December 2, 2013

Duffy blogging

It has been hard to explain what happened on Nov 21^st, because even the Dr’s have no idea as to why Kaylee’s liver was inflamed. Backing up~ 2 weeks ago, Nov 21^st, we had our bags packed in the car ready for our 3-4 day hospital stay for a harsh Methotrexate chemo drip that K had to do. Well, when they did blood work, they realized her Liver enzymes were too high. A normal person has an ALT liver enzyme of 80-100. K’s ALT liver enzyme was 638 on Thursday! This meant her liver was inflamed (and they didn’t know why) and because Methotrexate chemo in particular is metabolized by her liver, she could not do the drip. After getting chemo injected in her spine while she was sedated, we were told to come by the following morning to draw blood to see if her liver enzymes were any lower. We were told to take her off her medicine that caused hunger and not to give her any medication period.

I learned a lesson I have learned before. Don’t ever Google! Do not ever Google about things you are just learning about. Thursday evening I googled everything about high liver enzymes and all I kept seeing was titles with “Cancer of the liver.” I got myself all worked up and to be totally honest; freaked out. I prayed so hard with tears streaming down my face begging God not to let this all to mean that she had cancer of the liver.

I took her to the hospital blood lab on Friday morning (Nov 22^nd) and received results that afternoon. I conferenced my husband in on the call with the Dr. She said they ran a ton of tests on Kaylee’s blood b/c her liver enzyme was higher at 942! (How is that possible? She hasn’t been on a single medication in 24 hours) They tested her for infections I had never even heard of, as well as all types of hepatitis.  She was negative for those. She did not have any signs of storing Tylenol in her liver, and tested negative for any active infection in her system. Her bilirubin was fine (which meant her liver was working properly.) Our Oncologist said she didn’t know why K’s liver was inflamed, but it clearly needed a rest from any medication. My #1 question~ “Could she have liver cancer??” K’s Dr said “Nooo, aw Duffy. No. she does not have liver cancer.  I am 99.9% sure of that.” (Deep sigh of relief and mentally thanking God.)  She said to enjoy the wknd and to take Kaylee to get blood labs done on Monday Nov 25^th and she would call me with results.

I took my fearless little one to the blood lab on Monday afternoon. Kaylee smiled and said hi to her sweet lab techs that she is now used to. (They truly are so sweet to us!)  We did not hear any results until early Wednesday morning from Kaylee’s Dr. Her ALT liver enzyme had finally gone down a little at 752, but clearly not enough to do chemo. This meant that they were going to put off chemo a week so Kaylee’s liver could heal, and we would get to spend Thanksgiving at home! Yay! Time to buy a turkey! At this point, Kaylee has been off chemo for 4 weeks. A bit of hair is growing back and the girl is eating everything again. :> (she even loved a milkshake for the first time this wknd!)  Granted, the throwing tantrums at about everything and giving up her only nap of the day hasn’t been the best, but we are trying to enjoy every moment of the chemo break with her! Her liver inflammation doesn’t seem to bother her at all so that is nice! Her little feisty personality is on high, she is running everywhere, and booty shaking to all music which has us cracking up. Kaylee loved that my mom and step-dad came up from Florida for Thanksgiving. They stayed with us for 5 days and Kaylee loved all the extra attention. Chris and I even got a date day to watch the epic UGA vs Ga Tech game with our friends while Mom and Ron watched Kaylee! We were sad to see them head back home yesterday, but thankful they were here!

Tomorrow we head out to the Scottish Rite AFLAC Clinic to check Kaylee’s blood levels after lunch and if everything is ok, they will access her port, start the fluid drip and admit K to the AFLAC unit of the Childrens Hospital Of Atlanta. Wednesday morning she will continue the fluid drip (to protect her kidneys) but also begin the 24 hour Methotrexate chemo drip (ugh). We should be in the hospital until Friday. Please keep her in your prayers y’all. We want to make Wednesday our K Support day. If you have ordered a PRAY4K shirt, please try to wear it at some point on Wednesday, and we will be wearing ours. We will also be showing K pictures of people wearing ‘her’ shirt to hopefully raise her spirits :> I am praying against every single side effect of the chemo as well as praying for that appetite of hers to stay strong!

Thank you for keeping our family in your thoughts and prayers! We still have a long way to go in Kaylee’s cancer journey, but there is no doubt that the Lord is hearing your prayers! We will try to keep you posted on what is going on with K while we are at the hospital!

Big hugs to you and your families!

#PRAY4K

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

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