I want to start by apologizing for the long delay in updating Julia's site. It has been a very busy few months. Things have been very up and down and we have been very busy trying to get Julia back on track. We have had numerous follow ups and are trying to get her stable on her immunosuppression drugs. Quite frankly I now believe in post traumatic stress. I think I am feeling more now then when we were in the hospital. There are days I can't believe what happened. There are days I realize how close we came to losing her. There are days I realize how much time I missed with Anthony and Emily. There are days I just want to forget everything and not think or talk about it.
We are really feeling the impact with Anthony. He is so emotional, angry, confused, and insecure. It has been very challenging trying to take care of Julia and also trying to sort things out with Anthony. Unfortunately Anthony is still having to take a back seat while Julia continues to be front and center. Anthony has been effected more than we ever realized.
Overall, Julia is doing very well. She feels good and is now back at school. She is loving school and enjoying being able to do normal things. She has had weekly visits to the hospital but doesn't seem to mind since she knows she gets to come home. Her scan which she had in early October was unchanged from the one in July. At this point doctors were ok with that and decided to remove her line and keep a close watch. She will have a follow up scan in January to make sure things are ok. She continues to get monthly antibody infusions to help prevent relapse. For now we wait, watch, and pray.
Our real battle has been from a heart transplant side of things. We are having challenges getting Julia at the right level with her medications. She continues to be on steroids until we can be sure it is safe to take her off. At this point we do not have a good plan and are working with doctors to determine what is the safest thing for Julia. We need to protect her heart but at the same time we are trying to avoid causing a relapse by keeping her over immunosuppressed. The steroids are not the ideal thing to be on with regards to the PTLD. We have had multiple plans but they keep changing weekly. Our latest plan is to keep her on the steroids until January and then start weaning her and biopsy her in February.
Julia started having severe leg pain about a month ago and was unable to walk. The immediate fear was a tumor but after testing that seems to be unlikely. Her x-ray did show some damage in her left knee and a growth discrepancy between legs. She had an MRI last night and we are awaiting results. It was a 90 minute MRI and she was so brave until they had to poke her for an IV and then she freaked out. It is so hard to see her so scared and fed up with all the poking and prodding. As a parent it is so hard to see your child suffer and not be able to help. I can't make them stop because she needs to have these tests done in order to make sure she's ok. Last night I really just wanted to pick her up and tell everyone to leave her alone. Once we got home she was fine and had already forgotten about the pain. Thank god she is so tough and can easily brush things off.
Like I said earlier I really apologize for not updating sooner but emotionally I am feeling so overwhelmed right now. I am consumed with Julia's care and so scared of missing something that all I do every night is go through all her test results. I feel like I am second guessing myself some days and I don't know if I am coming or going. At this point maybe I need to go on meds!!!!
I promise to keep you all updated sooner.
I want to thank all of you for your on going support it really means a lot.