How Far We've Come
Nov 07, 2013 by Ginger Templeton
Everyone once in a while I play a little game I call Cancer Nostalgia. I look at our Caring Bridge website and find today's date to see what was happening 5 years ago. Usually it is a mundane entry about white blood cell counts, transfusions, a thank you for a gift that arrived, how much we love our nurses. 159 days in the hospital gets a little monotonous.
5 years ago today was not one of those monotonous days. It was a terrifying day.
So, it's been a bad morning. Lindsay spiked a fever this morning. It started at 102.7 and now is up to 104. She vomited as well. Strangely, her hemoglobin dropped precipitously in the night -- from 8.9 to 5.9. I'm hoping this is lab error and not related to an infection. I'm not sure if the latter is plausible.
As I reread my Caring Bridge post I was initially surprised by how calm my tone sounded. Then I realized, that's how it was. We were beaten down, like lab rats receiving unpredictable electric shocks. On the inside we were a mess. On the outside, we were calm, even sedate. Preparing for what lied ahead.
Then, later that day I wrote again.
I want to hit the highlights since I wasn't able to call anyone back tonight. Lindsay is sleeping, but not very deeply, so I didn't want to make phone calls.
First and foremost, every time she spikes a fever, a sample of blood is drawn and cultured to see if bacteria are present in her bloodstream (septic) or her lines. Today, both lines grew Gram positive cocci. The cultures were positive within about 9 hours of being taken, so that is rapid growth. I don't know how long it will take to have a species id, but Dr. Castellino suspects alpha hemolytic strep.
Second, her fever is still present.
Third, she had a crummy appetite today. This is unusual even for a fever day. She is definitely more sick this time than with past fevers. I wasn't surprised that her blood cultures were positive.
Fourth, she vomited everytime her temp started to climb. They gave her medication for the nausea and vomiting (Zofran... ondansetron, she also takes it for chemo) tonight. We'll see how that helps.
I'm not sure what else to report. It's wait and see. I'm very stressed and anxious. It's been a day of suppressing tears and trying to stay calm but at the same time vigilant. I think it's time for some chocolate.
Fever may not sound like a big deal. Just take some antibiotics and a motrin, right? Not exactly. First, on a good day Lindsay had only about 10% the platelets of a normal person. Since ibuprofen interferes with platelet function, that was out of the question. More importantly, though, Lindsay had very few white blood cells (200 to be exact) and ZERO neutrophils (an ANC of 0). Neutrophils are a type of white blood cell and they are oh-so-important for fighting infections. When you or I spike a fever, we take ibuprofen, stay home from work (or not) and wait for our immune system to do its job. When Lindsay spiked a fever, blood cultures were taken, heavy duty combinations of IV antibiotics were started, and we prayed she didn't end up in the ICU. We knew kids with AML who died, not from their cancer, but from their secondary infections.
That fever did lead to a trip to the ICU. It was a short, but terrifying stay. I didn't sleep for weeks. I monitored her monitors. I recorded her habits. I watched her breath, struggling, at times, for air. I cried. I prayed.
Those days seem so distant. That couldn't have been us. Our little girl didn't almost die. Except that she did. And every time she says, "I beat cancer," I know there is another child who didn't. It isn't just an orange bracelet or a bumper sticker. At this very moment, there are other children going through exactly what she did. Other mothers and fathers watching as it all unfolds. Their futures uncertain.
When we fundraise, we talk about Lindsay's fight, but to be honest, it is about so much more than Lindsay. If it were just about Lindsay, I could say "she's doing fine!" and take a break. I could go take care of all of the other things that need to be done - vacuuming the stairs, bathing the dog, washing the windows. But this isn't just about Lindsay. This is about all of the children and adults who are fighting leukemia, or lymphoma, or myeloma today. This is about those who have not yet been diagnosed. This is about those who are going through chemo for another type of cancer now who will develop secondary leukemia down the road thanks to their current chemo.
10, 15, 20 years ago, a random stranger donated to LLS and my daughter is alive today because of it. It is that simple. Today, LLS is funding research so groundbreaking it gives me cold chills. 10, 15, 20 years from now we will look back and say, "In 2008, 50% of kids died from AML." Past tense. "Now they survive."
So we keep fighting, we keep fundraising, and we keep feeling so damn grateful for every person who donates and joins the fight to help us pay it forward.
Nov 03, 2013 by Ginger Templeton
It's 3:30 AM. In one and a half hours the alarm will go off and Matt will get up and start the final preparations for his marathon. I am giddy with excitement.
I am also giddy about my own upcoming race. I checked my email to learn that I was in third place for fundraising for all of NC TNT participants who are doing Disney.
Thanks to all of you, I've raised $5055! But that's not good enough. I know. it sounds like a lot. But $5055 is a drop in the pan compared to the cost to bring drugs to market. $5055 is chump change to the patients going through care, paying drug copays upwards of $5000 a month (Yes! $5000 a month for oral chemo). $5055 is not enough.
So tonight, in the wee hours of the morning, I went through my list of donors from last year. I do have a hard time asking for money. But deep down I hope and believe that people want to give to a good cause. I hope they see that this isn't about me or my fundraising, but about something bigger than all of us.
Curing cancers, supporting patients.
So, hat in hand, I am sending out emails and letters to those who donated last year. I hope it isn't annoying. I hope when you get a letter, you feel inspired and know just how important you are to patients currently in the fight.
