18 months ago

If I'd had the chance to view the future from 18 months ago I might have become catatonic from the sheer thought of the overwhelming changes that would soon take place in the life of our family.  Most of us live our lives with the feeling that cancer is something that happens to other people. Eight months from our empty nest, on January 28, 2012, our youngest daughter Lorelei was diagnosed with Hodgkin Lymphoma (HL.) And believe me, when a child has cancer the whole family has cancer.

Lorelei's first question on learning she had cancer was "Will I lose my hair?" (She was 17 with the most beautiful natural platinum blonde hair.) I could answer that one. "Yes, but it will grow back."

Then she asked "Will I ever be able to have a baby?"  That one was harder. "No, likely not. But God builds families in lots of ways. We'll cross that bridge when we come to it."  If we come to it. "You have to be alive to have a baby" I think to myself but dare not say out loud. I didn't want Lorelei to realize this disease could possibly take her life. I wanted to pretend it was just an inconvenience. An interruption. The plan was to help her be positive and boot this cancer to the curb with enthusiasm and then get on with life. Life as we knew it. But life as we knew it was gone. Gone forever. And honestly, I wouldn't want it any other way. I don't think we really knew how to live until we got cancer.

Skip this paragraph if you're in a hurry to get to the point. Basically, it's included here to document that our cancer journey has been a series of disappointments and big changes to plans.

  • Most people (85%) with HL are cured with only two months of ABVD chemo. Lorelei's cancer was still very active after three months of treatment. Lorelei endured 6 months of ABVD chemotherapy. And still no remission.
  • Never fear, radiation will deal the final blow. We started the Proton therapy process in July 2012 but had the rug pulled out from under us when her tumor grew significantly in just 6 days during that time.
  • Changing gears we decided to do an autologous bone marrow stem cell transplant. We un-enrolled her from college and admitted her to the hospital for three rounds of R-ICE chemo to get her tumor under "control" before the transplant. Her tumor responded but not to the level of remission.
  • Lorelei spent much of October and November 2012 in the hospital with the autologous bone marrow stem cell transplant. She handled it well and we optimistically enrolled her in a local college for the spring 2013 semester so she'd be close when she did daily radiation.
  • A CT scan in December was supposed to declare her in remission but instead it showed growth in her tumor. Again.
  • Time to call in the big dogs. We trekked down to MD Anderson in Houston for some hope and second opinions.
  • In January she withdrew from college for the second time and began bio-immunotherapy with Brentuximab.
  • The PET scan in March showed the malignant activity in the tumor was decreasing so we did another two rounds. Even if it brought her completely into remission the MD Anderson experts still recommended a second transplant, this time from a donor.
  • Because of the early positive response to Brentuximab, everyone expected the PET scan in May to show all malignant activity gone. But it wasn't. In fact, her stubborn tumor had grown significantly in activity. No time to do the transplant.
  • Rush right into radiation. At least it would be proton radiation which would leave less collateral damage to other organs and we could do the transplant later.
  • Oh, bummer, Proton radiation won't work--the field is just too large.
  • Begin IMRT radiation in May and complete June 13.
  • PET scan at end of July showed less malignant activity but still a stubborn core of glow.
  • Begin Allogeneic bone marrow stem cell transplant in Houston July 16. (Presently undergoing.)

That's a lot of disappointment. That's a lot of saying to God, "I know You have the power to heal Lorelei. I just don't understand why You haven't yet." The only hopeful thought that keeps me going is that there may be a person we'll meet along the way who needs to be introduced to our Savior and we're the lucky ones to do it. I'd rather God use someone else, but I'll argue with God about that later. Most of the time I just pound on His chest in anger saying "God, I'm gonna fight you, but I want you to win."

When your child has cancer everyone around you has the cure. Not a day goes by that I don't receive an email from a well intentioned person with the cure for my daughter's cancer. People want to help. They don't really intend for you to feel guilty by their advice. But you will. You'll think your child's cancer is your fault, you caused it, if you let yourself. But it's not. And you didn't. And if someone really does have the cure for all cancer they are not keeping it a secret. Even big pharma executives have family members with cancer. Just gracefully receive words from these people and say "thank you for caring about us." Nobody will judge you if you don't take their advice. And if they do, they don't really need to be in your inner circle. Follow your instincts. God seems to put them in hyperdrive when you first hear the C word.

Life with cancer is full of blessings. You learn all sorts of wonderful stuff like:

  • You actually like your family members.
  • You don't have time for drama.
  • It does take a village.
  • Your neighbor makes the best casserole.
  • A telephone or email "thank you" is acceptable; don't stress over Emily Post's rules.
  • It's freeing to let someone help you but difficult for the chronically self-sufficient.
  • Riding in a jeep with the doors of is easier when you're bald.
  • Experiences are better investments than things.
  • Everybody hurts, some of us just hurt more visibly.
  • When you have the chance to play pool as a family, just do it.
  • Hospitals will give you a discount of you ask.
  • Say I love you every chance you can.
  • Movies should come with a "C" rating in addition to the usual G, PG, PG13 and R.
  • Doctors are people too.
  • A clean house is not that big of a deal.
  • Plans will be interrupted, just roll with it.
  • Each day brings the potential of someone new and fascinating to meet.
  • You'll be happier once you quit focusing on what you've lost and start focusing on what you have left.

