Since the last update, Jacob completed Round 11 of chemo and has started round 12 as of yesterday. We enjoyed some “extra” days at home before his chemo could begin for round 11 because he was neutropenic for longer than expected. The downside to this was that we tried 3 times to get the round going, and had to say our goodbyes to the family those 3 times as well. Now that we have been home again after such a long stretch away, the goodbyes are seeming to get much harder on the boys, specifically Noah. Kaleb continues to do very well, with his very limited understanding of what’s going on, but Noah and Evan are struggling. I feel like my words to them are getting redundant as I repeat over and over to them to remain brave and positive, that we have no choice in any of this and have no choice but to go through this, that this part will end eventually….
Jacob turned 14 on January 13th. Birthdays have the tendency to prompt people to reflect on the year that has gone by, and I would assume considerably more so when going through deep trials. I tend to not want or like to reflect too much on the year that has passed, because it brings pain and sadness. Jacobs first year as a teenager was not at all what we expected, and it saddens me to think of the things that could have been, but aren’t. Being in high school, making new friends, joining the basketball team, running and playing on the farm with his brothers. As a parent, one of the things you want the most for your child is health and happiness and “normal”. We refuse to let cancer take away our happiness, but that does not negate the fact that this is so very hard. The day was good overall…decorations, presents, cake. As much as we could do for Jacob while he laid in his hospital bed. Jacob did say the next day when I asked if he enjoyed his birthday despite how he was feeling, that he was grumpy. This made me sad, and proud at the same time. Sad for his birthday to be celebrated like this, and sad that he also was reflecting on the past year, but proud of him because since this journey all began 8 months ago, that is the first and only time I’ve heard or have seen him grumpy. He inspires me every single day.
Jacob continues to struggle through the methotrexate rounds, with high levels of chemo in his body for many days after, and a lot of stress on his kidneys. His allergic reactions come and go, but seem to be more under control with various medications. He is currently on day 2, and hasn’t spoken a word in the last 30 hours. Mouth sores and mucositis have begun, and the last bloodwork showed his kidneys are again not functioning as well as they should be. Because of this, the chemo is coming out through his skin, turning his skin brown from the toxicity of the drug.
We heard sad news today that a baby boy we got to know and love at RMH passed away early this morning. Baby CJ was very sick, but he brought so much joy to several of us at RMH. I spent many nights holding him for hours. He was fostered by an amazing woman. Our hearts are hurting again for the loss of another child…but I am so thankful to have been a part of his 9 months of life here. I am trying not to question why, but after 4 deaths in the past month of dear children we knew, it’s very difficult to not ask that question.
For good news- Jacobs wound is almost closed! This is a huge deal, because he really needs to shower 😂. It’s also great because the risk of sepsis is lowered significantly now, so home becomes a safer place to be in between rounds. We are hoping to see the vascular surgeon at VGH on Monday to discuss if we can stop the daily blood thinners. The last ultrasound of his vein and artery that were sewn back together looked really good with no signs of clots. An X-ray is lined up for this week of his leg as well to check if there has been any healing to his bones.
And although this is also sounding redundant, thank you to all of you for your continued support – with prayers, love, visits, meals, texts, gift cards….many of you have made a long and hard road just a bit easier on us as a family. 💜