We ended our 3F8 very quickly.... I could not believe how fast/slow the week went -- Anne was with us all week in NYC-- we survived room 807 at the Ronald... actually we all got quite good at walking sideways to get to the bathroom.... good thing we were at the hospital for most of the time.. Anne was amazing help-- I had no idea she got briefed by my mom on all the ins and outs of our 3F8 routine.... I was worried she would be queasy or faint on the first day... now I can say she made it without either symptom...! she was a great hot/ cold pack provider... and also a great distraction for me as Grier slept off the treatment... he did have a different kind of pain during the week-- lots of residual pain in his chest and tummy ... especially when we went back to the RMDH... I think I mentioned that for the first time in 9 weeks of this treatment we went back to the hospital after we had been resting at the RMDH for awhile because Grier was just not right... I did not know if he was having trouble breathing or what so we walked back and had amazing help from our favorite NP~~~ Grier was having lots of pain and basically holding his breath a little so it would not hurt... He got some Dilaudid and all was better.....
We did not have much time for fun during the week... Grier was very excited to go to an FAO party that Candleighters NYC put on for the kids.... He also wanted to give BINGO a try one night at the Ronald so Anne, Grier and I walked down and gave it a try--- he had fun... and actually won twice--- he was thrilled with his $6!! Anne and I were feeling lucky so I walked to the corner store and bought us some lottery tickets... really hoping to win the MEGA "whatever they call it"---!!! We did win ... well... we broke even... actually got our money back!!! It was fun... but not as much fun as we had laughing over the fact that we ordered Pinkberry frozen yogurt to be delivered to the RMDH--- Let's just say it was good but not so frozen since it took an hour to get to us---
By Friday morning we had a great routine down... Anne was great at holding Grier while I gave the G-shot.... and getting medicine from the 2nd floor as we got ready to go to the hospital... we had planned to fly home Friday night and this was something I usually don't do unless we were going with corporate angels ( which has not happened in FOREVER)--- We were told earlier in the week from one of the doctors that she does not like patients flying after 3F8 on Fridays.... but I explained to her that Grier was suppose to throw out the first pitch for Dilworth Little League's Opening Ceremony and she said since it was a late flight... we should be good-- She is a huge baseball fan too... Anyway.... we knew we would be at the hospital most of the day and that there was no time to wash sheets etc... before we had to leave for the airport-- so Anne took the sheets and towels across the street to Reliable Laundry --- such a great help... because they were done and folded by the time we got back to the RMDH around 1pm--- all we had to do was repack the Box that we store and clean the room--- Grier was asleep and pretty drugged... he slept while we prepared to leave--- We ended up leaving the RMDH around 4:30.... not knowing what traffic was going to be like getting out of the city... Anne's flight was the same time as ours but she was flying Delta so we shared a taxi to LaGuardia--- that is where the fun began..... Grier was still pretty out of it and not feeling well as we got into the taxi--- we were almost to LGA and Grier started to feel like he was going to be sick.... I had a "bucket"... and was holding that while Anne was going in my medicine bag and getting the nausea medicine for me --- meanwhile speeding our way to the airport--- who knows what the taxi driver was thinking.... Before I knew it we were at the US Airways drop off and Anne and I said the quickest goodbye and got ALL of our stuff out of the cab and off Grier and I went--- He was in the stroller at that point ... very green and weepy... we made it through security... and our gate and finally after home around 9pm--- The week flew by and by the time the weekend was over it was hard to believe that we had even been in NYC for a week--
Saturday morning came really fast at our house..... Grace had an 8am soccer game... we had opening ceremonies for Baseball and then another soccer game followed by hayes' baseball game.... really.... I am not kidding.... and life seems to be going at that same pace since we got home.
Today I have been trying to schedule Grier's quarterly work up--- GULP..... yes.. it is that time again.... I also had to call and make an appointment to have his HAMA test done here in Charlotte tomorrow--- I was really hoping we could combine 3F8 in June with his quarterly work-up but that is not longer allowed anymore.... since so many kids have relapsed in the middle of 3F8 ( also it would be a little longer that 3 months and our Dr said no-- since we are dealing with relapse we need to been on the 3 month schedule)... So, we are back on our monthly trips to NYC--- the hardest thing about that is that it is hard to get in a routine at home and travel every 3-4 weeks-- I really need 7-8 weeks to get anything done!!! And I really want to let Grier finish preschool--- but guess what..... it is not up to me so we will head out in May again.... You would think after three years of living like this I would be used to it--- but I am not....
I hope this update made sense--- it has been crazy around here... I have had several people tell me I look tired.. seriously.... I am not tired.... ha!ha! I am going to make myself update tomorrow after I go to the Cookies for Kids Cancer Bake Sale meeting that is going to be held at Taylor's Finish Line Festival--- it is going to be an awesome event and 100% of the money from the BAKE SALE will go to pediatric cancer research.... and I mean a check will be handed to a doctor that has a trial that needs funding..... :)
Thanks for the dinners that were brought while we were gone--- also thanks for the carpooling help to school, soccer, art , and baseball---- Thanks to Maclean for entertaining and baking with Grace-- and Stuart for just hanging with them after school--- :) Also thanks to Jeanna for letting me use your wi-fi card--- it was a great help since I never got my password at the RMDH-- and for the mail.... :)
enjoy some of the pictures on gogriergo.com---
No comments:
Post a Comment