UPDATE 16 APRIL 2019
Alex’s mom posted this on the Army of Love Team Alex Facebook page today. Please keep Alex in your prayers
My heart is heavier than I ever thought imaginable. Alex’s scans revealed a 5″ tumor in his right lung. He has relapsed, and there is not much they can do. They gave us five options, none of which have the potential for more than a 5% chance of survival, and most of which will include much more suffering for my sweet boy. After talking this over with Alex, and giving him time to process all of this, he has decided to do the tests necessary to explore the option of more radiation. The tests will reveal whether or not that is even possible, as the cancer may have spread to his lymph nodes and his bones. His scans over the holidays were completely clear. Now this.
Rhabdomyosarcoma is a monster. Alex is in pain, he is suffering, and it is unbearable. So we cling to every lucid pain-free moment we can, and are having as much fun with friends as possible, but even now that is a struggle. Please pray that my beautiful sweet boy can find some joy during this excruciating time, and that we all find some sense of peace.
ORIGINAL POST 13 OCTOBER 2019
My Baltimore marathon adventure will take me back home to the city where I was born and grew up. Memories of steamed crabs, snowballs, the Orioles and visits to the Inner Harbour are already bubbling to the surface, reminding me of the good times spent in my home city. Baltimore has its share of problems, but it will always be ‘home’ to me. This visit will allow me to see some family, catch up with running friends, take a running tour through places from my childhood (I am excited about running by the penguins at the Zoo!), having a Natty Boh or two and hopefully enjoying some cool fall temps.
This marathon will also be a very meaningful one for me, as I am running for two people on this 26.2 mi journey. I debated on whether I should do this or not, as I do not want to lessen the meaning for either person. After some thought and asking a couple of friends, I feel like 26.2 miles is a long distance, and doing it in my hometown makes it that much more meaningful for me to share the journey with both of my companions on the way.
The first person I am running Baltimore for is Alex Rach. Alex is a 10 year old boy, the son of my friend Tammy, with whom I worked while at Dolphin Quest. Granted she was in Oahu while I was many time zones away in Bermuda, but we had a variety of meet ups at conferences in addition to regular team phone calls between the corporate office, the two Hawaii locations and Bermuda. We shared a crazy conference adventure in Mobile, Alabama, along with some really delicious oysters and fried pickles, a bond that cannot be severed.
This past spring, Alex was a normal, active 9-year old boy. He loved to ride his BMX bike, play X-box, sing and had an incredible sense of humour. That all changed seemingly in the blink of an eye.
On Thursday, May 18, 2017, Tammy and her husband Jeff got news from doctors that no parent should ever have to be given: their beautiful, fun loving and caring baby boy has cancer. Alex has a MASSIVE tumor that grew VERY quickly in his abdomen. It was putting pressure on his organs, his nerves, and has spread to his lungs (three nodules). It is metastatic, stage 4 rhabdomyosarcoma (RMS). A team of amazing oncologists worked to get Alex started on a very aggressive course of treatments, which at the centre was chemo – and lots of it. In fact, on Alex’s 10th birthday, he was receiving chemo.
RMS is a very rare cancer, with only about 350 cases of RMS diagnosed annually in the United States in children under the age of 21 years. For every 1 million healthy kids under the age of 15, only about four will develop RMS each year. This disease is rarely seen in adults; it is most common in kids under the age of five.
His journey is brutal. Alex has to undergo about 12 months of treatments, including chemo. He’s done about four months, so there is still a long way to go. He cannot walk, has been in a hospital from May through to mid-September before he was finally able to spend his first weekend at home. This meant for the first, most difficult part of his treatments, he was without his comforts (including his cats) near by. Even though he is now home, he still is undergoing chemo and now radiation, must complete painful physical therapy daily, sometimes cannot eat, has had to undergo platelet transfusions and dialysis – and the list goes on. I follow their Army of Love Team Alex Facebook page, hoping for good news as this family navigates this difficult journey. They are raw with their posts, sharing the good, the bad and the ugly. Sometimes it is just so bad and ugly, my heart breaks for them.
The amazing news is that he has started to feel better on occasion, which has meant time with friends, playing and finding some semblance of normalcy in between doctor appointments, treatments and those times when he is unwell. I’m so happy when Tammy posts positive progress and photos of Alex enjoying normal 10-year old boy activities. And of course her post that the tumour has shrunk was so exciting to read.
Alex is very much in his own marathon – one to beat cancer. He has to have endurance, will, belief that this can be beat and a determination to do what it takes to cross his own finish line. How appropriate that I can also run a marathon to honour Alex’s journey on the way? I know what it is like to run an actual marathon. I’ve had the blood, sweat, tears and missing toenails from months of training. But an actual marathon is so much easier than what a 10 year old boy in California is going through right now.
His parents too are in a marathon, trying to kick cancer’s butt. It’s not easy for them as they watch their son struggle and go through such a crazy roller coaster of things that no parent wants their child to experience. I see their honest posts about their experiences, frustrations, hopes, fears and more. I can’t imagine what they are going through. I can only do my small part to encourage them to keep plugging through. And if running a marathon to help honour Alex’s (and their) journey through childhood cancer does something to lift their spirits, then I am thankful that my run can happen for them.
All I can say is that anytime you tackle a long term goal, you just have to take it one step at a time. Some steps will be easy and you feel like you’ve figured it out; others will test every ounce of strength, sanity and mental toughness you have. You sometimes question why on earth are you doing this. Those ‘miles’ may go by quickly or seem to take forever, but I promise that if you keep moving forward with grit and determination, you will eventually come to the finish line. And I will be there to cheer you on all the way.
If anyone has been touched by Alex’s story and would like to help his family with medical expenses, you can donate to their YouCaring page HERE. Please consider donating $1 for each mile I am running, for a total donation of $26.20. I know Alex and his family would be very grateful.
I’m also running Baltimore to remember Sgt Deana Orellana, USMC, who died by suicide after her battle with PTSD. Please help me remember her on October 21, 2017.