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Summer
By Margot | July 29, 2009
This week has finally felt like summer for all of us. Sam’s leg pain seems to have dissapeared. He went to basketball practice on Monday night, did a waterballoon fight on Sunday and did tennis yesterday.  All of this has been interspersed with a lot of swimming.   Counts seem to be holding up all right. ANC was 900 on Monday morning.  I gave Sam his nuelasta shot today so if we can make it a few more days without bouncing back in, we should stay out of the hospital until we go to Philadelphia – crossing fingers, knocking wood. LDH was over 1000 on Monday and VMA/HVA last week was in the 40’s and 50’s -where it’s been hanging for the last couple of weeks. Hopefully it will drop this week some. We don’t have Monday’s back yet. Dr. Modak did call last week and confirmed that the San Diego scan was an improvement over the MSKCC scan and that there was a response to the TCV.   So good news on that front – though it was still a lot of disease.
Sam is very excited to play in his basketball game on Saturday. He did so well in practice. He just amazes me. I was worried how the kids would react because he hasn’t been to practice or a game in three weeks and as soon as he walked in the gym, his coaches and his whole team yelled out, “Sam!” It made him smile.  He did well in the scrimmage and made three baskets. I think that made his summer.
We have figured out our Philadelphia plans. Neil and Sam will fly out together for two short trips and I will stay with Charlie and Andy and then I’ll meet them out there and Neil will fly back to be with the boys. Then Sam and I will stay from the 21st through the 31st and then fly back. We can do the stem cell infusion at Childrens LA so Sam will get to go to his first day of school and will not have to be on an airplane that day.  I cannot thank the Starks enough for their help with airline miles, it is such a huge huge help. Charlie and Andy are going to stay in San Diego because we just couldn’t figure the logistics of getting them out there and back for a few days at a time. The longest time we will be there will be the time Sam is in isolation and no one under 18 is allowed in. So the boys will stay here with their friends and camps and Neil and I will switch off in Philadelphia. We’ll take Sam to some Philly’s games and visit with people and show him a good time.
I am sometimes overwhelmed at how earnest he is – how hard he tries at everything. I know he’s not superhuman and he’s not perfect by any means but for all he puts up with, just to even keep up with the other kids at sports and school is a mean feat.  The boys started a reading class at UCSD and Sam refused to go initially. It took yelling, cajoling, bribing just to get him to walk through the door. He was in tears when he walked in. I’d promised I’d stay with him so I sat in the row behind him. Once he sat down though the teacher was great and very engaging and he really liked it.  He said he doesn’t want to miss any of the classes.  The chapter in the book they were reading was about doing something hard and not giving up and the kids had to have partners to talk about a time when they had to do something hard and how they handled it. Since we were late the teacher was Sam’s partner so he said, Sam, “Has there ever been anything hard that you had to do?”   It was sort of a funny question given Sam’s summer so far. Sam said, “Well, I have to go to the hospital a lot.”  The teacher asked, “How do you handle that?” He said, “My Mom and Dad help me and my friends and my brothers come to visit me.” Â
Andy is doing well. He’s been tearing it up on the basketball court. His reading class is on Sunday after Sam’s. I promised Andy I’d stay with him as well. It was two hours long which is sort of long for him. He dropped his pencil and his book about fifty times and kept scooching around in his chair.  If there was a record for fidgeting he would get it. The teacher said he read really well though. When I asked him how he liked it he said accusingly, “no lunch and no recess, Mom.”
Charlie is still dressing up in his soccer uniform daily. He’s really swimming well and has turned the corner on swimming in a big way this summer. He’s wearing big boy underwear today so we’re crossing our fingers on how that goes. He told me, “Mom, I’ll put them on if you’ll stop asking me.” How’s that for a hint on how much you’ve been nagging your child about something?
Saturday is Neil and my 11th year anniversary and Sunday is Neil’s birthday. Then next Saturday we are having Charlie’s 3rd birthday party. So for the next week out of the hospital (please) we are going to be living large.
Margot
Topics: Progress Reports | 10 Comments »
July 30th, 2009 at 12:35 am
Bless Sam’s little heart- he is such a sweet boy! Happy Anniversary and happy Birthday to Neil and Charlie! Again, any weekend you need a rest or a date with Neil we have a WII and many “boy games” so let me know. We can take them all. Angela (Madison’s Mom)
July 30th, 2009 at 12:37 am
Margot and Neil,
I’m glad things are a little calmer this week. sounds good to hear of Sam on the basketball court having a good time. I continue to pray for Sam’s healing and success in Philly.
Happy Anniversary Neil and Margot, Happy Birthday Neil and Charlie.
Aug 9th we will celebrate Melina’s 13th birthday and Aug 12th mine and Joe’s 20th wedding anniversary. August is a busy month.
Thinking of you all
God Bless,
Lisa Riniolo
July 30th, 2009 at 1:03 am
Order in the midst of chaos…
Such normalcy…Sam is my hero.
Much love from Abby, too.
July 30th, 2009 at 2:03 am
So glad to hear that you guys made it thru the outpaient week. Happy Anniversary & Happy Birthday Neil & Charlie!!!! I owe Sam a day at Soak City-do you guys have any time before the trips??? Also- we’re happy to have Andy & Charlie over when Margot & Sam are in Philly-just let me know what works for you .
July 30th, 2009 at 2:19 am
we will be toasting you when we celebrate our 11th Saturday night as well. Patrick and I will only be in Philly one night – Wednesday, the 12th – I would love to catch up with y’all and have dinner. We are on the waiting list for the RMH. Please call or text me if you feel like it 404-276-7405.
Thinking about Sam!
Erin
July 30th, 2009 at 4:04 am
Margot and Neil…
Your East coast cousins are here to help however we can. A place to stay, the use of a car…lots of kid cousins to show Sam a good time…(Bill, Martha, and Laura all belong to a neighborhood pool if Sam likes to swim).
Whatever you need. Just ask if there is something else we haven’t thought of that would make your lives any easier.
Love, Pam
Happy Anniversary!!
July 30th, 2009 at 4:34 am
I just adore you guys!! Do you realize just how much you remind me all the time to keep on going?? to never forget to play and live along with the fighting… you all are amazing and I am very very honored to get even this slight glimpse into your lives… keep living large!!! know you are loved lots in Tn!!!!
rhonda dudley
July 30th, 2009 at 5:36 am
let us know if you need anything while at children’s LA. you have a place to stay or just hang if you need it. our house is always open.
dianne and vincent
July 30th, 2009 at 4:57 pm
Just wanted to say Hi and let you know I am still keeping up with you guys! I may be in Philly visiting a friend in August would love to see you guys. ill let you know if/when ill be there and maybe i can stop by and give you a hand. enjoy your week!!!
July 31st, 2009 at 3:16 pm
Margot,
Sounds like you are living in the moment which is so AWESOME!! Happy Anniversary and Happy Birthday to Neil….praying as always.
With Hope,
Abra