Cade and I have enjoyed our last couple days at the Ronald McDonald House. Tuesday night we settled in and he played a little. Wednesday my sister came up and spent a good part of the day with us. We took a quick field trip to a near by Starbucks to grab coffee and then came back to the house. Cade played outside briefly, painted for about 5 minutes, and eventually decided he wanted to just sleep so he took a long afternoon nap and I got to enjoy my sisters company for a while. After he woke up she left a short bit later and he sent her off with a nice farewell I’ll miss you vomit right in the middle of the lobby. I had no idea where the nearest bathroom even was from the lobby. I had all the other ones figured out in the major areas we had spent time at in the house. But not the lobby. Never anticipated that one. They were so nice though, I felt terrible. The manager of the house assured me that it happens often and to please not feel bad or worry about it, they will take care of it.
His appetite was pretty decent yesterday. He wanted to eat yogurt and fruit and have snacks. He did well I thought. It’s been a challenge to get him to take his medications, which there’s quite a bit of and they’re all oral ones of course now being out of the hospital. Often times he ends up throwing up because he gets himself so upset and worked up about the fact that they are yucky and going to make him throw up. It’s an ongoing challenge and he has to take them, we have no choice. I do my best to mix them or have him chase them down with Gatorade, juice, water, Fritos. You name it, I feel like we’ve tried it. But sometimes I feel like his anxiety about them gets the best of him and they come up as fast as they go down…along with whatever food he may have managed to actually eat prior to. It’s incredibly frustrating and makes me want to cry. They had started him on an antibiotic Levaquin and he has to take it twice a day, a decent volume too. I figured how bad could it really be so I tried it, like I have done with all his meds. And oh dear god, it really was awful. I felt so bad. But like I said, not taking it is not an option, so we have to figure out a solution. I try and talk this out with him, but he’s 2. You can only reason with a toddler so much and it breaks my heart. As if that wasn’t bad enough, he began complaining that his mouth hurt yesterday as well. Probably why he wasn’t eating a ton. I was trying to figure out whether it was external or internal. The vincristine, which he had his 2nd dose of Monday, can cause jaw pain as a side effect. However, the cisplatin and the methotrexate in combination are both known to cause mouth sores. Also known as mucositis, which can actually occur anywhere in the mucosal lining because our cells throughout this lining turn over constantly and those cells too get damaged by all the nasty chemo drugs. Sores can occur in throat and stomach, but are often seen in the mouth. He seemed so exhausted yesterday and he went to bed at 5:30pm without dinner. I wasn’t even going to try and make him try and eat, I was just hoping I could get him to drink and take his last medication a few hours later. 9pm rolled around and I got him to take the med and he was complaining about his mouth hurting again. Still trying to determine jaw pain vs sores, I attempted to look in his sweet little mouth with my cell phone flashlight. I thought I maybe saw something on the back right side where he was complaining. I told him he could take the “pink medicine”, as we refer to Tylenol as, and it would help the pain. He didn’t want to and fell back asleep.
Well he woke up around midnight crying that his mouth hurt and he wanted the pink medicine. I gave him Tylenol and some water and we laid back down. He was crying asking for more about a half hour later. I explained I couldn’t give him any and prayed it would kick in soon to give him some relief. He woke again at 3:30 asking for water and complaining his back hurt. At this point I realized he hadn’t peed for a while and started to panic as he’s saying his back hurts around where his kidneys are. Flank pain. Uriniary tract infection. I made him get out of bed and pee in the urinal. He was having a meltdown about this and crying, but I told him it was super important. While he was peeing he was screaming and freaking out, grabbing himself saying it hurt, it hurt, yelling at me to not touch it. I was freaking out. Was something going on? Was the medications causing issues with his kidney’s? Was he just incredibly over tired? Should I take him to the ER? I didn’t have a car here. It was 3:30 in the morning. I would have to carry him over the sky way bridges, but were they even open 24hrs?! If not then I’d have to walk outside on the streets to get to wherever the ER entrance was. I didn’t even know where the ER entrance was. I wanted to cry. I just prayed that God would give me that mother instinct if it was that bad that I needed to take him. If we could just make it to sunrise, I would do whatever I had to do. We fell asleep snuggled together on my pillow. He tossed and turned, but slept until 6:15. I got him to pee when he woke up. Again, it was only a little bit and very concentrated, just as it had been a few hours prior. But he was not in pain at all. His back didn’t hurt. I was pushing good on both sides asking him, and nothing. No pain. It was a relief. We had a nurse visit scheduled for 9:30 to check his blood counts. He wanted to go to the kitchen to eat, which was promising. We went after the battle of taking the awful antibiotic. He had yet to complain about pain in his mouth. He drank a small glass of milk, but didn’t eat much. Then he threw up all over the kitchen. This time I knew where the bathroom was, it wasn’t far, but he gave me zero notice. He said I’m gonna throw up and then threw up before the sentence even finished out of his mouth. After that was settled, he still wanted to eat, but just drank more milk and a little water. By the time we got back to the room he was saying he was cold and just wanted to lay on the floor. So i made him a bed on the floor and he layed down and covered up. He had no fever, but he looked exhausted. Medication battle and more vomiting and we were dressed and on our way over to our appointment.
