It’s still hard for me to even say that word. Relapse. But it’s our new reality. Our sweet Kendal Mae has relapsed with the same cancer she was originally diagnosed with. Acute Myeloid Leukemia. AML. After 17 months of living happily in remission, 12 months out of the hospital, we are back and fighting.
Since the news of Kendal’s relapse has spread, we have received multiple questions of how? I’m not really sure. And why? We would like to know the answer to this too. And didn’t they just have clear labs 2 weeks ago? Yes. Yes they did. And what now? A long road.
On January 20th, we had our 1 year off treatment labs. Both Kenedi and Kendal’s labs were in the normal range, however, Kendal’s platelets were a little lower than they normally had been. Since they were still in the normal range, and Kenedi was just getting over RSV, the doctors chalked up the platelets to Kendal fighting of a virus she could have caught from Kenedi. So happily, on January 21st, all 5 of us boarded a plane and took our first family vacation as 5 to Florida. We enjoyed a time on the beach, and Teagan got to spend 2 wonderful days at Disney while the twins stayed with grandma and grandpa. On our trip, there was NO evidence of Kendal not feeling well. Everyone was healthy and we were blessed with a great, uneventful trip.
We returned home on January 29th and on the 30th, Kendal had her 18 month well child check. Although we didn’t do any blood work there, everything checked out completely normal with Kendal. She was eating and drinking normally, no fevers, eyes, ears, throat all normal. She received 2 vaccinations (vaccinations which she had previously received*) and we went on our way. The rest of the day Kendal was a bit fussy and had a low fever that night – totally normal for 18 month shots. Tuesday morning she was again fussy and after not sleeping much the night before, her face was a little puffy. We chalked that up to allergies, and the fact that she didn’t sleep well. But come Wednesday when it was even more swollen and she was still fussy with a low grade fever, we took her in to be checked out.
Everything on Wednesday was negative. No strep, ears were clear, throat was clear, there was no drainage from her eye. No redness. We decided that it was probably just allergies to something in the air and were advised to bring her back if it got any worse. On Thursday she was again fussy but the fever was gone, so we assumed she was getting better. But on Friday morning when she woke up with her eye almost shut, we knew we had to bring her in again.
On Friday her ears were still clear, no strep, no influenza. The eye still wasn’t red or crusty. But her face was nearly unrecognizable. They decided to test her urine and take a blood sample. Her blood results showed that her platelets had plummeted to 55 (down from 180 at our one year post treatment check up) and Kendal was neutropenic. Gut punch. Of course we panicked and went home and called Mayo. Our oncologists at Mayo assured us that this can all be part of a viral infection that Kendal was fighting and not to worry. We were told to check her counts again on Monday and go from there. But we knew in our hearts we couldn’t wait that long. Saturday morning we got more blood work done and saw that her counts dropped even further. At this point, when we called Mayo they advised us to come there for further testing.
Sunday we made the trek to Mayo, and on the way made a pit-stop at urgent care for Teagan who was spiking a 103/104 fever and complaining of a headache. She tested positive for Influenza B and an ear infection. At that point, we also noticed on our stop that Kendal had drainage from her right ear – the same side where her face was swollen.
Upon arrival at Mayo the team took samples from Kendal’s eye, ear, and nose. She tested negative for influenza and RSV, but we later learned that her ear drum had ruptured. They also took blood and started an IV. After everything was done, we settled in and prepared for our bone marrow biopsy that would happen in the morning. All still with the hope that we were going through these motions, all for a simple virus.
Monday morning just before biopsy we learned multiple pieces of bad news. Not only did Kendal have cellulitis in her face, sinusitis, and terrible ear infections, but there were 7% leukemia blasts in Kendal’s blood. Her cancer was back. How quickly it moved. 2 weeks prior there wasn’t a trace of it. Even the Friday before, two days prior, there weren’t any blasts in her blood. Friday her ears were fine. Sunday an ear drum ruptured. This beast is quick and it’s nasty. Kendal’s bone marrow biopsy also revealed what we already knew, the cancer was back.
Our team quickly began making a plan and on Thursday Kendal had her hickman placed, tubes put in her ears (the ENT told me her ears were one of the worst he had seen), sinuses cleaned out, MRI completed, Lumbar puncture done and chemo given into her spinal fluid. It was a 6 hour event that was hard on her, but she woke up ready to eat and being her bossy self.
Chemo started yesterday, and today Kendal is resting. We are finally wrapping our heads around what the next 6 months will bring. We don’t know all the exact details yet because a lot of it depends on how Kendal responds to the chemo, but we will be going to bone marrow transplant. After this first round of chemo if she is in remission, we will move right to transplant. If she’s not in remission, we will do another round. We are nervous and heartbroken, but we are also determined that Kendal will beat this again.
Looking back on the last two weeks I keep trying to find a sign. A sign that we could have caught this sooner. But there isn’t one. Kendal was 100% fine until she wasn’t. Our team has told us repeatedly that we caught it as early as we could have caught it. And I’m so thankful for being a bit neurotic when it comes to anything medical with the girls and always pushing for further answers. We showed up to Mayo unbeknownst to us, with one very sick girl. A few more days without diagnosis and things could have been so much worse. And for that, we are grateful.
What do we do now? We wait. Wait for count recovery. Wait for to see if Kendal is in remission. We wait. Hope. And pray.
As always we are so thankful for all the thoughts and prayers. If you’ve reached out and I haven’t responded I apologize. We have been busy. Just know that I have seen all the comments and read all the messages and we appreciate the support more than we can say!
*No, Kendal’s shots had nothing to do with relapse. Kenedi received the same exact shots*
**Kenedi is still showing no signs of relapse. We obviously are keeping a very close eye on her and have a very low threshold to get her tested for anything. As we’ve seen with Kendal, this moves fast, so we are aware and will be vigilent.**