Monday, November 30, 2009
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.
Friday, November 27, 2009
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!
Tuesday, November 24, 2009
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, November 21, 2009
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.
Friday, November 20, 2009
Thursday, November 19, 2009
Things so far have been progressing right on target. She has had minor complications do to mucusitis. On Saturday they are lifting the sibling ban at the hospital which will allow her to see her brothers and sister for the first time in about 3 weeks. Her transplant has yet to show signs that it has worked. The doctor said in around a week or two we will start to see the change happen.
Tuesday, November 10, 2009
Today our long dreaded transplant took place with a series of events that will continue to play out over the next 100 days or so. It all began with Malachi. This morning around 6am we took him in for surgery to harvest his stem cells. This surgery is kind of gruesome so do a google search if you are interested in what happened. Malachi came out of surgery with somewhat of a hangover that lasted around two hours before he became his self and began walking and talking again. Shortly before he woke they began placing his stem cells into Mikayla. With stress at it's max and imaginations running wild we expected the worse and seem to have come out with the best. Mikayla's body did not react in a fashion that would scare even the most timid of us. It was a huge monkey off of my back. Now that the stem cells are in we will continue to monitor Mikayla for a host of infections, difficulties, and reactions as her journey to 100 continues. Towards the end of this week her body will begin to react towards the many journeys she completed this week. Her chemo and radiation is just now starting to affect her mucus linings making her sick similar to eating bad food and feeling bloated with sinus infections. The stem cells will begin the task of breaking down her old cells and creating new healthy cells. Many things can go wrong and many things can go right in the next few weeks before concerns of damage from this week die down. We will continue to try to keep things up to date and keep everyone informed of the many highs and lows that are still left for our family to face. Thank you all
Monday, November 9, 2009
Thank you to all of you. My family is so blessed knowing that we are so cared for. All my family and friends all over the world are praying , hoping and believing with us. We often ask, why things happen the way they do, but we seldom stop and look around and the answer is just right there in front of you. My kids complete me..and when i see them hurt, I feel like breaking.. coming apart...but I remember the LOVE that completes us all and I am whole again. I ask , how many times can ur heart break until its done breaking...then I look at my kids my family and there is my answer....IT WILL NOT BREAK!!!!!!!!
Chemo is done. She got sick few times but more yesterday. Her meds are given through her line except for 1. She will have NG tube put in today. This will help her get nutrition specially on days she is not getting anything by mouth and when mucositis hits her bad. Today besides NG tube , is mainly rest day. She will be done with having to go pee every 2 hours by 10:45 am. They had to make sure to goes to bathroom every 2 hours since Saturday due to the chemo drug risks to the bladder. Now we wait for tomorrow, the date of transplant. What I was told is Malachi goes in at 6:30 am to the O.R. , 2-3 doctors will do the procedure/harvest. He weighs 10.2 kilos , they will extract about 20 ml of bonemarrow per kilo of his weight. He will be taking iron sup. for next 8 weeks. After it's extracted , they take it to the lab, will take 6 hours because Malachi's blood type is different but that is not a problem. What will happen is Mikayla instead of being O+ after transplant she will become A+ like Malachi. Then we wait for Malachi's bone marrow to take over. Since they are siblings the risk of graft versus host is less. But we still hope that Malachi's cells don't think that Mikayla's body is an enemy and fight.
THis is what I have for now. Thank you for all your prayers and support. Thank you Lord for everything.
THis is what I have for now. Thank you for all your prayers and support. Thank you Lord for everything.
Saturday, November 7, 2009
Radiation was completed yesterday and her chemo started that evening. Overall I think she done pretty good. A little bit of belly sickness and some headaches. The chemo she took made her blood pressure go crazy. Along with the chemo she takes a pretty sizable portion of IV fluids. This is causing her to gain weight at around a pound a day. She looks like a rolly pollie. Currently she is watching daddy day care and eating ramen noodles.
Thursday, November 5, 2009
Mikayla started her radiation yesterday. She done a pretty good job at staying brave and still while the procedure was completed. You will see that in the pictures it looks pretty scary even for an adult. She is sitting on a bicycle seat holding onto 2 handles. She had to remain like that for about an hour each time. Yesterday she had 2 rounds of radiation and today she will undergo one. During the night she was extremely sleepy and complained of her ear hurting as well as bad headaches. Oxycodone was used to subdue the headache and worked really well. We have an option for morphine if the oxycondone fails to offer her relief. Friday will be her last round and then she starts with something a bit more familiar to her which is chemo. It's a different type, but she can handle that pretty well.
Monday, November 2, 2009
I don't really like to complain or talk about things outside of relevance to Mikayla, but today is an exception. With a show of hands how many of you out there that are reading this have ever had a child put to sleep? Great, now how many of you have had all your children put to sleep in the same week? That's a bit harder to swallow. This week came out of nowhere to catch us by surprise. Starting with Mikayla, she was put to sleep last Friday to examine her bone marrow to see if the Leukemia was still in remission. Thankfully the results were in our favor and came out clear. Next is Damien. He had an orthopedic exam of his broken wrist and they said that this Friday most likely they would have to put him to sleep to insert a rod into his wrist to help correct the damage. Next out of nowhere was Darian. She developed some kind of staph type infection on the back of her leg and had to be put to sleep today to have it surgically removed. Last but not least is my big boy Malachi. Poor guy has to be put to sleep to donate bone marrow to his sister Mikayla. Insurance has got to love us and God I think is pissed at us. Really it's incredibly wierd that as a snow ball starts rolling down hill it begins to get bigger and bigger until it breaks apart. I am hoping my families snowball has made it completly down the hill. Now enough whinning. Mikayla gets admitted to the hospital tomorrow. Her radiation treatment will start right away. Malachi has to give more blood beyond what they have already taken because they screwed up some tests. Idiots. Tomorrow through Friday is frankly gonna suck. Since being diagnosed I have dreaded this day. Add to that the fact that the other two children are now patients makes one wonder what in the world they done to make life go downhill so rapidly. Guess we still have our friends, family, and each other and things could be way worse. Thank you all for your support.