Never Give Up

I feel like I'm living in a swirl of emotion again (or maybe I should just say still).

We are still recovering from being in the hospital.  Julia seems to be getting over the croup and is keeping all her meds down.  She has been feeling pretty good.  Her appetite has been strong and we have actually been successful in finding things she wants to eat.  She is still very moody, agitated, and irritable.  We try to just ignore as much as we can, deep breathing works wonders.  Yesterday she was just a mess by the time she took a bath.  She was yelling, crying, and indecisive.  I got her into her pajamas and tucked into our bed.  She said, "I just feel so yucky." She still doesn't elaborate much, so we just leave it at that.  Today she has been pretty tired and slept a lot of the day.  We are so thankful she can rest comfortably and sleeps well.

I am unfortunately now battling a cold- yuck- possibly strep (we'll find out tomorrow).  Doing everything I can to not pass it to Julia, but it's one of those things you just have to accept.  Like they told us at the beginning of chemo.  Your family will get sick and your child will get sick- you can't prevent it.  It is still a daily struggle.  If it were up to me everyone would just stay home until spring.  But that isn't possible.  Billy has to work.  Carter still goes to Awana, soccer games, and Sunday school (most of the time).  It's just so hard.  You feel like you are playing roulette with your child's health and life.  It's hard not to feel guilty when she gets sick.  With this last fever and hospital stay as I was driving to the emergency room at 3am, I couldn't help but wonder where did she get it from? What did I forget to wipe? Did I let her take mask off? It's relentless.  I know I can't control it, but I can't help it sometimes.

We are still very cautious.  Julia stays home 99% of the time.  When she is out, she is in the jogging stroller, shade down, and mask on.  She doesn't touch anything when we are out.  We wipe down surfaces with lysol wipes.  We use hand sanitizer faithfully.  We had our flu shots.  We'd love swine flu shots (if they ever come out!)  Someone said, don't you wish there were special glasses you could wear to see where the really dangerous germs were? Yes and no.  It seems like every time I reach a place of peace about it, trusting God, and just letting go- one of us gets really sick.  It's going to be a long fall/winter.

We are still cautiously waiting her end of treatment scans.  It didn't hit me until we were in the ER over the weekend and they said they wanted to do a chest x-ray for her cough.  As I stood behind the half wall watching her wail strapped to that board, it hit me that we were getting a look inside her lungs.  The big danger for anaplasia Wilms' cancers is spreading to the remaining kidney and spreading to the lungs.  I couldn't help but fear what we might find.  Twice during our stay the nurse said, "Don't leave the doctor wants to talk to you." Each time I thought, "Is this it? What did they find?"

This is something that will never go away.  We have to find a way to make it a part of our life.  We have to live in the spaces in between.

It is just all so messy.  When you think about facing a major challenge in life you want to be as prepared as possible to handle it.  But cancer doesn't work that way.  It attacks in the dark, devours the innocent young, steals joy, and causes pain.  Ask any cancer parent and they will tell you it came out of nowhere and their world just stopped in that moment.  You don't have a chance to prepare- get your life in order, prepare your other kids, get enough sleep, or plan.  You just have to do it.  Life becomes day to day, week to week, month to month in the good stretches.  It is a blessing in that you learn to seize the day and enjoy every moment, but it also brings frustration when you just want to make things better.  The times you want to spend playing with your child, but their pain/mood/drug side effects make that almost impossible.  The opportunities you want to enjoy, but someone gets sick.  The days when the sadness just overwhelms you.  I just feel trapped in it at times.

I've been thinking a lot about families dealing with cancer.  We've been praying for precious little Ellie- a 7 yr old with rhabdomyosarcoma.  She fought her cancer and beat it last year, only to have it tragically recur.  They are now living every parent's biggest fear having to make the decisions about how and if to treat their daughter.  When I read their words, my heart aches, the tears flow, and I feel sick to my stomach.  They are faced with admitting Ellie for 8 straight months of hard core chemo (because of the hospital restrictions now, her twin sister would be unable to visit), possible hip/leg amputation, experimental chemo, or doing nothing (read their Oct4th journal entry).  They just recently posted their decision (Oct14th journal entry) and I honestly have to say I do feel a sense of peace and hope for them.  They have a peace and clarity that can only some from God.  I truly admire their decision and life choices.  And continue to cry out to God on their behalf.

It has ignited a fire in me to use our experience and to fight on behalf of all these kids to bring attention to pediatric cancers.  There are thousands of children whose very life depends on our action. 

• 46 children are diagnosed every day and 12 of those will die within 5 years
• 12,600 children join the cancer battle every year (160,000 worldwide)
  
• 80% of pediatric cancers have metastisized at time of diagnosis as opposed to only 20% of adult cancers 
• the intense chemo and radiation used for pediatric cancers cause lifelong disabilities in many patients
  
• we lose over 3,000 children every year to cancer, cancer remains the #1 disease killer of American children

As September ended and October began it was hard to not be bombarded with the pink.  It's everywhere from the yogurt to clothing to cookies to the NFL to toilet paper to TV.  It has been a hugely successful effort from the hard work of many individuals.  I can't help but feel pangs of anger.  Why does breast cancer month take center stage but childhood cancer is ignored? It's hard to understand.

• 1 in 8 women will get breast cancer, but 90% survive

Breast cancer is the most highly funded cancer in America.  They have developed advanced targeted therapies.  90% of breast cancers are treated with hormone therapy.  Only 10% require chemo and radiation.  This is a huge victory.  Our children deserve the same.  Cancer researchers are working to find targeted chemotherapy treatments.  I love the analogy used by Nancy Snyderman.  "Imagine we have a house with a broken light switch.  Chemotherapy is the equivalent of bombing the house.  Targeted therapy would replace (or eliminate) the light switch." (paraphrased)

I want to see our country helping our kids with cancer.  The science, the researchers and the ideas are out there, we just need the money behind it to make it a reality.  Curing cancer is not just a dream, it can be a reality.  There are so many children with cancer in extreme suffering right now with little or no hope of a cure or even a treatment option. Once you become part of the cancer family, these children become a part of you.  To give up on any of them would be to give up on your own child.  We are all in this together.  We cannot just sit back and watch another child suffer.