Saturday night my mom came up to the hospital and stayed over night with Cade to give me a little break. I was really needing this as that afternoon Cade and I were walking back up the SkyWalk bridge, me pushing him and his IV pole, and ahead of me there was a dad walking with his daughter. Lifting her up above his head, bouncing her on his shoulders, hanging her down his back, and she was giggling away naturally like any toddler would be doing. I was overwhelmed with sadness and felt my eyes well up and the tears just fall down my cheeks. Sadness at the fact that this was not the moment that I was getting to have with my toddler. Saddened by all the time and moments I’m missing with my 4 year old. Heartbroken at what Cancer is taking from me and my family like it has with so many other families in its path. So my mom stayed here with Cade and I went and spent the evening with my Aunt and Uncle who live only about 15 minutes from here. It was a perfect night spent with them on the couch in my PJ’s watching a hilarious movie with popcorn and a big glass of red wine. It was just what I was needing, I can’t thank them enough.
Sunday the doctors had decided to check his methotrexate level earlier than the 72hr mark and I woke up to a message from my mom telling me it was 0.06 and we got to leave that morning to go to the RMH! On top of that, Chris and Rylan were on their way up (Rylan thankfully feeling better and fever free!) to visit us. How perfect that we were all going to get to go to the RMH together. We made it over there by about 11am and got all settled in. My mother in law and Chris Uncle Alan came up to visit us there as well that afternoon for a while. The boys got to play and run around, I got to spend some time with Rylan when Cade was sleeping since Chris was there to help me and stay with him, and we got to have family dinner together. Rylan and I were going to go home Monday, but instead I chose to just stay up here with him and allow him to spend more time with Cade outside of the hospital so we stayed overnight again all together at the RMH. Tuesday (yesterday) was his clinic appointment for his blood count checks, dressing change, and 2nd dose of Vincristine for the round. One more dose next Tuesday and we’re officially finished with round 3! I knew Cade’s hemoglobin was low because he was progressively getting crabbier and more fatigued by the minute from Monday through to his appointment. His energy level was like a roller coaster. One minute he’s wanting to go eat or play, 5 minutes later he wants to just go back to the room and lay down, then 15 minutes later he wants to get up again. He wants to eat, then 2 minutes later he just wants to be done.This went on all day. So it was no surprise that he needed a blood transfusion. We went over to the day hospital for the transfusion. They ordered him lunch which he didn’t touch. He took a few sips of juice and then layed on Chris and took a nap. In the middle of the transfusion, and at this point 2pm in the afternoon, I was calculating all he has had to drink to this point in the day. It was 18oz and that was probably being generous. At that moment I thought to myself, is it really worth the struggle? His doctor already told me his potassium was low and his BUN elevated, so he was already showing signs of dehydration. He needs 36oz in a day to maintain adequate fluids and that’s at minimum. We were only half way there and I knew there was no way I’d get him to drink 18 more ounces before his bedtime. I told the nurses my feelings and told them to talk to Dr Knipstein and see if he’d prefer to just admit him now from the day hospital because if we’re being honest, I’m just going to end up back here the following day with him being more dehydrated. Dr Knipstein said yes.
So that is where we are. Back on the HOT unit. A new room to continue our search for the best room on the unit. Haha. Cade likes this one, he has a good view of the fork lift out the window. We decided to start him on TPN and Lipids again for some IV nutrition and we talked more with Megan his NP in clinic as well as the doctors and Chris and I have decided to move forward with the feeding tube. We were really hoping to get by with out it, at least for a while longer. But the 3x a day marinol isn’t seeming to make a difference whatsoever. We discussed that and changed him back to twice daily on an increased dose instead to see if that makes more of a difference in his eating. But bottom line is, he still needs more. Even when he’s excited about food he doesn’t take in anywhere close to a full meal. I’m used to having “solid” boys as many people describe my boys. Babies with rolls for days. Boys with solid meat on their bones. I can now see Cade’s spine and his rib cage. That’s not my baby. It’s bothersome and it worries me. He was close to 35 pounds before this all began. Yesterday he weighed in at 29 pounds. That doesn’t sit well with me. He doesn’t have much more weight to lose before it is going to start to become detrimental to his overall health and well being, not to mention his ability to fight and recover. We still have a long road ahead of us. I know he needs a feeding tube. He needs more nutrition so he can gain some weight back. If and when he gets the desire to eat, then great! It will be an added bonus of nutrition for him. When he turns the corner and starts eating well enough on his own, then the tube can always be pulled. But the tube will take the stress and anxiety away about eating, about taking all of his medications, not only from him, but from us as well. I’m hoping it will make things better all around and I’m praying that he won’t hate it as much as we are worried he will. Hopefully it’s just like his central lines in his chest. I was dreading those over the port, but he could pretty much care less about them. He quickly adjusted to them and understands that they are for his benefit. Let’s pray that’s the same case with the feeding tube.