Why? 9-11 and Cancer
Sep 12, 2013 by Ginger Templeton
There are moments when it all hits me. How wonderful our lives are right now. Despite the stress, despite the busy schedules, despite the desire to have more family time, more savings, more whatever. We have each other. That is pretty wonderful.
Tonight, my six year old started talking about 9-11 at bedtime.
Both kids wanted to know Why? We all want to know Why? We're lying if we say we don't dwell on that word. Why did the terrorists fly those planes into that building? Why did my child get cancer? Why did my child survive her cancer when so many others don't?
We have recently learned of another little girl diagnosed with cancer. Neuroblastoma. An aggressive, awful tumor of the adrenal glands. A tumor that reminds me of dear friends in the hospital. A tumor that also reminds me of the worst day of our lives.
On day two of our cancer journey, the doctors thought Lindsay might have neuroblastoma. The cells in her bone marrow were not typical leukemia cells. Of the non-leukemia kids' cancers that show up in (met to) the bone marrow, neuroblastoma is the most common. So for 36 hours we endured CTs and catecholamine tests and the horror that Lindsay might have something even more evil than what we'd been prepared for. Because of those 36 hours, truly the absolute worst, darkest 36 hours of my entire life, and because of a very special little girl named Lily, I will always have a special place in my heart for kids with neuroblastoma.
Why is this new family facing neuroblastoma? Why did Lily? Why 9-11?
Sometimes there is not an immediate answer to the question Why? When Lindsay was diagnosed, people tried to offer us the Why? and it was rarely helpful. Tonight when we were talking about 9-11 and asking Why? I had to be honest. "I don't know why. There is bad in the world. But there is much, much more good. Look for the good. It's all around you."
I was talking about terrorist, but the same is true of cancer. Even during cancer, the good is all around. All of you who are reading, cheering us on, and fighting cancer with us, you are the good.
Support and Friendship
Sep 12, 2013 by Ginger Templeton
I spoke at the local Team in Training kick off a few weeks ago. I asked all of the TNT participants who did NOT have a close connection to blood cancer to stand up. Many people stood up.
As I look at those of you who have donated, I know many of you don't have a close family connection to blood cancer. Perhaps Lindsay is your closest connection. Some of you have never even met her.
You are the ones who are the most important in this battle. It goes without saying that Matt and I will fight for cures and patient support. It is our responsibility. But the battle will be won thanks to those of you who are joining us from the sidelines.
To all of you who supported us when Lindsay was sick, to those of you who come back year after year with donations, to those who participate in our fundraisers because you believe in this cause, thank you from the bottom of my heart. You make all the difference.
Jul 28, 2013 by Ginger Templeton
August is a big month in the Templeton Family.
On August 18, 2008, we sat in the pediatric ER and heard the words, "Your daughter probably has leukemia." 2008. 5 years.
I see that day in flashes. Nurses holding our daughter down to place an IV. Amazement at how quickly they hit her tiny vein. Dora the Explorer on the hospital room TV. The portable x-ray machine, wheeled in by two men, radiology techs. Leaving her, terrified, for just a split second while they take the x-ray. Infectious disease warning stickers. Michael toddling about needing snacks. Hospital graham crackers and awkward apple juice containers with aluminum foil lids. ER attendings, residents, interns, students, nurses - all wearing gowns, masks, gloves. Not knowing if they were protecting themselves or Lindsay. Meeting a pediatric oncologist for the first time in my life. The words of a resident, "We're just putting you on the oncology floor because that is where anemic patients stay." A little false hope, a much-needed chance to hold on to our denial for a bit longer. The 9th floor. Peds Hem-Onc. The first (of many) blood transfusion. IV antibiotics. Finger pokes to check PCVs. Noisy nurses or nurse's assistants outside of our hospital room at midnight. Didn't they know the world was crashing down around us? No sleep. Terror. Tears.
There are pieces of that day that I will never be able to convey. Pieces that I have forgotten. Pieces that are too blurred with emotion to articulate. But here we are, 5 years later. So blessed with health, family, friendship, that I have the luxury of writing what I do remember while Lindsay and Michael play happily upstairs.
August also happens to be the time for Lindsay's 6 month oncology check up. If everything looks good at this visit, she drops down to yearly oncology check ups, a milestone worth celebrating.
August is about much, much more than cancer, though. There is the excitement of Back to School. First and third grade, great teachers, and reunions with BFFs!
Lindsay is also looking forward to her first triathlon. This is a kids-only race sponsored by the Y. She will swim an easy 75, then the challenges begin: 2 miles on bike and a half mile run. She asked to do this Tri when she heard that some boys in the neighborhood were entering. One of the parents is actually a Team in Training Alum. We've been getting together a couple of times a week to "train". The kids are so eager, and I can't wait to cheer them on on race day. I told Lindsay the best part of race day is that she gets to choose what we do afterwards. I usually go with a post-race brunch or a trip to Starbucks for a mocha. I have a feeling her choice is going to involve doughnuts.
This is a month to celebrate. There will be sad memories, but the joy far outweighs the bad. Part of celebrating is officially kicking off my TNT training and fundraising. I'm determined to raise $10,000 this year. I was so close last year. Since starting a volunteer position with LLS' first connection program this summer, I am even more motivated to support this wonderful organization.
I hope you will join me in celebrating this amazing, five-year journey and support LLS with a donation. No matter how small, your donation will make a big difference in the lives of patients like Lindsay. Thanks for being there with us and continuing to cheer us on!