update...finally :)

Been a little busy at the Koeman's. I worked 4 days in a row. For all of you that is "normal" for me that is ALOT!! By Monday night I told Steve I could just fall asleep. He laughed at me, so I laughed too :) I am so blessed to have an awesome husband and mom that take over and keep the wheels turning. The girls had a fun weekend and went to a play with grandpa and grandma Koeman, and then their cousins baptism on Sunday (with food, swimming and mini golf)!
Brooke just hangs out at home as the world goes on. She seems to like it more outside and likes stroller rides with Macy. Her cold is staus quo. Her runny nose seems less, her mornings are not good. She's just fussy, gags alot, not herself. But by afternoon she does better. We haven't been able to get all of her feedings in her without her getting sick, so we just do the best we can. She has so much going on that we don't really know what to change and make it better. We still go to clinic 2 days a week and enjoy the time at home. We hope to get clinic days down to 1 day a week but that may just be a dream. Summer is going by so fast we just want to enjoy every day of it. She won't have any major lab tests for another 4 weeks. Patience :) God will provide for Miss Brooke as He has always.

brief update

Thanks for the prayers!! Brooke had no fever at all this morning. 96.0 YEAH!! She had a rough morning though, wasn't happy, and either slept or cried. Feedings went awful, she gagged and puked through them. Then around 2pm, she turned the corner. She started smiling, doing "SOOOO BIG" and "Bring it on". She has a feeding going now and it's almost done. (no vomiting yet :) Thank you all! I can see her get better as the day goes on. Thanks for caring and praying!!!

Another day......

Steve, Leah and Brooke when to clinic today. It was fun for Leah to get to see what happens at clinic. Our goal is to get each of the girls there when we have short days. Steve also "buttered" up the doctors by bringing blueberries. (thanks mom, dad and Brent :) We'd like to get down to going to clinic once a week instead of twice. No word on that yet. Monday they did a viral panel on Brooke and found rhino virus (big surprise, not!) I guess June 30 she was virus free! Because we were inpatient and Brooke had tons of other stuff going on I never asked for those results and didn't get to do our JAZZ HANDS dance. So she was virus free for a few weeks. Now we are back at it. Tonight she was just tired and her temp is 99.6. If that was any of the other girls I wouldn't worry, but with Brooke that puts my stomach in knots. I pray it doesn't go higher. If it goes to 101 we have to go in the hospital. Please pray it goes down and it's just an over protective mom worrying. Her feedings are going.... we have increased the amount of formula and she doesn't like it, but she's tolerating it. Next week we have an appointment with therapy (you may remember what Steve and I think of therapy). We said we'd go for a consult and then just let her sisters take over. They work her out daily at home. We also have consults with Early On through the County to get her developmentally up to her age. They will come to the house which will be nice.

Brooke has her own fridge. How lucky is she :) I couldn't handle the meds and clutter. These are only IV meds. But it free's up some space.

I also want to thank EVERYONE for all the wonderful meals! We still have a few in our freezer and I don't know where we would be with out all your kindness over the last year. If I could ask you.............if you have made us a meal or if you have a recipe you love please email me the recipe. The girls are going to put together a cookbook! Good summer project. sskoeman@yahoo.com Thank you for your help. It's so awesome to see the wonderful caring community we live in. God is good and is caring for our every need with all of you helping. Thanks again!!!

This is a video of Miss Brooke Rockin in her chair.

SHHHHHH don't tell!

