Topsail did not disappoint last week.... the kids spent their days riding the waves and swimming, celebrating birthdays ( Anne, Grier, and Hayes').... and just hanging out. That is one reason we like to go is there is not much to do other than enjoy the beach. We also watched a lot of the world cup soccer games and the college world series ( Go Carolina Gamecocks-- if you haven't heard the story about Bayler Teal-- you should google it... really nice).... occasionally some really bad TV too-- like Wipe-Out.... Dinner was eaten around the table every night and Grier HAD to say the blessing every night. He would wait until we all were quiet and holding hands before he would start.... it was the same every night... "Oh, the lords been good to me... and so I thank the lord for giving me the things I need the sun and the rain and the Appleseed....The lord's been good to me--" Yes... Johnny Appleseed ~ but this year I could not help but think he could be asking or complaining about all he has been through in the last month or really the last 3 years.. but he doesn't.... he just goes with the flow....
Our Topsail weeks have always involved lots of friends too.... and this year was no different. Anne, Sawyer, Mac and Susanne made the trip for most of the week. We love to have them around.... And on Friday, we had a visit from my college roommate, Kristie and her husband and son--- all the kids played well together and had fun riding their boogie boards.... We also made a trip to Wilmington.... the kids wanted to see UNCW so we walked about seahawk country for a little bit--- I am afraid Grier thinks college is all about the "apparel"..... He wanted to go really badly and I was trying to explain that it was not going to be that exciting.... MOM, I want to see your college! So, he went for the first time and as expected.... he had BIG plans for the bookstore.... but much to his surprise the jerseys were non-existent and the ONE T-shirt they had in his size was NOT going to be worn by him.... just not cool enough according to him :) Don't worry he did not leave empty handed... he found a water bottle... and a sweatshirt... but he talked about how they did not have anything for him the entire time at lunch @ SALTWORKS and wanted to go to a different store!
I waited until last Friday to find out the plan for the week we returned.... and I thought for sure he would have started chemo last Monday since we had delayed it for a week to go to the beach (safely)--- but that was not the case. Our doc in NYC wanted to do an MIBG ( nuclear scan) to see how the ICE affected the spot on the hip.... That is a two day process at least... and I did not want to fly to NYC for one scan... if I had a jet in my backyard that would be a different story :) So, I made sure they thought it was OK to do this scan in Charlotte and it was decided it was OK.... that was the only scan they needed to proceed. That was scheduled for Wednesday and Thursday of last week.... Grace was going to be going to tennis camp so the week was a little busy but not bad since I thought Grier was going to be IN the hospital for a few days getting chemo.
Grace had a fun time at camp with Hannah and Ben.... Hayes did almost NOTHING all week... is that what 13 year olds do???? And Grier and I shuffled between lots of medical appointments... He did get to go to a friends birthday party and it was nice to see him in his peer group again..... it had been a long time...
The MIBG scan went OK logistically..... he did really well spending a good part of two days walking all over CMC to get all the procedures done. He did an awesome job of staying still on the hard table while the machine slowly scanned his entire body..... They ordered some extra pictures so it too almost 3 hours-- He impressed the radiology dept. They said more than once that most of their Adults that come there for tests don't do that well without drugs.... and hardly any of the kids they have seen could have lasted that long. He was just happy when it was over.... I was too because it mentally drains you as you talk, sing and do whatever it takes for 3 hours to make sure he is still and comfortable..... We sang the 12 dogs of Christmas over and over which seemed to entertain him for a long time... plus he got to watch a couple of movies during the scan.... but sometimes the scanner would block the screen so the singing would resume :)
Friday was suppose to be our "free day"--- That changed when the phone rang around 10a--- it would have been earlier but I rarely check my messages on my home phone.... ! So, when I was asked if I had gotten Dr. McMahon's message I knew we were getting ready for plan B! He called to say that Grier's MIBGMIBG took so long) but the radiologist would like to do an MRI to make sure --- That is when all the planning took place--- He has not done an MRI without anesthesia before so the clinic was trying to get on their schedule.... that is a hard thing to do.... The first available appt was next Wednesday..... way to long to wait and not know a plan. So I asked what the other options were.... 1) we could try to have him do it w/o anesthesia... 2) admit him and see if he could get it done w/ anesthesia quicker since he was inpatient.... Well.... after much back and forth between different depts... Grier is going to have an MRI today ( Saturday) at 1:30-- without anesthesia.... I am going to sit in there with him and hopefully the jack hammer noise will not freak him out too bad and he will be able to handle the noise and staying still for an hour as they scan his head. The results of this scan are needed ASAP so we can proceed with treatment..... If nothing shows up he will have chemo next week.... high dose CTV (three chemo agents)--- if there is something we will have to regroup and decide what is next-
Along with all our personal medical drama.... our family is sad to tell you that Jeff's mom is ending her battle with cancer. Hospice is caring for her and she soon will be out of pain and at peace-- As you can imagine the stress of all of this is a lot but we are doing our best to help the kids.... We also had a very close family friend that recently lost her battle with cancer. We have had lots of talks lately about angels and heaven and living a good life...... Grier basically has said he does not want to get old.... he would like to stay 6 forever..... because he is not ready to go to heaven yet~ He always knows how to end a conversation......
So.... our topsail week was the calm we all needed to survive the storm that is coming again..... But we have proven time and again we know how to dance in the rain so I know that will be the case in the coming months.
No comments:
Post a Comment