I haven’t updated in a while so this will be a long one, as a lot has happened in the recent weeks.
In the 2.5 weeks since being discharged from round 2 of chemo, Kendal has attended 22 different clinic appointments in preparation for her bone marrow transplant. But before those appointments even happened, she had a repeat bone marrow biopsy completed to ensure her remission status. And that is where all the drama began.
3 days after her repeat bone marrow biopsy, we learned the results and they were not what we wanted to hear. Kendal had relapsed within her relapse. At the smallest level, there was 1.7% of her leukemic clone in her marrow. 1.7%. That small amount turned our world upside down once again. We received the call on a Friday – the Friday before the week of 22 pre-transplant appointments – our team informed us that if Kendal’s cancer was once again, blasting off, that we would not be able to proceed with transplant and we would need to find another chemo regimen to get her on. But if the cancer was still under 5%, we could continue to transplant. The way to find out was a repeat bone marrow biopsy. So instead of spending our last weekend together as a family, pre-transplant, Aaron and I began packing for another overnight stay in the hospital in preparation for Kendal’s repeat bone marrow biopsy that Saturday morning.
To add to the stress of the situation, Teagan had a bad cold, an ear infection and croup. So we were doing our best to keep her and her germs away from Kendal. As I was packing up some things to bring to the hospital, Teagan ran up to me and gave me a hug on my legs. I quickly told her “Oh Teags, I’ll give you big hugs when I get home. You can’t hug mom right now because we have to keep our germs away from Kendal” (Aaron was going to spend the night with Kendal while I spent time with Kenedi and Teagan back at Aaron’s parents’ house). About five minutes later, Teagan did the same thing to Aaron and he again explained that we had to be careful with our germs around Kendal so he couldn’t give her hugs at that time since he would be staying in the hospital overnight with Kendal. Before we were leaving, I was looking for Teagan. I hadn’t seen her in a while and I wanted to tell her I’d be back in a bit for a movie night and cuddles. I found her sitting alone upstairs on the couch with tears silently streaming down her face. Talk about a shot to the heart. I quickly scooped her up and explained that I would be back shortly for a night with just Teagan and Mommy, and then I cried all the way to the hospital.
Cancer doesn’t just affect one person within a family. It sends ripples throughout the immediate family, causing issues everywhere. Teagan is a strong little girl and she knows we love her very much, but that doesn’t make it any less difficult for her when we have to put so much time and effort into taking care of Kendal. We do our best to show the girls we love them all equally, but sometimes, little kids have big emotions. And that day, Teagan was having big emotions. I am happy that the following 5 days I was able to spend time with JUST Teagan back in Pierre. It was just what she needed, exactly when she needed it. But that day, seeing her tears, was a painful mom moment.
Let’s jump ahead to the results of Kendal’s repeat biopsy that Saturday morning. We learned that the cancer was still there, at the same amount. 1.7%. This was good news because it meant we could continue with transplant. However, it is still a bit unnerving going into transplant with active leukemia, but at this point, it’s our best possible option.
Kendal was seen at her 22 different clinic appointments this week and cleared for her transplant. Her organs are working optimally and we were given the green light. Tomorrow we check into the transplant unit to begin 10 days of conditioning chemo in preparation for transplant. One of the chemo therapy drugs Kendal will receive can cause seizures, so Kendal must take an anti-seizure medication to combat this. We began that medication – Keppra – earlier this week, and to say that the drug is awful would be an understatement. It makes Kendal unbalanced and very emotional. She will have bouts of rage for no reason and there is no way to console her. It also gives her a glossed over look. A blank stare when she isn’t angry. This drug is brutal, but necessary.
Another fun spot in our week has been the unexpected and disgusting diagnosis of c-diff in Kendal. At its worst, Kendal had to be changed, diaper and clothing, 14 times in an hour. Kendal has spent 188 days living in the hospital. Approximately 150 of those days she has had no immune system, and we managed to avoid c-diff until now. I know that c-diff isn’t the most awful thing Kendal could have at this point in time, and in fact is very common in immunocompromised children, but after having a relapse within a relapse, after dealing with Teagan being sick and heartbroken that she couldn’t spend time with Kendal like she wanted to, after having 22 appointments crammed into one week, after spending the week packing up our house for our move to be closer to the hospital, the c-diff diagnosis was the straw the broke the camel’s back.
If I’m being honest I was distraught upon learning about the c-diff and was just done with this whole cancer situation. Distraught probably doesn’t even describe how I was feeling. Inconsolable is probably better. I was done. Done with medications. Done with tube feedings. Done with appointments. Done with traveling. Done with missing my other kids. Done with missing my husband. Done with missing my bed. Done with not having a normal life. I didn’t want to deal with trying to decontaminate the entire house from c-diff (which is VERY hard to kill and VERY contagious). I didn’t want to deal with 10 days of chemo prior to transplant. I didn’t want to deal with transplant in general. I didn’t want to deal with the very real possibility that things might now work out the way we want them. That Kendal’s cancer might come back even post-transplant, or that Kendal might get too sick during transplant and not recover. I didn’t want to deal with any of it anymore. So I sat on the floor and cried for about an hour. One of those big ugly, near-hyperventilating cries.
Here’s the thing. I can’t be done. When your child is depending on you, you can’t give up. You can’t tell them “sorry kiddo, I’m just done with this!” That’s not reality. The reality is you get to have a moment to cry and be pissed as hell about the situation, pissed that there’s a possibility you won’t have all 3 of your children together again, you get to feel that, and then you get up and continue on. That’s the reality of a parent of a child with cancer. The thing you don’t get to do is dwell on any of these negative facts. Or dwell on the severity of the situation. I’ve learned that it’s okay to have feelings and fears. It’s okay to have a minute and grieve the situation. But it’s not okay to give up. So you don’t. You can’t.
Childhood cancer is not fair and it frankly sucks. And I will tell you that a relapse of cancer is so much harder than the initial cancer diagnosis. With the initial diagnosis, you are just surviving. You don’t know enough to have the fears that you have once there is a relapse. The odds are still (most of the time) in your favor with initial diagnosis. With a relapse, the odds of beating it not only go down, but you are aware of that and you are aware of all the nasty crap and side effects and chaos that is in store for your kiddo, for you, for your family. These last 3 weeks have been some of the hardest days and minutes so far for us on this journey, and we know there are more very difficult moments ahead. Which is why we continue to do our best and remain cautiously optimistic that Kendal will beat this beast.
On May 4th, she will receive her bone marrow transplant. I have received many questions on what that exactly looks like so I plant to write a post about that soon to hopefully clear up some misconceptions on the process.
Thank you all for your continued support and kindness. We appreciate it more than we can say.