We went camping! We had asked in May/June if we could go camping and the answer was Yes and then No. At that time they thought Brooke was going to have another transplant. But now that all is on hold and we are "waiting" we thought, let's go have fun and make memories. AND, let's not ask, just in case the answer is no. After being there 2 nights Macy got a fever, it could be because she eats EVERYTHING, stones, dirt, flip flops........ it could be teething........ it could be a sign we weren't suppose to be camping in the first place :) Anyway, friends were coming out and stayed with the 3 big girls 2 nights and then Steve and I returned on Saturday. So it was a confusing week, but we had fun. The girls got to do everything you do when camping, pop for breakfast, candy ALL the time, golf cart rides, swim, and on and on. Thank you Balders and Hulst's for a great time and putting up with us. I hope you have all recovered from the Koeman Chaos. I can't wait to go again!!!
For the update, Macy is better. Not sure what was wrong with her. My niece Mya came home from the hospital Tuesday and they got to finish out their vacation. I got to talk to her on the phone and she was adorable!! Telling me about the wagon rides she went for :) What a tough little lady! And Brooke......she seems to be getting stronger. She actually pulls hair out of the girls heads (ouch), she still hams it up and screams to get her way. The MD did decrease her steroids again this week YEAH!!! Our prayer is we can get her off steroids and the bone marrow will take over. We watch to see if her skin gets red and dry and if she has more diarrhea. I hope not!! Next week clinic is again Monday and Thursday. We'll keep ya posted! I pray everyone is having a great summer.


Building a fire

Our "ride"

No tents for the Koemans :)

Swimming




Jump Jump Jump

Bring it on!

This is a video of Brooke. Her new thing is "Bring it on!" She obviously is aware of all she's been through and that she has the strength of the Lord on her side. So here she is, showing off :)

What a fun weekend. Steve and I got a night off. Friday night we went with friends to a cottage to hang out. The girls stayed with my parents and a friend to help with all Brooke's care. We had a great time. Got to relax and unwind, which is very hard to do when you're use to caring for a "high maintenance" child. (I was going to write a "sick" child but I still don't see Brooke as "sick"). The girls had a RIOT! I was kind of jealous to hear all their fun. Golf cart races, swimming/jumping into the pond, shot gun practice (scary), water balloon fights, fishing, etc etc etc. The girls were exhausted! I just hope grandpa and grandma are ok :) Brooke did great! She might not need Steve and I as much as we think. After 24 hours away I was ready to get back and see my ladies. Sunday was Meg's 7th birthday. WOW, time is flying.


Brooke is doing well. No major changes as of yet. Everything is just a waiting game. I realize how blessed we are and I am so happy and excited God chose us to have these 5 wonderful girls. Steve and I don't have much time to sit and do "nothing" or "me time" people call it, and I realize I don't want or need "me time." This life isn't about ME, it's about Him! How we spend our time reflects that. Obviously this last year our time has been spent trying to keep our family physically, emotionally and spiritually healthy. And I can say it has brought me more joy than ever. God puts you where you need to be and if you are doing it for the right reasons it's not a chore but a joy to live life for Him.


Yesterday my brother called and said Mya, my 3 year old niece, was in the hospital with an infection. It's a little crazy being on the other side of that phone call. My heart ached for them knowing of the blood draws, the waiting, the IV's, the waiting :) And now being on the other side, I wanted to help, anything. They were up north so we prayed. Hopefully she will get to come home on Tuesday and they can finish their vacation. So we keep praying. We are so aware prayer is what carries us all through and gives us inner peace and endurance to keep going.



Rom 15:13: May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

Play time

I was watching my children play today and started to laugh. Some things in our life have just become so normal that when I take a step back I realize other children don't do this. The girls were playing. Meg was the mom. Leah and Ashley were sick and getting IV's. The "mom" was hooking up IV's and giving meds. The girls had the tubes taped to their arms, gauze taped to their upper arms to catch the saline/water that came out of their syringes. This all seemed fine and normal to them (which is good because it is our "normal")

Steve and Brooke went to clinic today. All was well. She is getting over her infection and being the normal little Brooke. Next week is checking T cells again and we hope they are still going up. With Brooke in the hospital last week I didn't work, so this week I've been trying to make up for lost time. In the mean time Steve has been doing more tube feedings, IV's and meds. I take for granted that I am a nurse. Many of these things just come somewhat naturally because it's what I've done for 13 years. What comes naturally to Steve is driving tractors and combines. So I have kind of put alot on his shoulders making him become a nurse. He does such a great job with Brooke and all her care. I just PRAY he doesn't ask me to drive a big ole tractor! It WILL NOT be pretty!