Cancer may be a gift in some ways, but please don't ever tell a family dealing with cancer "God never gives you more than you can handle." Cancer is not from God. He didn't give it to us. Yes, He could have prevented it from happening but He didn't. The better thing to say is "God promises to give you the strength to handle any situation if you ask Him."  Remind them that "God will always work His purposes within a situation. It will be easier if you join Him instead of fighting Him."

I don't know why God hasn't healed my daughter yet. I don't even know what that healing will look like. He may heal her ultimately through death. My hope and prayer is that she'll live many more years on this earth. One thing I know for certain is this; however many days we have left together, each will be better lived than if we'd never heard the C word.

10 comments (Add your own)

1. Tabbi Burwell wrote:
Oh Andrea,
I honestly can not imagine. I admire both you & Lorelei's strength and faith.
It's easy to ask God "why me?" There is a purpose to this madness and one day (let's hope soon)
You'll be able to share Lorelei's survivor story (and your "I'm never giving up" story) and give others hope and faith on never giving hope. Ill continue to pray for your family.

Sun, July 28, 2013 @ 9:04 AM

2. Christa Malcolm wrote:
Beautifully written! prayers for all of you!

Sun, July 28, 2013 @ 9:34 AM

3. Annie Horton wrote:
My cousin's son Bray went to high school with Lorelei. My cousin asked my to pray for Lorelei. She knew I could relate. I was diagnosed with CUPS (Carcinoma of Unknown Primary Source) May 20, 2012.. No chemo has worked for me yet. Scans still show the tumor, just don't know where it came from. Your statements are wonderful and so true. We never really ate casseroles until a year ago. I learned that Elaine from church is an awesome casserole maker. I have learned to say yes when someone says.. I can do that for you. Cancer does affect your whole family. Your story has been amazing. You and your daughter are so strong. Please keep posting pictures on facebook when you can. My motto has been STAY STRONG.. some days that is not easy to do... but it is the best attack. I am saved.. Jesus Christ is my strength. I, too feel that God may be using me to touch others. May God Bless your family and I pray daily for Lorelei!

Sun, July 28, 2013 @ 10:07 AM

4. Dorothy Ford wrote:
I want to say what amazing strength you have and your strong faith. I'm sure it's hard to stay positive with so many disappointments in Lorelei's treatments.her strength also is to be admired. That "c" word has touched my family too. My husband was diagnosed in May of 2011 and passed away in March of 2012. He had pancreatic, went thru surgery (did a whipple, which removed and re-arranged parts) his pet scan in Feb. showed cancer gone in the pancreas but cancer found in the liver, a change of chemo but after three rounds the doctor said it was not working.
We can not understand what Gods plans are for us are but we know He's in control and He knows what's best.
I keep Lorelei and you in my prayers, we know that miracles do happen and that's what well keep hoping for.
I'm a friend of your Mothers, I live in Moline, she's a remarkable woman also. Just know so many people are praying for both of you and that we care.
Prayers sent your way....Dorothy

Sun, July 28, 2013 @ 5:35 PM

5. Tammy Brinlee wrote:
So beautifully written! Madison and I pray for you, Lorelie and your family daily! Praying that God wraps you all up in a wonderful warm blanket of hope, prayers and blessings during this rough time! Praying that this will be the cure and what trumps that stupid tumor! God bless and Godspeed!! Tammy and Madison Brinlee

Sun, July 28, 2013 @ 7:37 PM

6. Dylan Johnson wrote:
So beautiful! I cannot even begin to understand all of what you are going through, but this is so beautiful and I praise God for how wonderfully you all have followed Him in this time; we all have doubts and frustrations but you all have clung to God and glorified Him so much. It is truly astounding. I met Lorelei a couple of times and she was such a nice, wonderful person. Praying for you all.

Mon, July 29, 2013 @ 3:26 PM

7. Jasmine Ferguson wrote:
I went to church with Lorelei during my middle school and a little high school years.
While I am not religious anymore, I still pray, and for the last year or so, it's been for Lorelei...

L, you are such a beautiful person, inside and out. I don't believe I have ever met someone who has effected me they way you have. I can't seem to remember a single negative thing about you, even during those horrible middle school years, you were always kind, so intelligent, and beautiful.
I know you will make it through this, you WILL get better.
You have to, because there are not enough people like you in the world for us to lose you.
Continue to keep your head up, as you have done. You are an inspiration to me and others.
Hold fast to your faith, it's beautiful.

Tue, July 30, 2013 @ 11:04 AM

8. Heather Fowler wrote:
So beautifully put. Cried while reading this. My 5 year old was born with cancer, after treatment, relapse, treatment, he is NED and fantastic, but C does change you forever, and, you got it, even in good ways. Just about every word resonated with me. My son did not suffer as much, and for that I am both grateful and "guilty". You and L are beautiful in your spirits. God bless.

Tue, July 30, 2013 @ 12:00 PM

9. Marianne wrote:
My heart reaches out to you and your family.
You help me by sharing so openly.
My husband was diagnosed with AL Amyloidosis in October. It is a rare disease believed to be caused from Agent Orange while he served our country in Vietnam. A friend shared with me your precious Lorelei because she felt it would help me. It most definitely has and is. My husband Don will be going in for his autologous stem cell transplant on the 6th of August. Your courage and love and strength is helping me know that God has a plan for us. Bless you

Tue, July 30, 2013 @ 12:16 PM

10. wrote:
It's so hard for me to read this after going through what I did with my mom. Lorelei is so strong! She has super powers!!!! Everybody with the c word does! Prayers for all of you!

Tue, July 30, 2013 @ 10:42 PM

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