After spending my first night away from E since she was diagnosed:
First off, thank you so much to everyone who dropped by to leave kind words and say “go to that wedding!”
One friend reminded me that Elsa’s journey is not anyone else’s journey. She’s not the little girl with the Ikea pillowcase – she’s just our Elsa. The same friend also volunteered to be my official “googler” – someone to sift through the tomes of cancer websites and pick out only the good stuff. I can’t promise that I will obey the “no more googling” law, but I can try.
My wise cousin – who is many years down the road in her own cancer story – gave me a small glimpse into our own possible future. She is now able to look back on her own early struggles and feel compassion for the weary woman she once was. Weary, I am. She also encouraged me to find some alternate activities that don’t include “wallowing.” John and I watched “Bridesmaids” and it made me vow to watch more funny movies. They really are therapeutic.
Another lovely reader – a woman I have never met, but who follows our story – she encouraged me to go the wedding and dance like Elsa is watching. I liked that. She’s right. It’s really important that we invest in Elsa’s future by maintaining our own sanity and Elsa needs to see her parents having fun. This is a very long road and I’m glad I took the opportunity to get away when I could.
Thank you to everyone who stops by and reads and comments. Your company through all of this is invaluable.
Updates have been slim this week since I have been feeling a bit “blah.” I am happy to report that Elsa is doing well, though. In good spirits, running around, tormenting the dog. The usual.
When we walked into the hospital this past Monday for our weekly clinic visit, my heart sank. I just wanted to scream, “I’m done now! Enough!” During our first week in the hospital, our Leukemia 101 professors kept reminding us that leukemia treatment is a marathon and not a sprint. I think that, for the first time, I’m really starting to feel the weight of that statement. I’m at mile 2 and already my muscles are burning.
Took a break. Went grocery shopping. I’d like to be able to say that I’m feeling renewed, but I think I’m feeling worse.
I’m not sure why I did this, but I googled “Leukemia blog.” Why google? Why do I do this to myself? The first two that I clicked on were both written by or about people who have died. The second one was actually about a girl diagnosed at age 22 months and then in remission for 7 years. Mysteriously, she relapsed at age 11. Died. In a lot of her pictures, her head is laying on the same Ikea pillowcase that J and I have on our bed. Were I in a better mood, I would put my blinders on and continue with my day, repeatedly telling myself, “She’ll be fine. She’ll be fine.” Instead, I just feel awful, like that pillowcase was a terrible omen. Today, Elsa feels like a ticking time bomb, wrapped in this happy, smiling, toddler costume.
Children die from this. They spend time in the ICU, hooked up to machines and tubes. I just can’t. Can’t. Can’t. Think about that for Elsa. I can’t. I honestly haven’t felt like this since early in her treatment. Hopeless and afraid and unable to push these awful thoughts out of my head.
I know this will pass. These feelings.
Took another break. 24 hours passed. Time spent. Feeling honestly better today. Still sad, but now allowing myself to pursue any more google searches. I’m heading to Philadelphia for the night – for a close friend’s secret wedding reception. I didn’t think I would be able to go, but I’m forcing myself – I would regret staying home. There couldn’t be a better time for me to leave, really. She is tolerating consolidation so well. All of her side effects from the Day 1 dose of vincristine (pain, change in taste resulting in no appetite, constipation) have passed. She is sleeping through the night for the time being.
More hours have passed. This is what it is like trying to write a blog post with a 19 month old in the house. On my way to Philly. Nervous, but excited to be fancy free for approximately 22 hours. Putting away whatever dark feelings I have. Telling myself that all will be well while I’m away.
I know life is getting a little more “normal” because I am back to my old procrastinating ways! I have about 8 unfinished posts to tackle, a slew of “thank-you” cards to write, a number of house organizing projects, wedding photos to edit (that is the subject of another post!) and a handful of undone errands. I’m happy to say that, for the time being, “wallowing” has been taken off my list. My handy little kitchen chalkboard has even awoken from it’s dormancy to tell me what to do every morning. I can barely contain my enthusiasm for having a looming “To-Do” list again that does not include, “Stop all other activities and be miserable about Elsa’s cancer.”
Now for some treatment information since I know that is why most people are here reading.
We are on Day 53 of her cancer treatment.
