Day 128
I noticed that St Jude has once again scheduled Jesse to see the doctor at the same time as my staff meeting. I could feel the anger rising. They have no regard for the fact I would like to work. I sent them a message asking to have the time moved to 9:30 or 9:45.
The message a received in return further cements the prison feeling. The writer told me they try to accomadate the time I have asked for. Really you do? Then why do you keep scheduling over it like it is nothing. Then she told me this was the first time this has happened. Overall it was a pretentiously rude email encapsulating the attitude we have received while here.
I know the people here think that they are doing great works, but they totally lack empathy and fail to have a full understanding of what families are going through.
Wednesday evening we went to Emileigh’s softball practice. Then Emileigh and Landan spent the night with us so they could catch the bus with Chris and my Mom in the morning.
Day 129
Jesse and I headed to clinic at CHKD. Turns out Jesse need blood because her red blood was 7.8. Our home clinic nurse told Jesse she was sorry to keep her away from home. Jesse looked at her like she had made the strangest statement. Then she responded with “But I am home.”
Plus at CHKD, people stop in to see her. The social worker was really nice to spend several hours with Jesse each time we were there. We don’t see that kind of service at St Jude. St Jude treats me as an obstacle in Jesse’s care. CHKD treats me like a partner in her care.
By 3:15pm, we were on the way back to Williamsburg. We skated in the door fast enough for me to grab a shower and head out for Chris’ softball practice. It was so nice to be able to be there watching her practice. Her Uncle Tommy and Aunt Debbie help coach the team. Plus her cousin plays on the team. Chris’s uncle coached Mike when Mike was 4. I think this will be a good experience for Chris in learning to pay attention.
Thank you Mom for staying at the house to get Chris off the bus.
Afterwards we took the kids all to Chili’s in Williamsburg. Definitely no place like home. So good to eat there.
Day 130
Jesse and I put the kids on the bus. Then I did some work while she played. In the evening, we hung out around the house. The kids played outside and inside until everyone zonked.
Day 131
In the morning, Mike had to work. Melinda and I took the kids to Honey Butters. Yum. Someone was extremely nice and paid for our meal. The restaurant didn’t make it clear if it was them or someone else in the restaurant. We are very humbled by the graciousness.
We ran some errands, then I returned home to finish packing. I packed only to hopefully have to stay at the prison for Round 6. I am really going to push for Jesse to be home for recovery. I noticed a significant difference in her eating at home. Also instead of sleeping till 10am because she is in the dark here, she got up by 7:30 or 8. I think access to natural sunlight is huge. Along with access to her stuff and family.
Also Jesse actually gets a break from the hospital when we go to CHKD. We aren’t dragged in everyday.
In the afternoon, Mike and Jimmy took the kids fishing. From the sounds of things, it was quite the event 🙂 Melinda and I rented kayaks. We rode up to the hole in the wall (the bridge on the Colonial Parkway leading to Jamestown Island.) We tried to ride into the James River, but it was too rough for us.
Day 132
7am came way too fast. Mike and Chris took us to the airport in Newport News. For some reason when we checked in the counter couldn’t get Jesse and I on the same seat for the flight from Charlotte to Memphis. The woman was extremely apologetic because she could see Jesse’s condition.
We left Mike and Chris at the checkpoint. Luckily there was only 2 other couples going through behind us because the ice bricks I was carrying to keep Jesse’s medicine cold caused an extra security check.
Our tickets put us at the back of the plane. I have no problem with this because we can get off the plane last. Plus our layover in Charlotte was 2.5 hours. I am okay with that too because I can get Jesse something to eat.
After grabbing a bite in Charlotte, we sat at the gate waiting for the clerk to arrive. She came about 45 minutes before the plan was to borad. As I walked up to the counter, there was a lady at the counter on the phone and a man behind her.
The clerk called the man to come up. He motioned to the lady on the phone being there first. The clerk was obviously ticked the woman was on the phone because she was short with saying she was on the phone. The man was asking for seat assignments because his ticket had none. The clerk testily replied the plan was full and she couldn’t guarantee anything.
By this time the woman was off the phone. She asked the clerk her question, received a curt answer, and then it was my turn. I started with asking to be seated with my 5 year old daughter because Jesse was in row 9 and I was in 20. The clerk responded with even though she was 5, she couldn’t change the seating. I don’t like playing the cancer card, but I know Jesse would be traumatized to sit without me. I looked at her, “Ma’am, we are going to St Jude for her final chemo treatment. If you want to leave her in the other seat I can give her seatmate her medicines to take.” That seemed really effective in getting the seat changed. Why make things so difficult? And why do airlines, who can see her age, seat her separately from me?
Our descent into Memphis was bumpy because of a thunderstorm, which did cause us to skid on the runway a tiny bit. People on the plane were complaining about the crazy weather in Memphis lately. I think its a sign we don’t belong here. As we were deborading, a gentleman gave Jesse a pin for the US Secret Service. I could tell that he’d wanted to talk with us when we’d boarded.
While we were getting our luggage, I called the cab company. The last time I got a cab from the airport, the man drving acted like it was the biggest hassle, and we had done the wrong thing. Funny enough we ended up with the same guy, who told me that since we had the voucher from St Jude I didn’t need to call. Can’t win.
Also waiting on luggage was a bone marrow transplant nurse. She mentioned that hopefully we would not run into her. I told her actually next week we might. Those nurses are the ones that give Jesse Mike’s natural killer cells. She agreed with me on getting Jesse home. And I learned from her that kids on steroids might be carrying viruses and other stuff, but the steroids mask it. Also parents bring in siblings who are sick all the time. I learned this because I told her I was disgusted by the tour groups coming in. Isolation I think is keeping Jesse safer. I would hate to see what would happen if we had been out and exposed to more stuff.
Isolation rooms are full at St Jude, so we have been placed on the second floor. They have totally messed up! I have access to 2 huge windows. Jesse wants to me get her a pizza card for dinner tonight. I have noticed to that since returning Jesse has begun to complain of pains again and being tired. I can understand the tiredness from traveling today. I am wondering if she is sliding into “sick” mode.