6.29.2012

Overwhelmed

Two reasons for the title of this post...


First, the golf outing for Becca this past Sunday at Shaker Run Golf Club was terrific!  Beautiful weather, a great turnout, and so much fun... how could we ask for more?  A mountain of thanks to all of the wonderful people and companies who provided prizes for the auction, contributed their own time to work at the event in various capacities, paid registration fees to golf or to attend the dinner, and even donated extra funds to aid our family.  We are, yet again, so touched by the generosity of so many individuals, and amazed at how blessed we are to have such a fabulous support system.  Thank you!

Second, we met with the bone marrow doctor (Dr. Grimley) on Monday to sign "consents" and have some of our questions about Becca's upcoming bone marrow transplant process answered.  Honestly, I didn't have too many questions ready, because our care coordinator had answered most of my questions last week.  As Dr. Grimley started giving us some of the specifics of what is going to happen in mid-July, though, I suddenly found it hard to breathe.  My baby, who is not even six years old yet, is going to be put on loads of meds, some of which she might be on for a year, some maybe for life.  She will get extremely sick pretty quickly, and this is intentional and expected.  This is to kill her marrow.  Unfortunately, killing her marrow also takes away her body's immune system, so she can contract a viral infection, bacterial infection, or fungal infection much more easily.  Becca will be given rabbit or horse serum to prevent GVHD (graft versus host disease - when the donor's marrow attacks the "host's" body), which will lower her immunity even more.  She will have fevers.  The doctors will do scopes (of both ends) to find the source of the fevers.  She may end up on dialysis, as many kids do (some temporarily, and some longer term) and her kidneys are already struggling.  She will be admitted for neutropenia or fevers after she goes home post-BMT.  She could end up in the ICU again for a variety of reasons.  She will be given an anti-seizure medication.  An endocrinologist will be following Becca closely because she will develop hormone-related issues.  She will have mucositis which will make it painful to eat and drink, so she will probably end up with a feeding tube in her nose.  She might be able to return to school six months post-transplant, but wait... that's in the middle of cold/flu season... no, maybe after spring break.  When is she going to have the chance to develop relationships with friends and have a "normal" life?!  Many more details were shared, and rather than scare you with the nitty gritty, let's just leave it at the fact that we are overwhelmed...  

On a positive note, our family friend Katie Dickert is a senior at Mt. Notre Dame High School (my alma mater, by the way). As seniors, the girls were asked to take on a leadership role in their community. To honor Becca, Katie decided to make pillowcases for the children and teens at Cincinnati Children’s Hospital Medical Center (CCHMC). Her project is called Pillows of Hope, and her goal is to see that each child and teen receives a pillowcase of his/her own to bring comfort and hope. As she collects them, Katie will take them down to CCHMC to distribute. She is in the process of getting permission for Becca to be able to pass some out to the children in her area. Katie is asking for people to sew and donate homemade pillowcases, donate 100% cotton fabric, or be a sponsor by donating $7.00 per pillowcase.  You can find more information at www.facebook.com/pillowsofhope. Please think about helping! You can make a difference and brighten a child’s day. The more people that go to her page and “like” it then add it to their page, the better chance she has of reaching others to help her.   


Please continue the prayers for our brave little Becca, but I also humbly request that you add in some prayers of strength for the rest of our family... we can really use them.
TK

1 comment:

Ellen Mason said...

Oh my goodness...I'm overwhelmed just reading your post. Can't imagine how overwhelmed you guys must be. I will pray that Becca's BMT goes as smoothly as possible and that you, Ethan, and Lily are able to remain positive despite the loads of stress that is being dumped on you.