Thoughts on Osteosarcoma

Dear Ravi,

July is Sarcoma awareness month, and it is winding to a close. We are touched by all the friends who reached out with memories of you, donated to the Osteosarcoma Institute, or just volunteered a kind word. The words thank you simply do not express our deep gratitude. There were all sorts of statistics that were on social media about Osteosarcoma. Some of them were correct and a few of them were simply very wrong. I saw one statistic that claimed that there was a 70% survival rate at the 5-year mark. Maybe this is true if the cancer was stage one. I highly doubt it. Osteosarcoma is a sneaky, devious cancer. It hides deep in the body and often is stage 4 before it is ever caught. The 5-year survival rate at that point is about 30% and that does not factor in the other cancers that may come later from treatment, the kidney disease, the heart problems, or the potential of going blind or deaf. In short, the statistics are really grim and treatments for Osteosarcoma are over 40 years old. So, we continue to fight and to advocate for better outcomes. I will always be an autism advocate, but I will also be an osteosarcoma advocate. I can wear more than one hat.

The weather is super hot and muggy. Daddy is faithfully watering your trees every night and they are doing well. I can’t say as much for the rest of the yard. I was out walking the other day and wondering what I can do to honor your upcoming second anniversary in heaven. Just then a cardinal swooped in front of me. I thought about my recent conversation with Jenn, my bereavement peer, and it occurred to me that the most useful way that I can honor you is to become a bereavement peer myself. Jenn came into my life when I was completely overcome with grief and not even functional. We meet every week and talked about all sorts of things. Sometimes we laugh, sometimes we cry Sometimes we swear a lot. Our dogs wander in and out of our zoom meetings. We share snarky texts and cute animal photos all during the week. I want to be a light in someone’s grief like Jenn is for me. I am not going to do anything before your heavenly anniversary in October, but then I will sign up for training sessions.

It’s been a busy morning. I took the car to the garage for a low tire and then walked back. I took Raya for a walk. In a little bit I will take Gloria to the vet. She has not been eating and we are very worried. Hopefully, they can set her to right. Please keep praying for your Uncle Rob. He is back in the hospital with an infection. I have a pet sitter on standby and have told your Aunt Cindy that if she needs us, we will pick up the keys and start driving. Clarksville is about 10 hours from St. Paul, and we can drive there in one day. First though, I have to get Gloria to the vet. She was your best bed buddy and she misses you. This does not stop her from bossing around the other dogs and the cat. Even though she does not feel great she is still a force of nature! I am off to wake up your Daddy and get the day moving. I miss you but hope that heaven is climate controlled. Love you to the moon and back. Mom.

Six Week Follow Up

Dear Ravi,

I have just obtained a modicum of freedom! Yesterday was my 6 week follow up appointment with Dr. Mullaney, my orthopedic surgeon. He looked at the most recent X ray of my cervical spina and said that it was healing nicely. All restrictions were lifted. I no longer have to wear a neck brace, aka the cone of shame, I can drive, and I can begin PT! I am very happy. I haven’t driven yet but I will later today. I scheduled a haircut and a facial just to make myself look and feel better. It has been months since I have been behind the wheel. I keep telling myself that I have been driving for over 4 decades and it will come back to me. Nonetheless, I will stick to our neighborhood streets and back roads for my first time out. Daddy has been a lovely and trusted chauffeur these last few months it will feel great to venture out on my own.

I had two very solid reminders of you yesterday. Daddy and I were at the running store, and an older gentleman and his adult autistic son came in for a pair of shoes. This young man did not look like you, but other than that the semblance was uncanny. He was tall, wore a floppy hat, was doing lots of happy flaps, and clearly loved his daddy. HIs gait was also just like yours. I can never quite put into words how you moved, but it was very distinctive. You were easy to pick out of a crowd. This young man moved in a very similar fashion. The store staff was so sweet to him and helped him find the perfect pair of shoes. I did not hear him speak a word, but it was clear that mouth words were not needed between him and his dad. They understood each other perfectly. He stood next to his dad the entire time, held his hand and it was clear that this was his favorite human. I thought of how you always held my hand when we were out in public, or stood as close as possible to me and your daddy. I can still feel your hand in mine, warm and solid with a firm grip. I can see you wearing one of your favorite hats, bopping along, exploring the wide world around you. The world was your oyster and you were determined to open it.

