; and if we are comforted, it is for your comfort, which you experience when you patiently endure the same sufferings that we suffer. Our hope for you is unshaken, for we know that as you share in our sufferings, you will also share in our comfort.
Praying for you guys!