Saturday, September 19, 2009
Friday, September 11, 2009
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.
Monday, September 7, 2009
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
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
Saturday, September 5, 2009
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.
Friday, September 4, 2009
Preliminary Result
I was informed verbally Thurs pm that they found 16% Leukemia blasts in her bone marrow. The attending doctor who spoke to me said that they are still hoping.... The team spoke to Dr. Gamis who is her primary oncologist regarding the result. Instead of doing the next course of chemo right away, they will wait one week and repeat bone marrow aspiration and see what is her blasts count. This will help determine the dosage of the new drug they are adding to the chemo. This one week wait will also prevent added risks to her heart and lungs. She had 4 total tests today: cardiac and pulmo to check how the last 2 courses of chemo affected them and establish a baseline before they start another one. If she starts with this chemo, there will be no break (home) at this time. We pray every night that things will change. I felt numb when the doc told me the prelim result today. I wanted to cry , shout , get mad. I know it will not help the situation . I also know that I need to keep hoping.. keep believing ... because there is nothing impossible. I know that my family and friends are praying non stop for us. Thank you so much ... God Bless
rea
rea
Wednesday, September 2, 2009
MORE UPDATES ON FRIDAY
Mikayla will have a bone marrow aspirate on Thursday to determine if the Leukemia is in remission or not. Her treatments will change depending on the outcome of the test. Test results will be in Friday with final results coming in around Monday.
Tuesday, September 1, 2009
Everyday is a better day.....
It was a very busy day. Malachi was screaming, nurses and parents all heard him from everywhere. Mikayla was pretty much in the play room all day. Any time she can go , she's there..LOL.
She has 2% blast based on her lab but they really will not know until bone marrow aspiration which can be on Thursday morning. It takes at least 24 hours or so before they get the result. We are hoping that it will be ok. Whatever the result, her primary doctor already has the plan as far as treatment is concerned. We pray everyday that she gets through this and it will always be a better day. Waiting for her numbers is not easy. Those numbers drive me nuts! I don't fully understand them all but I know a little to get by. What I for sure know , MIkayla is very active, playful , full of energy , doing great in school, eats and drinks well,goes to the bathroom and loves & kisses her brother (Malachi)all the time. All these are answered prayers.
By the way , we had a little problem with supper. I placed the order about 6:45 and it was already 8:15 and still don't have them. I did not want to complain because I really try to be patient but I went to the main nurses station to ask because Mikayla and Malachi are hungry and I was so frustrated I started crying.
About 10-15 min later we got the food. The child life volunteer stayed until we got them. While waiting ,I gave Malachi a shower. They ate , then I gave Mikayla a shower. She brushed her teeth. Gave her vanc paste for her mouth. And put her to bed. By 9:30 they are both asleep. And tomorrow will be a better day....
I sent a text message to Mike because I have not talked to the kids. Damien called me back said good night and that he loves me. My Darian is already in bed. I miss them so much. Mike is driving to KC tomorrow after he drops off the kids to school. My sister and brother in law from Seattle are coming to stay for a week to help me out. See , it will be a better day.....
Again , you guys out there who praying everyday , supporting us , sending cards and gifts , helping us financially , organizing and having fund raising events for MIkayla , THANK YOU so much. God Bless and good night.......
rea
She has 2% blast based on her lab but they really will not know until bone marrow aspiration which can be on Thursday morning. It takes at least 24 hours or so before they get the result. We are hoping that it will be ok. Whatever the result, her primary doctor already has the plan as far as treatment is concerned. We pray everyday that she gets through this and it will always be a better day. Waiting for her numbers is not easy. Those numbers drive me nuts! I don't fully understand them all but I know a little to get by. What I for sure know , MIkayla is very active, playful , full of energy , doing great in school, eats and drinks well,goes to the bathroom and loves & kisses her brother (Malachi)all the time. All these are answered prayers.
By the way , we had a little problem with supper. I placed the order about 6:45 and it was already 8:15 and still don't have them. I did not want to complain because I really try to be patient but I went to the main nurses station to ask because Mikayla and Malachi are hungry and I was so frustrated I started crying.
About 10-15 min later we got the food. The child life volunteer stayed until we got them. While waiting ,I gave Malachi a shower. They ate , then I gave Mikayla a shower. She brushed her teeth. Gave her vanc paste for her mouth. And put her to bed. By 9:30 they are both asleep. And tomorrow will be a better day....
I sent a text message to Mike because I have not talked to the kids. Damien called me back said good night and that he loves me. My Darian is already in bed. I miss them so much. Mike is driving to KC tomorrow after he drops off the kids to school. My sister and brother in law from Seattle are coming to stay for a week to help me out. See , it will be a better day.....
Again , you guys out there who praying everyday , supporting us , sending cards and gifts , helping us financially , organizing and having fund raising events for MIkayla , THANK YOU so much. God Bless and good night.......
rea
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