January 7, 2019 – First Chemo Done
Wow.
It’s hard to believe that it’s only been twelve days since we ended up in the hospital.
We, and Uriah are doing as well as can be expected, I guess.
Playing with dot markers 
Emesis bags make great robot arms and legs 
A peacock is a “bird butterfly” 
Good spirits today 
Friends from home brought cards and gifts 
Mama might be more tired than Uriah 
One smile makes all the difference
Uriah came in so malnourished due to his inability to eat, coupled with the fact that we we’re told “not eating is normal” with the intestinal infection they thought he had, he’s needed some extra support. So he was pretty quickly placed on TPN, or “IV food.”
Uriah has been through a CT, and MRI and a surgery to place his central line. He’s had TWO blood transfusions and will have another one tomorrow.
He was also put on an NG, nasogastric, tube to allow us to try and feed him formula through it and keep his gut stimulated and hope to wean off of the TPN.
Chemo went as well as we could hope I guess. He had some pretty bad nausea that we worked to get under control with medications.
He’s also been put on around the clock pain medication drip.
He has up days and down days. He’s been started on physical and occupational therapy, which he will need to have ongoing.
Because he was so malnourished coming in, he’s both been weak, but also a bit de-conditioned- muscles are forgetting how to work right because he hasn’t had to use them.
But, he’s also having some nerve related side effects from the chemo giving him “foot drop” where he has trouble coordinating his feet movements. This coupled with pain and weakness make it pretty hard for him to walk right now.
There’s been so much going on it’s really hard to keep track. The days drag together into the nights and so on.
Friday we got the unfortunate news that his genetic testing came back and he has the most aggressive, hard to treat genetic variant of neuroblastoma, “MYCN.”
And, to round off our excitement, TODAY we were placed in isolation.
Uriah has had a fever on and off since this all started nearly a month and a half ago. It cleared some of the days in the hospital but has been up and down.
We think that it is likely due to the dry hospital air and an irritated throat from procedures and NG tube placement, but, he’s had a dry cough for a few days. Couple this with fevers – perhaps disease related, perhaps neutropenic fevers of unknown origin… well, they decided they can’t risk that he does have something and gives someone else on the unit whatever he got.
So, he can’t leave his room. This is sad for him as one of the few things he was enjoying was riding the tricycle for a few minutes a day and a trip to the art room now and then.
For Mama and Dad, we can leave the cancer unit, but we can’t be anywhere on the unit but his room. This means we’ve also lost access to the family pantry where we have kept our food stores.
The staff say they are happy to go get us something or warm something up, but as we eat “real food” that’s not really practical. I don’t think nursing staff is going to dig through our bins of food, pull out fresh bread, meat and cheese and mayo and slap together a sandwich.
And, once food comes into our room, it can’t go back out. So they can’t bring us our supplies and then take them back either. We may have to suck it up and spend some money (or take up some of the offers) to have some food delivered. We’ll have to chock it up to unexpected hospital costs I guess.
It’s sounding like there is a strong possibility we will stay admitted through the next round of chemo in the third week of January. We might get placed outpatient for a few days depending on how he is doing, but there are still enough issues that they just can’t tell us much and we continue to take it day by day. If we go outpatient we’ve been approved to go to Ronald McDonald House as somewhere to stay near the hospital as it wouldn’t be practical to go all the way home and there will be tests and PT etc.
We’re still trying to figure out what to do with our dog Hank. He’s being boarded at a kennel back home. We feel bad about that and the quality of life for him.
We considered looking for a foster family, but, I think having Hank around will be important to recovery for Uriah. So now we are trying to figure out a group of people at home who can maybe take turns watching Hank. That’s harder than for some dogs as he is an “only dog” questionable around others, though great with people. He also is used to sleeping on the couch but being able to go out when he wants and having a fenced yard as he’s bolted before.
We’ll see what we can figure out.
That feels like the briefest overview of that last 12 days, but it’s all I can muster.
Thanks for your continued support and well wishes.
To those who have donated to Uriah, I can’t thank you enough and hope you understand if I don’t have to time or energy to get around to thanking everyone personally. You are all angels.
-Mama, Regina
Courage and hope to you all on this journey. So many of us are thinking positive thoughts and sending energy to keep you afloat.
Every little bit helps. Just knowing there’s people out there thinking of us!
I kept meaning to ask about the pup ❤️
Yes- that silly old dog is our second biggest worry after the boy.
So happy to get update and see his smile.thanks Mama,still praying every night and day for strength for you and Dad and for a brave little guy. Love Kak.
Thanks for coming by here for updates Kak. It’s the best place for me to get info out otherwise there are just too many places and people to address.
So glad to hear how it is going especially to hear his dear little voice in the background on the phone. It sounds like you are in a very good place and that they really are at the top of their game. I remember isolation 3 or 4 times in my husbands journey, That is a good thing to protect the other children but especially Uriah while the immune system is weakened. It is hard for you. Uriah is always in prayers and strength and positive thoughts to mom and dad.
Thanks for the update. Continued prayers to your family. I wish I lived close because we’d totally dog sit for as long as needed assuming the pup can get along with a couple cats and kids.
Kids he can do… cats are an unknown. We had a great home for a questionable to animals pound dog, but that makes him extra difficult if we can’t be there.
My prayers continue to be with you. If they haven’t mentioned it, you can put a small cooler in the room during isolation and they’ll bring ice. Hopefully it’s a short isolation. I’m so glad to hear they are putting in a port right to his tummy. Sounds like you have a great team. Thank you for sharing that smile.
Thanks for stopping by again Shelby. I’m just now getting to all these messages. When we have a planned isolation I will surely do this. And if it happens again, maybe we’ll call you! Lol. It only ended up being 3 days as no symptom changes and concluded it was mucositis with dry hospital air, extra irritated throat from vomiting and refusing to drink anything.
Thanks for up-date and Yes, one smile does wonders Regina. Wish we could take Hank for you all. Not sure how Graysea and the cats would do or Hank too 🙂 Big Hugs sent your way and lots of good thoughts! I’m here, anytime!
Glad you would think to offer Mary. I understand how hard it is as Graysea is special in the setup she needs just like Hank.
Thinking of you all every day. Big Hugs from NM.
Love to you too Myla. Hug those kiddos tight.
Hi mom, how are you and glen. How is our little brave soldier. Prayers every day and night. Kisses to all. Keep me posted. Love Kak
If you want, Regina, will send you a yoga ball to help you through the isolation period. I know its a tight space (we kept it under the counter when not in use) but it was a lifesaver for getting in some daily movement and lymph drainage to keep the caregivers going. Let me know.
Hi Cicely. I think that would be nice but we need to get a system in place for dealing with our stuff in Portland first as the room is pretty jam packed with all three of us living here full time. I wonder if PT has one I could ask for, as I like the idea and hadn’t thought of it yet! Uriah has been riding his tricycle like a crazy man (only because he wants to play bumper cars with another boy) and that’s getting me some exercise! I will figure out how we are going to deal with our hospital/Portland gear once we leave the first time and then hopefully we’ll be better prepared for next time or next extended visit.