| April 12, 2004 Monday Day +39 of Transplant By Friday taking the liquid oral chemotherapy medication was still a problem. I called Mary at the clinic and of course she came through for us again. She spoke with the pharmacist at Diplomat Pharmacy and they were able formulate it into a capsule form. Now she takes it with no problem. Thank you Diplomat! We had a wonderful Easter weekend. Andy's parents (NaNa and Pop-Pop) arrived Saturday afternoon and we spent the day making cookies and coloring eggs. It was so much fun! Paige was very excited when she awoke Sunday morning to see that the Easter bunny had eaten the carrots she left out for him. Of course she loved all the candy and toys too. Andy and I went to church while Nana and Pop-pop stayed at home with Paige. We would have liked to take her to church, but exposing her to that many people is out of the question right now. Later that afternoon Grandma, Aunt Carla, Uncle Tracy and Ashley came over for a wonderful dinner and we also celebrated Uncle Tracy's birthday. It was a memorable day. Paige is feeling good. We haven't noticed any side affects from the oral chemo as of yet. She was due for labwork today so we drew it off her line and Andy took it to work with him this morning. We are so happy to be back at Hurley :) Andy will take her blood in for labwork on Monday and Wednesdays, and then on Fridays we'll go in to clinic for her to be seen. No word yet from Ann Arbor regarding their decision for surgery. We will call tomorrow if we don't hear from them by later afternoon. The reduction of this primary tumor could possible affect the success of the MIBG therapy. The thought of putting Paige through a big surgery like this makes us cringe, but we realize we're on borrowed time until we find a different treatment. Our wonderful co-workers at Hurley have organized an "Ice Cream Social" for Paige on Wednesday, April 13th. Local companies donated all the needed supplies (ice cream, plates, napkins, etc.) They told us about it last week and had apparently been planning this since Paige was in Ann Arbor for transplant. At first we didn't know what to say. What an unbelievable feeling to know that so many people care so much about us. It's overwhelming to say the least, and we are truly grateful for everyone's generosity. Please know that any donations we receive are being used directly for Paige's medical related expenses. While we realize how fortunate enough we are to have great insurance like Blue Cross, the co-pays and travel expenses quickly add up. When Paige was at transplant there were many wonderful people at Hurley who contributed to a collection that we applied that to our hotel and food expenses. We are so grateful and sometimes it seems as though thank you is not quite enough. Thanks for taking the time to check on Paige and we'll update in the next few days. Much Love, Andy, Sandi & Paige |
| Labwork 4-12 WBC 2.2 (2,200) Hemoglobin 10.2 Platelets 168,000 ANC 900 |