We had a 9 day delay in starting the next phase of treatment. These delays are normal, but frustrating when all you want to do is get this crap over with. Elsa’s bone marrow was pretty severely depressed after 29 days of the Induction onslaught so it took her awhile to “make counts” in order to start the next phase. Whenever I talk about “making counts,” it means that we are waiting for her ANC (the # that tells us the strength of her immune system) to reach a certain level where it is high enough for the next onslaught. In this case, they wanted her to be above 750 in order to start Consolidation. We had two visits where we went in, prepared for chemo, but they sent us home with a “Sorry, no chemo today.” We called it our “Chemo Vacation,” and you’ve got to love a chemo vacation, even if it is unplanned. Finally, she made counts on Tuesday, September 6th.
We are now on Day 7 of the 2nd phase of treatment called “Consolidation.”
Consolidation is considered one of the easiest phases throughout treatment and is certainly the easiest phase for the next few months. Thus, we are trying to enjoy ourselves heartily before things get ugly again. Here is what the Consolidation schedule looks like:
-Vinchristine IV (into her port) on Day 1
-Methotrexate IT (into her spine) on Days 1, 8, and 15
-Mercaptopurine (oral chemo – also called “6-MP”) by mouth every night for 29 days.
Easy, right!? I know it sounds nuts, but by chemo standards, it really is a breeze. Two of those drugs are known enemies to us (the Vinchristine and Methotrexate) so we are already pretty experienced in dealing with their side effects. She gets sedatives during the spinal taps so those go pretty smoothly now. So far, the 6-MP hasn’t been giving us too many issues except for a pretty marked decrease in her appetite. All in all, except for the baldy head, she doesn’t really look or act sick for the time being.
Working on another post: Consolidation In Pictures. Coming soon!
For now, I leave you with this blurry, but aggressive dose of cuteness:
I’m very lucky to be related to a really wonderful woman who has sent me some excellent advice over the last 38 days. She is a writer, a photographer, and a cancer survivor, herself. Since we received the news of Elsa’s remission, I find myself revisiting something she wrote me:
One challenge that all cancer patients (and their families) face is dealing with what is known rather than succumbing to the fear of what MIGHT happen. What MIGHT happen exists only in your head. It is not reality. So when it grabs you by the throat, just give yourself a mental hug and say, “Awwww, poor baby. You’re scared, aren’t you?” Being scared is not a nice feeling. Be sympathetic to yourself, because often you don’t share that fear with everyone.
Yes, Elsa is in remission and that is wonderful news. Yes, I am boundlessly thankful for her speedy response to the first month of treatment. There are moments though. Moments where I get stuck deep down in what MIGHT happen. What MIGHT befall my sweet, small one. I read a blog about another little boy with ALL who was told he was in remission on Day 29. Then, days later, they came back and said, “Sorry. We made a mistake. You are actually sicker than we thought and you need a bone marrow transplant immediately.” I know, I know. This is where you tell me to “Stop reading those damn blogs Georgia!”
When Elsa was first diagnosed, our doctor and his team sat down with us for two hours to go over what MIGHT happen. Having an airline pilot father, I can’t help but imagine Dr. Parikh as our captain, making announcements over the loudspeaker:
“Welcome aboard folks to Flight 300, traveling from Acute Lymphoblastic Leukemia into the unknown future. We are happy to announce that there is a very good chance you will exit the plane in two and a half years with a cured child in your arms [everybody on board cheers and claps enthusiastically!] Before we take off, please direct your attention to the flight attendants at the front of the cabin as we go over some of the safety regulations on this aircraft. There are some serious risks associated with flying our airline, but, unfortunately, the risk of not flying is certain death. [everybody on board groans]. While myself and your cabin crew will take every precaution necessary to ensure your safety, please prepare yourself for the possibility of: learning disabilities, partial paralysis, blindness, brain damage, severe allergic reaction, severe kidney damage, and death. . .”
I know I’ve already said it, but Elsa’s total 180 degree turn around this week has been wonderful. The majority of this week, I have spent enjoying our time as a renewed little family. We have spent an inordinate amount of time dressing up dollies, playing peek-a-boo, reading books, singing “Head, Shoulders, Knees and Toes,” and affixing stickers to every surface in the house. From time to time though, I’m struck by a sudden need to return to our treatment protocol binder and furiously search the internet for what’s next. What new drugs will she have to take? What horrible side effects will they bring? I have brief moments of horror where I look at her and realize, this is nowhere near over.
Then I realize I am getting caught up in what MIGHT happen. And this is not reality. I cannot know what MIGHT happen. I cannot anticipate how she will weather her future treatments. I can only know that, today, Elsa wants to dress up in a winter hat and three different bathing suits all at once and then laugh maniacally over her clever choice of outfit. So today, wearing a winter hat and three bathing suits: that is our focus. And tomorrow, whatever we MIGHT face: That hasn’t happened yet.