Radiation

Mikayla started her radiation yesterday. She done a pretty good job at staying brave and still while the procedure was completed. You will see that in the pictures it looks pretty scary even for an adult. She is sitting on a bicycle seat holding onto 2 handles. She had to remain like that for about an hour each time. Yesterday she had 2 rounds of radiation and today she will undergo one. During the night she was extremely sleepy and complained of her ear hurting as well as bad headaches. Oxycodone was used to subdue the headache and worked really well. We have an option for morphine if the oxycondone fails to offer her relief. Friday will be her last round and then she starts with something a bit more familiar to her which is chemo. It's a different type, but she can handle that pretty well.

What a week it has turned out to be

I don't really like to complain or talk about things outside of relevance to Mikayla, but today is an exception. With a show of hands how many of you out there that are reading this have ever had a child put to sleep? Great, now how many of you have had all your children put to sleep in the same week? That's a bit harder to swallow. This week came out of nowhere to catch us by surprise. Starting with Mikayla, she was put to sleep last Friday to examine her bone marrow to see if the Leukemia was still in remission. Thankfully the results were in our favor and came out clear. Next is Damien. He had an orthopedic exam of his broken wrist and they said that this Friday most likely they would have to put him to sleep to insert a rod into his wrist to help correct the damage. Next out of nowhere was Darian. She developed some kind of staph type infection on the back of her leg and had to be put to sleep today to have it surgically removed. Last but not least is my big boy Malachi. Poor guy has to be put to sleep to donate bone marrow to his sister Mikayla. Insurance has got to love us and God I think is pissed at us. Really it's incredibly wierd that as a snow ball starts rolling down hill it begins to get bigger and bigger until it breaks apart. I am hoping my families snowball has made it completly down the hill. Now enough whinning. Mikayla gets admitted to the hospital tomorrow. Her radiation treatment will start right away. Malachi has to give more blood beyond what they have already taken because they screwed up some tests. Idiots. Tomorrow through Friday is frankly gonna suck. Since being diagnosed I have dreaded this day. Add to that the fact that the other two children are now patients makes one wonder what in the world they done to make life go downhill so rapidly. Guess we still have our friends, family, and each other and things could be way worse. Thank you all for your support.

Needles

Today started well and ended up in the dumps. Mikayla had about a 2 and 1/2 hour mental evaluation. Test results will be back around Wed. next week. Malachi had to go get blood drawn again. During the draws Malachi's vein blew on 3 separate occasions before they sought the help of a vascular team. The vascular team tried two times before they were successful. He screamed the whole time like he was in pain and it was very difficult to deal with. That should do it this week for their tests. Friday we take Damien to Orthopedics to get his arm examined to see if his wrist is re-aligned. Malachi and Mikayla are doing well right now. Both are playing and eating as if it was all just a routine event. It's amazing how easily kids forget.

Testing begins

Today was the beginning of testing for bone marrow transplant. Malachi had blood taken and an EKG. Mikayla had a bone marrow apirate and a lumbar puncture. While there she had blood drawn and received a plasma transfusion. Yesterday she went to the Kansas City Cancer Center to be measured for a suit she will wear during her radiation treatment. They both seemed to take it well with little problems. Tomorrow will consist of another blood draw from Malachi and Mikayla will meet with a behavior specialist to make sure she is mentally ready.

At home for a very brief break until BMT

It's late Friday night here at home and Mikayla is resting after a rough last hour or so. She is much better now after taking nausea medicine. Everyone has managed to catch a vacation from the hospital until October 27. It's a short unplanned break, but we will take it. Her first day back she was very excited and active. Today was a little bit less than exciting for her. She complained most of the day about a belly ache, but refused to take the medicine that would make it stop and thus ended up getting sick before the day was up. We still have a long weekend ahead before we all transfer to Kansas City for her BMT. Tomorrow Damien and I will take part in a fundraiser for Mikayla at Landreth Park. It's an intimidating 5k walk/run. I would love to see you all there. Take care and God bless.

Mikayla missed her brothers and sister

Mikayla is missing brothers and sister. Mike still fixing computer issue so she can see them online. She asked for them everyday. It is very hard for her and me but we try to re channel our attention to something else or we will just be sad all day. That is not cool. Still no fever and hopefully it stays that way. She still has the cough but I am hoping it will go away before transplant. BMT nurse was here this morning and said the transplant will be delayed a week due to the flu. She will have vision test, more labs , developmental test and spinal tap before the transplant to get baseline. Malachi will also have some tests but don't know when. May go home for a break but it will all depend on the team decision and consideration of what happened since last Saturday when we found out she is positive for Type A flu. Since she has the flu , she cannot have school here, she cannot be with child life person, but they are able to bring art and crafts stuff for her to do and movies to watch. Things may not always look good at first but without a doubt it will be better. It will be good. Our family and friends have been praying and supporting Mikayla and her fight from the beginning. She became strong in all aspects because God was listening. We all became stronger , better people because of this. We will continue to fight whatever we encounter along the way. We will continue to hope , believe and pray... Because nothing..I mean nothing is impossible if God is in our life.............

Cant seem to find a title for this...

Mike and kids are in Ronald Mcdonald House. We switched places today so MIke can see Mikayla and I can see the other kids. Damien and Darian are well. We acted goofy, danced and took them to get sonic's chicken fingers + drink and ice cream. Malachi on the other hand, was not wanting to eat, tried everything, cried constantly , having hard time going to bathroom and seem to be tired. The poor boy is exhausted...maybe stressed..I hate the policy..I hate isolation..I know this will get better but all i can say is I hate the fact that Mikayla is crying , can't see her brothers and sister. I am crying because my kids are stressing, my husband is stressing.. I just miss my family. But I know we will beat this . We are going be so strong there is nothing that can take us down. God will bless us with so much love , strength , hope , that no matter what happens we will always be together..And tomorrow will be a better day ....