Thank You!

What a weekend! It was great to have the girls up at the "spa" with us but on Sunday all of Brooke's numbers went lower. Steve and I were not prepared for that. We had been so hopeful with everything climbing that when things went backwards we lost our hope. We want to thank all of you for praying us through. Wonderful friends came to our aide with visits, talks, emails, prayers and God's truth that showed us He is in control. As many of you know my "water works" started on Sunday and I don't think stopped til today. The feeling of helplessness was overwhelming. Why does Brooke have to go through this? Why to the other girls have to endure this? Why do Steve and I have to watch our family go through this? When will it end? We still have no answers, but we are blessed. Leah says, "it's ok, this is our life and it's what we do." Megan says, if anyone needs bone marrow she has more. Our girls are amazing!! Ashley got sick with some respiratory illness but is now on antibiotics and nose spray to help her along. Our HOPE is back. It seems like the devil works when we are weakest but he doesn't know who we are surrounded with. Thanks for praying us through our low time. We pray Brooke's numbers come back up. He will show us His way! We can't worry about tomorrow. We will let you know when we get her next numbers.

NUMBERS NUMBERS NUMBERS

Numbers from Left to right.
White blood cell, hemoglobin, platelets, ANC

Every week it takes longer to get Brooke's % back. This week it was 6%. Steve and I were VERY disappointed! Dr. Mageed said, "no problem." He said it's like the stock market, sometimes it's up, sometimes it's down. Steve and I just don't want it to crash!!! They will check her T cells in a couple weeks. Her other numbers look really good. You can see on the pictures how low she started and how high they are now. (I thought the nurses out there might like to see numbers :) Brooke is also growing hair back. That has to be a good sign, right?

The girls, my mom and I went to a play last night at Zeeland Christian. It was so cute! The girls had fun and my friend Missi was in charge of it. She did so great! I am so proud of her!! Grandpa Blueberry babysat Macy (that means they ate icecream and she got spoiled :) We are now at the Renucci house hanging out. Playing games, watching movies, eating candy! Steve and I can switch out with Brooke and the other girls. Steve's parents come up this afternoon and we'll get to take the girls out for a while. It's nice to all be so close so we can at least eat together. Because Brooke has been vomiting and not tolerating feedings the doctor doesn't want visitors yet, so the girls haven't gotten to see her.

Please pray that Brooke's numbers will continue to climb. Pray she starts to tolerate her feedings again and will start to eat. Pray we keep at sickness away. And I'm being a bit bold here, pray she is home by mid April. Thank you all!!!

Test results

We have been waiting for the genetic tests result which would confirm the type of syndrome Brooke has. Well it came back negative. So the "syndrome" we thought she had she doesn't. She still has SCIDS and was born with out an immune system, but we may never know what type of "SCIDS" it is. They had saved some of her blood from before transplant and they are trying to find a lab that will work with them and "think out of the box" to identify what Brooke's actual "syndrome" is. We call it the "Brookie syndrome." Being a nurse I like to have a diagnosis and then a treatment plan. So this was a little hard to swallow, but one of Steve's friends said, "who cares, what they did is working, that's all that matters." In the end, that is so true. Brooke's liver enzymes and white blood count are normal. We haven't seen normal in FOREVER!!! She's eating some and getting stronger. YEAH!! They are also still turning her tube feedings up and decreasing her TPN.
Our house is being "prepared" for her to come home. Brent, Mark, Scott, Jon and my dad are "preparing" our home to be mold free. That brings some fear to Steve and I because we have given them control! (Steve and I like control :) But we have about all we can handle with our lives right now. We have the most confidence in them and we know they will do what's best for Brookie. Thanks guys!! You are the best!!!

12 #

This is what a 12# Brookie looks like! Yeah Brookie! We have been able to feed her some baby food. She is not a fan of rice cereal but likes the squash. I've also found that she likes ice cream. Go figure!! She doesn't eat much, like 4-6 baby spoons. She has been extremely snotty today so they did a nasal swab for virus' and a chest xray. Many times the snot comes from irritation from the NJ tube in her nose. We pray she's not getting sick. Her numbers are looking good! White count is coming up, hemoglobin is stable. Still heading the right direction. I have started thinking of what we need to do to get her home. So I have carpet cleaners coming. I like to be prepared so this gives me purpose. No one has talked about her coming home, it's just me mentally preparing.

We have a nurse that was gone for a couple weeks. She said she can see that Brooke has grown and changed in 2 weeks. She said she could picture her at 2 years old and growing. I also had 2 different people tell me about dreams of theirs that Brooke was 6 years old! I took that as God telling me to get over my own fears! Brooke will grow up! As parents we think positive because that is what we have to hang onto, it's gets us through everyday. But there is always that doubt in the back of our heads and hearts! God has shown us, it is not up to us. He is in control and whatever path we are lead down He will show us through! So everyday is a gift: for Brooke, for all the girls and for Steve and I to love them and hug them! Enjoy the day and soak it all in!!

A day late!

The results did not come in yesterday, OF COURSE!! That's what I get for getting my hopes up. Anyway, Brooke currently has 10% of Megan's cells. That is up from 4% last week! YEAH!! The MD said the engraftment may take longer than most because Brooke didn't get the normal chemo. Also her T cells were up to 200. That is up from 90 last week. Everything is heading in the right direction. Her tube feedings are being turned up slowly and her TPN is being turned down. Our goals: To get her on total tube feedings OR bottle/baby food (that might just be a dream right now :), she also needs to have the vomiting and diarrhea to stop, (it is slowing down) and she needs 500 "mature" T cells to be able to fight off infection. When all that happens we are closer to going home. Thanks for the prayers! We will get you more info, and pictures soon.

Two days of work done! Work is slow so I guess that isn't a bad way to start. It was nice to see all the people I work with and the girls LOVED seeing Miss Tricia, their babysitter. My mom said everything went ok at the hospital and the nurses said the same. (They may be sick of me calling) :) I got up Monday and Tuesday morning and we did our "normal" routine, however what use to be normal, isn't normal anymore. Is that confusing or what? But in the end it all worked out. Steve is at the "spa" now and I will head up tomorrow. We miss Brooke like crazy but when I talked to her on the computer tonight she laughed at me. Nothing has really changed the last 3 days. Her liver enzymes are getting better YEAH!!! And she is on meds to help with her nausea and vomiting, so they increased her feedings a little (very little). The next report is hopefully Thursday, that will tell us if the bone marrow is working. Enjoy the wonderful weather!

Big Weekend

Brooke in her exersaucer "reading."

Today Brooke ate some cereal! Not much, like 2 tablespoons, but considering she hasn't eaten in 6+ weeks that was a good thing. She has tube feedings going very slowly and she does get the dry heaves. So she is on medication to help with the nausea. She is also still on the TPN, until her tube feedings are tolerated better. Her blood work this week showed 4% of her cells are Megan's. That is a good start. Because they haven't done a transplant this way before no one is sure what to expect. Other studies have shown it can take 3 weeks or it can take 3 months. Her tests also show that there has been a slight increase in T cells (the cells that fight infection). That is a good thing. So we feel we have a baseline and well see what next week's numbers say.

Miss Ashley called me tonight and said, "hi mommy my training wheels are gone!" What, she learned how to ride a 2 wheel bike without me!!! She is so super excited. Steve took off her training wheels and away she went. Good job dad! They emailed me pictures and a video, so Opal (our nurse) and I watched her. So fun!!