September = complications and exhaustion
So much has happened that I don’t know where to start. 🙁
Kimbell is holding in there. She is still throwing up multiple times a day and apparently this can last for some time. We are still going to clinic 3-4 times a week because her kidneys are still not happy. Her creatinine continues to slowly rise despite the fact that she has been drinking and they continue to add more fluids. So Kimbell is now hooked up to IV fluids 9-10 hours a day. We finally got some of the labs back from her day +60 visit. They were “as expected” in other words the chemo did its job and unfortunately the effects of the chemo are still in her body so the new bone marrow is limited in what it can do. Needless to say this was disappointing because well who doesn’t wish for more? When I asked when we could expect forward movement the response was that campath is brutal. Kimbell has been getting IVIG (blood product) every 14 days to supplement her non functioning immune system. This was supposed to stop at day 60 per the protocol that she is on. We were informed today that this has changed and she will be on it until at least day 100. My assumption is that this changed with the labs we got back this week.
This continues to be a long journey. We would greatly appreciate prayers for clarity and guidance. It’s funny at times I forget exactly where we are in this journey because she laughs, plays, and interacts like a normal kid and we relish those moments. Then reality hits like a Mack truck. I have to continually remind myself that without this transplant and this amazing generous donor she wouldn’t have any chance at a future. The hard part is that when I think about the future I can’t help but wonder about the long-term effects of the chemo, secondary cancers, and the organ toxicity. We had a long conversation about neurological issues this week with the nurse practitioner. At this point it is unknown if the neurological issues are a result of the recent blood infection, lingering effects of all the chemo, due to neurotoxicity aka permanent or a result of the massive amount of seizures she had in July. Apparently time will tell us the answers… Please pray that her issues are temporary. I think one of the things that makes this even more difficult is that she is so aware of the issues.
Since we are on the prayer request kick 🙂 Donna and Nana need prayers. Nana is on hospice at home and a little closer to heaven everyday. It is so hard for everyone to watch this process. Then our dear friend from SCS whom Kimbell shared a special bond with Lisa is also in the same place as Nana. I hate that these beautiful women are suffering and their families are left to watch. Please pray for them.
Last but not least – John. He’s probably going to kill me but he needs prayers too. For some reason nothing is easy in our family, and I mean nothing. John had back surgery two weeks ago, One of those that really can’t go wrong… and back to the OR he went on Tuesday, this time the surgery was way more involved and really long. So here I am bouncing between the Children’s hospital with K and John at St. Frances on the other side of town. They are really struggling to get John’s pain under control and well its John and he really wants to go “home” aka Sheraton 🙂 We are hoping he will be discharged tomorrow but in the meantime this is really hard on all of us. Kimbell just called me and told me I could stay the night with dad tonight because she doesn’t have the heart to make me come get her. Then she started crying because she really loves me and misses me. I am exhausted….
Love to all and thank you thank you thank you for all the prayers and support. We really wouldn’t be where we are without it.
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14 thoughts on “September = complications and exhaustion”
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Praying right now!
Good Grief!! You have so much going on! Sending prayers for your whole family!
holy cow momma! i so wish you were closer……or i was closer. God bless you all. I continue praying for Kimball daily, Boy give John a tender hug and let him know i am thinking and praying for him too………if anyone knows back surgery it’s me! And for you too…………….Ali
Oh Paige, I’m so sorry all this is going on. I’m glad you shared it all. I’ll be praying.
I wish there were words to send you. I can only hope you all get the strength you need soon, and know you are loved by so many.
I am so sorry for your difficulties…give Kimbell a hug for me..love and prayers,
Clare
Hi Kimbell. I can’t image how tired you must be with all of this. I’m sure you would prefer to be healthier and back at home. Linda and I are praying for you and hoping you keep a positive attitude through the long ordeal.
I can’t even believe what you all are going through! It seems like one thing after another. Hope this sage will take a turn for the better NOW!!!. Thinking of John with the back pain. Yikes, have had several friends with back surgies. nasty stuff. K you are a great kid…this will pass and you will soon get on with your life. Paige, what can I say; you are one heck of a shining star. Be strong my friends, you are in my thoughts and prayers.
it is like a big circle without an end , praying for a solution soon and healing thoughts to all of you
I just read your latest comments that your dad forwarded, Paige….am so sorry to know how difficult all this has been for each of you. We pray everyday and just hope for the best. Wish we could do more.
Ginger
Love you guys and stay strong and keep the faith. You all can get thru this. Sending lots of prayers, hugs and love your way
I just will not understand how you all find the strength! My heros! I love you guys and have been sending all good healing thoughts your way. I truly believe that the clouds will part soon and a new wonderful “normal” will begin to show itself. A family with so much heart and soul should get a break!!!
Praying for your strength Paige. You are one tough mamma!!! Praying Hod eased John’s pain, so he can get back to the hotel to see his girls. Praying for God to continue to place his healing hands on Kimbell and make her well. Love you all!
Sweet Paige. I am praying like crazy for your stamina and healing for John and Kimbell. I know how hard it is to split your time. Love you all and hang in there! God will get you through.