My, oh my, does time fly!! My apologies for letting this much time go by between updates. Literally almost an entire season has passed by since I last wrote. How crazy is that!? I was wanting to get through a month of chemo to see how things went before updating, but then another month went past, and another. And well, here we are. Cade started chemo in the beginning of August. Today is the beginning of month 4. Month 4 of 12 or more months. I know I should look at it as the glass half full like whooo hooo 4 months down! …but instead I feel like only 4 months? We still have 8+ months of this to go, ugh. I know I need to be more positive. Haha. It’s just exhausting.
Cades chemo treatments are all out patient, which we are incredibly grateful for because it is much better for him to get to be home and sleeping in his own bed vs. being inpatient for weeks at a time like we were before. Our treatments are broken down in to 4 week time frames. Week 1 he has to go for treatments Monday-Friday. Week 2 he gets a break the entire week, although this week has more often than not consisted of other doctor appointments or at least an out patient lab visit around home to check his counts. Week 3 and Week 4 we have to go Tuesdays and Fridays. Then it starts over the following week at Week 1 and repeats. Over. And over. And over. Until they say we are done. That will be determined on how well his scans look and what his MRI’s are showing us over the course of the treatment. Lurie’s tumor board had reviewed him again and were very happy with what the MRI in July showed. They were on the same page that the MEMMAT trial would be their next recommendation for treatment. Because they were not on a drastically different page, we felt the best thing for all of us was to stay with our oncology team at Children’s of WI in Milwaukee. Lurie’s Team was wonderful about it all and even told us that they’d be happy to review him again in their tumor board meetings after future MRI’s. I tell you though, the fact that we are driving back and forth almost 10 times every 4 weeks, I am so grateful that we are not doing this commute downtown to Lurie. We’d be in the car 6 hours a day with the traffic and commute from our house to Chicago instead of the simple 2 hours round trip that it takes us every day to Milwaukee. Which is so crazy considering that on paper, CHW is 2 miles further.
Cade has done really well adjusting to the routine of all of this. Every time we go for treatment he has his Ommeya resevoir accessed with a small butterfly needle and the medication given through the resevoir straight in to his spinal fluid. The procedure takes about 10 minutes and he does fantastic with it. Our oncologist and the NP’s and everyone are always so impressed with how well he sits still and does with it. The chemo drugs that are delivered through the Ommeya change between week 1 and weeks 3/4, constantly flipping back and forth. Two of these appointments, one every other week, he also has to have his chest port accessed and receives another drug used for many types of cancer given in to the vein/blood system that is called Avastin. It’s job is to slow the growth of new blood vessels hopefully starving off the tumors and their ability to grow and spread. It comes with a bunch of nasty side effects including increased bleeding, decreased wound healing, and GI issues including perforation. That was comforting to learn, but Dr Knipstein assured us that this is very rare and more so a high risk when used for tumors directly in the GI tract or surrounding, not as much with brain tumors. It also has a very high risk of allergic reaction so he gets Benadryl before hand and his first dose ever had to run over 90 minutes with 30 minutes of observation. Subsequent doses they did over 60 and then 30 and he tolerated it all well so he is able to remain at 30 minutes infusion time with 30 minutes observation time. He absolutely hates his chest port being accessed and tells me all the time how much he hates the “poke” and having the dressing put on because he hates when the dressing has to be taken off. Poor buddy. On top of all of this, he has a bunch of oral medications he has to take daily at home. He takes 2 pills that are non-chemo medications but used in the trial as other ways to starve off the tumor cells. Celebrex which is a NSAID and Fenofibrate which is a statin without the nasty side effects that other statins cause. Then he takes another drug called Thalidomide. This is a nasty one. It was used way back for pregnant women with morning sickness until they discovered that it caused massive deformities in the developing fetus and babies were born with half developed arms and legs. Today it is used to treat many different cancers and things and is very seriously regulated. I get to do a monthly questionnaire with the company basically stating that he’s not sharing his drugs with anyone, he isn’t having unprotected sex, etc. This drug also has lots of nasty side effects, some of which Cade is starting to experience. We noticed standing on textured things like one of our step stools bother him because the medication is causing peripheral neuropathy as well as mild tremors and some dizziness and unsteadiness. It’s most notable in the morning and I had noticed it begin over Labor Day weekend. You can see the mild tremors in his handwriting when he tries to trace letters or things or when doing fine motor skill activities. Breaks my heart a little bit. Dr Knipstein said often times kids need to go on Gabapentin to help with this, but Cades is pretty mild (knock on wood) so we are just watching him and hoping that it doesn’t worsen. I really am hoping we won’t have to add another medication to his regiment. Last but not least he has 2 chemo medications, that like the IV chemo ones, flip back and forth every 21 days. He gets oral etoposide rotating with oral cytoxan. Bless this little guys heart because before he even had his 4th birthday, he taught himself how to swallow pills. All of these medications, with the exception of Etoposide, are small capsules and he has gotten so good with it that he can swallow 2-3 of them at the same time. The etoposide is much larger so the first round we did liquid. Which was actually IV doses that we had to mix with OJ and have him drink. He was not a fan, so once that round was done, he worked on swallowing bigger pills so that the next round could be a capsule instead of IV liquid.Thankfully it’s also an enteric coated type of capsule, so he got it down no problem. It’s a big pill so I was incredibly impressed and so proud. This is making all of our lives SO much easier. On top of all of this, he still has his other medications and supplements that we have been continuing. We have our routine though and we make it work. Aside from the few side effects, he has been doing well. His counts dropped and they had to adjust his oral meds and monitor him, but he has recovered his counts well and has not needed any transfusions yet, which is great.
