Sunday, February 23, 2020

Liam's Fight with Cancer-New York Here We Come & Getting Settled


 
 
 



 
Hello all we made it to New York! We flew out Saturday about 1pm and had a short layover in Denver before getting to New York. Liam did great on the flight and slept for the 2 hours of the longer leg of our flights. Our bag of trick aka diaper bag with new and random toys and treats worked well the remainder of the time. We were very happy we purchased Liam his own seat so he could be strapped into his carseat for parts of the flight and I think he enjoyed having some of his own space too. We landed Saturday night about 9pm and by the time we got our bags and hiked to where our Uber could pick us up it was just about 10pm. Strangely we were exhausted, even though in our heads it should have felt like 8pm since that’s what time it was in Utah. Regardless we got to the Ronald Mcdonald House just after 10pm. Guys I love New York, mostly in pictures. The traffic, how small everything is here, and the inflated cost is just too much for this simple girl who likes her space. Our Uber from the airport was over $50 and then we ordered burgers for dinner and they were $40 but at this point we didn’t care we were exhausted and starving.
The Ronald is nice and we’re grateful to have an inexpensive place to stay. In our room, which was extremely clean by the way. I brought an entire container of Clorox wipes and wiped everything down and was pleasantly pleased with how spotless it was. Anyways there is a dresser, tv, desk, chair, and 2 twin beds. Luckily I had done some research and knew this so I bought king size sheets and a mattress cover so I wouldn’t have to sleep in a twin bed with my hubby. They said they would provide a crib for Liam but when we got here they were unable to lock the room with the cribs in it...strange. So we made him a bed on the floor with about 6 blankets, a mattress cover and a crib sheet. He didn’t love it so he ended up sleeping with us for most of the night. This was a first for us and one that I hope to not frequently repeat. I did get him to sleep in his bed for a couple of hours before he woke up and was probably terrified not knowing where he was. Tonight, after making some adjustments, I'm happy to report he is asleep in his bed. I'm hoping it will stay that way so we can all get some good sleep tonight. Hopefully tomorrow they’ll be able to get the crib closet unlocked so he doesn’t have to sleep on the floor anymore.
Today was a very relaxed day. We slept in, met up with Erica from Candlelighters to get a stroller for Liam and she graciously gave us some gift cards for a local grocery store and restaurant. After a short nap and a tour of the Ronald(we were too tired to do it yesterday) we headed out to get some groceries. Although the Ronald provides dinner 6 nights a week they have 5 kitchens for all the guests staying here for other meals. Each room has an assigned kitchen and a bin in the fridge and freezer for our stuff. We had a little bit of sticker shock as we picked out groceries...another reason to only visit here. We bought a pound of organic strawberries and they were $9.99! Thanks heavens for the generosity of Candlelighters in helping us get settled. Since Matt and I were fasting today, we came back and fed Liam and then it was naptime again. Matt and I were happy to join him and we all got another good rest in. I'm not sure if we are making up for lack of sleep or trying to bank it for the coming days. Either way it was nice.
The weather here is beautiful. As we went for several walks today we saw people bundled like they were freezing and laughed to ourselves when the girl at the front desk asked if we were freezing. It was about 55 degrees here today and that’s 10-15 degrees warmer than we’re used to. We’re looking forward to a few more days of sunshine before the rain comes here. They have a sundeck on the 7th floor and a wellness center on the 11th where you can take in the sun. It has felt so nice to be outside again. I’ve missed the sun. Oh and to make things even sweeter the Ronald has an ice cream chest that gets filled daily with lots of yummy ice cream bars/sandwiches...this could be trouble. What better to put your mind at ease than eating ice cream in the sunshine?
Originally tomorrow was supposed to be full of hospital stuff but due to a scheduling issue everything has been moved to Tuesday. Honestly, this hospital is amazing...let me explain. Liam had a Ct scan after chemo round #2 at Primary Children’s but since having chemo #3 has had no further scans. So before surgery Dr. Gerstle wants a new scan. Unfortunately due to the short notice they were unable to fit him in Monday but could get him in Tuesday. At that point they decided to move all of his appointments to Tuesday to make it so he wouldn’t have to not eat for so many days in a row. As a parent I find this extremely considerate and I appreciate that. So tomorrow we will probably venture out and do some sightseeing and then Tuesday we will go in for blood work, Dr consultations(both surgeon and oncologist), CT scan, and do his bowel prep for surgery Wed.
Thank you Liam’s Amy for being here for us. I can’t explain to you how much strength you give us.
 

No comments:

Post a Comment