The other sign that you are still close by came last night when I was road testing my new running shoes. I took all of the dogs out for individual walks. As Gloria and I were heading back towards our street a male cardinal swooped down from a tree directly in front of us. He flew across the street, landed on a fence and looked curiously at us. Then he flew to a nearby tree. I could hear another cardinal calling to him but could not see it. I can only assume that he had a mate and possibly chicks in a nest close by. As always, family is important.

Please pray for your Uncle Rob. He has spent the last week in the hospital. Today he is moving into a step down sub-acute facility. He is not sick enough to be in the hospital but not well enough to return home. He was scheduled for 2 weeks of radiation therapy but that is being put on hold as the step-down facility does not coordinate with the cancer center. Hopefully, this will be a time of healing and rest for him. His son, your cousin Aaron has his 26th birthday this week. I can always remember both Robbie and Aaron’s birthdays. You and Robbie share a birthday, and Aaron’s birthday is exactly one month after Mercury’s.

Ravi, I miss you deeply, but you sent me two signs yesterday that you are doing well and flying free. I have a meeting this morning with an agent to talk about my manuscript and your short but impactful life. After that I will get a haircut and join Pamela for a dog walk. She is juggling multiple dogs at the moment so all hands on deck are helpful. It feels so good to be strong enough to help my friends. It is a beautiful day today, the weather is not too hot, and the air is blessedly clear. It does not hurt to breathe. The dogs are just happy to be going on walks again. A week indoors due to unsafe air conditions was enough to drive us all a bit batty. Fly free my son and I will look for you in the autism community and in the cardinals that fly through our neighborhood. I love you to the moon and back. Mom.

Smoke, haze, 5 weeks post op

Dear Ravi,

It is eerie this morning. Due to the wildfires up north, smoke hangs thick in the air. I put the dogs out early this morning and I could taste and smell the smoke. It was like one could almost take a bite out of it. Even though the temperature was in the low 70s for a change, a dog walk was impossible. I hastily brought all the pets inside and slammed the door. No birds are singing. I hope that you and they migrated someplace safe where you can actually breathe. I doubt that you need an N95 mask in heaven, but wouldn’t it be silly and sad to see birds with masks over their beaks? What a sad world we have created. I am praying for this weather to break and that we get a good hard rainstorm. The backyard is a mess. It is too hot to mow, and all the grass is dying. I only care about your baby trees and Daddy religiously waters them with a slow drip hose every night. So far, they look okay, but the air quality cannot be helping them.

On a brighter note, I am 5 weeks plus 2 days out of surgery. I feel much stronger. In 6 days, I go see my surgeon for a checkup and hopefully lose this neck brace. In hot weather it traps the air and clings to me like a desperate octopus. I am ready to be rid of it. Before this week I was walking about 25 miles and week and getting steadily faster. I have not walked since last Sunday. Church was stifling last week. We met in the sanctuary, but everyone had fans and no one vested. All the windows and door were open but there was not a breath of air. Ten minutes into the service Joy announced that this coming Sunday we are meeting in the parish hall. The room has air conditioning. Pizza church on Wednesday was also held inside. We have a lot of very young and very elderly people in our congregation, and I worry about their safety in this heat and with this bad air quality.

Since I haven’t been able to get outside, I have been binge watching the World Cup. I love soccer and have since I was a kid. I love watching some of the best players in the world compete. We are down to the final match on Sunday, Argentina versus Spain. Sadly, England lost to Argentina in yesterday’s match. The US team washed out last week. I wasn’t even that sad after the red card scandal that got “fixed”. I do want to remind you that the US Women’s Team has won 4 World Cup championships in a row, without any outside interference!

