Well another week has gotten away from me again. Mind you this update has been a work in progress for 2 days now, so don’t mind the time stamp on the post. It is currently Friday. I made the mistake of putting the LEGO game on my iPad when we were in the PICU for the harvest, so now every time I’m on my computer trying to update everyone, the little weasel takes it over to play LEGO. Even though it is also on his OWN iPad, but clearly it’s way better being played on mine. He has control over so little these days, so I often give in and share. At least for a little while.
We had a wonderful weekend at home together full of family, pizza/movie night, dipping feet in the pool, and sleeping in our own beds (well at least for one night. Haha) A wonderful woman, Christine, who lives in our neighborhood and does massages out of her home (incredible ones I might add) wanted to give me and Chris both free massages. She is a cancer survivor herself, twice! I got to enjoy my amazing and much needed massage Sunday morning followed by the best surprise ever…my ST pulling in my driveway in a 12 passenger van. Lol! Kate lives in San Fran and had to fly in to Madison for a work conference. She reached out to Chris to set up a surprise visit. The 12 passenger van just happened to be the only available vehicle at the car rental. Too funny. Squeezing her was the icing to the cake of my weekend at home. Thank you again for visiting us Kate, I’m so happy you got to meet Cade. I love you!
Cade and I had to leave the house bright and early Monday morning because he had to get his kidney function test done and the results had to be final prior to him being able to start the next round of chemo. We had it at 8am and then went to our appointment in clinic around 10:30. Cade had his dressing changed in clinic like usual, but this time he was such an incredibly big, brave little boy. I have always held him on top of me on the table or bed for the procedure, but this time he chose to lay on the exam table all by himself and I just held his hands. It was so cute. I was so proud. He showed such amazing strength through his sad little tears. And then of course couldn’t jump off the table fast enough to run to the toy closet when it was all done. A routine he is all to getting used to. He picked out a bat and a ball. So fitting. We were finally admitted to a room on the HOT unit and he hung out with Aunt Shalina while I ran back and forth to the car a couple times so that I could move us in to our room. Of course there were no wagon carts to use, so I improvised using a car seat holder cart. I looked ridiculous, but I really did not want to make 2 trips. There was a very kind man who saw me struggling trying to figure out the best way to maneuver it all and offered to help me to the elevator. Once I got off on the 5th floor, our oncologist, Dr Knipstein, saw me and just said “Oh my.” I just laughed and said “yep, move in day! Would you expect anything less?!” He chuckled. I think that was a no, he really didn’t. You try keeping a 3 year old entertained in a room for over a week! It requires more than just a suitcase of clothes.
Our 3rd round was off to a start by late afternoon. The week has been good overall. We still do our usual- go down to the gift shop, rent movies from the library, see if the cafe is open, take a loop around the garden outside. We even managed to snap his lines again on one of our field trips down to the gift shop. Fun times! It was actually Cade who did it this time, not me. Haha. Thankfully nothing severe, just the IV tubing again. Quick catch, locked the lines, and flew upstairs to let the nurses know. Crisis once again averted. Since he was disconnected from tubing, we took advantage and took a nice little bubble bath. This went over much better than the last time we were here when I’m pretty sure I spared you all of the fact that I literally had to get in to the miniature bath tub with him in order to get him to take a bath and wash his body and hair. It was ridiculous and became the joke of the day between some of our regular nurses. They laughed and said I should be grateful he didn’t pull the red cord or we would have had about 6 people in the bathroom with us. We all laughed at what a site that would have been, because despite my efforts to just get in the tub in my bra and underwear, that did not end up being the case. The things us mommas do for our kids! This time Cade enjoyed the tiny tub all to himself, which was much nicer. He felt pretty good up until yesterday (Thursday) when he got the methotrexate. I think everything finally hit him. Sadly, but expectedly, it seemed to hit him a little faster this round than last. He hasn’t been eating consistently great this time around. His spirit is totally there, but then he sees the food or takes one bite and loses interest. It’s hard though to figure out whether it’s loss or lack of appetite or because he’s nauseous. How do you really get a 3 year old to understand what nausea even is. So it’s constantly a guessing game. Trying this and that. Tweaking one thing or another with his medications to try and find that sweet spot where he suddenly wants to eat. He’s losing weight still, and this is always a concern because you don’t want them to lose to much that it becomes impossible to play catch up and then it impedes their healing and overall wellness and ability to get through this nightmare treatment. Then you add the food challenges in general for toddlers with being in a hospital and them not being around their normal foods and settings. It’s stressful more often than not.
