The other day I bought a Halloween outfit for Teagan and then a coordinating one for Kenedi. I didn’t buy a matching one for Kendal. Teagan was with me shopping and when she asked me why we weren’t getting Kendal one, all I could muster up to say in the middle of target without breaking down in tears was “she doesn’t need one sweetie”, and thankfully, my typically-curious-question-machine-4-year-old didn’t push any further.
It’s been a while since I’ve written anything. It’s not that I haven’t wanted to, it’s just that I couldn’t get myself to do it. Writing down, or saying out loud some of the thoughts you have once you are told “there are no more options” for your child is a difficult task. I’ve felt paralyzed and sometimes ashamed by these thoughts and feelings, but it’s time to get them out.
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.
I have spent the last month trudging my way through the roller coaster of emotions that come with grief. Grieving, yet again, the loss of a part of Kendal’s childhood, grieving me missing a part of Teagan and Kenedi’s lives, the loss of my amazing job (I resigned due to Kendal’s transplant and her not being able to go back to daycare for the foreseeable future), the loss of the normal life we had built up again after cancer rocked it the first time. I’ve been mad, sad, happy, depressed, inconsolable and everything in between. But most of all I’ve felt guilt. An overwhelming amout of guilt. All of this has left me less than inspired to write something. Until today.
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.
“The preliminary lab results are pointing to Acute Myeloid Leukemia, but I don’t want you to worry, that’s highly unlikely. However, I have contacted Mayo and we will know more about once we get the final report tomorrow…” The final lab report stated the biopsy that was completed from Kendal was positive for blast cells that were indeed AML. And so our nightmare began.
That’s an odd statement to read, isn’t it? Thankful for Cancer? I know first-hand the devastation and havoc cancer creates when a family member is diagnosed. I know this times two. The agony of watching my infant twins undergo the harsh treatment of chemo therapy while I stood idly by, helpless and pained for them. I know the anger that burns deep within your soul when you’re told of the survival rates and percentages and chances of relapse, the anger that turns to unimaginable pain and fear when you come to the realization that there is a very real possibility you may outlive your child. In my case, children. I know all those feelings but yet, I am still thankful for cancer. Let me explain.
It’s July 12th already?! No! Anyone else feel like the summer is flying by? The other day I realized it has been way too long since I last wrote to everyone. And we have a lot to catch up on!
In June, all 3 girls and I ventured to Minnesota where we spent a month going through tests for the twins’ 6 month off treatment checkup. We had dietician, oncology, labs, ENT, Physical Therapy, Neurology, Cardiology and a few other appointments, an MRI, tubes placed for Kenedi after her hearing test revealed she had hearing loss in her right ear from reoccurring ear infections and standing fluid, an EEG for Kendal, and Echos and EKG’s for both girls. Since we have two littles, they have a very difficult time scheduling us. So for 3 weeks, we traveled from my in-laws home 45 minutes away, to Mayo, nearly every single day.
Kenedi was given the all clear to pull her NG tube. That was such a happy surprise for us! She also had been experiencing reoccurring ear infections so we got to meet with a fantastic ENT who reviewed the results of her hearing test and immediately scheduled her for tube placement in her ears. Since Kenedi was born with a sacral dimple, we were already scheduled for an MRI to get that checked out. After some shuffling around, they were able to get her two surgeries (the MRI was done under sedation) at the same time. Her tube placement in her ears went great! And the results of her MRI were that her spinal cord is not tethered. Some answered prayers right there.
While we were in Minnesota, Kendal had some strange shaking spells where she would twitch uncontrollably for a few seconds at a time. After a long ER visit, an EEG and a visit with the neurologist, we learned that it was nothing serious. More answered prayers.
The girls’ lab results were still NED, which is fantastic news. Their Echo and EKG’s were within normal limits, although they have changed slightly, we will just continue to watch that. They will receive Echo’s and EKG’s every 6 months for the rest of their lives. They have been surpassing all our goals in terms of their gross and fine motor skills. So much so, that they have been discharged from in home PT and OT visits. We also have been discharged from Speech Therapy.
We will continue to follow up with our labs and physical exams every 6-8 weeks at Mayo. We have one final dietician appointment before we can claim that we are tube free for good, which of course I’m anxious about. Kenedi will have a follow up hearing test done to see if the hearing in her right ear is coming back. We are hoping for good results there. And the girls will continue to follow with Birth to 3 to make sure they are progressing in gross and fine motor skills.
On top of a medical update, I want to update you all on some changes happening in the Breyfogle household. All three girls are now going to full-time daycare. This leaves me anxious but also makes my heart explode. We love our daycare provider and I love that all three of my girls are together all day every day – something I have been wanting for the last year.
Speaking of the last year, we are fast approaching the girls’ one year diagnosis date. I know this day will be emotional for me, and for some in our family. But instead of allowing it to consume me I’m going to face it head on and continue to find joy in the every-day-crazy-busy-overwhelming life we live.
When your child is in treatment for cancer, you are taught that even a common cold can be deadly. But when off treatment, you’re told “it’s just a cold, they will be fine”. The change in thinking is very difficult to wrap your brain around and often, common sicknesses leave us cancer parents in a state of constant worry, panic and stress.