Eight thoughts for eight months of "normal"

In about a week we will celebrate the eight month off treatment mark AND Elena's 3rd diagnosis anniversary. Three years! And eight months of us living under the radar. That's what it feels like at least, sometimes. Like we are flying under the cancer radar - holding our breath and trying not to be noticed and forced back into it all. But other times it feels like that was all a hundred years ago and we don't remember a lot of it. We forget to freak out and run for the thermometer every five seconds, we play with friends who have colds, there's no medicine to take - not one pill!, we run around barefoot, and Elena sometimes even complains about having hair and how troublesome it can be. :) 

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Elena on Valentine's Day this year at home!

So much better than Valentine's Day spent in the hospital!

I haven't looked back at any cancer stuff for a while. Looking at this picture kind of shook me up. The bruise/crazy explosion/freaky chemo side effect/whatever above her eye, the way her skin was breaking down into horrible rashes all over her body from the chemo, her accessed port, how tired she was, no hair - it's crazy how "normal" that was for us back then. Life is so different now. Elena is really thriving for the most part. It truly is wonderful and a miracle.

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Several times a week, I look around at how normal and relatively worry free we are, and my joy bubbles over. This life is awesome. Not having sick kids is really, really cool. I don't know how else to say it. We don't live in the hospital. We don't worry as much. I can't describe it. It's just really awesome to be "normal".

Sometimes, though, I look around, get a pit in my stomach, and think, "This has been such an amazing couple of months! Things just keep getting better. This can't last. We've had our share of good times and very little worry in the last few months. Something must be coming." It's been so long of dealing with crap after junk after awful after hard after crap that it's hard to relax. And we've learned that trials are a part of life. I'm not perfected yet - I've got lots to learn still. And a lot of years of life to live. What else is coming? When is it coming? 

There is also a lot of survivor's guilt at times. Mostly when we hear about other kids who don't make it. Why their child and not mine? Why do we get to have so much happiness and ease right now and not them?

We are trying to enjoy what we have now. And like I said, a lot of times we forget all the cancer crap and we just live and it's delightful. There were times I couldn't even imagine being at this point. It really is a blessing how far we've come. 

I wonder though if we'll ever be able to really relax. Just tonight, in fact, as I was putting Elena to bed, fears of relapse crept into my mind yet again. "She's so tired. She's been so tired lately - I don't think this is normal. She was laying with her head on the table as she ate her bedtime snack. Is something going on?" And then I scanned her body for bruises and tried to assess her skin tone and thought back over the days events to try and gauge it all-- a routine my mind knows all to well. It's a weekly (or several times a week) occurrence  Not on purpose - those thoughts and fears involuntarily pop into our heads. The curse of going through one of your worst nightmares, I guess. We're a little jumpy.

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Last week, I FINALLY cleaned out our large rolling cancer supply chest. It has been sitting in the closet untouched for the last eight months. I don't know why it took me so long. But it felt daring and exciting to sort through and throw away and empty all the drawers out. We may or may not have had some really, really expired heavy duty IV antibiotics left over from neutropenic at-home infusions that had been just sitting there for years. Because what if the world ends while you're child is immuno-compromised? That's a freaky thought. But now it's all in the trash. Deep cleansing breath.... ahhhhh. 

