Thursday, July 14, 2011

The new reality

Today was a rather challenging day.  I think we were all ready to be home. 

Chloe began her first round of chemotherapy this morning and had to be hooked back up to her IV.  Unlike her first few days with an IV when she laid in bed all day except to go to the bathroom, today she pretty much refused to be in her bed.  I can't blame her.  So instead she spent the day pushing her IV "tree" around, like this:

We tried to keep her busy while we began the packing process.  The rooms at the hospital are huge and we brought in a lot of stuff over the week.  Yet, she was her typical self and just bounced from one thing to the next.  Christa and I met with the discharge nurse for close to an hour to get our instructions about medications, our appointments for next week, and all of the things we need to watch for to avoid infection.  In the hospital there are hand sanitizer dispensers everywhere and the rule is "wash in, wash out."  You wash as you enter a room and wash as you leave.  We're going to have to have similar rules around our house for the coming months while she's on chemo.

We were all so excited when we finally got the okay to head home about 5:00.  Chloe slept the entire way home and for another half hour in the driveway.  Settling back into our routine was more than challenging.  Chloe didn't want to eat dinner and everything was stressful (for me at least).  We finally decided to just get Chloe to bed.  When I went up to tuck her in, I asked her if there was anything or anyone she wanted to pray for.  She started crying and talked about one of her friends who didn't visit her in the hospital (we didn't know she wanted her to come) and then moved in to the fear of being bald again.  We prayed and then she asked for one story.  The book on the top of the pile was a chapter book, the second was a D.W. book (which I wasn't up for reading), so I grabbed the third, a picture book, without looking at the title.

The book I grabbed was On the Night You Were Born.  The first page begins, "On the night you were born; the moon smiled with such wonder; that the stars peeked in to see you; and the night wind whispered; 'Life will never be the same.'"

As you can imagine, by the time I had finished reading that much the tears were flowing and I fought to read the rest of the book in a semi-clear voice.  I kissed her good night and went into our room to try to regain composure before heading down to the rest of the family.  How long will this go on?  When will the emotions be not so near the surface?


fhguy1978 said...

Thanks for sharing Kip...I can't imagine what you and the family are going through...that said know the community is holding the family up in prayer and love. Shalom

Jennifer said...

It is a true gift from God to be able to release your emotions rather than have them become toxic inside. I always hated that I cried easily (I sobbed during Third's Easter service this year) and then one day I saw someone completely Stoic when everybody else was crying. And I realized what a beautiful thing they are. Heck, I started bawling just reading about You reading that book. Praying for You all.

Amy Berarducci said...

As I just heard about this today, I am catching up on the updates and crying w/ all of you as it brings back memories of 5.5 years ago w/ Mia at DeVos. As you've experienced DeVos is fabulous, Dr. Mitchell is amazing, she is Mia's oncologist too. The God moments are beautiful and more will come, trust me. I just met Derrek last fall when I started working at Hope. I'm glad he can assist. My biggest piece of financial advice which I'm sure you've already done is fill out the paperwork for Children's Special Health Care Services, we are still with them after 5.5 years and they are wonderful! You don't want to have to worry about money at a time like this. We prayed for all of you tonight and will continue to do so. We are actually going to be on the 10th Floor at DeVos Friday AM for a blood draw and port flush, but glad you all are home. It is definitely a new normal, but take respite in doing the things that used to be chores, like laundry, etc. I remember my mom, saying "Let me vacuum." And I said, "No, I want to do something that is normal." Find whatever it is that is therapeutic for you. I agree 110% w/ the Social Worker about Martha & Henri, they gave us that same advice and it worked. Sorry if this is too much, but please know that we are here to help and pray for you.
Amy Berarducci and family

Derek Emerson said...

Thank you for your heartfelt writing. Mary Ann and I are not experts, but if we can help with questions when you get home feel free to call.
As for the emotions -- like the medicine and the terminology, you get used to them. And then, at the most unexpected moment they will jump out. That is more than okay. Seriously, your child has cancer. Cry!!! When Oliver asks us why we are crying, we tell him we are just so sad that he has to go through all this.
We continue to pray.

Kim Mendels said...

There is comfort in routine and we hope you will settle into your new one soon. As crazy as it sounds, Kevin and I still sometimes talk about actually kind of missing how when cancer invaded our lives w/our parents all the little stuff fell to the way side - time slowed down, our lives were more quiet in a strange way and we didn't waste so much time/energy on the small, petty and insignificant junk that creeps in. You guys know your purpose - family. God and the prayers of all those around you will sustain you through all the times you think you just can't bear it or don't have the words to pray yourself. You can trust in that!
The Mendels Family

Tonia said...

Your friend Kim Mendels is one smart lady. Luckily I know you are both smart enough to see the wisdom in what she's telling you.

grace and peace

Unknown said...

I read your blog this morning. I don't know if you are aware of this but our son, Matthew, now 23 is a cancer survivor. He was diagnosed with Stage 3neuroblastoma on Oct 1, 1994 at the age of six. Our daughter was two and a half when he was diagnosed. Dr. Worpel was our pediatrician.
No one can possibly understand what you're dealing with, what you're facing, unless you've been through it.

Your life will get a rhythm again.
You will make all the medical terms a part of your life.
You will find joy in the little triumphs.
You will cry at unexpected moments.
You will sleep when you need too. You will get done what needs to be done.
You will be scared.
You will learn how to talk to the doctors.
You will say the "right" things to your children.
You WILL get through this!!!!!!!

Julie Van Oostenburg

Unknown said...
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Unknown said...

Praying for you and loving you from Minnesota. Steph Bergh

heather pietrowski said...

Kip, I'm just catching up on your posts.. We were camping at Wilderness state park with no internet. I thought of your family daily and prayed as I looked out over the beautiful lake that God created. I feel for you and your family and can tell by all of your posts that you are so supported and loved. You are an awesome dad and husband that shines in all that you say and do. You have the inner strength that will help you get through this. Lean on everyone, they will give you more strength and love each and every day:)