I hope I didn't scare anyone because you haven't heard from us in so long. Everyone here is fine. Lauren is looking and feeling great. Things have been a little stessful though as we are in the middle of a major renovation project. It's been tough because we're living in about 2 1/2 rooms while the rest is being redone. We added a floor to the house in which the bedrooms will be and Timmy and Lauren's rooms have been combined into a family room. It's about halfway done now, with the insulation & sheetrock/walls finally going up this past week. Up til then it was like living in a huge tent. The kids are really excited though and can't wait to pick out new colors for their new rooms.
Lauren completed another round of antibodies mid October. This now makes 13 rounds. As usual she did well but is now getting tired of doing it. She still had quite a bit of pain and in areas other than her "usual" back pain. Thankfully she managed to keep both her iv's in for each week. The second week we barely squeaked the last day out of it. We also did her scans this round. And for the first time ever Lauren did all her scans awake. That is a huge feat for her. especialy for the PET scan in which she had to lay perfectly still for 25 minutes. We were all so proud of her.
The Ct scan, PET scan and urine markers were all fine. Yeah! We didn't do bone marrow aspirates/biopsies this time. On the day we were scheduled for them they had to cancel. Lauren never likes getting them because they hurt (a deep poke in each hip front and back) plus it's more anesthesia. So since she's now 2 years NED and never had bm invovement I asked if we could skip them this round. Dr Kushner agreed and even went one step further saying she probably doesn't need BM's any more period! Lauren told him she liked that idea! At the end of this round Lauren also got an MMR vaccine. Her first live (well modified live) vaccine since diagnosis. The nurses were so happy. Not happy to give her a "poke" but happy that she is doing so well and that she is at the point where her body can handle this. Unfortunately Lauren did not share their joy.
As with all our trips to the city, Lauren had a great time at RMH. We got to see quite a few old friends on this trip. On the day we were to check in we went down early to attend a big party for all kids that had been treated for Neuroblastoma at MSKCC. It was great to see so many kids that had/have this cancer doing well. They put together a slide presentation with a lot of the kids' pictures. Of course when Lauren saw herself she shouted out "hey, that's me!" Everyone had a good time with plenty of food, treats and catching up with each other.
Over the two weeks RMH had a few Halloween parties and yummy dinners. The last night there Lauren and I took a ride over to the big Toys R Us store at Times Square with Nick (another little boy getting antibodies) and his family. We all rode the ferris wheel and then did some shopping. Then we met up with Robyn and her family (who are here from England for nb treatment) and all went out to dinner. While we all love the RMH it was great to get away for a night. The two nights before had been really sad for a lot of us at the house. A good friend of ours, a little boy named Dreau had passed away on Tuesday. His mom and I had become good friends over the past year and it was very hard to say goodbye. I know it wil be hard for me when Lauren and I go back for her next round in December and they won't be at RMH anymore.
Lauren was happy to be home in time for pumpkin picking with her preschool class and for Halloween. On the weekend in between antibodies we came home for the annual trunk or treat at Timmy's school. (Cars park at the school and decorate their trunks or trucks then the kids go trick or treating from car to car.) The kids had a lot of fun and Bill won "most creative " trunk. This year Lauren dressed up as a "butterfly fairy" and Timmy was something gruesome in a black hooded robe. (once I get my computer working I promise to scan some pictures). On Halloween Jen and Devon joined us for trick or treating. Lauren made it to about 5 houses before she was too tired to walk anymore and rode in the stroller the rest of the way around the block. She stayed awake long enough to eat some pizza before crashing on the couch. It wasn't really that late so I figured it must have been all the excitement that pooped her out.
Well the next morning I had to go pick her up early from school because she was running a fever of 102. She was very upset that she had to come home because that meant she would have to miss the costume party at her CCD class at church. She was not a happy camper. She asked if we had to go to the hospital because of the fever. I told her No, since you don't have a line anymore - you get to be a normal kid and take Motrin, get under the covers in mommy's bed and watch TV. Well by Saturday morning her temp was up to 104 and by evening 105 so I called her pediatrician. The doctor was pretty sure the fever was from the MMR vaccine she'd had 8 days before but given Lauren's history she didn't want to take any chances. She sent us to the hospital for bloodwork & blood cultures. I felt bad for the lab tech at the hospital. I had warned him that Lauren's veins were hard to hit plus she was a little dehydrated so that made it even harder. Finally he got one in but it turned out to be in an artery instead of a vein. I told him blood is blood, use it cause we're not poking her again. He agreed and said she was the hardest kid he's ever had to draw from. Her CBC turned out fine so we were told to watch for a rash (which would mean it was a reaction to the vaccine). If no rash then we had to come to the office on Monday and probably do more bloodwork. She ran 105 all day Sunday and finally late Sunday night she started getting the rash. I was never so happy to see a rash. The fever finally went away Monday afernoon. It took a few more days but now she's back to her normal bouncy self.
Lauren had a checkup & HAMA blood drawn at the Valerie Center on Thursday. It was great to see everyone there and they all commented on how great Lauren looked even though she made it quite clear that she didn't want to be there. She is definitely getting tired of all of this treatment stuff. For the first time I had to actually restrain her for her blood to be drawn. She never likes having it done (who does?) but she would always get on my lap and do it. This time she flat out refused. When I put her on my lap she started kicking and screaming that I had better let her go. We managed to get the blood on the second try and she calmed down about 15 minutes later. She made me laugh on the way home. I told her I understood that she didn't want to do this anymore but we only had two more rounds to go so only two more HAMA draws and then we're done. She was quiet for a minute then said " only 2 more? ok mom, I can do that, I think I can hang on for 2 more" I laughed but I really want to cry. I think we're all about ready to be done. We have some doctor appointments coming up the next few weeks (eye dr & orthopedic) but thankfully no more blood draws.
Lauren got to see one of her best 4 legged buddies last night. We all got together at grandma's house for dinner to celebrate some birthdays (Timmy's, mine & grandpa's) and Aunt Nean brought Molson for a visit. Lauren knew he was coming and that's all she's talked about for days. Between running around with Molson and trying to keep up with Timmy & Elizabeth she was so worn out she fell asleep before we even got out of the driveway. Just before she fell asleep she asked if Molson could come over for a sleep over when the house is done.
well I think that catches everything up and I will do my best to get back on track with these updates.
As always thanks for checking in on us, for staying with us on this journey & for keeping Lauren in your thoughts and prayers. It really means a lot to us.
