This is the fourth of thirty-one installments of Donna’s Cancer Story, which will appear daily in serial format through the month of September to recognize Childhood Cancer Awareness Month. Each post will cover one month of Donna’s thirty-one months of cancer treatment.
It’s hard to believe, but yesterday’s entry only covered two weeks of the third month of treatment. There was simply too much happening to document it all, which is a bit like this month, too. Donna’s cancer, to use an analogy, was very much like the stock market. The ups and downs are exhausting. The best strategy is simply to focus on what is happening right in the moment you are in and deal with the future as it comes. If it comes.
Chemo was hard on Donna. I mean, she was a tiny girl, under 25 pounds. The regimen that was selected was known as “ICE.” It required five inpatient hospital days to administer, including time for pre-hydration and post-hydration to help flush the toxins out of her system. An oncologist acquaintance referred to it as the “sledgehammer” of chemo cocktails.
The first month was terrifying for us. We did what we needed to do and were grateful for the opportunity; grateful for the ability to inject poison into our girl’s thin, tiny veins, if that is what it took to rid her of cancer. Triple sigh. At our first discharge we got a home health order. A nurse would be coming and supplies would be sent so that we could manage Donna’s IV and medicine needs in the comfort of home. That adds stress to an already stressful situation, but you buck up and do what needs doing. That is the life of a Cancer Parent.
With the first round of chemo there was vomiting, loss of appetite, lethargy, and the thinning of the hair. Donna’s beautiful curls were going away. It’s such a vain thing, but ask any Cancer Mom and she will tell you – – this hurts like hell. Donna slogged through it, finding comfort in our arms and the distraction of tee vee and youtube. Our parenting standards went away with Donna’s hair. If potato chips, tee vee and staying up late brought her comfort, so be it, we would work through the consequences later.
We returned home, grappled with the King of Sucky Home Health Agencies, and did the best we could to comfort Donna and tend to her needs. This was heartbreakingly difficult as there was a battle going on within her body between chemo and her cells, both healthy and unhealthy, that brings almost constant discomfort to cancer patients. Nothing was good enough. Food, books, videos, tee vee shows. All were met with the plaintive wail of Donna yelling, “SOMETHING ELSE!”
But we got through it. Amidst the discomfort Donna developed neutropenia, the phase of treatment where your immune system collapses, making you vulnerable to opportunistic bugs. Infections can kill. We went back into the hospital after a long and tedious ER stay and were brought to our room on the oncology unit. I immediately walked to the nurses desk and said, “I think there’s been a mistake. Donna is neutropenic and needs an isolation room.” God bless her, the nurse patiently educated me that most of the kids on the floor were neutropenic. If she rolled her eyes, it was only after I walked away. The single room we enjoyed during the chemo infusion was simply good luck.
Miraculously, Donna recovered over a couple of days and returned to good health. No infection developed, but she received days of IV antibiotics until our docs were satisfied of that. We went home to pack. That’s right, pack. Thinking there was not enough going on in our lives, we had bought a new home. What the what? Yep, just days before Donna’s diagnosis we had put a bid on a new place not a mile from our old place. We were given the opportunity to back out when the developer learned of Donna’s cancer, but we opted to move forward. It seemed a hopeful choice to us and one Donna fully endorsed.
I just shake my when when I remember the insanity of this month. A few bags were packed to stay at a friend’s home while they vacationed. A boat load of believers had a packing party for us and knocked it out over a day and a half. Movers came and when we returned to our home, it was a new home, just half a block away from Donna’s favorite park. We had been unpacked by another crew of volunteers. Donna loved it, we all did. I would spend the next several months finding things others had unpacked for me, never forgetting how amazing human beings can be. Aside from the cancer, who hasn’t fantasized about someone else packing, moving, and unpacking you? That was one of the gifts cancer brought us.
