Duffy (Kaylee’s mom) blogging

1/22/15

I apologize that I can’t give a detailed blog update like I normally do about how Kaylee has been doing. We have other issues that have come up this week that are a bit more important to share. This quick blog will be for those that are confused and have questions about what is going on with K’s blood.

When Kaylee last went to her chemo appt on January 8^th, her ANC (white blood cells that fight off infection) count was 240. That is really low, (she is neutropenic again) yet she still had to get her Vincristine chemo treatment through her port & Methotrexate chemo in her spine when she was sedated that day.  The Dr. told us that although she still needed to do her steroid week, they were suspending her daily chemo to allow her a week to get her counts back up.

I took K to get her labs done this Tuesday Jan 19th and was pleased to get a call from Nurse Mary from the cancer clinic late afternoon on Wednesday with her lab report. Until Mary said the lab report didn’t look good.. The first issue is Kaylee’s hemoglobin keeps dropping. Her hemoglobin was 12.2 four weeks ago, 9.9 two weeks ago and Tuesday her hemoglobin was 8.9. (A hemoglobin count of 7 or below means she needs a blood transfusion.)This isn’t normal. The 2^nd issue is that Kaylee’s ANC was expected to go way up. The Dr was surprised to see that her ANC count was only 740 on Tuesday after being off chemo for over a week.

Nurse Mary explained that Kaylee’s body must be trying to fight off something for her ANC count to still be so low ( I looked over at Kaylee who was next to me at the kitchen table  playing with playdoh looking a bit pale, but acting fine).The first thing Mary said was “We need Kaylee to get a virus test. We think she might have the Parvo virus, but we will be checking other viruses as well. That’s when I said “Can you spell that? I thought you just said Parvo, with a V….which I have only heard about from the Vet when I take my dogs in to get their shots…and that can’t be right…” She said “Oh, the parvovirus doesn’t affect just dogs. Parvo is also a virus about 90% of kids that are in school have had, and kids with a suppressed immune system have a hard time fighting off. People cannot get parvo from dogs and vice versa, (It is a different virus strain) but she can get it if say, another kid coughed or sneezed near her that had parvo. Meanwhile, that child probably never knew he had the virus, b/c if a child with a healthy immune system gets that virus; his/her body would just naturally fight it off, no problem. The problem with Parvo for Kaylee (if she has it) is that Kaylee has a weakened immune system already, and Parvo can cause an anemia crisis or chronic anemia in her and blood transfusions will be needed often (among other issues.). Mary asked if Kaylee had any form of a rash, and I said “Yes, she has a really small rash right below her eye, but I brought that up when we were at the clinic last and the Dr said it was probably caused by the Methotrexate chemo b/c Kaylee has such sensitive skin.” Mary just said “If she does have Parvo, the rash is good, because that would mean she is not contagious.”

Naturally I passed off the news to Chris who had questions I didn’t even think of, and we had to call Nurse Mary back, after Chris looked up medical notes about the parvo virus mimicking a Leukemia relapse, which of course put me in a small panic, near tears. Mary assured us that the “R word” is not even a thought right now. Kaylee has responded well to chemo, they just need to figure out what virus she could be trying to fight off.

SO! Tomorrow, Friday (1/23/15) we will be taking Kaylee to the Children’s Hospital of Atlanta Satellite Medical Office near us, for Kaylee to get a peripheral stick (blood drawn from a vein in her arm) to get a CBC and test for a few possible viruses. This causes both Chris and I anxiety, b/c she hasn’t had to be poked in a vein since she was diagnosed. She has either had to get her finger pricked or her port accessed. This will be new to her and I’m not a fan. I am clinging to the devotion today in the book Jesus Calling to ‘trust God with every aspect of our life. To trust Him during all our situations, every difficult challenge, anything that tends to make us anxious, and search for His way in the midst of all the circumstances.’ Such a much needed reminder today!

We will be praying for higher counts and no virus to be found! We will be praying for our daughter to be calm so the tests can be over quickly. We will remain faithful that God is healing her of her Leukemia and can rebuild anything that her little body needs help with. He created her blood, He can heal it! So thankful she has been playing like normal and doesn’t seem to feel crummy!

Please Lord; just let her become healthy again!

We will update the blog when we get her count report back. Thank you guys so much for all your prayers this week!!!

Don’t forget to please;
#PRAY4K

Jeremiah 29:11- “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you hope and a future.”