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!!

The Brookie Mobile

The girls derby race was tonight at East Saugatuck. Leah named her car the Brookie mobile and had decals of Devos Childrens hospital and pictures of Brooke on it. She won 1st in her class, 1st over all and best of show, (best of show was with a little help from our friend Emily). Leah is on cloud nine. 3 trophies to show her sister some day. What a great big sister to bring Brooke with her on this experience of hers.
Leah, Abby and Lauren accepting their trophies.

The winning car and trophies!

Brooke had a good day. Her liver enzymes are still high so they decided to put down another feeding tube and try feeding her again. Then they can get her off the TPN which they feel might be irritating her liver. So far tonight she is doing ok. She has not been a fan of any feedings in the past so we pray that will change. Hopefully one step closer to going home. We haven't heard yet if the bone marrow graft is taking. But she is so happy and smiling, that has to be a good sign. Steve's parents were up there tonight for awhile and my parents will be up tomorrow. Next week I go back to work a couple days a week. So many changes again for the Koeman's. My mom will stay with Brooke when I am at work. Where would we be without our parents? God always see's us through and now is no different. We have peace! Thank you all.

Almost a week!

Tomorrow is one week since Brooke's bone marrow transplant. No news yet as to how things are taking. They drew the blood but it'll take a few days + to get the results back. Hospital time. Brooke is doing well. Her liver enzymes came down today, not to normal but a step in the right direction. Yeah! She has a wonderful yellow hue to her :) That's her way of getting a tan while being inside. Steve had a cold last week and he's back to normal, so it's my turn. We like to share things at our house. Oh well. Steve is up at the "spa" now and I'm home. Grandpa's and grandma's are going to help us get through. I'm going to take the extra time to be with the girls. Play games and eat candy. (I don't know where they get their sweet tooth from.) And maybe do a touch of cleaning. Kind of an uneventful few days, but that is a good thing.

I read somethings this morning that really stood out and struck me. I thought I would share. (If it's too lengthy just skip it, I understand :)
This devotion was talking about prayer and does it matter if just one person prays or many. God's outcome will be the same, the plan is already laid out. Their response......
"By asking people to join a prayer effort, we bring God joy as He sees His children care for each other; we demonstrate to the world that we are knit together in love and have concern for those in our Christian family we have never even met (or people we know); we witness to others who are without faith or weak in faith as the widening prayer circle encompasses those in different phases of spiritual growth (or have none). We follow God’s leading to influence as many people as possible through our trials by asking them to join us and pray, and then by keeping everyone informed of everything God is doing in answer to that prayer. Our faith is built, God's glory is increased. By praying, others become emotionally invested in the situation and share the goodness of God to even more people because they have a tangible story to communicate."

How one little girl can bring so many people together is baffling! We want you to know how much you all matter to us and how by praying for Brooke you are witnessing to many others. Brooke's situation is difficult but it's no more difficult than all the people with out jobs right now, or other health problems, or just plain overwhelmed with life. Everyone has a "situation" which has made me realize how important prayer is.
Ok, I'm done now :) ........ The MD was just here. Today is the first day her bilirubin hasn't gone up. A short version, we need to pray her liver is restored to normal functioning levels. She will have an ultrasound and further labs done to assess this more. The doctor is hopeful things are going in the right direction. Megan is doing great! I'd say she's 95%. Still a little tender but that is all. Ashley is a little jealous about life in general, so we are trying to spend a little extra time with her, and Leah is the best 10 year old in the world!! Macy just wants to eat :) That's a recap of the Koeman's. Thanks again for praying for us. You are also in our prayers!!

Day 3

All is well thus far! Megan went back to school today. She did GREAT!! Yesterday afternoon she said it didn't hurt it just "felt funny." Later in the day Ashley got mad at her and slapped her back, that hurt!! So Ashley knows NOT to do that (not sure she'll listen). Brooke is also doing well. She had a rough night because she got IVIG and her little body doesn't like that. Which we've known, it gives her headaches and she SCREAMS! So next week when they give it I have requested it be given during the day, I prefer screaming at 2pm not 2am.

Because of the transplant they started doing physical therapy with Brooke. Which as a mother has been comical. They don't want her to fall behind and they have wonderful intentions. Brooke has her own agenda. She makes noises and plays with her toys etc until they come in. They she stares at them and gives them dirty looks. When they leave she smiles and goes about her business. I think we have created a spoiled little girl!