The nurse came in and did his blood work. I told her about the events of our night and that I thought I saw a sore in his mouth. We looked again together, and sure enough, there was one on the right. Poor baby had such heart, he wanted to eat so bad, but every time he tried to chew anything he just cried. It was heartbreaking. They wanted us to stay around until we had the results back. I was concerned that he began to get a slight darkness under his eyes. He was dehydrated. The nurse came back and said that they are going to send him over to the day hospital to get a dose of morphine for pain and some IV fluids to hydrate him and then decide from there whether they wanted to admit him or not. I knew we weren’t going home. They walked us across the hall to the day hospital where I discussed everything again with the NP. She came back in stating she had talked to our oncologist, Dr Knipstein, and that he wants to admit us. Cade’s white count is now 0.1. Basically bottomed out. His red blood cells are holding strong above 9, but his platelets are falling as well to 33. Not enough to transfuse quite yet, but getting there. Their bigger concern was the mucositis. He has no infection fighting cells right now, which means the sores are only going to get worse. The worse they get, the less he will eat and drink. They made the decision to put him on IV fluids as well as start him on TPN and lipids. Nutrition through the IV. He needs the protein to help him heal or the sores will definitely never heal. They’re hoping it will only be for a week and once his WBC begin to recover, the sores will begin to heal, and he’ll begin to eat and drink again no longer requiring the TPN/Lipids. They also started him on a PCA pump of Dilaudid. I let them know that I had a terrible reaction to Dilaudid after having him. It made me vomit and I couldn’t focus my eyes on anything. It was horrible. But his dad is allergic to morphine and he does fine with that, so Dilaudid may not affect him at all either. Well that was not the case. Soon after he received a dose he began saying his eyes hurt. I asked him if he could see the TV and he said no. I asked if he could see me ok or if I was blurry. He said I was blurry. He seemed fine shortly after, but then it continued to happen so they stopped the Dilaudid and are now doing prn doses of morphine. They unfortunately can’t do it on a PCA pump because there’s a nationwide shortage. They also started him on an oral med called glutamine to see if it will help with the mouth sores as well to help the healing process.
So we were officially readmitted and ironically right back in to the same room we were in. Almost like we never left. He’s been comfortable since we’ve been here. Still has the drive to eat. Bless his soul. He managed to eat a popsicle and some applesauce. He tried jello, but it hurt. Chris, Rylan, and Grammie drove up today to bring me my car and see him. Chris said Cade yelled at him for giving him small bites of the applesauce. “Give me a big bite dad!” He told him. Haha. The benefit of being back here is he can rest and almost all of his medications can be given IV again, giving him a break from the anxiety of all the oral medications. Giving me a break too from the heartbreaking battle. They anticipate us being here for about a week as that is how long it will take for his white count to begin to recover. They don’t want him going home before that happens.
Today was a sad day for me. I cried a lot. I know this is our new life now and this is the road. These were the expected side effects told to us upfront that we knew would happen. I guess I was just praying and hoping that he would prove them wrong. That he would somehow be strong enough to not be hit that hard by the chemo. Not meaning at all that he isn’t strong. He is incredibly strong. But his sweet little body can only endure so much. Some things are just inevitable. The chemo drugs he is getting are very strong. So strong, that the oncologist had told us once that if this regimen was given to an adult, we would not get out of bed. We likely wouldn’t even survive it. For that, I commend his little body for being as amazing as it has been to this point. I admire his little hunger spirit for still wanting to eat and having the drive to still try and do so. But I’m still incredibly sad. I was even more so saddened for Ry. Him and Chris were planning to come up today even before we were admitted. We were going to spend time all together at the RMH. Let the boys play together finallly without all the IV lines. Watch them run and play on the play set outside in the beautiful garden just getting to be kids and playmates for a little bit again. And I’m so sad that that didn’t get to happen. That we are here again in this room so soon. I’m crying now again just thinking about it. I’m overtired, which isn’t helping matters. They kept saying kids start to feel really bad around days 8-10. Well days 8 and 9 came and he was doing so well. Yesterday was day 10 and I thought to myself, maybe not. Maybe he will slide by and power through. His hair is even still holding strong. I just keep running my fingers through it like I always do, while I still can. Slightly holding my breath at times waiting for a big clump to just come out in my fingers. I know his hair will start to go soon too I’m sure, but I still find myself praying that it doesn’t. My strong little baby. He made it to today, day 11, and his body finally surrendered. Hey, I guess he still beat the typical odds though, right?! I pray that God will lay beside him tonight and help him to rest comfortably and to heal. I pray that he will protect him through this all. 🙏🏼
Our Warrior Journey 