Please pray for your Uncle Rob, Aunt Cindy, and their sons. He is not doing well. Pray for better mobility, strength, less pain, and better quality of life. I have Chris, our pet sitter set up to come at a moment’s notice if Cindy calls and says that she needs help. We are ready to start driving at a moment’s notice.

The pets are demanding my attention, even though they just had a scrumptious breakfast. That was 15 minutes ago and they have already forgotten. I know that you are flying free away from this earth that is on fire. I miss you desperately but am glad you are safe and strong in a place that can do you no harm. I love you forever, Mom.

Backyard Bird Battles

Hi Ravi!

You won’t believe what was going on in the backyard, feathers were flying. Despite having 2 fruit trees out back, until today they have not attracted any birds. The cherry tree bloomed, grew cherries, and was harvested without event. The crabapple tree continued to make fruit. Yesterday, a dozen chickadees descended on the crabapple tree and decided to have a feast. The tree is still small and does not have many sturdy branches. Though there was a plethora of crabapples, the birds became very pugnacious and fights broke out. They were flying in and out of the tree, divebombing one another and making a complete racket. Little birdie battles were breaking out all over the yard. Nikki was sitting on the back of my chair making his “eck, eck, eck” noise, thinking this show was even better than the World Cup. The dogs remained oblivious. About 10 minutes later, as swiftly as they had come, all the birds vanished. About 3/4s of the fruit was gone. Though my favorite bird is the cardinal, I have to give props to the chickadee. They are so little and so fierce. If they are going to fight that hard for a snack, I will let them have it. Despite what the republicans say, everyone deserves to eat. I am thinking as a 25th anniversary present to ourselves, daddy and I should buy a bird feeder and put it out back. That way everyone can have a snack and maybe it will put a damper on the bird battles.

It has been really hot lately and I have not been taking the dogs with me when I walk. On my walk yesterday I saw a beautiful red cardinal. It cocked its head, looked at me and then flew off into the trees. I am convinced that you were checking in on me. A bit later Paul reported that there was a swarm of cardinals at his feeder in Connecticut. I told him that you, Joyce, and Dave were stopping in to say hi and to have a snack. He agreed. I told him about the backyard bird battles and he was amused. You always did have a way of making people laugh. Sometimes, you make me laugh and cry at the same time.

In 10 days, I get my cervical brace off and I cannot wait. I am hoping to do PT after that to strengthen my body. I am still holding onto a pipe dream that maybe I can run again or at least walk/jog. My marathon and ultra days are probably over, but it would be fun just to be able to jog a 5km. There is a turkey trot in Fredericksburg that I would love to do with Etta and Denny. Time will tell.

We are nearly halfway through Sarcoma Awareness month. I am still talking to anyone who will listen about the needs for better research and outcomes for Osteosarcoma. I will keep banging this particular drum throughout the month, and ultimately, until I take my last breath. Once again dear readers, please find the link to help below.

https://osinst.org/herndon-fundraiser

It is still cool enough to walk the dogs, so I think I will log off. Be sweet and fly high. If you see some chickadees, give them some space. All God’s children have a place in the choir, and all God’s children deserve to eat, be it crabapples, bird seed, or Taco Bell. I love you forever. Mom.

One Month Out

Dear Ravi,

I am now a month out from surgery and feeling better. I don’t need trekking poles to walk anymore, and I can walk one dog at a time by myself. This is nice as I am not so tied into daddy’s schedule and can take off whenever I chose. I walked 3.5 miles with a friend today, and 5 miles on Monday. I am slow but gradually gaining strength and speed. In 12 days, I will go see the surgeon and hopefully get to leave the cervical spine brace behind. I will also find out what activites I can do and what activies from which I must refrain. I have no idea if I can ever run again. As to the brace, it is hot and cumbersome, and I am tired of sleeping in it. It is doing a very good job protecting my spine, but I want to be able to drive again. I have things lined up to do when I get this brace off. I am going to go for a drive in my car and listen to 80’s music, like we used to do. I am going to the salon and getting a haircut and a facial. Then, Pam and I are going soaring with daddy. Hopefully, I will be able to look sideways again, without rotating my entire body. Lots of things to look forward to.