The contents of one of many drawers

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Now, the deets on the little miss and what's left of our cancer routine. It goes like this. Elena gets check ups once a month. For a long time. It will depend on a few variables, but her oncologist will follow her until she's somewhere between about 13-18. If I remember right (and I very well may not be because it gets a little confusing) we go for a check-up once a month for two years. Then every two months for two years, then every three months for three years. Then every six months for a year or two. And then once a year for a bunch of years. That's the basic gist. When she hits the two year off treatment mark, she goes to the "Survivor's Clinic" here where they'll run a bunch of tests - check her hearts function, etc. - to see if she's having any long term effects from the chemo. We were making the trek to the hospital for her monthly check-ups. But then our deductible started over with the new year and we worked out a new arrangement to save us a lot of money. So, our new cancer routine goes like this: the day before the check-up we go to the lab (free standing in a little medical complex in town because the insurance covers it then - weird, weird insurance) and get blood drawn. It's a standard blood draw from the arm. Then the next day, we go to the pediatrician for her check-up. He looks over her CBC and reviews it with us, checks her heart, ears, and lymph nodes, tracks her weight, height, and temperature, asks us how she's been doing overall and if we have any questions. And then we go home. We do that every month, except that every six months, we go to the hospital and check in with the oncologist who has just been keeping an eye on the ped's notes. It is a blessing to be able to save some money and travel time by doing that. But it turned out to be even more of a blessing in disguise because we have found that it has been very healing for Elena's mental and emotional well being to not continually be revisiting the hospital with all it's traumatic memories and associations. But more on that in a second.

As for Elena, other than our occasional worries, she is doing very, very well. A few appointments ago her oncologist said that she was doing perfectly and he couldn't ask for a patient to be doing any better off treatment. Her CBC's continue to look great, she is growing, so far no late effects from the chemo have shown up, and overall she's just doing excellent. She's finally mastered the potty, she's smart as anything, it seems like her hypoglycemia is less severe, she loves art and riding her bike and can't wait to start a gymnastics class. We feel so blessed.

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It turns out there are some perks to having cancer. Woot for free stuff. ViaCord Blood Banking has this awesome program called "Sibling Connection" where they will collect and bank for five years the cord blood of a baby who is the sibling of a cancer patient/survivor absolutely free. Sweet, right?! We are getting all signed up and little bebe's cord blood will be stored for Elena, in case she (Heaven forbid) ever relapsed and needed a transplant. Fingers and toes crossed that we never need it. But it is really nice to know it is there. 

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Back about four or so months ago, we started Elena in therapy. She has been struggling with a lot of behavioral and other emotional issues and we felt like some post treatment "exit counseling" would really help. Overall, she dealt with things remarkably well, but we knew there must be things that needed to be worked out. She was two and went through cancer, for pete's sake! She got poked over and over in the chest with a needle, got told she couldn't go outside, couldn't play at the park, couldn't see her friends, etc. Who wouldn't be a little messed up after that?! The Lord guided everything about the situation and the therapy has turned out to be such a wonderful thing for Elena and our family! I'm SO glad we did it. We found an exceptional therapist  - one who had never dealt with our exact situation, but had a lot of similar experiences and had just the set of skills and "tools" that Elena needed. We were truly led by the Lord in finding her.

Elena has been dealing with textbook Post Traumatic Stress Disorder and other attachment issues. Which mostly manifested themselves in a lot of crazy over the top "freak-outs" for lack of a better term, horrible troubles with anything potty related, often acting out more like a two year old than a five year old, lots of anxiety and acting out in medical settings (like being totally fine all day before the hospital, but once in the room she'd start kicking her doctors, get really loud and silly, stop listening and responding, etc.), and lots of other stuff. She'd have these meltdowns were she'd just be completely out of her head. There was no "getting across" to her - no reasoning with her. And a lot of screaming. It was crazy. Nothing like a normal little kid melt down. Eric and I could literally see her checking out of her mind and completely losing it. A lot of her issues have been extremely frustrating for Eric and me. The day I gave the overview to the therapist and she nodded knowingly and started explaining things to me was a revelation. All of a sudden, I could understand more of where Elena was coming from and why she was acting the way she was. It helped me so much - to let go of my frustration, empathize with her, and have a framework to deal with things that came up. It's long and complex, but besides the PTSD, etc., the therapist said that very young kids who have gone through traumatic events often get "stuck" developmentally in the stage they were in when the event happened. For Elena that was at diagnosis at just under two and a half years old. So, while Elena developed cognitively and physically as she should have, she kind of got "stuck" emotionally and even a little socially at age two and a half. When the therapist talked to me about that, it made SO much sense. We did a lot of work to help her process things relating to the PTSD, worked on re-bonding with her, spent quite a few weeks working on the potty issues, and just otherwise armed ourselves with good coping techniques and exercises to help us continue working on things at home. Have I mentioned that our therapist was wonderful and therapy was lifesaving?? Last month, we had a bunch of breakthroughs in a row. Elena quit diapers (can you hear the hallelujah chorus?). Then we went to the lab for her blood draw. She got nervous and didn't want to go in, but I pulled out one of the coping techniques the therapist taught us and she walked right in and sat down and didn't cry or fidgit one bit. That sounds simple, but if you'd ever seen her and the crying, struggling, screaming, freaking out ORDEAL that every blood draw - port or regular - has been, you would know that it's nothing short of a miracle. Therapy has been such a blessing for us. We were going weekly, but had our last regular session a couple of weeks ago. In a few more weeks, we'll go back to check-in and see how things are going. Then we'll just check in a couple of times a year and come in for any "tune-ups", as needed.

