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.
Posted on Sun, July 28, 2013
by Andrea Decker