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.

Cause for a celebration

Today preliminary results show that Mikayla's Leukemia is in remission. Now I know that I am jumping the gun, but damn it, it has been a long road to get to this point. Until your faced with this in your life you could not imagine what kind of relief it is if only even for a day that you can believe in faith and that there is hope out there. Without taking to much risk of jinxing myself enjoy the tunes and have a great night.

Changes coming this week.

Well this week will be hell week. Lots of things to do and lots of things that will change. Going into the week we are expecting Mikayla to get a bone marrow aspirate to determine if the Leukemia has went into remission and by the way her CBC (complete blood counts) look I believe it will be found out that she is. In that case things will changer really rapidly. Both her and her brother Malachi will move to the transplant center. Malachi will undergo some tests. Mikayla will be getting radiation treatment as well as a stronger form of chemo than she has taken previously to prepare for the transplant. On the home front I will be preparing the kids for a move to Kansas City. It's not something they are looking forward to, but I believe it will be the correct thing to do. We are working out two options. One is home school and the other Catholic school. It's a work in progress and the outcome is not set in stone. Our biggest concern in this crucial stage is for Mikayla to stay healthy and away from viruses such as the flu. Today that concern just went through the roof. After spending and entire weekend with Mikayla both Damien and Darian seem to have flu like symptoms. They received a flu shot last week so I am hoping that it is connected somehow. As time goes by this week we will see. I will keep separation as long as I can to determine what is the matter. Wednesday we will know more of how things are gonna change.

Great time with kids

We switched places this weekend. Although we are still in the hosp room during the day, at night Mike stayed with Mikayla and I was with the other kids at RMHouse. Spent all day Saturday with Damien and Darian in Oak Park Mall. We just walked around; got a book at Barnes & Noble ; ate cinnamon sugar pretzel; then walked around; got a game; Darian rode merry go round; bought a couple of things ; then ate and had ice cream in the food court; lost my phone in the book store but got it back...GAve kids $20 to spend. Next thing you know its 8:15 pm . It was time to go back and try to make it back to the hospital before 9. Have not been with the older kids in a public place that long. HAd a great time . Damien suggested we need to do this once a month.
Sunday is football day , KC Chiefs vs Dallas Cowboys. You all know who won. Well , KC almost won except they forgot to score at overtime. Ok Ill cut this short, still have to go the store,Mikayla needs some stuff, brrrrr... Thank you for the prayers and support... Great weekend..

Support

We as a family are more fortunate than others. Cancer in children is a very hard matter to deal with, but the support group we have is out of this world. From day one people have been drawn to help us in anyway they can. We have had people organizing fundraising to help with expenses who do not expect anything in return. We have had donations from all over the country from people we barely know. Simple things that become major tasks such as mowing a lawn has been done by anonymous people volunteering their day to help. Everyday people give us words of encouragement that seem to touch our spirit and ensure everything will be ok. All of which are selfless acts of support for our family and little girl Mikayla. I want to take time to thank you all. To thank you for your love, your hope, and your prayers. May God bless you all.

Wednesday

Mikayla was still in pain. She complained of stomach pain and cried after bowel movement due to pain in her bottom. I have asked nurse to possibly get her something for acid reflux. She tried to swallow zantac pill but did not work. So we had to go to liquid form but she almost threw up. It helped for breakfast but she did not ask for it at lunch time. Instead she asked for nausea medicine and pain med. All she ate for last 3 meals since Tues was few bites of spaghetti and broccoli. She ate better for supper with little complaint until its time for bowel movement. For last 3 days she has been crying everytime to goes to bathroom regardless her stool is soft. She doubles up and in tears during and after mostly after she poops. Resident assessed her the night before and the following morning and sees no tear from outside but I know there is something wrong inside because she should not be experiencing that kind of pain. Again I asked diff nurse to please check with the docs. I was so frustrated. I felt like it was up to me to figure out what medicine will work or what test to administer. Nurse paged the resident and was told ,that it will be discussed tomorrow with rest of the docs and possibly CT scan. The severe pain goes away after 15 min. I cannot stand it when my kids are in pain and there is nothing I can do. I wanted to cry with her when she hurts but I have to be stronger so she does not get scared. I have to assure her that it will be ok and we will find something to help her. Malachi was not too happy either. Did not want to eat much. Spits everything except fresh strawberries and grapes. Worried he is not getting enough protein and iron. He did better for supper as well, but been a cry baby all day. What a day !!! But its ok and its going to be better.
On the other hand, she is looking forward to Friday. She learned a couple of rubber band and paper clip tricks this afternoon during a magic show in the play room. She cannot wait to show Daddy , Kuya and sissy. Mike and Damien told her via oovoo that they will be here early that day since there is no football practice and Mike will even pick them up by 2:45 from school so they should be here before 6 pm. By the way Darian's hair looks good for picture day. She is excited. Mike is feeling better compared to Tues. Damien's grade in English/Language Arts is better.
Thank you very much for all the prayers and support. God Bless us all.....

