(or) The one-year anniversary of the beginning of the suckfest (It’s not a roller coaster; it’s more like a see-saw. On the playground in Hades.)
ONE YEAR AGO TODAY:
This date, one year ago, found us on day #3 in the Macon Children’s Hospital; diagnosis: anemia (question mark?). Kendrie, despite having several transfusions on Saturday and Sunday, wasn’t bouncing back the way the doctors thought she should. So, although it was Columbus Day, a holiday, they were scheduling her for a bone marrow aspiration (is it ever really a holiday in a hospital?) The specialist had been called in and was the one requesting the aspiration ….. “to find out what is going on with her bone marrow.”
I feel like such an idiot, when I think back and realize how clueless we were. Although in my heart I was worried it might be something serious, the word “cancer” had not been mentioned aloud, so I wasn’t letting it infiltrate my head, either. What was it, exactly, that I thought they would find out???? The days in PICU had passed in a sort of surreal denial, as we sat back and waited for the magical, easy diagnosis. Surely they would send us home with some band-aids and a bottle of multi-vitamins. My child was loved, immunized, breastfed, and well taken care of. How could there be anything wrong with her?
In hindsight, I assume the doctor must have known what was going on, or at the very least suspected it, but he never said it in front of us. Is that better, or worse? Who knows, maybe he was hoping to protect us. They took her for the bone marrow aspiration, and were in the room much, much longer than they told us they would be. When he finally came out, he sat down and explained that her marrow was packed so tightly that despite sticking her in three separate locations, they simply couldn’t draw out enough marrow to test, so they had to resort to a bone biopsy … a test where they actually shave off a piece of her hip bone to test it.
I remember thinking “oh, well, that’s ok, right?”
Knowing what I know now, I believe that sometimes, ignorance is bliss. Otherwise, I would have been terrified, realizing that packed bone marrow is an indication of a serious problem. I would have been upset that she was stuck so many times, and livid that she had a biopsy done without general anesthesia. Instead, when the doctor told me he would have the results in a couple of hours, I cheerfully said ok, and tag-teamed with Blaine, leaving him with her in the hospital, while I headed home for a shower. Good heavens, I was naïve. How could I have been that naïve?
Blaine called later and told me the doctor wanted me there, so he could discuss the results with us in person. Uh oh, red flag number one. I think deep down I was starting to suspect at this point. I remember driving back to the hospital, but not rushing. Delaying the inevitable, perhaps? When I arrived, the nurse called the doctor and he asked us both to step into a private room. We had all three kids there, so Blaine stayed with them in Kendrie’s room while I followed the doctor next door. The nurse followed me and shut the door behind us. Oh God, this must be serious.
He was kind; he was gentle. Put his heavy hand on my shoulder and said, “I’m so sorry. It’s leukemia.” I had a sort of slow-motion crumbling on the inside. “I knew you were going to say that” came from my lips, although I didn’t know. I guess deep down, I did. I cried, I pulled myself together, and cried again when Blaine came in the room. The doctor kept saying, “She’ll be ok; she’ll be ok” and patting my shoulder. It wasn’t until several days later, frantically reading a copy of Nancy Keene’s book “Childhood Leukemia” that I would discover the statistics -- that 80 to 85 percent of kids with this type of leukemia survive. I appreciated the doctor’s kindness; I just wish he had told me that at the beginning. I spent three mind-numbing, terrifying days, believing my daughter was dying.
And so began our journey. A frantic call to my mother, who dropped everything to fly to Georgia and take care of Brayden and Kellen so Blaine and I could both go with Kendrie to the hospital. Another ambulance ride, this one up to Atlanta to get Kendrie settled in at Scottish Rite. Walking through the doors marked “AFLAC Cancer Center” and thinking, “Wait, we don’t belong here!”. Seeing a bald child for the first time and feeling like I’d been punched in the stomach. The dread I felt every time a nurse or technician came through the door to draw blood. Trying to absorb as much medical information as possible, as quickly as possible. How can you ask intelligent questions if you don’t know what to ask?
Learning protocols, what counts meant, what kinds of chemo and medications were to be taken when … and how … and with what expected side effects. Sleeping, sort of, on a fold out sofa-bed (which was better than the chair I had slept in the first few nights) but only sleeping with one eye closed -- the other eye watching the monitors, listening for the beeps and bells and alarms, and desperately alert for the four-year old in the bed next to me who could no longer walk to the bathroom and had to be carried, dragging the iv pole behind us, five and six times a night. Surgery, shots, battles of will over oral medications. Dealing with a child who withdrew completely in a matter of days.
Two weeks in the hospital, and then the combination of happiness and sheer terror when we realized they were letting us go home --- and expecting us to take on the responsibility of her care. I likened it to taking home a newborn, only without the excitement and happy anticipation. We were petrified we would mess up her medications (there were about seventy, at that point, is what it felt like!) or not catch a fever in time, or know what to do if something went wrong, or be able to protect her from the millions of germs that were hovering, waiting to pounce. Please, we want to go home to our other children. Please, can’t we just stay here and let the nurses take care of her a little longer?
But we did it. And she survived. And so did we. In fact, things even got better as time progressed (a concept we had doubted at the beginning!) Sure, we still had that early morning, first-thing-when-you-open-your-eyes-that-still-burn-from-crying-at-night rush of nausea-inducing emotion --- “What’s wrong? What isn’t normal?” and then, “Oh, yeah. Kendrie has cancer.” In fact, even a year later, I still wake up like that sometimes. But for the most part, we’ve accepted our “new normal” and moved on.
