“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.
This post will probably be mostly photos, but I wanted to give a little update on how the girls are doing, first.
On May 1, the girls turned one. It was their golden birthday and since the color of childhood cancer awareness is gold, we had to throw a golden bash! Which wouldn’t be complete without some hints of pink in there. We had our close friends and family around us and really enjoyed their special day.
I’ve received some messages from our sweet readers and followers, wondering where I’ve been. Wondering why I haven’t posted blogs, photos, or many updates for that matter, on the girls. Wondering why there has been silence. And I’ll admit. I have been silent. I’ve felt like writing, I’ve felt like sharing, but each time I sit down to do so, I draw a blank.
**I believe this post goes for any medically fragile child or traumatic experience or tragedy anyone faces; however I can only speak from the childhood cancer perspective**
There are some things veteran childhood cancer families tell you at the beginning of your childhood cancer treatment that you take seriously. Like “It will be hard” “They will puke a lot” “You will be tired” “Childhood Cancer Sucks” “This will change you” and so on. But then there are the things you brush off. The things like “Ask for help” “Take breaks, you will need them” “Childhood Cancer is hard on a marriage” and “You will lose friends and family over this”.
I thought “What? I’ll lose friends because my twins have cancer? How can that even happen? All of our friends have been so supportive. More than supportive. Without us even asking they’ve thrown fundraisers, made meals, watched babies, brought/sent care packages, checked in via facebook/email/phone/text. Our friends have helped carry us through the hardest thing we’ve ever faced. How would we lose them?”
I have recently shared a few fellow cancer fighters pages and updates on my personal Facebook page. I don’t do it often, but sometimes my heart compels me to do so. I share so that a child or family can receive extra thoughts, prayers and love. Also to continue to bring awareness to pediatric cancer. Some of the reactions I’ve received from doing so, have been surprising. I am so thankful for those friends and family members who have been supportive of my girls as well as other cancer warriors. And who do comment so nicely and heartfelt on my posts about them. Some friends have reached out via text that they are thinking of our friend, or they are heartbroken when I posted about Grant passing away, or praying for Hannah hearing the news of relapse. Thank you, sweet friends. Thank you.
But then there are the other messages I’ve received, or comments I’ve heard. Some have asked me to stop posting about childhood cancer. “Your girls are in remission, stop being a downer.” “I can’t look at those posts of sick littles, it makes my stomach hurt.” These comments hurt me. Hurt my heart. Yes, my girls are in remission, but remission IS NOT THE END. It’s a great step, but our nightmare isn’t over. And it never will be. (I don’t let that define us, though. We are happy and we continue to move on with our life, but that doesn’t mean that we never talk or think about childhood cancer or the others still fighting.) I am sorry that the photo of our friend fighting for his life made your stomach hurt, I hope you never have to experience the feelings his family feel. That my family feels. I don’t wish it on anyone. I don’t post to make you sad, but to bring awareness to the issue. To give you a small, small glimpse into this life. Our forever changed life that includes childhood cancer. It’s our reality, and I’m sorry if that reality makes your stomach hurt or makes you sad.
If you follow me on social media, you would have seen a post recently about my Saturday dates with Teagan. Since being back from the hospital with the twins’ treatment, I’ve made a point to spend extra quality time with her. We usually go shopping for groceries, sometimes to get breakfast and a coffee, other times on a walk or a run. Whatever it is, Saturday mornings are Teagan and mommy time. It’s usually pretty low-key, until this last weekend when we attended a Disney Princess Ball.
In the last 6 months or so, Teagan has really started getting into Disney and the princesses. I secretly love that she likes the classics like Sleeping Beauty, Snow White, The Little Mermaid, Beauty and the Beast and Cinderella more than Frozen (don’t get me wrong, there’s plenty of Frozen fan-girling going on in our house) but I just enjoy that she is well rounded in her princess obsession. About 2 weeks ago I started talking about the Princess Ball that we would be going to. I wanted to keep it a secret at first, but I realized that I would need to get her a new dress and it was also suggested we don’t keep it a surprise because that tends to upset children sometimes and I wanted her to have the BEST time, so we didn’t risk it.
I hear this phrase from my threenager often. Usually it’s shouted in a loud shrill “NO! I DON’T WANT TO!!” And that’s how I’ve been feeling for the last few days, friends. I just don’t want to.
When my alarm goes off at 6:00 am, I just don’t want to get out of bed.
When Teagan is being a threenager, I just don’t want to deal with her shenanigans.
When it’s cold outside, I just don’t want to take Ammo out.
I just don’t want to do the dishes.
I just don’t want to string up the feeding pumps again.
I just don’t want to sweep the floors, do laundry, or pick up baby toys.
I just don’t want to work out.
I don’t want to meal prep.
I don’t want to try and try and try to get Kenedi to eat or Kendal to crawl forward.
I don’t want to pack everyone up and go to follow up appointments for the twins.
I just don’t want to.