It was a beautiful day out today! It has been just gorgeous out lately... it helps when keeping spirits high.
Kayla got her first blood transfusion early this morning at 12:45am. She woke up feeling a LOT better. Getting blood transfusions are very common around here and apparently make you feel so much better. We can only relate it to the vampire stories. They are drained and lethargic and after a good feeding they have super powers. I swear I have seen kids do a 360 after having a blood transfusion. So, that was a good thing. Also kayla was able to go to the bathroom after 6 days of nada. The meds we have asked for are starting to kick in. That is good! That is one thing that we can be happy about... one less "pain" to deal with. Even after the meds kicked in and a few trips to the bathroom had occurred, we had a good weigh-in! Kayla was up to 17.2 kgs. We were thrilled. Finally.. the few bits extra she is able to get down and the drive to survive is back! We are so so so happy!
Kayla's fever remained gone. We are still waiting on cultures to come back. There is no update on when we should know. I would imagine tomorrow some time. They are waiting to see if anything is growing. That would mean that they need to keep Kayla inpatient longer to treat her for whatever it is. If the culture comes back negative and she is still fever free after 48 hours of admittance, she can be released again. It's a wait and see game. The good news is that she is feeling so much better. Her counts are still Zero. The general way this goes (for those of you like me who have never witnessed this) is the counts drop to zero quickly and then they rise slowly.
Kayla got her second mini dose of Vincristine today and her G-CSF push. She ate a decent lunch, finally, consisting of ravioli's and tomato soup. I am seeing a pattern here. She is liking tomato sauce. I also know what happens. She over-doses and will not like it by next week. Almost a guarantee! I hope not though! I'm always in search of a go-to food we know she will eat. I haven't found ONE yet.
Lipids will be added to her TPN diet in just a few moments. We look forward to seeing her cheeks, shoulders, back, stomach, hips, bottom and thighs start to fill out even a little!
Thanks for sharing in the love we have for our sweet girl.... Kayla Rose <3
This is the story of a girl named Kayla who at 7 1/2 was diagnosed with a cancerous tumor in her brain called Medulloblastoma. "You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives. " Genesis 50:20
OHHHH Our SWEET KAYLA!!!! We are SO SO SOOOO HAPPY you're feeling better! And we're very happy to hear that everything's working better too. Sometimes life's littlest things become the biggest of things!!! We love you and hope to Skype with you soon. Stay strong 'cause you're doing a great job so far!!!!!
ReplyDeleteGnite!
Love,
Neena
OOPS! AND BAPAA TOO!!!
ReplyDeleteDear Annie,
ReplyDeleteI am reading a book that Claire gave me called "Tiger's Qest". It contained this poem and I thought you might like it. Stay strong. Love, Barbara C.
The Loom of Time
Man's life is laid in the loom of time
To a pattern he does not see,
While the weavers work and the shuttles fly
Till the dawn of eternity.
Some shuttles are filled with silver threads
And some with threads of gold,
While often but the darker hues
Are all that they may hold.
But the weaver watches with skillful eye
Each shuttle fly to and fro,
And sees the pattern so deftly wrought
As the loom moves sure and slow.
God surely planned the pattern:
Each thread, the dark and fair,
Is chosen by His master skill
And placed in the web with care.
He only knows its beauty,
And guides the shuttles which hold
The threads so unattractive,
As well as the threads of gold.
Not till each loom is silent,
And the suttles cease to fly,
Shall God reveal the pattern
And explain the reason why
The dark threads were as needful
In the weaver's skillful hand
As the threads of gold and silver
For the pattern which He planned.
YAY for feel better days and weights that go up even a little. Horraayyy for lipids....dessert is being served :)! Ice cream, fats anyone :)? Continuing to remember you all.
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