Friday, July 17, 2009


I struggle trying to keep people up to date and I am slowing realizing that if I pick certain people to update within a group it is easier. I don't know how much you know. I see a lot of people saying things that are mostly true, but somewhat misunderstood. I will try my best to kind of bring you up to date on where we are. On July 4 about 10pm Mikayla complained her back hurt. We went to the ER around midnight to get it looked at. At the time the claimed it was a UTI. Later when reviewed they were incorrect. Sunday she slept all day, but was no longer in pain. We thought nothing of it, because she was up until 5am at the ER. Monday was more of the same. She was kind of warm, but overall she seemed fine. I left for Joplin mid morning to pay property taxes and to renew the plates. During that time she still had trouble staying awake. When we arrived home I carried her inside and took her shoes off. Her feet were bruised, but they were not the night before. I removed all her clothes and only seen a few very very small bruises that looked kind of like freckles. Alarmed by the small bruises and lack of energy I assumed she had got into some kind of poison. The wife took her to the pediatrician and he began to cry after giving her a look and told us it looked like she had leukemia. With in an hour we had a blood test and then we were transferred here to Children Mercy in KC. By the time it was morning on Tuesday she had swelled enough to gain seven pounds. Seven pounds of what I don't know. Tuesday afternoon we had a meeting with the doctor and all the results from bone marrow test had came back. She was diagnosed AML. AML is a leukemia that usually affects adults not children and carries a worse prognosis as well as an extremely rough schedule of chemo. Within 10 days she will recieve 25 rounds of the mojo. After which her ability to fight infection will be zero. This is the hold your breath stage and hope and pray for the best. The other kids are taking it pretty good. We have told them what to expect and they seem to understand most of it. I have had a chance to catch my mind up to what has happened so far. Mikayla's diagnosis of AML M2 carries with it a pretty good shot at survival. I am not interested too much in stats, but from what I read it is the better of the M markers to have, not the best but maybe a good second place. Today the doctor explained things like this. In the leukemia cells are chromosomes. researchers look at these chromosomes to determine the risk of relapse of the cancer. Because of the tipp flip in the chromosome Mikayla is at a high risk for the relapse of leukemia. Because she is at a high risk the doctor said we had to do a bone marrow transplant. The transplant decreases her risk by replacing her own ability to produce cells with that of a healthy donor. When the donor marrow is inserted it starts taking over her cells. Thus the donors marrow and per say dna becomes her marrow and dna and begins its quest to fight off infection and cancer.The only real complications are infection number one and sometimes the new marrow produces cells that actually see her body as a threat and begins to fight everything it comes in contact with. There is only a slight chance for that to happen. The immidiate family has already been tested and we are waiting for results. The transplant team has told me that nobody else is able to come here for testing and that you are not able to be tested for the purpose of giving marrow specifically to Mikayla. All in all with the issue of bleeding and fever and a surprise visit by the doctor today everyone here is pretty drained. Emotionally I think we are just on auto pilot. Like most parents here you slowly become immune to the bad and tend to concentrate on the good. Currently her immune system has reached 0 like it is supposed to. Her other blood counts are a bit low so the next few days we will be trying to build those back up so that she does not have an issue with bleeding. Her chemo finishes up in I believe 2 more rounds or by tomorrow night. We get an update shortly on the results of remission. Last week or maybe the beginning of this week it was at 56%. Also, her shoulder has been bugging her so this evening we received and x-ray and they will let us know what is up with it later. That is about where we are currently I hope it is somewhat helpful. Thanks MB

9 comments:

  1. what a courageous little girl.. your family is in my thoughts and prayers for a full recovery...

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  2. We have lots of people praying for you - I'm going to add your blog to my blog and ask for prayers - I'm also going to request that http://safe-haven-blog.blogspot.com/ add you too. I have prayed for many children on that website and I know many other people will pray for Mikayla.

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  3. I just heard about your daughter on facebook. We have a 6 year old who has struggled with medical issues since birth, so Childrens Mercy is our second home. I just want to let you know that your family and little Mikayla will be in our prayers. We know how overwhelming having a sick child is and how you do cling to the good news and try to ignore the rest.

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  4. Father God please cover this family in your love. Give her parents a peace. Let them know she is in your hands. Lord be with this sweet girl, the road ahead will not be easy but she can conquer it with your hand guiding her.

    Remember: Always,Always my savior never fails. EVen when all hope is gone, God knows our pain and his promise remains. He will be with you ALWAYS

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  5. kuya mike, ate rhea and kids esp. KK how are you?? Hop that everythng will be ok.. we are not stop to pray here!!!!Just hold on to your faith..KK will be ok ASAP ...

    --topette

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  6. I'm visiting from The Garrett Family. Your little girl is absolutely beautiful and I will be keeping you all in my thoughts and prayers.

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  7. Mike and Rhea my sincere thoughts and prayers are for Mikaya and the family. God has a purpose for her and remember GOD is the GREAT PHYSICIAN and he is in the healing business.

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  8. Buddy and Courtney MunchJuly 17, 2009 at 11:01 PM

    Mikayla is such a strong and brave little girl. We are praying for her and all of your family. Please remember that she is in God's hands and he WILL take care of her. Psalms 46:10 "Be still and know that I am God." Have Faith in Him and he WIll bring her through.

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  9. Your Fletcher Service FriendsJuly 24, 2009 at 12:27 PM

    Mikayla is in our prayers. Mike and Rhea you are amazing with how strong you are being. Mikayla is a brave beautiful little girl. Glad to hear that she is doing well and that her spirit is still strong.

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