The plan for Donna was to be rescanned a few weeks after the first chemo to determine if it was having the effect that was hoped for. Again, no roadmap, just hopes. The docs were pleased with her recovery – – this was hard to imagine as we saw our girl shrinking and sad and thinning. They saw a girl who had no infection and a quickly recovered immune system. Recovery is in the eyes of the beholder. Our oncologist suggested pushing up the scan dates to capitalize on Donna’s health. Gulp.
The MRI was performed at 6:30 on July 3rd. We got home about 11:30 that night, Donna wired and hungry from not eating since early that morning. The next day was quite possibly the longest day of my life. Donna played, Mary Tyler Dad kept her company, and I nursed my anxieties with television, chocolate, soda, and pajamas. Happy 4th of July, folks! On the fifth, unable to stand it a single second longer, I called our RN. The CT looked good, but the final read on MRI was not complete. Given our history with hearing too early interpretations of scan results, they were extra careful. A couple of hours later we got the call: Donna’s lung lesions were significantly diminished. There was a clean spine and the residual brain tumor had remained stable. RELIEF. The chemo was working. Suddenly, we did have a roadmap. More of the same, possibly 4-6 more months. Bring it. We were on top of the world. Donna was strong and if she could handle it, so could we.
In the midst of this chaos, our friends had organized a benefit in our honor. They were worried for us about medical expenses and insurance and wanted to do what they could. This was so very humbling, to be on the receiving end of such generosity, and I fear to this day I will never be able to repay what people did for us in Donna’s name.
A few days after that, Donna turned two. We celebrated with a platelet transfusion. Unexpected as it was — we got the call at 2pm — the need was urgent and could not be postponed. Donna was okay with that. For her, it was a hospital day with two parents instead of one. And the docs and nurses gifted her beautifully wrapped presents and sang the happy birthday song. Our girl was two!
11 Replies to “Donna’s Cancer Story: Chemo Starts”
I am along for the journey and honored to be included. I ‘met’ Donna’s apron through Patti Digh and was touched by how tiny it was. You are a strong and loving mama and I know that i will learn from your story this coming month. Thank you.
Thank you, Terry. Patti has done nothing but bring some light into my life. I heart her. Donna’s apron found the best of homes with her. And thank you for reading.
Thank you for this heart warming look at your life. Donna is a tough little cookie and I hope you find strength in knowing she is your guardian angel.
Thank you, Jodie.
I am sending a tweet with each new post about Donna, because your own survival as a mother can offer such strength to other parents. You show incredible grace and dignity in the face of the beast that is cancer. Thinking of you and your family every day with every new post you write.
Carrie, thank you for that support. It means a lot coming from you, whose writing and POV I so admire and learn from often. Did you know I have a mom crush on you? True story.
Well, send me an email and let’s find a time to get together! We have much in common to talk about, that’s for sure! XO Carrie email@example.com
I am moved by your love. I pray everyday as I read along with so many others. Your strength is amazing and your daughter’s is beyond words. I only wish I can be half as good of a parent as you. I truly appreciate you writing. Your story for us to read I make sure my children read it with me I want them to grow with the knowledge of knowing not everyone life is with out struggle and to pray for not only those whom we know and love but for all in this world than need an extra prayer and love. May god bless your family. If there is anything a stranger from reading Pennsylvania can do you have s new friend in me.
At the end of this month, Mise Mengel, I will write one final post about charities making a difference. Stick around, keep reading, and you will learn more. For now, the best thing you could do is share the posts with your network if they move you. My hope is to raise awareness about pediatric cancer using Donna’s story as a means of understanding. Stats and numbers only do so much; in the end, knowing one child with cancer makes all the difference. My hope is you will know Donna at the end of this month. Thank you so much for reading.
Where do I begin? I’m practically speechless. All I can come up with now is that You are an amazing mother and wife, and your daughter IS a stunningly BEAUTIFUL person inside and out. I say is in the present tense due to a fierce belief that while she may not reside on earth now, she CERTAINLY is alive in Heaven! Thank you from the bottom of my heart for sharing your story.
I would like to read the previous installments of Donna’s Cancer Story. Could you link to previous posts, please?