Next week they will do a blood test that will tell us if engraftment has started. Tests are constantly coming back , that had been sent out 1-2 months ago. More pieces to Brooke's puzzle are coming together. It seems that currently her liver enzymes are still high and it may not just be medication related. She's had medication changes and those will be watched closely. We pray her liver will heal and be restored. Please pray for continued patience! Steve has a cold now so he can't see Brooke. That is hard!! The girls pray every night that Brooke can come home and we can be "a family." They miss her like crazy!! Thanks for all your help and prayers.

The Big Day!

Where do I start!! We found out Tuesday Megan had to be at the hospital at 6:30a. For those of you that know the Koemans, that is EARLY!! We are not morning people. So Ashley and Macy slept at my brother and sister in laws house and the rest of us stayed at the hospital. Spectrum has the Renucci house attached to the hospital, so the girls got to stay in a "hotel" sort of. Megan got to walk to the out patient surgery in her PJ's. Her big sister took the day off school to support her and help. I am so proud of both of them!! Megan never wiped the smile off her face. And Leah only left her side when she was told to. What a blessing to see as a parent. Megan went to sleep happy and woke up happy. She looked a little pale but that was because the MD took 217ml of bone marrow. She might be sore tomorrow, but we'll wait and see. After Megan was done and recovered we went to Brooke's room and awaited her turn. We ate lunch, Megan got presents from the hospital and the girls went to see some animals that were up here for a visit. Once the bone marrow came back from the blood bank, they infused it into Brooke. It took about an hour. The MD sat and watched Brooke and her vitals. I got to ask the doctor how rare is Brooke's condition. He said since the 1960's he estimates there have been approximately 200 cases of this. He is thinking he will write up her case for a journal because of the way it presented itself and it's rarity. Obviously we need the outcome 1st, which will be great. I can't wait to read that article. Today was a day of firsts. Megan's 1st time having surgery. Spectrum's first time with this diagnosis and first time doing a bone marrow transplant without doing chemo/conditioning first, and the nurses first time doing a transplant (she use to work nights), and of course, Brooke's first time having a bone marrow transplant (and hopefully last).

Megan waiting!! Megan recovering with Leah

Grandma's, grandpa and Megan.

I'm not sure what to say! Spectrum seems to have this down to a science. Everything flowed so smoothly, all questions were answered, Meg had the best care and was such a great patient. We are so blessed. Thanks for the wonderful prayer service on Tuesday night. I heard such great things about it and about everyone there. I even got a text message just before it started telling me about it :) We feel all the prayers and love. There is no way things would have gone so smoothly without all of you!! You and your faith are all the biggest part of our girl's healing and bravery. We are all learning the value of putting our own self aside, believing in the Almighty and caring for others. THANK YOU, THANK YOU, THANK YOU!! Bone marrow engraftment usually take 2 weeks to start to see. So we will keep you all posted with Brooke's progress and Megan's recovery!

Megan, her dad and her bone marrow!

Megan and Brookie.

(There are MANY more pictures! Megan and Leah will have them in a book to show you.)

The Big Week

Megan getting her x ray.

Megan getting her EKG. Look at that smile!!!

The plan for this week. Monday: Steve and I meet with the bone marrow MD and their team to review the transplant and harvest process. Tuesday: Brooke goes in for an additional Broviac, so she will have 2 of them. Wednesday: Megan comes in for outpatient surgery to have her bone marrow harvested.

Not sure yet when Brooke gets the bone marrow if it's Wednesday or Thursday. The bone marrow is given to Brooke through her Broviac, just like her other IV's.

Obviously this plan has changed a few times. It was originally set for Monday but due to some blood typing issues it has been moved back. Leah, Ashley and Macy have colds right now so besides bleaching our children clean, Megan is off to Grandma's to try and stay healthy. Right now they are all walking around with masks on. We have lost it, our kids keep laughing at us. Steve and I are driving ourselves crazy thinking about germs! This is so not us :) Please pray this week that Megan stays healthy and that she is not too scared. So far she has been ok with all this. Pray for Brooke to stay strong and the other girls get over their colds so they can be a part of all this amazing journey. We have learned so much as a family this far and I feel this is just the beginning. God is so good and faithful!

There will be a prayer service at East Saugatuck Church Tuesday at 8pm. We believe so strongly in the power of prayer and we thank Scott for arranging this. We are so blessed to have all of you in our lives. If you can't make it that is ok. God hears prayers from everywhere.

Thank you 4th grade class at Pine Ridge for all the food, gas cards and cards. What a blessing you are to all of us!!