On ICS Living

We are in the hospital for round two. Yesterday afternoon we had a rare treat: Kneader's Bakery (YUM!) provided lunch for the ICS (Immuno-Compromised Unit) parents. I had the most fantastic time meeting other cancer parents and hearing their stories, sharing experiences ("my child is having a hard time being in the hospital, too!", "that doctor is so great!", "we're here for that same treatment"), and of course, eating some good food.

I seriously left the lunch feeling so charged up. What an amazing bunch of women - dealing with such heavy burdens, but with positive attitudes and smiles on their faces. I heard stories about families who were settling down for month to two month hospital stays for treatments, a child with leukemia found in the central nervous system, a child who has been battling a rare, fatal, auto-immune disease (his immune system is attacking his organs and other parts of his body) for eight years and is finally coming up on his transplant, a teenager a year and a half off treatment for Ewing's Sarcoma, who was diagnosed one week ago with Acute Myeloid Leukemia, families of tiny babies with leukemia waiting for bone marrow transplants (with their pre-school aged siblings as the donors!), and many more stories that would break your heart and open your eyes. It felt almost sacred to be sitting with so many brave people who are in the midst of some of the greatest refining fires of their lives. I was truly touched by the hope, and quiet optimism and cheerfulness I saw.

The ICS unit is an interesting place. I always have such conflicting emotions about it when I'm here. On the one hand, it is a place of infinite sadness. A place where parents quietly put together a make-shift dinner for themselves from the refrigerator in the parent laundry room, a place where you walk past tear-stained faces in the hallway, a place where you often catch glimpses of bald little head after bald little head out your window, a place where the shadow-like figures of parents silently walk the halls at night to change laundry around, get a drink of water, or just to get out of their room for a few minutes and think, a place of fragmented families. There have been times when I have overwhelmed by the sights in the ICS unit and I feel like my heart is going to burst with so much sadness.

But on the other hand, the ICS unit is a familiar place that feels safe (much like clinic does) where you see familiar doctors and nurses, where you are surrounded by people going through similar things - who just get it. People who know how long hospital stays just make you CRAZY, who know how hard it is to juggle your other kids around from babysitter to babysitter, who know the worry and heartache that comes from having a child with a life-threatening illness, people who understand steroid rage and steroid puffiness (no, my child does not eat too much Mcdonalds), people who know that the fridge is always crowded and oftentimes stinky :), people who know and love the sight of bald heads and smile instead of gawking awkwardly at the sight of them, people who understand terms like RTU, NPO, to get a chemo IM, CBC and CMP, NG tube, etc.

It is a place where you see some of the best of humanity - lots of service and volunteering, nurses going the extra mile to help your child during a rough night or to figure out a problem, and parents sharing soup they've made in the crockpot in the parent laundry room with other parents for dinner.

And it is a place of healing and hope and celebrating the small triumphs along the way: cheering for the family who finally gets to go home today, seeing a child with a walker taking some of their first steps in a while, and hearing the joyous revelry when a patient rings the "end of treatment" bell.

It's funny how you learn tips and tricks of ICS living along the way. Like, move the nurse call button close to your bed before you go to sleep at night, so you can press it without getting up and don't have to listen to beeping monitors for long. Or to bring PB&J and bread, meal-replacement bars, and some fruits and vegetables, so you don't have to eat so many meals in the cafeteria. And after a while (at least for us... we're a little slow), you may find that your child does better with a little more normalcy, so it helps to bring comfy pajamas from home for bed time. And note to self: bring my pillow from home next time - these disposable, two inch thick hospital pillows are just not cutting it. How many cricks in my neck and headaches has it taken for me to figure that one out? :)

Cancer is a many-headed monster, I'm realizing as I talk to other cancer families and from my own experience. The realization hit me with renewed force yesterday as I talked with families of patients here in ICS. Cancer doesn't just threaten the patient's life and cause problems and sickness. That's one of many things it does. It really is like a tornado, destroying and wreaking havoc on everything in it's path. There are many hidden effects of cancer that most of the world doesn't see, except for the patient's family. It causes pain and sickness and suffering. It produces many sleepless nights, rivers of tears, and endless worrying and wondering. It throws schedules and routines out the window. It wreaks financial havoc - medical bills and care expenses pile up and families lose their homes, have to declare bankruptcy, and struggle to dig their way out from under a huge financial burden. And it turns families upside down - I've heard so many parents of children with cancer talk about how they didn't have much of a marriage while their child was in treatment, how husband and wife felt like ships passing in the night as they saw each other in passing when they took turns staying at the hospital or shuffling other children around to the babysitters. There are stories that would break your heart about siblings of cancer patients who need therapy, suffer from anxiety, who think that they are always sick, who resent their parents for not being around while they were at the hospital with the sick sibling. Cancer patients and parents of pediatric cancer patients suffer from post-traumatic stress disorder. Etc, etc, etc. Cancer really is a beast. You don't just get cancer and get sick and then either not make it or get better. It is a torrential storm that rips through every facet of a family's life- and they are left cleaning up the debris for a long time.

The trick is how to keep your chin up in spite of it all - to not let cancer wholly define you. I've heard people say that you shouldn't let cancer (or other trials) define your child or you. And I've wondered about that and struggled and philosophized and thought about it a lot. Here's what I think - I think that it is true that you don't want horrible challenges to rule your life and cripple you and hold you back. I don't want to walk around ten or twenty years down the road short-changing myself in life and using the excuse that my daughter had cancer. I have the power to choose what my attitude and actions will be in any situation - no matter what is happening to me. That is one of the great gifts of the Savior's Atonement. But, I also think that big, life-changing, soul-rocking events do define you to a certain extent - how could they not? They are the big moments in life that break down the rough, coarse, weak, erring parts of you and (hopefully) help to build up a gentler, more empathetic, compassionate, patient, thoughtful, stronger you. So, yes, in a sense, those big trials do define you. It's a balancing act to let it define your life in perspective and in the right ways. It's hard to know sometimes how it's possible to move on and let go of fear and doubt and to live life. The other day I ran across some beautifully written thoughts about how to do just that. I think I'll end this long rambling of the thoughts and feelings that have been heavy on my mind and heart lately by directing you to that lovely story:

http://blog.cjanerun.com/2011/02/sunday-guest-post-series-j-scott.html

And p.s. After taking with different people in many different situations yesterday, it really got me thinking about how many blessings we have been given in the specifics of our situation and I thought I should write them down:

• Although Eric being in school and running his own business during all this is very challenging in it's own way, it is also a big blessing because he has more flexibility in his schedule and is able to be there for most doctor's appointments and hospital stays. We are better advocates/part of Elena's health care team together - I have the craziest memory ever and can recall important things and Eric has the guts to say the things that need to be said.
• I'm so grateful Lily is so young - hopefully she won't remember much about being bounced around so much.
• I'm also grateful that Lily is such a happy, easygoing baby - it makes leaving her places so much easier - on us and the babysitters!
• Things are kind of a mess with our insurance right now, but we still have coverage.
• Having lots of family close by to help babysit, bring meals, provide support is a HUGE blessing. And so is knowing that our family who isn't close by are willing to drop anything to come help us if we need it.
• Living in this country with access to clean healthcare facilities, medicine, and knowledgeable doctors and nurses is a great blessing.