Today is June 19th, 2015. Writing this blog entry may span several days. I’m not sure when I’ll publish it.
I’ve been offline for a while. This is why.
Last Monday, June 15th, my daughter had her annual “school physical.” Our pediatrician noticed a swollen lymph node on her right leg. She sent her immediately for a blood test. White cells were down. Platelets were down. She was anemic. I got the call from my wife around noon while I was at the office. I cancelled the rest of the day and went home. I called my sister, a pediatrician. I also gave our pediatrician permission to speak with my sister. My sister expressed the potential for considerable concern. And, I knew why.
Lia felt fine. No fever. No lethargy. No loss of appetite. An appointment with a pediatric oncologist was made for the next day. Just that referral would make any parent very nervous. Plus, as a dentist, I know a little “too much.” He took some blood and looked at it microscopically. It wasn’t good. A bone marrow biopsy was needed and ordered at the hospital immediately. We were told that the results would come in 24 – 48 hours. We thought they’d do the test, and we’d go home to wait for the results. Nope. Lia was admitted to the children’s hospital on the oncology floor that same day. Shit. That wasn’t a good sign.
This was how Lia spent her 11th birthday. Imagine being an 11 year old birthday girl who is feeling fine being suddenly thrown into a hospital and being poked and prodded. My hope was that it was some sort of infection. But, I knew what was more likely coming.
This is our new life.
The bone marrow biopsy results came back: Acute Lymphocytic Leukemia (ALL). Of the major categories of Leukemia, it’s the “best one to have.” It’s the most successfully treated version. Though, Lia is “high risk” because of her age. When I got the news, my tears were an strange combination of joy and sorrow. My baby girl has leukemia… But, it’s the “best” kind. Holy shit. How’s that for a strange combination of words… “best kind of leukemia?” Man, this is hard to type. But, I need to do this. Writing is my “vent” and my “therapy.” My wife and I are living every parent’s worst nightmare. But, we must be strong for our children.
My little girl is literally… little. She’s petite. Finding access for an IV is difficult and painful. They finally got one on the back of her right hand. Holding her while she was screaming in pain was one of the toughest things I’ve done. Every time she got any meds through her IV it was very painful to her hand. During the CT scan, they pumped a fair bit of contrast dye (and rather quickly) and she was crying and shaking. I stood with her and held her hand during the CT scan encouraging her to hold still. I would do anything to stand in her place. Anything.
My first thought was that we needed to get our asses to St. Jude in Memphis. But, it turns out that there is a national network of children’s hospitals that treat pediatric cancer called, “Children’s Oncology Group.” This network includes St. Jude and our hospital, right here at home. They share diagnoses, data, treatment protocols, outcomes, etc. So, we will get the exact same treatment protocol here as we would at St. Jude. Certainly, the favorable logistics of staying at home are obvious. And, psychologically, it will be far better for Lia.
A different “port of call.”
Yesterday, Lia had surgery to place a “port.” It’s an access to the subclavian vein that will make blood draws and medication MUCH easier than a traditional IV. They didn’t waste ANY time getting treatment started once the port was in place. Lia is glad to be rid of the IV in her hand. Right after Lia woke up from surgery, I took my 14 year old son to hockey practice. We are trying to keep his life and routine as normal as possible.
Over the years, even before I was a parent, my heart would sink whenever I would see anything on TV about children with cancer. During my senior year of dental school, I lived in an apartment that was a block away from St. Jude Children’s Research Hospital. So, I have always had a “connection” to the wonderful work they do. I have donated to St. Jude semi-regularly over the years. As a parent, when I would see anything about children with cancer, my heart would sink even more as I projected myself into that imaginary situation.
I don’t have to use my imagination anymore. It is the new life into which my family has been involuntarily thrust. There was life before June 15th, 2015. And, now there’s life after June 15, 2015. Life can change in an instant. And, that instant becomes the only milestone that matters. The impact of that moment makes everything else (you once thought was important) shrink into insignificance. This is the ONE thing that matters. A perspective that supersedes all else gives life new meaning.
I’ve experienced a roller coaster of emotions like never before… from extreme sadness, to frustration, to anger, to hope. I wouldn’t wish this on anyone. Nobody deserves this, and certainly not our Lia.