We researched different nutrition formula options. I entertained the idea of making my own food to put in the tube, but his tube is going to be small. The last thing I want to be dealing with is trialing how to make the perfect consistency of feeds to not clog his tube. I do not want to deal with clogged feeding tubes or it having to be replaced due to that, etc. We were told about Kate Farms prior, and then we were also told Tuesday about a nestle product (I believe) called Compleat and their organic version had pretty good ingredients. Very comparable to Kate Farms, but of course the hospital only offers the standard one, not the organic option. Anything organic you have to provide yourself. The dietician said they’re working on showing proof of demand from patients and families enough to warrant the cost of providing an organic option. The case worker submitted to my insurance to see if they would cover the nutrition product part of it to begin with. Some don’t cover anything. Some only cover pediasure. So we will see. She submitted for both Compleat and KF. Fingers crossed!! They’ve surprised me before, lets see if they can win me over again. We will be looking at the tube placement some time next week. They want him to heal from the mucositis prior to doing it.
Last night he was happy to be back on his unit and back to his usual routine of stalking his favorite nurses and walking all over the hospital. Or should I say me carrying him half of the time. He got a nice boost of energy from his blood transfusion though because he walked all the way down to the library and then down the skywalk to see if the Starbucks was really closed (he didn’t believe me). Then on the way back he figured out instead of walking, he was gonna stand on 2 of the legs of the IV pole base and hang on to the handle while I pushed the IV pole back to the room. Man was he loving this. Genius 3 year old here! Haha. Got quite a few comments and smiles from people who passed us, equally impressed by his creative choice of travel 😉 This morning, he seemed off. More tired. Wanting me to carry him everywhere. Finally by 10:30 I told him he needed to rest. Maybe he just needed an early nap. His new thing is having to lay with me, and by lay with me, I mean lay completely on top of me. So he was passed out on me by 11am. Around 1:30 they did his vitals and his temperature was 100.6. They repeated it an hour later and it had not improved. 101.2. I was so bummed. Dr Knipstein jinxed it!! He just commented yesterday when we were talking about everything, “but no fevers yet!” And I knocked on wood. And here we are 24 hours later with our 1st fever since starting chemo. I know it happens. It could just be from the bacteria in his gut taking over with the mucositis and causing an infection. It could be something else. Who knows. We’ll likely never know. They drew blood cultures from both lumens of his line and started him on IV antibiotics. Praying the blood cultures will come back negative in 48hrs. They’ll keep him on the antibiotic until his counts begin to recover and he can begin to fight off things on his own again. My day was spent in bed with him. He wouldn’t let me leave. So I just snuggled him. And cried a little in all honesty. Everyone is shocked he hasn’t gotten a fever to this point and say he was due for one, it’s nothing that we did or exposed him to necessarily, it’s just how it goes. It’s basically expected to happen. But it’s still hard not to wonder or worry if it’s our fault. If we weren’t diligent enough about washing his hands. If we didn’t watch close enough and keep Rylan and him from sharing a bite of food or a sip of the same drink. It’s hard not to worry. Not to blame yourself.
I was happy that he began to perk up a little bit around 4:30 and it lasted a good couple of hours. My mom came up with dinner and he even let us all sit in the family kitchen area and eat dinner. This was a first! I’m pretty sure we’ve never been in there for more than 10 minutes at a time. He definitely was feeling a little better, you could tell. It was nice. Then that quickly wore off and he was ready for bed and yelling at us to turn the lights off and all go to bed by 8pm. Haha. Love that this kid never loses his spunk throughout it all. He cracks me up. I’m praying that this is a very short lived fever/infection and he’ll be back to himself by the weekend. 🙏🏼
I almost forgot to share my sign of the week- we entered the unit to find it decorated Gold for Pediatric Cancer Awareness month. Gold ribbon balloons lined the hall. The windows of all the rooms have gold ribbons painted on them with different words and messages. I was reading them all as we walked towards our new room of the week. Then we got to our room they were admitting Cade in to and I looked at our window. A big gold ribbon filled the window and below it was the word WARRIORS. I smiled. Warrior. Without a doubt.
Our Warrior Journey 