Today started very early at 6 am when I had to wake Daniel up to eat. Due to scheduling that was done months ago and probably not in the most ideal way Daniel would have to be NPO which meant he could not eat anything 8 hours before his bone marrow aspirate this afternoon. Not only is it really difficult for Daniel (or most teenage boys) to go without food all day but Daniel had all morning Neuro -Psych testing this morning in which it is highly recommended that he have a substantial meal before such a intillectually demanding test. Hmmm, kind of a flawed day as far as the scheduling lottery but again this was the way it played out months ago. So I woke him up to eat at 6 in the morning and he was not very happy with me. He threw down some "mancakes" which are these protien pancakes I found for him that he likes and are pure protien ( hey good name) and then went back to bed for an hour. He woke up and we were off for a full day of testing. First on the agenda PFTs. THis is Pulmary Function testing in which he goes in the box. He has to blow in the contraption that measures his lung capacity. I can't even count how many times he has done this test. I don't know how he feels about this test. He has don't this one more than normal amounts because of the CMV pnemonia and they have checked and rechecked more times than I would like to remember to know that it is gone for good. Remember all of this testing is happening to get baseline measures again because he is just about at his one year check. THen he had 3 hours of neuro-psych testing. While he was in with one doctor I was with another answering the same questions I did a year ago then filling out booklets of questions and form after form on his progress and current status. It took me just about the same amount of time to fill my papers out, except I got to go down to the coffee shop and get something to eat. I knew he was starving at this point. By 12 he came out of this appointment and we went directly to Endocrinology which was a new office. Wow. Never been to this one. We met a new doctor and REALLY liked her. had a great check up but found out that as expected that while Daniel's body was working hard to survive the year of cancer and transplant it was not working on growing bone. He did grow in stature and through puberty phases which is great but he did not grow bone density and has Osteopenea. This is something that he can improve Thank goodness and we will have to work on. He has some new goals now and we rushed down for an added exray to see his growth plates to see if there is any hope for a few more inches. I know Daniel is really waiting to hear the results of this test. He is hoping hard for this one to come back positive. Hey Daniel have you seen your parents- I think you are doing just fine, don't be so greedy. we said a very quick hello at the studio and were sad that he coulldn't do a show today. There was so much to talk about too because of alll the great football events of the weekend but we were now running so late for our afternoon appointments starting at 1pm. Up to the 7th floor and the big FINAL Bone Marrow Aspirate. Daniel had to go stop and show some photos to a few of his favorite fans in the clinic and of course there was Bob and that was it. It was all over. There goes any productive medical talk. All prep got done for the next hour somehow as the two boys gabbered on about football this and football that and before you know it Daniel was sedated an hour later and having his procedure and I don't know how it happened. Bob has been a lifesaver for almost 18 months and not a day goes by that I am not thankful for him. I know he knows this. And thank goodness he was there because he helps me to breathe when I realized that I was then there standing alone during the biopsy and he assured me I was doing fine when I asked him if I would be able to breath or sleep until the results came back and he told me that I was just like every other parent with the exact same thought that the results were not going to be okay. And I was waiting for the other shoe to drop. He said I was either doing fine or hiding it better than most. Thank you Bob for making me feel better than I really do because in the 10 minutes that the biopsy takes It seems like forever and in the 24 hours it takes until the preliminary results come back and I don't breath I will try my best to remember your kind words. WhIle Daniel woke up I thought about how this will be his last biopsy (hopefully) for a year and that G-d willing this will all be a thing of the past soon. The doctor came in with some lab results and his numbers were better thn they have ever been which gave me more confidence than before that maybe , just maybe his bone marrow will be perfect tomorrow and the real results will be perfect too. Believe Believe Believe. He started to wake up and he was not a happy camper. He was never this sore from an aspirate before but he woke up very alert. We did however have to sty for the remainder of another hour and a half for his last and final CMVIG or Cytogam Monday infusions. If his labs continue to show negative for CMV he will not need to have these infusions any more. Woohoo. THe bummer is that next week he will be getting his central line (port) out which means poor Daniel will need to be getting his blood drawn like anyone else (every other week or so) to check his blood. If he were to need an infusion or any kind of treatment it would need to be by IV. Now people do it this way all the time and it is a trade off I know he would rather deal with for getting the line out of his chest, so I am sure you will hear no complaining from him. He was finally awake to take something for the pain and have a little something to eat by 4:50 P.M. phew Long Day INDEED.
Daniel's choice for celebration dinner straight to Elways for his favorite soup. Somehow he seemed to sneak in shrimp cocktail, salad crab legs and smores.
Daniel's choice for celebration dinner straight to Elways for his favorite soup. Somehow he seemed to sneak in shrimp cocktail, salad crab legs and smores.