“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.
This weekend we celebrated – celebrated? I’m pretty sure that’s not the right word, but what else do you say when you’re talking about some kind of anniversary? – This weekend was the one year anniversary of the twins’ diagnosis day. I can tell you almost every minute of that entire week. The scene plays vividly in my mind every so often, more so now that we are talking about the anniversary of it.
I was supposed to start work again that week after being off since March 17th due to complications with twin pregnancy followed by their premature birth and then my maternity leave. I was so excited to get back to normal, wear real clothes, talk with adults and get back to my career. I have never had the desire to be a stay at home mom. Of course there were times I felt slightly guilty about sending my kiddos to daycare, but for the most part, I was thankful to be able to work outside the home. I remember being particularly excited to go back to work because I wanted me time. Thinking back on that now, I feel guilty for thinking that way. I feel guilty for not wanting to spend more time with my precious girls.
Before getting the final results call from our pediatrician, I was still trying to stay positive. I couldn’t find any information on google of children this young being diagnosed with AML. And I found nothing anywhere about twins with the same cancer diagnosis (interesting to look back on now and think about how little there is out there about childhood cancer when it is the number one killer of our children). I remember being at work – I started that Wednesday, got the preliminary call Thursday and the final result call Friday – and receiving a text message from our dermatologist. One of the sweetest people we have ever met. She told me that Mayo was a great place and that is where she did her internship. She closed by telling me she would be thinking of our family as we embarked on this journey. That’s when I knew the final lab results were in. About 7 minutes later, I got that call from our pediatrician.
I don’t know if it was shock, or denial, but I didn’t cry. I called Aaron who left work immediately, I told my boss who let me leave as well. I’ve known Aaron for over 7 years now and I’ve seen him cry 2 times. One of those times was that afternoon when we received the diagnosis. Maybe that’s another reason I didn’t. I held it together for us at that time. (The tears did finally come for me – the night after the final diagnosis from Mayo I cried for about 3 hours in the middle of the night holding the girls. Those huge heave cries where you can’t catch your breath – that was me). After hearing the diagnosis, we spent the afternoon trying to wrap our heads around it and make sense of everything. Of course we couldn’t. It didn’t make sense. It never would. Aaron had previously planned to pour concrete for our back patio that day, so he composed himself and with the help of some friends got it done. We made the decision not to tell anyone except our immediate family members and people who needed to know, like our bosses and a select few people who would watch the house when we went out of town, just in case it was a false positive. So it was hard to be around people and pretend everything was just fine.
We spent the rest of weekend hanging out with our girls and soaking up every minute of family time we could. I went into planning and packing mode, preparing for our 1.5 weeks of testing at Mayo.
In the weeks leading up to this day this year, I’ve prepared myself for how I would feel. Happy that we’ve reached this milestone and the girls are doing well. Mad that we’ve had one hellish year. Mad that it’s not fair this happened. Guilt that not all cases of childhood cancer have an outcome like ours (so far). Anxious that our ordeal isn’t over. Fear of relapse. The truth is, you can’t prepare for reliving days like this. You can’t prepare for what will trigger the big roller coaster of emotions. The twins are learning to walk and stand and are falling on toys all the time. They are getting bruises from doing so and each new bruise fills me with this overwhelming panic that is pretty indescribable.
People tell Aaron and I that we are so strong but the truth is, we aren’t that strong. We struggle now and then with everything we’ve been through. I text one of my friends just the other day that I think I need Xanax – half kidding and half serious. Full discloser – I’ve been on anti-depressant medications before in my life. Late teens to early 20’s. They helped immensely! I know what the feeling of needing help via medication daily feels like and thankfully, I do not feel that way every day in the present. That being said, there are big feeling days. This next year is going to bring a lot of those days for us. *Hopefully* 1 year remission, 1 year ending chemo, 1 year off treatment and all the other milestones this next year will bring. To help me get through these days I have been seeing a counselor twice a month. Sometimes more when I feel like I need it and sometimes less when I feel like I don’t. I’ve learned valuable tips on how to deal with these big emotion days and I know I’ll continue to need help as we encounter more of them.
This year, I started diagnosis day off with a 7 mile run with a good friend. It felt amazing to get up before the sun was up and start the day with a hard workout – especially since I’m running for a reason. I’m participating in the LLS’s Team In Training event this November running a half marathon. I’m raising money to fund further blood cancer research in search of a cure. Please help me reach my goal by visiting our site here.
After my run, we had a fun breakfast complete with pancakes that looked like puppies, followed by play time and watching Wallykazam. Then it was nap time. Teagan went to one of her favorite peoples house overnight because Aaron and I were invited to a wedding Saturday night. I originally was leery about not staying with the girls. It felt strange that on this day I would get a babysitter and go out and be away from them. But Aaron reminded me that in addition to spending more family time together, we need to put our marriage first – date nights need to happen. So we decided to attend the reception and I’m so glad we did. We had a great time.
I know the next year will bring many more emotional days, days that will be hard to get through. We are heading into follow up appointments this week and next for the girls, and of course I’m already feeling anxious. It’s the longest we’ve gone without blood work or seeing our oncologists in over a year. We are praying for clear labs and a positive visit. Please keep the girls in your thoughts as we head into these appointments, as well as the next few months. We are approaching one year from first dose of chemo, one year for ending round one and one year of remission. A lot of big emotion days coming up, but we are ready for them.