It is hot today and supposed to be even warmer tomorrow. If I am going to do any walking, I will have to get up early. Raya does not like the heat at all. Jack Jack can tolerate it. Gloria just charges on through, but I am careful to walk her at cooler times of the day. Nikki and Catherine are seeking out parts of the house that are in the shade.

I spent an hour today talking to Jenn, my bereavement peer mentor. She lost her son Zach to osteosarcoma about 5 years ago. She is encouraging me to become a peer mentor. I am not quite ready to do this, but I would like to help other bereaved parents. After you lose a child to cancer, your entire vocabulary changes, your interests change, your priorities change. I just want to be a kind person in a world that is often random, callous and cruel. Since it is Sarcoma awareness month, I am spending the entire month putting Osteosarcoma on blast. I am still an autism advocate and always will be, but autism is not nearly as lethal as osteosarcoma. Jenn and I doubt that there will be a cure in our lifetime, but we will keep fighting and advocating for better resources and outcomes. For my readers, I will continue to put forth this link so you can help us with better resources and hopefully, one day, a cure. Every little bit helps.

https://osinst.org/herndon-fundraiser

Today, my coach Dave Coyne is celebrating his second birthday in heaven. He would have been 70 years old today. His running club misses him here on earth, but I am certain that you and Joyce are having a wonderful time with him in heaven. Please pray for your Uncle Rob. He is recovering well from his latest surgery, but his last scan was rather grim. He is still working, mostly from bed, but he gets up every day and continues. I am in awe of his fortitude.

It is 5:04 pm and the animals are telling me that it is dinner time. There is kitty chow, dog chow, and bugs to be served. Some things never change. My love for you will never change. See you on the flip side. Mom.

Raya’s thoughts on Osteosarcoma

Hi all!

My name is Raya and I am an Australian Shepherd. I have lived with Harriet and Robert (mommy and daddy) since December 14, 2024. Before this I was a breeder bitch, and my job was to make beautiful puppies. I did this job well, but I really just wanted a human family of my own. Mommy and Daddy adopted me from Northwest Australian Shepherd Rescue. Let me tell you, my life is so much better! I have a safe home, humans who adore me, lots of walks and bones, it is everything a girl could ask for! My morning ritual is to get up early with mommy, eat breakfast, and then go for a walk. I love walks! Later, daddy wakes up and gives me a good ear rub. Then, he has his morning yogurt, and he always lets me lick out the container. Later on, I play with Nikki, the tabby cat. We are besties.

Before I came to live with mommy and daddy, they had a son. His name was Ravi. Mommy and daddy talk about him a lot. I never got to meet him. He passed away of something called Osteosarcoma. I don’t know what that is, but it sounds bad. Mommy says that there is not enough money or research for better outcomes and that the standard treatments are over 40 years old and don’t work well at all. Anyway, I would like to have known Ravi. He sounds like he was a great human being. If you would like to help contribute to better outcomes for osteosarcoma, please click on the link below.

https://osinst.org/herndon-fundraiser

Mommy says I came into the Herndon family at exactly the right time. She felt that daddy needed someone to love him and that I was the perfect dog for a broken heart. I am glad I could help my daddy; he is a great person. Anyway, my paws are tired from all this typing. Thank you for reading my story. Daddy is about to get up and share his yogurt with me. I just got back from a walk with mommy and found lots of good things to sniff and bunnies to chase. I am a happy girl, but I wish that there was a cure for osteosarcoma. As mommy always says, be a good human. Ta ta! Raya.

Gloria has a birthday today!

Hi everyone!

