Bone Marrow Biopsy

I talked to Dr. Libby this morning. He wants Brooke to have a bone marrow biopsy to see if the marrow will give him any clues as to what's going on. The bone marrow is where neutrophil comes from and if the marrow is damaged in any way, neutrophil levels can be greatly reduced. I know when you think "bone marrow" the first word that typically comes to mind is leukemia. Dr. Libby has checked for this as well as lymphoma, which is a form of blood cancer common with people that have Common Variable Immune Deficiency (CVID) like Brooke. He does not feel she has cancer. He told me he read that people with CVID are suspectible to Neutropenia. While the biopsy isn't what we wanted Brooke to have to endure, it's something we assumed would have to be done sooner or later. Dr. Libby said he will work at getting this set up and that it will most likley be week after next. She will be completely sedated for this - thank goodness! I've heard this is very painful! Please pray for endurance for her and for comfort before/during/after the procedure.

We talked in great length about what we can do in the future, what we should do, etc. He doesn't want to give the shots I've talked about in previous blogs since she is currently not experiencing any recurring infections. I told him she may not be due to being home-bound, but he doesn't think that's the case. He told me she's still around plenty of germs. He said as odd as it sounds, we need to get her back out in the public to see how she does. If she develops an infection - we treat it. Sounds awfully scary to me!! I'm going to keep things like they currently are until after the next procedure to ensure I keep her healthy for it. We'll play "the future" by ear!

I learned that the spleen can go down in size after it's been enlarged, which is something I've been wondering about. That was comforting! Her liver has gone back to normal so maybe the spleen will too! I still can't help but think this is all salmonella-related and maybe after time...things can get back to better, if not normal. They say salmonella can linger in the body for over a year. Give us strength!! I hate it and hate even more what it's done to my daughter!

I am completely honest when I say that "Brooke has never been text book on ANYTHING." Mike and I are used to that. We have never expect an answer right away, if at all. This is just how Brooke is. Bless her! I told Dr. Libby how much we appreciated him helping her and thanked him for being so kind to us. That's not always the case...and is even sadder when people like Brooke have so few choices in their health care. Many times, people are afraid of them. What a loss!! I know Brooke is a challenge, but she's also a person who deserves the very best that life has to offer.

Lastly and most importantly, I told Doctor Libby we are going to see Mickey Mouse on June 6th and asked if he had any problem with that. He laughed and said it should be ok. Brooke "TOLD" us we were going about a week before we knew anything was wrong with her. She communicated her wants very plainly! So preparations for the Disneyworld trip have helped keep me focused on something other than worry. I am planning the most incredible trip for her. She deserves it! We have the countdown chain in her bedroom color-coded by month with Mickey's ears at the tail end of it. It was 119 links long when I made it. Yep, I hand cut and taped all 119 links! Brooke's like her mom in that she does well with visual aids. She doesn't understand what 3 months from today means, but a chain with links helps her see amounts of time. She still asks to get her suitcase down at least once a week. Ha!

Please pray for a positive outcome on the biopsy. Ask God to be there with Brooke holding her and making her feel safe. Pray for minimal pain and for skilled hands to work on her. And if you don't think me too selfish to ask this...pray for the salmonella and all of its awful effects to vanish once and for all. For white blood levels to be restored to normal counts. And most importantly, for health and strength for this precious child.

In His name I pray -
AMEN!