Having a good time hanging out

This is the first time since being here when Mikayla was not sick that she didn't go to the playroom. She wanted to stay in the room and visit with her family instead. Today was an ok day for the most part. Towards the end she started trying to have a fever. When I left it was right under the mark to be considered a fever or not. Unlike before I think the chemo is making her sick. She handles it well and after she is done goes about her business as if nothing had happened. Today went really fast. We discovered we could now use a webcam to communicate back and forth from home. That is a major deal. I have been working on that since July. We talked a lot today about nothing really at all just general stuff like farts, hair, school, etc. She watched Honey We Shrunk the Kids. She has gained some weight. I think she is bigger now then she has been at any point in her life. She discovered that a present the "toothfairy" umm Devine sent had a multi-colored pencil. She was so excited and had to show everyone that it wrote in two colors at the same time. We played the operation game and she swears that even though it buzzes that she still wins. All and all a very good day.

Treatment

Yesterday Mikayla began her 3rd round of chemo. We of course haven't spoken to her doctor yet, but we have spoken with his RN. Mikayla gets ARA-c for 24 hours a day for 7 days as well as 2 of the for wonder drugs spoken about in earlier posts. I am terrible with names so I will update later about their names and more information about what the risks of the drugs are. She is doing well so far with the medicine. If she doesn't achieve remission then we will undergo one last round of chemo before we end up in bone marrow transplant. If remission is achieved then we will go to BMT right after we finish.

Break coming to an end.

Mikayla's brief break from the hospital is coming to an end. We ended up getting close to a week and a half of great time off from the hospital. For the last few days we spent it here in KC at the Ronald McDonald house. On Friday she recieved another bone marrow aspirate to determine her Leukemia count and it came back as being at 61%. Her last scan said the Leukemia was at 16%. Tomorrow she will be admitted back to the hospital for treatments. She will recieve chemo and a promising new drug that is still considered to be experimental for the treatment of her cancer. Mikayla keeps baffeling the doctors. Her type of Leukemia should be considered fairly straight forward as far as treatment goes, but it has been quite the opposite. Our doctor is the number one man for the job, but she has presented him with a huge challange of getting her body under control. Over the next 28 days or so she will continue to recieve chemo and the drugs noted above. What happens after this stage is still a mystery. Originally we were supposed to go in for a bone marrow transplant at the end of the cycle, but now we are going to be facing mutiple forks in the road and the direction we take can only be determined by the way her body responds over this time frame. Outward apperance and actions don't really indicate she is getting worse. When you talk to her she always says she feels great. It again seems to be yet another challange we are facing in a very long road of challanges ahead. Mikayla at least doesn't seem to be affected by any of this. She carries on as if nothing is the matter. She doesn't really know that she is brave, but as most of you know as well as I do, she is one of the bravest little people I know.

sorry been very busy here are some updated photos

Going Home

Today was a big day. We got to bring Mikayla home for a week. Later I will update this post with some pictures and video. She loves it. Her room was redone in pink and is much more "girly". She likes that she can play with her brother and sister. God annswered some prayers today.

Busy Sunday and Monday

We had a busy Sunday. Tooth fairy came and left her $10. Told her, because we are in KC, the tooth fairy considered cost of living and taxes difference.LOL. We had few friends and family came to see us. It was a good visit for everyone. Of course Mikayla was busy between the visit and the playroom. She has good sister to play with and a good brother to watch her.
Her hemoglobin was 7.2 (7 or below needs transfusion) and was told that possibly by Monday morning they will transfuse. Nothing stops her from playing. We all can expect any 5 yo will do the same thing. She was tired but did not go to bed till 10:30.
Monday: She woke up around 9 am. Had tater tots, bacon, peanut butter toast and orange juice for breakfast. No transfusion because Hgb stayed 7.2. She has been maintained at 8-7.2 for last 4 days. We were told that bone marrow aspiration will be probably Wednesday. She had a repeat EKG Sunday and docs today said , a little prolonged Q wave which they are not alarmed. They want to monitor that due to some medication can make it worse but she is not taking any at this time. She has a cardiac consult tom. Of course she played all day. We left to go to store this pm and was upset not just because she cannot go but bec. kuya (big brother) and sissy are leaving her. They promised her a present so she was somewhat ok. Mariz and Mon (my sister and brother in law ) stayed with her and Malachi while we were gone. I can't wait for the day that she can go to a store again. She always wants to ride in the cart and try clothes. When she wants somethings and I explain why she can't have them, she will always say, "Oh right mom , we're only here to get what we need and not what we want" . She even tells her brother and sister that when they ask for something we don't need. One of this days, she will go home and go to the store. I know she will...
Then of course it was time for Daddy, (kuya) Damien and (Ate) Darian to go home. She hates that. When they left, she was upset. Her mood changed. She was crying. She went to bed early. It is so hard to be away from each other. But we don't have a choice right now.
My heart breaks when I am away from any of them. Mike does an excellent job playing both roles and I am thankful for that. It is just...when it comes to taking care of certain things, a mom has that TOUCH....(no offense to dads )
Again , we would like to thank you for praying non stop for Mikayla and our family. All of you who are helping us in so many ways. We would like to thank you for everything. Individuals, couples, families, churches, organizations, businesses, etc , THANK YOU so much. If we missed or forgot to thank you , we apologize sincerely. Thank you and God Bless us all.
rea

Eventful 24 hours

Yesterday, the vascular team changed Mikayla's bandage in the afternoon and added a lotion to the site before applying the bandage that covers her picc line. A picc line runs out of her arm all the way to her heart for chemo and meds. While taking a shower last night Rea placed Press N Seal over the bandage to make sure it did not obtain water. This is part of her daily shower ritual and is a requirement. After drying her off Rea removed the Press N Seal as always, but this time it pulled an inch or so of her picc line out. When the nurses and dr. came to inspect it they recommended that it go ahead and be removed because of the chance for infection. This was pretty traumatic for Mikayla. It was painful and completely unnecessary if the vascular team stuck to what they always did which was to apply the bandage without the lotion. After pulling it out there was discussion whether or not the picc line had broken off inside and nobody could find the exact measurement it was supposed to be. This morning had an ultrasound and xray to determine if it had broken as well as having to go through the pain of having another put in. I was there and believe me numbing or not it was painful. There is some bright news though. Mikayla lost a tooth today. She was brave enough to pull it herself. It currently is in a ziplock under her pillow awaiting the tooth fairy.