Emotional Few Days

So much has happened the past few days. It has been hard and sad. One of our good friends from church Toby lost his parents unexpectedly this past weekend. Our other dear friends Russell and Becca lost Becca's dad on Sunday. He was snowmobiling and died in an avalanche. Becca is pregnant with their first child. My heart is aching for these friends and their loss. I can't imagine if something happened to James or my parents. Please keep them in your prayers.

Another DBA family got some scary news this Monday too. Please read their story below.

"Hi everyone. Unfortunately I don't have good news today. I brought Maggie to clinic this morning for her labs and her retic count was still unchanged. I spoke with Dr. Fryberger for awhile and she said that Maggie is deemed a steroid failure and we start to wean her off tomorrow..in a week she will be off the steroids. This was obviously not the news any of us were hoping for.

Dr. F said the next step is that she is going to contact a Dr. from the West Coast who specializes in DBA and also the NY docs (she tried to do this today but they were closed for the holiday) and also transplant docs and find out their recommendation for Maggie. She told me today to prepare myself for the fact that Maggie WILL need a bone marrow transplant, it's just a matter of when. She also told me to prepare that they may come back and say they want her to go to transplant quickly. We are just praying that we can wait awhile..I know when we went to NY they said they would prefer to wait until age 3ish if they could..so I am really hoping for that or at least until after her second birthday.

The other issue we need to work on and get under control now is her iron...she would definitely not be even considered for transplant until we got that down a little bit. As of today her ferritin was over 3,000 (a normal ferritin count is about 20). The doctor here is going to talk to the other doctors about how we are going to treat this. There is the oral medication, ex-jade, but they usually can't put patients on it until they are 2 or 3. They are going to try to get it approved for Maggie (as long as it would be safe)..if that is not an option yet then she will need to start desferal. This is the pump option..we would need to put a needle under her skin 5 nights a week and she would be hooked up to a pump at night.

The other thing we talked about today is getting her back on a transfusion schedule and transfusing her at higher numbers. Her hemoglobin was a 9.8 today but they may still have her come in for blood at the end of the week. They said that her body could absorb more iron through her gut when her counts are lower because the body is tricked into thinking it needs more iron when the blood count is lower. So hopefully by keeping her hemoglobin higher she would absorb less iron.

I am feeling very nervous, scared and sad today. I was so praying these steroids would work so her body could get a break..but it was not meant to be that way. I know that my girl is strong and I know she can get through anything..I am trying so hard to be positive about everything.

I should be getting a call from our doctor here tomorrow or Wednesday after she has touched base with the doctors from other states..I will update as soon as I know anything. I know I don't need to ask but please keep us in your prayers. Thanks everyone..love you all."

I was so scared after reading this letter. I never dreamed a transplant could be needed so soon for a DBA child. James and I don't have a sibling match for James Thomas right now. There is so much to learn and understand. James and I had our Bone Marrow Transplant HLA testing and consult yesterday. I LOVED the doctor we met with but is is all so intense. I will post about that appointment later.

Again please pray for our dear friends and this sweet family. My heart is heavy for them all.
Today is a big birthday day for us!!! A special Happy Birthday to Grandma Tassie, Melissa Hollon, and Jim Colquitt! I hope you each have a wonderful day.




PS Today is Ash Wednesday and the start of Lent. No more SONIC drinks for me!