December – long and overdue…

December – long and overdue…

Today we went to Costco and I ran into a friend.  It was so nice to get a hug but also made me realize we have been really busy and pretty much in hiding I suppose.  Overwhelmed would probably be a better word for it!  I haven’t even been on Facebook in well over a week and reading about everyone else is usually my escape!

Kimbell has been doing pretty well all things considered.  Her kidneys continue to be an issue so we started weaning her off of her anti rejection drugs (CSA) early in effort to save her kidneys.  We are hopeful there will not be any permanent damage but as with all things with bone marrow transplant we have to wait a while before we will know.  Needless to say Kimbell is extremely happy about this because once she is off all of her CSA then she should be able to get her hickman out and she can take a nice long hot bath that she has dreamt about since June!  It also means no more IV fluids, or heparin, or dressing changes, or stat locks, or tubes hanging out of her chest.  Incredible!! If everything continues to go well she will be off of her CSA in about 4 weeks!  So exciting.  While this is a huge step, she will unfortunately still be in isolation.

On a very positive note K’s throwing up is starting to get better!  She told me yesterday she believes the effects of her campath (one of the chemo’s) is finally out of her body and that is why.  Ironically they said it would be 6 months before the effects wear off and today is 6 months from her first dose of Campath!

The other big thing this month are some neuro or central nervous system issues.  She has been having periods where she is very light-headed, confused yet still alert.  During these times her eyes are very dilated regardless of light.  This is one of those times that as a parent you are so thankful for your physician that always goes above and beyond.  I emailed Dr. Tolar about it and told him the local team had told us to go to neuro so we had an appointment but I wanted his input.  He emailed me an hour later saying yes this is real, it is a breakdown with the central nervous system (one is either activated or the other is deactivated and not working in tandem), it is not drug related (she is on so many medicines still!) and that he was glad we were going to neuro.  So Friday we went to Neuro, we love her too.  The good news is that she is pretty positive that these are seizures just presenting themselves differently.  Unfortunately because Kimbell always has normal EEG’s they need to do a video eeg and that is inpatient.  We asked if we could wait until after flu season but she said no because if she is wrong we need to get to the bottom of it.  So in January Kimbell will go to the epilepsy unit at Dallas Children’s for three days and be restricted to her room for her safety.   Please pray that they figure out what is going on and that it not be something horrible.  As bad as seizures are at least we know how to deal with them and maybe this time if that is what this is we can get them under control with the right drug.  If this is due to damage to the central nervous system or neuro toxicity from chemo well then I’m not sure what we do.  So back to Dr. Tolar, I get home and I’m about to email him and this amazing man has already emailed me asking for an update!  We are so blessed to have this man care so much for our daughter.

In other news we got to see Aunt Chole and Zoey for Chole’s birthday which was a lot of fun and a nice break from our normal schedule of doctors and hospitals!  The next weekend John and Kimbell took me for a weekend dedicated to me for my birthday.  We went to ICE, a Sicilian dinner where the owner looked just like my grandfather so I started bawling in the middle of dinner! We made gingerbread men, saw all of the amazing lights at the Gaylord, had the best fajitas ever, watched Caddyshack 2 and laughed and laughed.  It was so nice to have some great quality family time.  Too much of our time is spent going back and forth to the hospital, doing meds and the mundane chores of life.  Don’t get me wrong, we are thankful for all of this because if we didn’t have all of these things then we wouldn’t have Kimbell but it was nice for two days for the emphasis to be on having fun and good quality family time.

My parents came in town for a couple of days, while it was so nice to see them it was way too short.  We have lived so close to them for so long and then right after they moved we found out K was getting her transplant and they came right back so not seeing them for the last two months has been really hard on all of us.  Even John said man I didn’t realize I missed them so much.  Needless to say K is crushed they are gone.

Recently Kimbell was fortunate enough to receive a package from Christopher’s Fight.  This is an amazing non profit started by a mom for those fighting like her son.  Unfortunately her son is losing his battle to brain cancer which is heartbreaking.  Since I haven’t been on Facebook I don’t know the most recent update but if you guys could please keep him and his family in your prayers they could really use them.  Apparently Christopher’s favorite thing was movie night so Christopher’s Fight sends these awesome kids a popcorn bucket complete with a redbox code for a movie and a game, popcorn, candy, bracelets, and a Pizza Hut gift card.  When Kimbell opened it and I told her about Christopher she asked when she could meet him 🙁  He truly is a boy with a heart of gold and right up K’s alley.  She loves movie night and those are all of her favorite things.  Thank you so much Christopher and Family.

A few days ago Kimbell received her wish list item from Battle for a Cure.  This is another awesome non-profit that sends a Christmas gift, off a list submitted by the child, to children for Christmas.  Well it came in the mail and she got number one on her list.  Disney Infinity 2.0 Marvel Starter Pack.  To the person who granted her wish, and all of those that work tirelessly for Battle for a Cure and most of all those that pray for all of these children Thank you  from the bottom of our hearts.  Kimbell was so excited and we have had a blast playing her new game!!!

If you have kept with me/us this far God Bless you and thanks for hanging in there.  I hope you are all ready for Christmas and you get everything you want.  We will be celebrating Jesus’s Birthday with a birthday cake and so many thanks for the best gift we could have ever received – the gift of life for our precious child.

Love and prayers,

Paige, John and Kimbell

PS If you feel like sending K a Christmas card or note of encouragement she would love it. 🙂

Kimbell Stevenson

6728 Fall Meadow Dr

Fort Worth, TX 76132

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John & Paige