The Lord Himself goes before you and will be with you: He will never leave you or forsake you.

Deuteronomy 31:8

Macy riding the dog named Macy :)

Night, night Brookie!

Home Sweet Home!

We are once again where we belong.....at home! Brooke got discharged this morning. She had a rough night last night and she SCREAMED for an hour. We still don't know why, but I am SOOOO happy we didn't have to stay. I told the doctor I have lots of kids that scream so it's ok :) She is super happy at home. She's been all smiles since we arrived, so have the other girls. I did the usual vacuum, bleach the counters and floors and now it feels clean (as clean as it can be with 5 kids.) Now we get back into our routine. The "Koeman" normal. Brooke will need IV antibiotics til Friday. The doctor also said he's going to s l o w l y start to decrease her IV meds and see what she does. Either Meg's bone marrow will take over or it won't. We'll see. Nothing happens quickly with Brooke so we'll just be patient and enjoy every minute. The doctor told her in the hospital "Brooke your 2nd year of life will be much better than your 1st." Brooke laughed at him. I hope that was a good laugh :) Enjoy the beautiful weather with your families.

Happy 4th of July!!

So far so good! Brooke is progressing well and back to her old self. Smiley and in charge. She DOES NOT like the staff wearing masks around her so she tries to take them off. Usually after the 3rd unsuccessful try to take off their mask she cries and cries and cries! She's kind of use to getting her way. Her infection has beenS identified and is being treated. Her current cultures are all negative which means the antibiotics are working. She is tolerating her feedings (kind of) and we hope to be heading home Monday or Tuesday. She will still need IV antibiotics for another week + but we can do that at home.
T cells, as I wrote before approx 79% of her T cells (immune system) are Megans. That is a good thing. Dr. Mageed had said in June he was planning on another transplant. So we were gearing up for it. Then Brooke had rhinovirus again so as we were waiting for this to go away they consulted with other MD's around the U.S. and Germany. The other MD's said to wait it out a little longer and had other tests to run. The other tests get a little complicated but short version skin biopsies have been sent to California. My other point is because Brooke had the virus we waited, which is good because her T cells are coming around. Maybe if we wait long enough another transplant won't be needed. Also depending on what these other tests show Brooke may not tolerate chemo very well. If we didn't take our time we wouldn't know that. Praise God!!! He has once again shown us it's HIS timing not ours.
We hope you all have a wonderful Holiday and spend it with friends and family.

PICTURES!

Hangin at the "spa"




Cake anyone? Macy ate 3 pieces.

The girls made the cakes!

Great Grandma make beautiful quilts.

At the park. WOW are we blessed.

Brief update...so far she is doing well, happier, more active. She does have high blood pressure but otherwise so far so good. We also got some more labs back. Her cells are still being taken over by Megan's. Up to 79%. That is great! I wish I could tell you more but I don't know anything else :) This whole bone marrow process is PAINFULLY S L O W!!! (painful for me the impatient one, not Brooke :) But at least it is still working.

He tends his flock like a shepherd: He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young. Isaiah 40:1

THANK YOU JESUS!!!

Day 2 at Spectrum.

Brooke has had 2 cultures come back positive for infection in her broviacs (the IV lines in her chest). She is on IV antibiotics to clear those up. They will keep checking the lines and once they are clear we can go home and finish antibiotics there. If they don't clear they will have to remove the broviacs and we could be there a couple weeks. (lets hope not). Her spinal tap has been clear as has another blood culture she had. It was strange last night not getting Brooke's feeding ready and getting her meds set up. I thought I needed a break but this was not what I was thinking. It's also amazing how we can so easily go into hospital mode again. We just switch gears and carry on.
It's a cool, damp day outside so at least Brooke didn't miss any fun outside play with her sisters and we are all headed up to the spa to play in a little while. When Brooke came home from the hospital May 11, she was so scared with the craziness of our house. Now she is back up there and is bored! Steve and I even danced for her last night and she just gave us an annoying look (we get that alot). :) So hopefully she'll get a few good laughs this afternoon at her sisters.