Tuesday so far

Since last night Mikayla has developed a cringing type pain in her belly and is refusing to eat. I went and seen her today and she was acting as if she was scared. She had nurses in the room and her mom all trying to make her eat. I sat beside her as I entered trying to see what was going on and the nurses began hooking up a appetite stimulant. After a little pep talk and some advice about eating she ate a ham sandwich for me. I told her the pain goes away if you eat and that it will stay away as long as you eat foods like ice cream and sandwiches. Sometimes we try to explain about the feeding tubes and how it is better if she ate instead of having one inserted. I think that scares her too much now. She wants to eat, but is scared her pain will worsen. There is a fine line between scaring her into eating and letting her know she is capable of doing it on her own.

Over the weekend until now

Sorry, we are getting so lazy on the blog. When we forget to update we hear about it fairly quickly. Saturday and Sunday was a lot of just us hanging out. We watched movies and talked. Mikayla seemed pretty good. No major issues. Without jinxing us I am proud of Mikyala. Her blood counts so far are still showing negative for blasts. Blasts are good indicators for Leukemia. Her counts are all low, but with some divine intervention things will proceed down the correct path. If all stays the course we should be getting ready for her transplant by the end of October. It is going to be a rough experience. She will get a round of chemo and 4 full body radiation courses before the transplant. The chemo itself we are told is really mean. I personally have heard nothing but bad from people about radiation therapy. The levels which what they treat her with are stronger than xrays, but about 1/4th of what they would put to say a brain tumor. We are currently studing to determine if the choices ahead are the correct ones or not. We want to do all we can, but we don't want to cross the line and do more damage then she can withstand. Any comments or experience in this matter we would love to hear from you. As always my family would like to thank everyone that is supporting Mikayla and her family on our difficult journey.

Thank you ....

Just want to say thank you Becky for the cake. To those who offered I want to say thank you. You are all so sweet. I have always picked up the kids 1st bday cake.I can't leave Mikayla and of course driving with Malachi alone and knowing he will cry and scream, I was not able to do it this time. Again thank you..............
So, today Mikayla was excited of course because it is Friday. She did not feel very well after breakfast. She threw up and did not feel right all am. She complained of stomach ache before lunch and really did not want to eat anything. I asked the nurse for benadryl which knocked her out. She slept for three hours. Woke up and felt better. She was glad to have that rest so when Damien, Darian and Daddy get here she can stay up late. Things worked out. She was a different person when they all got here. She even ate better and had seconds. Smiled, giggled , played and prayed together. Mike was tired but he made sure Malachi is asleep before they go to RMcdonald house.
Have a nice night and God Bless us all....

Malachi is Big 1

Yes my Malachi is 1 yo. Thank you Lord for this gift. Mikayla is so excited. She tells everyone to do the Bday cha cha song for him when they come to work. Mike told me last night that a lady he went to school with is having a bakery in Kansas City deliver cake today. Thank you so much. That is so thoughtful of you. Even my friends in Joplin area are wanting to help me celebrate his bday at home. But I just can't celebrate without the whole family anymore. Mikayla and I missed Damien's bday party this summer . People have been so nice to us. We praise the Lord for all these blessings, all our friends and family praying and supporting us non stop. Everyone who follows the blog, thank you.
We will wait for Mike , Damien and Darian and celebrate Malachi's 1st bday ..... Again Thank you to all . God Bless.............rea