Apologies for the lack of updates...I haven't been feeling great and Richard's been busy....so here's the latest!
From Richard (Monday)
Our first night staying in St. Jude as an inpatient. Let me tell you a little about the room(s). In Ellie's room, which is good sized, has her bed, a recliner (standard hospital kind), an expandable couch, and a couple cabinets to keep her things. Her bathroom, and it is just hers, has its own bathtub and all the other usual stuff. There is a family room that is separate from her room, but is still just for our family. It's small in size, has and expandable couch, a chair, 10" tv (lol), and it's own bathroom for everyone else's use.
Ellie had a good nights sleep, or I think she did, it's hard to know because I was sleeping. At least I didn't get woken up from 2a to 5a last night. Maybe the no nap thing helped, who knows. We've met a lot of different people this morning (Chaplin, oncologist, nutritionist, attending, residents, new nurse, & people I can't remember).
FaceTime was cooperating this morning so we had a good conversation with Carly and Noah. Carly was able to see some of the doctors come in and check Ellie out and they were more than willing to converse through the video. Carly got a virtual tour of our rooms and we said goodbye.
Ellie started her treatments right on time at 2:00 with the Methotrexate. According to the Oncologist Dr. Mark the Methotrexate is supposed to stop the tumor cells from reproducing. That's what tumor cells like to do, reproduce, and rather fast. This medicine should stop them and may even turn the cells against one another so they start killing each other. She will be on the IV with this medicine for the next 24 hours. Along with killing/stopping the bad cells this medicine will also stop some of the good cells from reproducing as well. To help counteract that they will give her Leucovorin at some point.
They gave her Zofran about 20 mins before the chemo started to help eliminate any nausea. There is also a good chance that she may develop some mouth sores along the way too. I will help to keep an eye on it but for the time being we are to continue to brush 2-3 times a day. There is a chance of low blood counts but it is not expected to happen. She will have some decreased liver function, which is why the had to have her on fluids before the chemo started and will continue to be on heavy fluids throughout. Again, they will be monitoring her with lab work as we progress in treatment.
We picked up our first package from patient services and Ellie had a great time opening some presents from the Marrazzos. She got some more coloring books, markers, and a couple movies to watch (woohoo, more Dora!)
On a side note, it's been good to be able to accomplish some things while Ellie takes a nap. Or when a nurse volunteers to hang out with her while I grab some lunch downstairs. By the way, they were supposed to decrease the meal allowance now that she is inpatient, but they forgot! Hehe.. Looks like someone will be getting a few extra snacks or ice cream cones going forward.
If you remember I told you about a that 2 year old boy who has the exact same case of Pineoblastoma as Ellie? He was our neighbor last night and earlier today. I was able to meet him and his christian family just shortly before they were discharged. We talked mostly about our kids obviously, looking at what was similar between how our kids sicknesses started, surgeries, and what the future was like going forward. It seems so God-like to have two families who have kids with such rare cancers (and matching diagnosis) to be right across the hall from each other. It won't be the last time we will get to see them, I'm sure.
Ellie has been on her chemo for about 10 hours and as far as what's can see she hasn't had much of a reaction to the drugs. Thanks to our new visitor (Pastor) Ellie got some good playtime in with someone aside from myself (something we are both thankful for). They will be doing a couple of blood checks at different intervals to see how much of the drug is in her system. She should be wrapping up this part of chemo around 2p tomorrow and the we wait for her to clear it...
I shall do my best to update, I'm not there, but the amazing FaceTime has helped me feel like I'm part of everything! I have seen the same doctor three mornings in a row, watched Ellie give him a shot, since she has her McStuffins doctor kit with her, watched him tickle her feet and even use his phone flashlight app to check her eyes. (Guess they've learned kids are way more interested in phones than flashlights!).
Ellie has gotten sick a few times from her treatment, just after eating, but it doesn't seem to upset her. She has continued with an upbeat attitude, a smile on her face and a song!
We all know by know that Richard is the technical one...so forgive me if I say this all wrong! The Methotrexate is leaving her system at the rate it's supposed to...which is a good thing...so hopefully tomorrow (Thursday) she will get to go home. Home now is at the Target House, Richard got to move everything today. They now have two bedrooms, a kitchen and a living room.
He even got to cart his stuff up to the room in a Target shopping cart....I love it!
Ellie has continued to work with her new PT and OT friends, and from what I hear they are pretty fun!
Ellie and Richard have had a visitor for a few days, I can hear the relief in Richard's voice having Preacher there. I am so thankful that someone else is down there helping take care of my family!
Tonight as I chatted with them, Ellie looked tired, and you could tell her tummy is messing with her. But within a few minutes she had her new jammies on...not sure where they came from but she loved them, and she was happily playing with her new Barbies! Never would have thought that Richard would be the one to teach her how to play Barbies, but I'm so thankful I have a husband who will do that!
Here in VA I am buried deep in t-shirt orders, which I'm very thankful for. I'm trying to keep up with phone calls and emails, deal with these allergies, and get ready for Miss Sarah-Grace, who will be here Monday....OMG!!!! (ok I don't really use those abbreviations, but it seems fitting tonight) I am trying not to stress, I am trying to be thankful for all of it, but I can feel it creeping up. Part of it is my own fault, I'm too anal to let anyone else organize anything, and I will be the first person to admit that one. The other stress I think just comes from not being there. I've said it a million times, she's in great hands, but I feel like the most annoying wife in the world with my 20 thousand questions everyday. Richard assures me it's fine, but I feel like a bother.
Tomorrow is a meeting with a newspaper and then a doctor's appointment for me. Then hopefully home to put these beautiful chubby ankles up.
Words of Wisdom from tonight's Veggie Tales movie...
"Cast all your worries on Him, because He cares for you" 1 Peter 5:7
Thank you Bob and Larry for helping me remember I don't have to stress all this on my own!
Prayers, Praise, and Pink