We enjoyed our summer to the fullest. Cade celebrated his 4th birthday the week he started chemo. He had a wonderful birthday party the weekend prior, and all of the staff helped to make his birthday super special when we were at the hospital for treatment on his birthday. We had a few family weekend getaways to downtown Chicago as well as St. Joseph’s, MI. The boys had a great time both of these weekends. We did a family camping weekend with my mom and both of my siblings and their families, which was a lot of fun for the kids. Rylan found a giant grasshopper. Made friends with it for a little bit. Tried to put it in a bottle. Then learned that grasshoppers actually bite. Hah. No joke. Chris picked it up and looked at the bottom and that sucker had big red pincher fangs. Poor buddy. September flew by. Cade started going back to preschool, which is great. He struggles with it more often than not, full of tears not wanting to go, but once he is there he quickly adjusts and always ends up having a great day. In the beginning I would often pick him up at lunch time, but more often than not lately he ends up staying all day. Nature Scholars and all of his teachers have been amazing with him through it all. They continue to be such a huge blessing to our entire family. Rylan also started Kindergarden!! He loves it. I turned the big 4-0. Chris and my family had a wonderful birthday party for me that was beautiful and perfect surrounded by so many people that I love and adore. And now October has already just about come and gone. Fall is my favorite season, although I feel like I’ve been robbed of it for the most part with all the cold weather this year. But we have had some beautiful fall days. The boys and I got to go apple picking with Auntie Jackie. We have done our annual wagon ride at Stades to pick our pumpkins in the fields and carve them. Or cover them in foam stickers as Cade chose to do. And we have definitely eaten our fair share of apple cider donuts! 🍩 Yummm. Chris and I got to attend an absolutely gorgeous black tie gala for my company MIDC’s 25th anniversary. It was so fun to get all dressed up and have an adult night out. My MIDC family continues to be another huge blessing. A gift from God as he nudged me to take that leap from NICU to working for MIDC. It’s so amazing the people and things that God puts in our paths, knowing who and what we are going to need long before we ever know it. When you really look back and think about it and realize how and why things happened the way that they did…to prepare you, to help you. Gratitude just washes over you.
I continue to see butterflies often and cardinals here and there. They usually fly by me just when I’m in need of a sign to give me some comfort. We continue to be surrounded by love and support from so many people and directions and we are so incredibly blessed to have this. We have had amazing fundraisers done for us by friends from yoga studio events to the donation of proceeds from our local Nature’s Cornicopia health stores annual customer appreciation day to Cade and our family. The outpouring of support for our family that continues is very heartwarming and we cannot thank everyone enough for that. Cade was even asked to be one of the Panera Wish Kids which we thought was so cool! So his picture is on the make a wish donation boxes for the entire year in both the McHenry and the Lake Zurich locations. It’s so fun to go in and see his sweet little face smiling back at us at the register ❤️
This Friday Cade will have repeat MRI’s of his brain and spine to see how things are looking. How things are doing since starting the chemotherapy trial we are in. In July Dr Knipstein said that the radiation could still be doing its work so I am not sure what to brace myself for as far as expectations of the results, so I asked him. What is your expectations, what do hope to see for results with this Friday’s scans? He said he would be happy to see stable disease or slight improvement from July’s scans. He doesn’t anticipate everything to be gone and have clean scans, and Cade has been doing so good that there are no signs that would make him believe that things are any worse disease wise from July’s scans. This is helpful to us to know so that we know what kind of expectations to walk in with on Friday. Of course we would love to see that everything is gone. That all the spots that had shrunk and remained in July have now disappeared. But more importantly though I pray that there is nothing new that wasn’t there in July. That the disease is not spreading. Stable disease will make my heart content. I’m trying very hard to not have fear and anxiety consume me this week as the days tick down to Friday. I’m trying to be present in my life every day and not distracted by the overwhelming unnerving feelings that MRI’s fill your veins with. I hate it. Cancer parents refer to this feeling as “scanxiety” and it is so true. So instead I am pushing the fear away. It is not welcome here this week. And I am putting all my faith and prayers up to God, asking him to get us through the week and to please bless us with positive news on Friday. I ask every night, well every night that I’m not so exhausted that I fall asleep mid-prayers, that the Lord please grant mercy on our sweet Cade. That he helps his body to fully heal. That Cade will be a survivor. And that Rylan will never experience cancer on any other level than having to watch his sibling go through it all.
Please, please continue to lift your prayers up for Cade. For his healing. We know that prayer is powerful. That HE hears all of our prayers. We are so grateful for all of you who follow his story, who keep our family close at heart, and who continue to pray diligently for Cade. Thank you from the bottom of our hearts. ❤️
Our Warrior Journey 