This is Gloria and I have stolen mommy’s computer. Please bear with me as I don’t have thumbs and it takes me a while to type. I want you to know that I am a very good girl. I first met mommy when I was 3 weeks old. She sat down in a pile of puppies, me and my brothers and sisters, to play with us. We all played for a while and then all the other puppies wandered off, and I crawled into her lap and fell asleep. That was when mommy and I decided that we belonged together. I came home with mommy when I was 8 weeks old. I was a little uncertain about leaving my littermates, but I decided that mommy, daddy, Ravi, and Mercury were okay. When mommy introduced me to Ravi he began to cry. He was afraid that mommy would not love him anymore. She convinced him that she had plenty of love in her heart for all of us and soon Ravi and I became good friends. I miss him.

Right now, I live with mommy, daddy, Jack Jack ,Raya, Nikki, and Catherine. Jack Jack is my half-brother, we have the same daddy. I wasn’t sure about Raya at first, but we have learned to live with each other. Mostly we just ignore each other. She likes to play with Nikki, she cat. I like to play with/boss around Jack Jack. My favorite thing to do is to go for walks with Mommy by myself. Yesterday, I was trotting down the sidewalk and a funny man said, “Hi there, killer!” I was very proud. I may only weigh 12 pounds, but I am very fierce. When I am not walking with mommy I like to run around the backyard and bark at bunnies or people in the alley, chew on bones, and sit in mom’s lap. Since she is recovering from surgery we have been watching a lot of World Cup Soccer. I would love to chase a soccer ball. I bet I could even score a goal! Messi has nothing on me!

Well, my paws are getting tired, so I think I will sign off. I have bunnies to chase. I want to remind you that I really loved Ravi and that this month is Sarcoma Awareness Month. Did you know that the drugs used to treat Osteosarcoma are over 40 years old? Did you know that you can help further research and better outcomes by clicking the link below?

https://osinst.org/herndon-fundraiser

Even if you don’t contribute you can still see some fun pictures of my best friend, Ravi. As mommy always says, be a good human. I will try to be a good dog, but sometimes it is more fun to be naughty. Ta ta, Gloria.

Let’s end Osteosarcoma!

Dear Friends,

July is both Sarcoma awareness month and bereaved parent month. During this month I am raising awareness of Osteosarcoma and raising money for better research and outcomes for this devastating disease. If you are interested in learning more about Ravi and helping fund essential research, please click on the link below.

https://osinst.org/herndon-fundraiser

Thank you for following my story and being good humans.

Peace,
Harriet

Sarcoma Awareness Month

Dear Ravi,

The surgery was worth it. When I woke up this morning, I realized that the migraine that I have had since mid-March is gone! I can actually think straight again. What a relief. Daddy and I walked the dogs 4.2 miles today before it got too hot and sticky. The pets are all laying belly down on the coolest patches of floor that they can find. We have AC boxes in your room and the living room, plus a fan. The house is at a very comfortable temperature. We don’t like it too cold as Daddy and I are both heat seeking missiles, but the break from the outdoors is very nice.

This month is both Sarcoma awareness month and Bereaved parent month. My goal is to talk about you and rare cancers all month long and to celebrate your short but highly impactful life. I will be talking to Vanessa from the Osteosarcoma Institute later this week about fundraising ideas this month. I am still an ardent autism advocate, but my new hat is also that of being an osteosarcoma advocate as well. The current administration is not kind to those who are sick or those who have autism or other disabilities. They believe that even sick people who are receiving MA should work or volunteer at least 20 hours a week. We both know that this is impossible. I never had any plans for you to work anyway, we all knew that you were a rec and leisure kind of guy. I just wanted to find welcoming communities where you could live your best life. Now the administration wants to overthrow the Olmstead Act and put those with disabilities back in institutions. This is cruel, callous, and very wrong. I never even had plans to let you live in a group home, let alone an institution. I feel as if we have fallen back into the 1950s where children with disabilities were taken away from their parents, warehoused, and parents were told it would be better to pretend that their children never existed. Ravi, I clearly remember the first time I felt you kick in my womb and I fell madly in love with you. How could I possibly give you up? The longest you ever stayed away from us in your 22 years was when you went to Camp Hand in Hand for 5 days and 4 nights. You had the time of your life, and I was thrilled that you got that opporunity. You got to swim, go on boat rides (your favorite) hike for miles, do music therapy, eat tasty food and make new friends. What an incredible adventure! Every child deserves to attend summer camp. No child or adult needs to live in an institution. Period.

