Monday, August 24, 2009
First Day at UMC
"So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand."
Hello!! We have had a fun filled day in Tucson. Well, maybe not fun, but we got a lot accomplished. Dylan went in for his broviac surgery at 9:30 and everything went well! The docs were able to place a double broviac in his chest, so now he has 3 separate lines that they can access at any time. As you can imagine, 3 cords hanging from a baby's chest almost seem like a fun play toy--so we have to be very careful that they are covered up. During the broviac surgery, they also did another intrathecal spinal tap. They put some more chemo drugs into his spinal fluid and took a sample of the fluid as well. AND THAT IS WHERE THE BAD NEWS COMES.....when they looked at the sample, they found a small trace of leukemia. This comes as a surprise and leaves us with one of two options. Option one is to not do anything and go on with the transplant and hope that the strong chemo drugs kill the remaining leukemia. Option two is to do radiation. After talking to many specialists, Dr Graham has decided to do the radiation. This is something that he is normally against because he believes that transplants can be done without them, but in this case, it will be the best thing to be sure that the leukemia is killed before they start the transplant. This is just one more scary thing that we have to put Baby Dylan through and is something that we definitely did not plan on. Again-we are NOT in control and believe that God has a plan in everything. The specialists that Dr Graham talked to have never done radiation on a patient as young as Dylan. In patients over 6 months old, there have not been any major side effects recorded so they are hoping that is also the case for Dylan. In some cases, kids have shown to have a lower IQ than others. We are not worrying about that and know that God will protect our precious baby. Please pray for us as today has been a whirlwind of events and not-so-good news. We know that we have to continue to take it one day at a time and that God will give us the strength to get through each day....each hour. Dylan is in a little bit of pain right now because of the surgery and is groggy and grumpy. But he did manage to flash us a few of his adorable smiles--so mommy and daddy are happy!! Please continue praying that his body can endure the hard road that is ahead of him. With the new treatment of radiation, his actual transplant will be pushed back about a week. He will have radiation 2x a day for 4 days, and that will begin next week. Every time he gets the radiation, he will have to go under anesthesia (yes, 2x a day!) and that in itself proposes a risk. He also cannot eat 6 hours prior to anesthesia, so those 4 days are going to be VERY TOUGH to say the least. I have to admit that Erik and I are very disappointed that he has to get this and it is hard for us to consent to, but we know that it is the best thing for Dylan in the long run. Please pray for us as our hearts are heavy with many emotions and fear of the unknown. Tomorrow Dylan will be resting and we will find out the plan for the rest of this week. Please continue to send emails of encouragement and verses as those help out immensely!! You all are such an encouragement and a support to us! Thank you!