Christmas Lights

All day today Mikayla asked to go see "Christmas in the Park". It's a trail of Christmas lights in the Lee Summit area. The day wore on and I told her we would have to do it another day around 8:00pm. She seemed down so I told her come on get dressed we will go as soon as you're ready. We arrived there around 9:30pm. She enjoyed it and it was the first time she has done something she wanted in a long time. She has to wake up early tomorrow because she has clinics tomorrow to undergo some tests. One of the tests is a bone marrow aspirate. Her blood counts are really good and the results of the aspirate should come out favorable. When we left the hospital she had a bit of Graph vs Host. My intelligence level on the subject isn't that great so we will update next time with what it means and how good or bad it is. She has done well in the short amount of time she has been out. She is eating and drinking well. She walks around more and plays with her brothers and sister. Taking her medicine is still a chore for her though. Sometimes she does it fast and others it takes up to an hour to get it all in. All and all she is doing very well and continues to get better all the time.

RELEASED

Today is a big day! Mikayla is released from the hospital. It is a big milestone in her treatment and re-socialization into society. She will spend a few months close to the hospital for careful observation and routine treatments. When the doctors are comfortable they will release her back home with check-ups and treatments on a bi-weekly to monthly rotation here in Kansas City. This is something we will have to do for about the next 5 years or so. Public outings will have to wait, but the joy of not having to see her in a hospital environment is unmeasurable. Our road ahead is still chalked full of uncertainty. Mikayla will always face the prospect of relapse and infections due to a weakened immune system. Risks of other cancers and complications from radiation, chemo, and transplant will diminish with time. Our lives will slowly fall back into place and Mikayla will gradually become "normal" once again. She is looking forward to being out of the hospital. With less than a month to go until the older kids are put back into school Mikayla is making fast progress and may end up coming back to her house when her brother and sister do. We have to thank many people for their support, but above all I want to thank her doctors, nurses, CAs, and Malachi. These are the folks that done everything needed to get us to the point we are today. We as a family will always be indebted to them for their wise choices and excellent knowledge in fighting her cancer.

Mikayla's immune system is rapidly rising. She has been given a hormone type drug that is like a power boost to get her transplanted stem cells to work in overdrive. Her ANC (a number that gives us an idea of how well she can fight infection) has climbed from 40 to 400 to 700 and now resides around 900. The doctors would like her to sustain around 1500 for 2 days before taking her off the medicine. Mikayla has what seems like allergies, but the doctors are not overly concerned and explained that the air here is really dry and may be the cause. She is becoming more and more active. Outside of having a bald head you probably couldn't tell she ever had any problems. She is still fun, moody, and bossy. We are looking forward to tranfering to the Ronald McDonald House on Monday. We will remain there for the rest of her treatments or until around March coming to the hospital only for clinics and fevers. During this time we start to get a handle on being the parents again with the hospital acting as our crutch. Can't wait!

So thankful for so many things..........

Mikayla is off IV machines. She will be taking all meds orally tomorrow. She is doing so good. God has been showering us with so many blessings. I am so thankful for my family, my husband Mike , our kids, Damien, Darian, Mikayla and Malachi. So thankful for all our family/families and friends. I am thankful for the strength, wisdom, courage, love, patience , everything that I receive every day. Thankful for the doctors , nurses, CAs and all the medical and non medical team who take care of my daughter. Thank you to the parents who share the same hope ....who are fighting for their children.... I am so thankful for so many things....Thank you God for all these..........

Saturday Siblings

On a normal day here in BMT Mikayla wakes around noon. Relying on routine I decided that I would stay up late and get things done which included overhauling her blog. I had just fallen to sleep around 3:30 or 4:00am and was woken up by Mikayla needing to go to the bathroom. I looked at the clock and it was two minutes until six. When she was finished she wanted to watch TV. I said no that she needed to go back to bed and she said NO!!! I am staying awake cause Kuya and Sissy are coming. Today the ban on sibling visitation was lifted giving way to a spark of happiness for Mikayla. It is rough on her sometimes not being able to see her brothers and sister. Today she has been a totally different person. The person or persons that instated that dumbass ban in the first place must not understand what a child here has to go through. After seeing how Mikayla was yesterday compared to today I would love to be able to tell them "told ya so". It's a battle for the whole family and it just isn't fair to make a child go at it without her entire supporting cast. So for now, or at least through the holidays Mikayla's emotional healing will be in full swing. Doctors, nurses,ca's, and medicine can only do so much to heal a person the rest is up to us as family to give her the emotional support needed to complete her journey.

pictures from the last 3 weeks

pictures from this week