It is clouding over outside and getting very humid. I am glad that we walked the dogs earlier in the day. I did not see any cardinals, but I did see a cute baby bunny. Daddy has some errands to run, and I have some notes to read about writing a strong letter of query. These notes have been sitting on the back burner for nearly 2 weeks, but I did not have the brain power to read through them. Today is a good day for brain power so I will pour over the notes and then rewrite my letter of query. Later on, I have a zoom session with Jenn, and we can talk about how very odd it is to be a bereaved parent and how to raise more awareness about osteosarcoma. My life looks so different than it did 4 years ago. My goals are completely different. I am still an autism advocate, but I am also an osteosarcoma advocate. I am no longer a runner, but I can walk in your memory. I have probably trained my last service dogs, but I still love being surrounded by Australian shepherds. Still, I know that we will recognize each other in heaven. Our love is a bond that will never be broken. To all my readers, be good humans. Love, Harriet.

Osteosarcoma Awareness

Dear Ravi,

Remember when I told you about running the Brave Like Gabe 5km, and how this year I was going to walk it virtually? Well, yesterday was the day. June 27 was Gabe’s birthday, and she wanted a race in her memory. As I was 18 days out from surgery, I did not know if I could participate in the actual run, but I signed up, donated money to osteosarcoma and rare cancer research, got my shirt and number and was ready to go! You dad and I walked about 5 miles yesterday and 3.1 of those miles were for you and Gabe. I heard that the race raised over $40,000 for rare cancer research. This makes me very happy!

I was very tired after our walk, but it was a good tired. I am glad we got the miles in yesterday because right now we are under a heat dome. It is about 84 F outside but feels like 94 F. This is an excellent day for daddy and I to finally break down and put in the window AC. The dogs keep asking to go out and then they turn around and come right back in. Nikki has not even tried to make a dash for it. Catherine the hedgehog is in full sploot mode in her habitat.

On Saturday we met up at the airfield with Tom, Penny, and River. Daddy took them all for rides and everyone had a great time. I did not go up as I still have my neck brace for another 4 weeks. I am looking forward to getting it off. Once I am free, I will be able to drive again, get a haircut, go up in a glider, and be able to sleep more comfortably. I am not complaining because you never complained. The brace is doing its job and protecting my cervical spine while it fuses. It will be nice to get some independence back!

The cherries on your tree are fully ripe and ready to be picked. That is my next task for the day. My original plan was to make a cherry pie for Daniel and Robin, but I don’t know if I have enough cherries to do that. I will ask Daddy what sort of tasty treat we can turn these cherries into. Your crab apple tree is also doing really nicely, but I don’t think the crab apples are ready to harvest. I think that will be an adventure for August.

June is such a bittersweet month now that you and Mercury are gone. It used to be my favorite month of the year. Now, it is a time of remembrance and grief. If I could bring you back, completely healthy and happy, I would do it in a heartbeat; but your body is no longer in this world. You fought so hard and now you deserve eternal happiness and freedom. No more chemo, no more seizures, no more pain or fear. I know that you are flying free with Cousin Joyce and a myriad of other good souls. July is sarcoma awareness month, and I am going to use my platform to raise funds for the Osteosarcoma Institute. The therapies used to fight this disease are over 40 years old and they don’t really work. We can do better. Science can do better. As Paul Wellstone said, “We all do better when we all do better.”

I am about to go out and put some water out for the birds and pick the cherries from your tree. I am quite open to divine inspiration as to what to do with them. Fly free my son and know that my love for you and for Mercury will never die. Mom.