I’m not entirely opposed to a feeding tube if it’s truly what he needs. But at the same time, I’m not ready yet. I feel like we haven’t exhausted all of our options or given him a real chance. I want to be sure we have tried everything, and when that’s the case, then I have no problem surrendering to a feeding tube because I will know that we tried and did all that we could, but it still didn’t help. But to put one in and wonder what if we had tried this or that, would he maybe not have needed one? That was not sitting right with me. In addition to all of this, I am having a huge problem with the nutritional options offered by the hospitals today. Pediasure is basically your only go to option for feeding tube formula and I’m not super impressed with the ingredients list and amount of sugar. The dietician was talking to me about “super shakes” as an option for him to order that the kitchen offers and they’re small shakes loaded with calories. She thankfully gave me a sheet all about the types available which allowed me to see their ingredients. It was disgusting. Almost every shake option included 1/4-1/2 of a cup of corn syrup! Corn syrup, ice cream, hershey’s syrup, just to name a few common ingredients. With as far as our world seems to have come with recognition to health, eating right, healthy fats and calories, and the horrors of what bad sugars do to our bodies (both healthy and sick) I was not only shocked, but incredibly disappointed to see that this was what was being offered to me to feed my child and get him to gain weight. Why are we not filling these super shakes with olive, sunflower, coconut oils, Greek yogurt, and natural sweeteners such as honey, agave nectar, and cocoa powder?!?! I shared these concerns with the dietician, but of course it’s not her fault and she was not disagreeing whatsoever. She wishes we would see those types of options as well. Now I just need to figure out who/where to direct this complaint and “constructive criticism” to within the hospital in regards to this. I was talking about it a couple nights ago with one of our sweet nurses, and she gave me a couple suggestions that other families have tried in these situations. In addition to venting about this, I was telling her how he began to not tolerate milk/yogurt last round. We felt that his throwing up correlated with those items so we eliminated them. This was a big portion of his calories and protein, however, as he absolutely loves both of these things. To the point that he would try and bargain with us saying “just a couple sips of milk please?” Or “Can I please have a yogurt? I will just take a couple bites.” This sweet nurse informed me that there is a brand of milk called Fairlife and it is an ultra filtered milk which makes it lactose free while containing half the sugar of regular milk as well as double the amount of protein. We also talked about alternate pediatric formula options such as Nourish and Kate Farms. Both are incredibly costly, but their ingredients consist of much healthier items our bodies should be ingesting and not a bottle of sugar. Cost definitely outweighed by the benefits in our opinions. But I was more focused on this new milk brand, which also offers protein drinks when I looked up their products.