It's been interesting. Unearthing these issues Elena has has really stirred up a lot of feelings in all of us. We've had some emotional days as we've worked on processing things that happened. We were tremendously blessed all through treatment - truly carried and spared a lot of hardship. We got through it all pretty well. But, now that we're past the crisis and some of the effects are starting to become visible, it's hard. I never dealt with anger really throughout the whole of treatment. It was easy to be accepting. I wasn't even "mad at cancer" like I hear other families talk about. It happened, we got through it, it was a beautiful heartbreak, we learned incredible things, and I've made my peace with it. In fact - while I wish with all my heart Elena didn't have to be the one to suffer- I'm grateful for our experiences. I truly am. But, now I find myself having some of those "mad at cancer" emotions. On the days when I'm sitting with my five year old in therapy, while other five year olds are in school or playing at the park. Or when I watch Elena playing with other kids her age and the differences really become visible. Or when I see the fear in her eyes and watch her retreat into a dark place in her mind when she is reminded of some of the things she went through. Then I get really angry at cancer and the damage it has done to my sweet, innocent girl. I have days where I mourn - oh how I mourn- that sweet two year old I was so in love with. I know she is stronger, more empathetic and compassionate  more thoughtful, and wiser for all she has been through. But sometimes I can't help but wonder about what she'd be like if none of it had ever happened. Along with the good qualities she's been forced to gain have come some hard things, too. (And now, cue: survivor's guilt. How can I complain at all when she is still HERE with us?!) Life is a funny thing. I love Elena. And I admire her so much. She is an INCREDIBLE girl - one of the strongest I know - just as she is now. We've got a great life ahead of us. And I know that no matter what happens or what we feel or miss or worry about, one day everything will be made perfectly right.

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And now that I've sufficiently vented and cried and given myself my own mini-therapy session (for FREEEEEE! Blogs are so useful.), on to the happiness! Elena is just about to her three year diagnosis anniversary! It is incredible and so happy! We are having our annual "Day of Hope" blood drive on Saturday, March 16th, in Tempe. (If anyone out there that reads this lives in the Phoenix area (or has family that lives in the Phoenix area - you could spread the word!), we are still several donors shy and would LOVE your blood! :) You can pretty much have your pick of slots anytime from 9-1:30 p.m. Leave us a comment or call or go to bloodhero.com to sign up. Search for Elena Hoffman.) If you don't live in the area, please try and go give blood sometime this week (or anytime!) in Elena's honor. We'd love it if you dropped us a line and told us about it - it does our hearts good to hear. And then, after the blood drive, I think we will party. I feel like celebrating - Elena is a rock star and she did it! Three years of kicking cancer's freaking, ugly, stupid trash!

Here's to life! You are our hero, Elena!