Wednesday, January 27, 2010
First I want to thank everyone who has helped our family along the way. Today, hopefully, will mark the day that our lives return to normal. Mikayla was released to home today with weekly follow-up visits to KC. With this news means that from here on out that Mikayla will be at home baring any fevers or signs of relapse. For the most part we will no longer be updating the blog unless things drastically change. We will be compiling all the posts as well as photos and comments into a book. The blog covered mainly the world of Mikayla through her parents eyes. Our whole family has been through a lot. With support from friends and family, treatments from doctors and nurses we seem to have done alright. Although she has many years left before we can truly say she is cured, we couldn't be more pleased than we are today. We will need time to readjust our lives to fit into our new circumstances. Visits should be held to a minimum as well as outside the house activities. We have come to far just to regress and begin again. Rea and I will take a few more months off before we begin to work again. We plan on going to Disney in April with the help of Make-A-Wish. It is a vacation much deserved for our little girl. We will be finding ways to give hope and insight to others that are just beginning their journey. Plans of volunteering at Children's Mercy and talking to other new AML families is one way we can help. We were blessed to have good friends, families, and a strong supportive community while others may not be so fortunate.
Monday, January 18, 2010
We were in clinic from 1:30 to 6 pm. We were the last patient there to leave. Her labs are better , liver enzymes still elevated but better than Thursday's. Hemoglobin , platelet and ANC were down Friday but better today. She is in isolaion when she goes to clinic due to RSV but she is definitely getting better. Praise God!!!! We thank God and you all who are praying for her recovery. Just so blessed for all the positives. Thank you so much. Be back Thurs for labs and exam again. God Bless us all...By theway had a great , quiet birthday weekend for Mike and awesome visit with te kids. Darian excited abouther short haircut...lol See you all next time.
Sunday, January 17, 2010
Mikayla is doing well. She tested positive for RSV this week and received an injection to help counter act the virus. Her appointments are now 2 times a week. She has been removed from a few medications. Our path to freedom is growing shorter. There is a small chance that within a few weeks she will be going home and continuing treatments in KC once a week for the rest of the year. For now she remains in KC with her mom out of the need to be close to the hospital for emergencies. Thanks for your thoughts and prayers.
Thursday, January 7, 2010
Mikyala has been doing really well this week. She hasn't showed any signs or symptoms of being ill. Her appointments haven't turned up anything of too much worry. She did have to give a little bit of extra blood on Monday because her liver showed some elevated levels. Her hair is growing. It looks much the same as a 3 day growth of beard on a man but really soft. She goes into clinic for her second weekly round of tests tomorrow. All seems good except for the frigid temps outside.
Saturday, January 2, 2010
It's about 2am Saturday morning and Mikayla is sleeping well. In the hospital she would have a difficult time breathing making unusual sounds and always seemed to have a stopped up nose. When she was released on the 30th it was a huge sigh of relief. The past month or so has been a difficult road for the whole family. She was so far down it didn't seem like she would come back. It all went away as fast as it came. Some great discisions by her doctor i believe led us to this day. We will never know what really happened, but as parents we have to do what we can to be sure it doesn't happen again. That includes making hard choices about what meds she is allowed to take and making sure anything new being done has been cleared through our number one doctor first. All is going well right now and we couldn't be more happy as parents to see our family together once again. Our road ahead is still very long and full of uncertainty. We have learned that each day is just that day and that the next will come soon enough.