I called my amazing Aunt Karen yesterday morning who lives near by the hospital, and she dropped everything and went to the grocery store on a hunt for this milk for me to try for him. She arrived with a big jug of both white and chocolate milk as well as some other goodies for us. She and I both tried the chocolate milk and it was delicious!! Cade has been a big fan. I think he had 17 ounces yesterday and 20oz total today. This is fantastic, because he’s still not really eating food. His heart and excitement for food is still there. We gathered quite a feast of things for lunch and then he ate about 1 mini corn dog and 3 tots. I tried to reheat it for dinner, but nothing. Not one bite. He took one of the corn dogs and I’m still undecided with whether he dropped it on the floor just underneath the chair on purpose to make me think he ate it, or if he dropped it in his distraction of other things 😉 Bottom line he didn’t eat it. So thank God for this Fairlife milk. Hopefully it’s at least enough protein to help him out. One day at a time I keep telling myself. On top of being on a roller coaster of feeling good and bad all day yesterday, he woke up from his 2nd nap saying he was hungry. I was so excited. He chose to eat a frozen pasta meal I had in the freezer and ate half of it along with some bites of ice cream. Then at bedtime, he wanted me to pull out my bed and he wanted to have a picnic on it. He got out of bed and we got a yogurt from the kitchen for a picnic snack. While I was making the bed I could hear him dancing around behind me singing “we’re having a picnic. gonna have a picnic” over and over again a few times and then SMACK. Followed by a pain piercing cry. I twirled around to see him on the floor crying and picked him up to a mouth full of blood. Somehow he slipped in his socks and bashed his mouth on the hard floor. As most of you know, we are already down 1 tooth from a fall at 10 months old. Table 1. Cade 0. Whenever I see a mouth of blood with him I instantly panic and pray that there are no missing or loose teeth. This was no different. I felt all his teeth. None loose. Thank you Jesus. Then ran and turned all the lights on. It was only his lip thankfully, although I have no idea what exactly he did because it’s the oddest fat bloody lip ever. Almost like a big blood scab blister looking wound. His platelets were good thankfully so he stopped bleeding within a few minutes. The nurse and I iced it for a good while even after he passed out and then I got a good picture of it so I could compare it to this morning. I was praying he’d wake up and it would be gone. Like sometimes wounds miraculously are in these little ones. But that wasn’t the case. However, it wasn’t worse so I was happy. It just made my heart so sad. I was almost depressed the rest of the night. He was so excited for the picnic and his happy chanting followed by his pain scream just kept playing over and over in my head.
Today the doctors joked about it though saying he is doing and looking great and that if having a crazy active toddler (as he’s climbing the couch on and off the window ledge so he can look for the fork lift) with a fat lip is our concerns of the day, that’s wonderful! The doctor said he is really in good shape, they often see kids not getting out of bed so they are so happy to see how well he is looking at this stage. This was definitely comforting to hear. Now we are just waiting for the Methotrexate to clear his body, which normally should be by Sunday, but you never know. Once it clears, we get to go to the RMH for a few days until the mucositis begins to develop and has us readmitted. I’ve accepted that this is the song and dance. I’m just praying that the mucositis can be just as mild this time as it was the last and that he doesn’t get any bad open ulcers anywhere in his mouth or elsewhere for that matter. Chris was supposed to come up tonight to stay the weekend with Cade and allow me to go home and be with Rylan. Then Ry and I were going to come back Sunday and stay over night at the RMH so he could see and spend time with Cade. Well Rylan didn’t feel good Wednesday night and ended up throwing up a few times. He hasn’t thrown up since or had any other symptoms really, but he has been complaining of his stomach hurting and his temperature is lingering around 99.5-99.7. Not a legit fever, but something is still brewing that his body is trying to fight off. So we had to make the choice to cancel our plans out of safety for Cade. I’m hoping Ry will feel better in a couple days and he doesn’t start to feel any worse. You always know they don’t feel good when they’re willingly choosing rest over play. Or in the case as Chris laughed about tonight when he told me that Ry told him he thinks he is overtired and needs to go to bed. Never in a million years!
Here’s to prayers for health as we enter the school year and the sick/flu season that I’m dreading. Prayers for sweet Cade that he continues to have the strength and perseverance he has shown throughout all of this. Prayers for no evidence of disease as we get ready to move in to the next phase of treatment. Once this round is officially complete they will repeat his hearing and kidney tests as they always do, as well as repeat his brain and spine MRI and his lumbar puncture to see how things look and if treatment is working. If these results show complete or continued response to treatment then we move on to be randomized in the trial to either 1 or 3 treatments in the consolidation phase (heavy dose chemo and stem cell transplant) of treatment. If they show concern then he will have to receive 2 more rounds of induction therapy like he has been currently getting. Thank you to everyone for your continued support and love to us all. For all of you who have visited us, brought us food, made us meals, sent loving words and messages, kind and generous gifts. We are so very grateful for everything and every one of you. Most importantly, thank you to every single one of his prayer warriors! You are our foundation. Our strength. His strength. God bless you all and thank you for keeping us in your hearts. Xoxo
Our Warrior Journey 