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 ....

I hate flu..........

Malachi is better, fever free since midnight last night. Mikayla's cough was getting worse. Found out this morning she caught a Type A flu. Broke my heart. It made me feel really upset. I asked the nurse, "Why is it that no matter how much I try to prevent my kids from getting sick , then something like this will happen." The hospital started a new rule today, no siblings or visitors below 18 is allowed to enter the hospital. The doctors, nurses and child life thought they can do something for us. Child life asked them that since Malachi basically lives here that he gets to stay as long as he is not sick. The other kids will still see Mikayla but in Ronald Mcdonald House. Her doctor will give her a day pass to go to RMcD house as long as she is feeling good and stable. Now since she caught a flu, Malachi cannot come up , and she can't be out of hospital even on a pass. Still don't know how it will affect bone marrow transplant. I am hoping that she does not develop Pneumonia and that she responds well to the flu medicine. Doctor said ,it is never good to get a flu for anybody but for her , it is better to catch it now and they are able to take care of it easier than if she would have caught it during prep chemo for BMT and during bone marrow transplant(BMT). Right now she has a little bit of immune system versus on bone marrow transplant it will be nothing (zero). But I will not lose hope, she will be fine..she will get over this stinking flu and we will go to transplant....thank you for your prayers and support...........

What an eventful day.....

Thursday we were told that pathology is back and there is no Leukemia in her bone marrow,,,YIPEE SHE IS IN REMISSION!!! Thank you God...Excitement is over flowing every where. Even nurses and CAs came to the room , so happy about the result. I sent text message to everyone I know. Mike did the same thing. We are on our way to bone marrow transplant.SOON!!! Malachi and Mikayla will be having some tests before the procedure.
Mike had to pick up Malachi because he was not feeling well. He was teething (finally) and was running a fever. So he cannot be around Mikayla. But when they got home , he was having more trouble, including breathing. Mike took him to emergency room so he can be further evaluated. He was running 104.1 temp. McCune Brooke Hospital in Carthage ,MO is as close as Freeman Hosp from where we live. Mike said it was quiet there last night so Malachi was seen right away. Negative for flu, neg for RSV, neg x-ray , waiting for strep result. Fever was down so they went home. Thank God he is ok. So hard to be away. I know without a doubt Mike will be fine with the kids but as a mom , it was hard not being with them. Mikayla was worried about Malachi. Damien and Darian were with them in the ER. It was past 12 am and Damien has a test Friday. Kids are going to be tired all day today. Malachi cannot be around Mikayla until he is symptom free for at least 24 hours. So we don't know if they will be here tonight. Hospital will have a new rule effective Oct. 17. NOBODY UNDER 18 allowed to enter hospital except the parent of the patient. We are trying to see if they can arrange something for MIkayla who is a long term patient.
I know that everything will work out. Everyone is praying for her. All our friends and family never stop praying ... hoping... believing....and fighting with us. I know that God will continue to heal her and take care of my family.
I posted something in face book yesterday. This is just one of the things I learned from this experience. I know you will find this true because I did... WE TRY SO HARD TO CHANGE OUR LIVES , WHEN LIFE ITSELF WILL CHANGE YOU...........
Again thank you for never ending prayer and support. Our family is so grateful and blessed.