Well we started the week with a minor setback. When we got to the city on Sunday and went to check in at the Ronald McDonald House we were told that they didn't have a room for us. Somehow they made a mistake and had us on the schedule for arriving the next Sunday and it being a weekend they couldn't call our social worker (reservations can only be made or changed by your social worker at the hospital) so there was nothing they could do for us. Even tho it was their mistake! Boy were we PO'd. We had to call the social worker on call to try and make other arrangements until our own social worker (Diane) could be reached on Monday. Thankfully we were able to get a room for the night at the Helmsley Medical Towers which is only a few blocks away. (Bill and Lauren had stayed here once before and the rooms are really nice but the cost is 10 times that of RMH!)
The next day Diane straightened out the problem and we were able to move back to RMH in the afternoon after Lauren finished her antibodies. I had 3 weeks worth of stuff to move, no car and a drugged little girl so two child life volunteers from the clinic helped me walk all the stuff over. Thanks guys!
Lauren is now halfway through her antibody round and had a pretty tough week pain wise. The last two days we had to give her an extra dose of pain med (dilaudid) to make her comfortable. But she's been doing great otherwise. Since she doesn't have to get the gm-csf infusion before the antibodies anymore our time in clinic each day is much less than before. Now we're back at RMH around noon (instead of 3 or 4) so Lauren awakes from the effects of the narcotics much sooner and gets to enjoy whatever is going on in the evening.
On Tuesday she learned how to square dance. Boy did she have a blast! She also serenaded everyone in the room with a few verses of Old MacDonald Had a Farm. On Wednesday they had a BBQ out on the terrace with crafts, lots of food and a fiddle band. Again, Lauren danced up a storm. Then on Thursday they had Christams in July. After a great Italian dinner, Santa came to visit all the kids. Each child was called up one at a time, got to sit on Santa's lap and was given a huge stocking full of stuff. Lauren wasn't shy at all. She jumped right up on his lap, hugged him and then asked him where Rudolph was!
It's really amazing all the stuff they do at RMH for these kids and how special they make them feel.
We'll be heading back to the city tomorrow and hopefully this week of treatment will be a little easier for Lauren. She'll be having some of her 3 month scans this week too. Bone scan on Tuesday and bone marrow aspirates/CT scan on Wednesday. The MiBG scan and VMA/HVA (urine) will be done the following week.
Oh, one other thing... Memorial Sloan Kettering has revamped their website and added a new part called Pediatric Cancer Care. A photo crew had been in the clinic in April taking all kinds of pictures for possible use on this new site. Well I just found out that there is a picture of me and Lauren on it! Check it out -
Click here MSKCC - Pediatric Cancer Care to go to the site. Once there click on "When a child has cancer".
As always.... Thanks for checking in on us and please say some extra prayers for clear scans!