We’re at Day 6 now. Lia has had her first round of chemo a few days ago and had a blood transfusion last night. She had her second round of chemo this afternoon. So far, so good. We expect her home next Friday, if her numbers are good. That will be a good day. It will have been 10 days in the hospital. She misses home and her cats terribly.
After Lia comes home, she’ll have to go back for periodic chemo treatments for an estimated 6 months.
My wife has been staying every night with Lia. I’ve gone in every day to give my wife a “break” to go home. Of course, it’s not really a “break.” There are always things to do. We’ve got a 14 year old son to tend to, as well. I spend the nights at home with him.
I’m also trying to keep him busy with his usual activities (as much as possible).
Of course, we all love our children and put them on a pedestal. But, anyone who has met Lia will tell you that she is the sweetest person. She has always been a “happy soul.” She’s quick with a smile or with a goofy face. She’s polite and makes quick friends with everyone of all ages. And, she’s an “animal person.” She loves animals, and they love her. It’s amazing to watch.
We’ve got a long road ahead of us. This is just the beginning. But, we will get through it and be a stronger, closer, and a more loving family for it. Our petite, Princess Warrior Lia has already shown us bravery and resilience beyond belief… in the face of unforeseen and formidable challenges.
We appreciate all the kind words of support and prayers that we’ve already received. I’m not religious, but I have to believe in the power of numbers putting out that kind of energy. This Dental Warrior knows there is strength in the efforts of Prayer Warriors.
I’ve got, literally, thousands of friends through my extensive online network. And, I’m going to leverage that connection and the power that you all possess to effect healing through prayer, positive energy, vibes, meditation, asking the universe, or whatever else you want to call it.
I don’t know when or how frequently I will be posting articles during this time. I’m just going to see how things evolve.
I salute you all and am humbled by the spirit and generosity of your support.
UPDATE (6/26/16): Lia came home last night. She got another transfusion, another chemo treatment, and a lumbar puncture on her last day in the hospital.
Conversation just this morning…
Me: It’s so nice to have everyone home.
Chriss: Isn’t it? It’s amazing what you appreciate.
Lia: I appreciate this toast. (which she is eating)
Update September 16, 2015:
Lia got a 3-week reprieve from chemo because her blood counts were too low. The side benefit of that was that she felt great! Two weeks ago, she started back with chemo, both by IV at the treatment center and at home via injection and oral medications. She’s responding to treatment as is expected by the doctors. We’ve got a long way to go (about 2 years). We are taking it one day at a time and one week at a time.
We also wanted to extend a DEEPLY felt “thank you” to all those who have donated to the fund set up by our friend. It is overwhelming, honestly. It’s not something any man wants to do. We hate asking for or taking help. But, it IS a BIG help with her medical expenses. It’s heartening to know there are so many good and well-meaning people out there.
Update January 30, 2016:
It’s been seven long months. And, the battle continues. As I write, Lia has been in the hospital for six days. She spiked a fever due to a bacterial infection (enterobacter). She’s on IV antibiotics. And, she may be in the hospital for another week, still.
Today I spent the afternoon at the hospital, giving Chriss a “break” (so she could go home and be busy there!). I really enjoy spending time just BEING with Lia.
On the way out, I spotted a young girl with no hair, tethered to an IV pump (as they all are), playing at the piano located at the entrance to the pediatric oncology floor. She was by herself, no parents in sight. I figure she was 8 – 10 years old. She was just poking away at the piano keyboard. She didn’t look up at me, as if I wasn’t there. And, it struck me… hard… as I walked by and through the security doors.
Every so often, I get reminded of the magnitude of childhood cancer. It fucking sucks, and no kid deserves it. No family should have to go through it.
I’ve gotten “used to” seeing my daughter in her condition, in a weird way. I see her as the same beautiful girl with a beautiful soul…. the same happy soul she has always been. We joke around to distract ourselves from the serious nature of this experience. We’ve acclimated to “just another” hospital stay. It’s our “new normal,” though we fully expect to get passed it and move back to the “real normal.”
But, sometimes seeing other kids has a different effect…. a sobering effect. This is serious shit. Life-threatening shit. FUCK CANCER!