Day +97, August 23, 2006
We are nearing day +100 which is a milestone, but we have also taken another huge step today. Carly had her trach put in an hour or so ago and she is doing awesome! She made it through the procedure without any problems. She did not get set back at all, in fact, they were able to come down on her amplitude because her CO2 levels went way down after the procedure. So, in the next few days we hope to make some more progress and get her down on the pressure settings and stuff. We haven't discussed the plans as far as sedation goes. They may want to get her a little farther along before letting her start to wake up. I don't know. We will talk about it soon I am sure. Anyways, TODAY IS A GOOD DAY!! I will update soon and let you know what kind of progress we have made!
Isn't she BEAUTIFUL!
*Carly's story as told by her dad on July 5, 2006
In the beginning of January I (kevin) returned from 14 months of deployment to Iraq. We (myself, Steph, Carly and Jacob) took a trip out to California to visit my parents and we noticed while we were there that Carly was not acting completely herself. She slowly became more and more fatigued and had persistant low grade fevers along with some random bone soreness. Well, by the time we got back home to Ohio at the end of January her symptoms were too much and we ended up taking her to the Emergency Room at Cincinnati Childrens Hospital on January 25th. They quickly realized that this was not a viral thing as we had been told before. And in the early morning hours we were given some of the worst news a parent can hear. They told us that Carly has Leukemia and that she would be admitted to start treatment right away.
At this point they thought it was low risk Acute Lymphoblastic Leukemia (ALL), but later on we found out that she was Philladelphia positive, and in some of the initial treatments she didn't respond fast enough. So they switched her from a low risk ALL protocol to a very, very high risk protocol for slow responding ALL with PH+.
Despite all setbacks Carly reached full remmission from both her leukemia and her PH+ and remains that way today. She had the normal and some abnormal problems along the way. She experienced extra pain from things like extreme sores in her mouth from Herpes Simplex Virus (HSV), multiple kidney stones, etc.
So from January through May she went from extremely cancer ridden to cancer free, but there was one last hurdle for her to jump. In order to keep the PH+ chromosome and leukemia from coming back the doctors wanted her to have a bone marrow transplant. They found an unrelated donor that seemed to be a very good match, and they didn't tell us until afterwards that they had been extremely worried because it was extremely hard to find a donor for her. Her transplant was scheduled for the beginning of May, but it got delayed a week because she came down with fevers and a cough a few days before (causing several emergency room visits). After running every test they could think of they decided to go ahead with the transplant. On May 9th she was readmitted and began radiation and chemo, and on May 17th she received her new cells specially delivered by the life flight helicopter! Everything was going great except that she still had a cough and intermitant fevers.
She eventually began having serious breathing problems which led them to do a bronchoscopy. They found nothing abnormal such as infections. After a night in the ICU they extubated her and sent her back to the BMT floor. A few days later she was rushed to the ICU because she just couldn't breath well enough on her own. She spent a week in the ICU on a mask called a CPAP before she finally had to be intubated again. They told us that they did not know what was wrong with her lungs and they called it Idiopathic Pulmonary Syndrome. Which means that they have ruled out all the things they can think of and they don't know what is wrong. They told us that there was not much hope for her. She was maxed out on an oscillator and barely hanging on for her life. She had leaks in her lungs and there was nothing more that could do to help her. They told us that she was going to die. WE DIDN'T BELIEVE THEM!!!
The next day Dr. Lesley Doughty took over as the attending and she started her on high dose steriods, a nitrous oxide machine, mendriol and experimental drug, etc. That is when she started making progress! Thank you Dr. Doughty you saved our little girl's life!! I know she doesn't read this, but I had to say it anyways. She came up with new ideas when the day before the other doctors had swore up and down that there was nothing else they could do. Even though I just about tried to beat ideas out of there heads!!!
It has been over 2 weeks since they told us that and she has made amazing progress. She has gone from extremely high settings on the oscillator to being on a conventional ventilator and she is still making slow progress. We know that she has a long struggle ahead of her, but we will be there for every step. We just long for the day when she can be a normal kid again. There is a lot more to the story than I have expressed here and there will be a lot more to tell in the future. We love her so much and just want her to get better, and we will stay here for as long as that takes