Wednesday, July 13, 2011

Hopeful

Christa felt a little clarification or more explanation of our feelings from last night may be necessary. We were discouraged about the news of stage 3 from two stand points. One, with the fact that the tumor had come out intact without spillage, we felt that it was going to be stage 2 (probably not stage 1 considering the size). We had an expectation. Second, we wanted to avoid radiation treatments if possible.

The diagnosis of a Wilms' tumor is still good news compared to what it could have been. As our friend Shannon said the other day, it's like asking if you were going to get hit by a car, would you rather be hit by an Hummer or a Prius? The prognosis for kids with a Wilms' tumor is quite good. We're still hopeful that Chloe will live a long, normal life.

We spent at least an hour and a half this afternoon talking to Chloe's oncologist about treatment. The jist of it: she'll begin chemotherapy tomorrow morning and will continue once a week for the next ten weeks, with treatments spreading out and ending after twenty-four weeks. She'll most likely have six radiation treatments over six consecutive days, the first probably beginning a week from tomorrow.

I'm sure there are going to be many difficult things about the coming months, but for me one of the hardest may be seeing Chloe lose her hair during as a result of treatments. Everywhere I take her people comment on her hair: this morning at the gift shop, last week at the bike shop, every time we're at Meijer. This morning when the gift shop employee commented "she has such beautiful hair" I almost replied, "yeah, it's too bad she's going to lose all of it.". Thankfully, I held my tongue.

During our meeting we had discussed waiting until next week to talk to Chloe about the hair loss. However, while the oncologist was talking with her about beginning chemotherapy tomorrow and why we were doing it (in four year old language), we decided to tell her about it then. She wasn't making eye-contact and was playing with toys so we thought it was going in one ear and out the other. Yet, at dinner an hour later she told Christa that she didn't want to lose her hair because she was afraid of looking like a boy. A short while later as we took a walk she told me that she didn't want to lose her hair because she was afraid to look weird. We all thought that she wouldn't be concerned about it, now we know differently.

When we got back up to Chloe's room, her night nurse was asking if she needed Tylenol. Chloe said she did as her port was sore (pretty amazing for a four year old to say that). Her nurse said that her port used to hurt when she had Hodgkin's lymphoma four years ago when she was 20. She ended up telling Chloe that she had lost her hair and pulled out her iPhone and showed Chloe photos from her hair-shaving party when around a dozen of her friends joined her in shaving their heads. We think it really helped Chloe to talk to someone who had gone through it and had all of their hair grow back. As Christa said afterwards, that was certainly God at work.

It looks like there's a good chance that we'll be heading home sometime tomorrow. Pray for us as we figure out what our life will look like at home. It's pretty overwhelming to think about all that we'll be needing to keep track of.

We continue to be floored by the love and support that surrounds us. Yet in all honesty, it is feeling a little overwhelming to manage. As we figure out what our needs are there will be some folks who will be point people for various items. So many of you are writing these amazing messages, sharing prayers, support, stories. We so value each and every one of them, but we're getting so many that we simply can't respond to them, even those we want to. Thanks for all of the words that are blessing our crazy days.

10 comments:

Derek Emerson said...

Such tough things for a 4-year-old to understand, but even tougher when they do understand it. You are doing everything you should be and she'll come out a stronger creation as a result. If she wants to chat with Oliver about being bald (and we have plenty of pictures) he'll talk about it. He actually liked being bald!

svanfaro said...

Being bald was kind of fun! At first I was so sad to lose my long blond hair but then it was relief. Cute hats and scarves help and she will need many to go with different outfits.(At least I did!)

Ann-Marie said...

My prayers are with and for all of you as you begin this journey. It sounds as though Chloe is in kind and compassionate hands at the hospital. Thanks for your updates, both on Facebook and here on your blog.

Tonia said...

hi Martha hi Henry! how's it going just wanted to say hi and make sure you guys wernt to bored. maybe this week-end you should come and go swimming. good luck and miss you,
Rachel Ettinger

Elizabeth said...

I am praying that God will bring you the peace and strength to walk this road. Know that our only hope is in Him, He will never leave you or forsake you. It may seem that you are alone but He is there guiding you. I pray that the treatments wil be successful and that there will be little to no side effects. It is great that you sharing this and that everyone who reads this will see that God is in control.
Remember that you have the most important thing on your side prayer and a Heavenly Father who is always there for you!
Isaiah 41:10 "Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand."

Mary DY said...

It is good to hear a concrete plan of action and to know that her prognosis is so positive. May the community uphold you and feed you and carry you through the months of treatment. God is with us throughout the journey.

We love you guys!!

Samantha said...

I just heard about Chloe, and just want you to know I am so in prayer for her and your whole family. The last thing you should worry about is responding to everyone. You take care of your darling family and yourselves. Anything I can do, let me know. Love you!

Vonnie Tyler

Erin said...

I don't know you but I found your blog through a facebook friend of mine who was saying a prayer for you. I had wilm's tumor at the age of 5 (almost 6) in 1983, radical left nephrectomy considered stage III because of tumor spillage. I was treated at the University of Michigan Mott's Children's hospital because DeVos wasn't around then. I have heard nothing but good things about the oncology team at DeVos and it certainly would have been much more convenient for my parents! :)

I will be praying for your family and your little girl as you go through these treatments. I would be happy to talk to you about my experiences, though they were so long ago if you have the desire.

Ashley said...

My prayers are with you! I am so glad she gets to go home soon. I will keep you in my thoughts and prayers every step of the way. God bless!!

Jeff & Heidi said...

Christa and Kip,
In your thoughtful and gracious posts about your experiences, the depths of your love for Chloe, each other, all your children is so apparent. Thank you for offering those of us reading the chance to join you in even small ways. I read of the ways you acknowledge God's care for you-- particularly now in the way Chloe's nurse ministered in just the way Chloe needed-- and join those already praying that you will continue to be held close in God's loving grasp as life continues to unfold.

All of you are in our thoughts and prayers.
Jeff HansPetersen.