The past couple of weeks have gone pretty good. Since the last blog post Jaycee has been healthy and happy. The second round of chemo went much better than the first. There were no extra hospital stays other than the planned ones with her chemo. Throughout the second cycle we had to give her a shot every night to help her blood counts stay where they are suppose to be so that she would be ready for surgery. If her counts were low then surgery would have to be postponed. Luckily that never happened and she was right where they wanted her and surgery is on for February 19th.
On February 18th we finally were able to meet with the genetic doctors to do some testing so that they can figure out exactly what types of conditions Jaycee may have. Ever since the beginning, the doctors suspected that she has a condition called BWS (Beckwith Wiedemann syndrome). BWS is an overgrowth disorder usually present at birth and characterized by an increased risk of childhood cancer. She also has hemihyperplasia which is the overgrowth of her left side. All the doctors up to this point have thought that this was her diagnosis and after meeting with our Geneticist he confirmed it. He said with all her symptoms and what he can see, he would say that she had BWS. They are going to do some genetic testing and they will be able to see exactly what chromosome was affected and if it was inherited or just a mutation of that specific chromosome. This was a very educational doctors visit. It was interesting to see how detailed they can get now days with looking into the DNA.
Jaycee was a good sport during the two and a half hour long appointment. She was full of smiles and happy to be there. Over the next few days they will be drawing her blood and possibly even taking some of the tissue from the tumor that is removed so that they can extract DNA for the testing. This is very interesting to me, it is almost like a road map for us in the future. We will know better of what to watch out for and what to monitor as she gets older. We will post more once we get the results from the genetic testing and then we will have a better understanding of how all of this started.
After our genetic appointment we had to go to the surgical floor to have blood drawn for surgery tomorrow. Everything was looking good, they were able to access her port for the blood drawn and leave it for the operation. Jaycee, like always, was a good sport and just watched as they poked and prodded her. It is stressful thinking of surgery but we are glad it is finally going to get done. We will post more on the surgery as it happens so that everyone can keep up to date. Thanks again for all the prayers and support.
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