Mother’s day was wonderful. We stayed at Long Island Saturday night, and I made cakes with Dylan and Thomas. The boys had so much fun. Then on Sunday morning Dylan gave me his present, a beautiful glass angel. Dylan had asked Rebecca to buy me an angel for Mother’s day and she dropped it off Saturday morning ready for him to give to me the next day. I am trying not to analyze the reason behind why he chose to buy me an angel. It made me cry…as usual, again! Bec had chosen a card for him, which was the Empire State building, very appropriate because both Dylan and I love that building. The words inside said, To Mum haatty mothers day I hope xou ha good day from Dylan. Then Greg & Lynn gave me a card with a voucher for a manicure/pedicure! On my next trip to Long Island I will leave Dylan with Greg and Thomas, while Lynn and I go to the salon with my voucher. Dylan enjoyed Long Island, playing on Thomas’s swing set and baking cakes. Dylan’s energy levels are much better on the TPN. I must admit, I am nervous keeping everything so sterile while I hook him up to the I.V pump, but I am getting more confidence as the days pass.
Today’s weigh at hospital is 15.6kg! What a big jump from 13.2kg last week. Dylan’s counts are dropping though so we stayed for a blood transfusion and he had another shot of GCSF in the leg (he screamed). The TPN will be adjusted to suit his blood test results, potassium will be decreased and they will change his TPN from 20 hours out of 24 to 18 hours out of 24. So that means he will have 6 hours of freedom each evening. By Wednesday he will most likely need platelets. The doctor also started Dylan on Folic Acid once a day. The diarrhea has settled down now, since Saturday he has only been going once or twice a day. The scan date has changed to Thursday at 11am. So we have tomorrow off, then back Wednesday for blood tests at 8am, then the MIBG injection at 2pm, Thursday scan and Friday we will have more bloods tests. Friday we should also find out the results of the MIBG scan, and what the next step is with Dylan’s treatment. I’m anxious about the scan, which I guess it completely understandable. If the scan shows a decrease in disease I will be surprised. My heart tells me that the Irinotecan has done little, but I am confident that if we start MIBG treatment as the next stage of treatment, that it will do the trick. . Dylan’s eating habits are driving me crazy though, he’s off mayonnaise rolls this week, so now it’s white rice with Chinese sauce from the beef with mushroom dish! So he gets the rice and sauce and I have to eat the beef and mushrooms with no sauce or rice! It’s been 4 days now for lunch and dinner, I am so sick of eating it!!! I told the nurse that the appetite stimulant is working good but now I need a drug to give him so he will eat anything I want him too, she just laughed at me. Tomorrow’s weather is supposed to be warm and sunny, so we will stroll down to Central Park and wander around there for the day, and watch the roller bladers, squirrels and boats.
There seems to be an issue with the "Guestbook" at the moment. I have lodged an inquiry with Caringbridge and hopefully it will be back up and running by the time I check it tomorrow!