Kendrie has hair. In fact, she told me tonight she wants to shave it off so I don’t have to start brushing it.
We’ve had a few low-points; the nausea, aches and pains, steroid tantrums, low counts and a couple of transfusions. People that we thought we could rely on, and who would come through for us, who haven't. But we’ve had lots of high-points as well; she’s done remarkably well on treatment, hasn’t been admitted to the hospital since diagnosis, has maintained her weight and her energy level, the majority of the time. People we never imagined, who have come out of the woodwork to help us. The outpouring of love and support we have received from the majority of our friends, family, and even total strangers we have met on this journey (all of which we will be forever thankful for.) Our military insurance has been a Godsend. I love our doctors and nurses in Atlanta; I hate driving to Atlanta. We only have fourteen months of chemotherapy left! Good grief, we still have fourteen months of chemotherapy left.
Yes, it’s been a year of ups and downs. Much like the see-saw that is childhood cancer. Thank you for letting me share it with you.
OK, how stinkin’ cool is this???? On today, the one-year anniversary of Kendrie’s diagnosis, we officially received our 100,000th hit on her Caringbridge site!! I have to say …. Absolutely perfect timing! And the 100,000th visitor to the site today, was (drum roll, please) Tracey from Bears Who Care in Calgary!! You need to go back through the guestbook yesterday and today to read her funny messages --- she was pretty determined to hit the magic number and she did it! Tracey has been a regular visitor to our site for quite some time, and is a co-founder of BEARS WHO CARE -- "a group of Canadian folks who care about sick children. We offer support, encouragement and smiles to critically ill children all over Canada, through our guestbook support and 'happy mail'. For those of us with healthy children, this is our way of 'giving back', for those of us with sick children, this is a way to show support to our fellow parents and to be a part of a caring community." Tracey, and all the Bears Who Care, make the time to visit lots of other CB sites as well, spreading a little sunshine and cheer to many, many kids, so I am happy to make a donation to Caringbridge in her honor. Tracey, thank you for being a supporter of our site!
The reason the timing of the 100,000th visitor and all the nice messages was so perfect, well, I’ll be honest with you guys and admit (even to myself, I suppose) that I was a little more whacked out by today than I thought I would be. I mean, just what significance does a one-year anniversary date hold for a leukemia patient? And why should today make me any crazier than normal?
Another mom on my ALL-Support Group List, Nicky’s mom Kim, recently posted these words of wisdom when another child on the list hit their one-year anniversary:
“What do you say, ‘Congrats on the one-year anniversary of being diagnosed with leukemia?’ How about, instead, ‘Congrats for making the best out of a difficult time, for learning what unconditional love truly means, for doing things that would probably get you past a couple of classes in nursing school, heck, even medical school, and for making a difference with your family’s pro-active involvement in TNT and other causes.’ “
I thought today would be another normal day, another step towards the finish line; a milestone of sorts, but certainly not an emotional one. I was wrong. I woke up today, glad that Kendrie felt good enough to go to school after coming home yesterday, feeling crummy from the steroids. I woke up feeling blessed and giving thanks that she is still in remission. I woke up thinking how much better our situation is at this exact time this year as opposed to last.
I’ll spare you the boring details, but an in-home computer service technician has, for the most part, turned my computer into a boat anchor. I won’t even go into the incompetence (on his part) or the frustration (on mine) but today, when I realized nothing he said he had fixed was working ……………………. and a Caringbridge update, on today of all days, wasn’t going to happen ………….. I sat in my van in the parking lot at my hairdressers and cried for five solid minutes.
Now, if you know me, you’ll know that I’m not a crier, so that was a pretty unusual event, all in itself. And the fact that I was scaring away potential clients, who must have assumed I was really, REALLY unhappy with my new highlights, over something as unimportant as a computer glitch (although if I ever catch that Bill-Gates-wannabe in a dark alley I swear I will strangle him with a USB cord for all the havoc he has unnecessarily wreaked on my system!) --- suddenly it occurred to me that maybe I was a little more emotional about this day than I thought I was. Who did I think I was kidding? I’ve sat back for the past two weeks, focusing on this day, and telling myself (apparently unconvincingly) that it was no big deal.
But it IS a big deal. 365 days ago, we were told our daughter had cancer. At that time, looking ahead seemed impossible. We were worried about getting through each day, each hour, let alone where we would be in a year. Now, we’re here. Fifty-two weeks of chemotherapy down, fifty weeks of remission. Sixty weeks of chemotherapy to go. We are ecstatic; we are terrified. Do you understand why I’m a certified head case???
So thanks for all the messages the past few days, as we edged our way towards the 100,000 mark and the anniversary date. Your notes of encouragement, all of them, from the very beginning through the past few days, have done much to sustain us through the past year. I’ve said all along that this journal is the only thing keeping me “off the couch” and I really, truly, sincerely appreciate so many of you taking the time to check in and offer your support.
(Thanks also to my girlfriend Kelly for talking me down off the computer ledge today, and to my girlfriend Andrea’s husband, Wonder-Bob, so named for his computer genius, who talked me through the stupid re-installation(s) to make this update possible.)