Tag: love

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.

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.

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.

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.

Happy Birthday Mercury

Dear Mercury,

Happy 22nd birthday. I hope you are doing well. We have not seen you since you were 18. Do you remember your 18th birthday? I took you and Eli to an Indigo Girls concert. It was directly after the fall of Roe vs Wade and the feminist energy and anger was high in that arena. It felt wonderful to be surrounded by strong, powerful, righteously angry feminists.

I wonder what you are doing now. I know that you and Eli got married a few months ago. What happened to my daughter that I raised to be an independent free thinker? Your world seems so small now, your high school friends have left you. You looked positively miserable in the few wedding photos that I saw. What have you done?

I don’t really expect that you will ever come back, though the door is always open if you wish to. You never even sent a card to Ravi while he was ill or talked to him on Facetime. You did not attend his funeral. I grieve both Ravi and you. My grief for you is more ambiguous. Your brother is dead. You are alive. Both of you are very far from me.

22 years ago you danced into my life and the angels all applauded. During my pregnancy with you I had not sense of your gender. My first words when the doctor showed you to me were, “It’s a girl!” I was stunned and delighted. I had a boy and a girl, both healthy, and I thought that life could never get any better. Though we had our struggles as a family, that time was sweet. You learned to walk at 9 months, spoke in full sentences at 1 year, and were reading fluently at age 2.5. The world was your oyster.

You have chosen a very difficult path. I want to remind you that the world is still your oyster. You have so much potential, and so much life left to live. The door is always open if you want to reach out. Though you claim that I am nothing but your “womb bearer”, I am still your mother. You share my DNA. We had you baptized into the community of Christ. There are some things that you cannot change, no matter how hard you try. If you reach out, you will find an open door and a listening ear. I believe we both need time and therapy to address what has come between us. I am more than willing to give you this time. Love, Mom.

World Juggling Day

Dear Ravi,

Yesterday was World Juggling Day. We met the Neverthriving at Minnehaha park, grilled, threw things in the air, walked on stilts, played with kendamas and romped with dogs. As I am less than 2 weeks out of surgery, I was just there for moral support. It was a beautiful day with lovely friends.

Earlier in the day, I met with an agent named Katharine. I had sent her my letter of query and my manuscript. She had only wanted 1o pages of it, but I could not figure out how to send only 10, so I sent her the whole thing and told her to stop after the first chapter. To my surprise, she read the entire document, said that her attention never wavered and that I had a strong, compelling writers voice. We spent a lot of time going over the letter of query, which I knew was my weak link. Her first suggestion is not to call myself a mother but an autism advocate and to play up the fact that I am a late diagnosed autistic woman with 2 autistic children whose autism manifests very differently. I had her on conference call and took at least 5 pages of scribbled notes. She was very encouraging and also suggested that I submit some of my essays to the Huffington Post to gain more readers. When we returned from the juggling party, I discovered that she had emailed me her notes from a seminar she gave on writing a letter of query. I was very touched and fired off a thank you note. She was slotted to speak with me for 15 minutes, but gave me 35 minutes of her time. It was time well spent. I feel like I have the ability to move forward on my letter of query. I also have some ideas to add to your story. She loved your story of falling in love with the school bus and said this made you seem very real to her. All in all, between talking to Katharine and celebrating World Juggling Day, it was a banner weekend. Today is Father’s Day and we are just lying low. I firmly believe that Daddy was and is the best daddy in the world for you and for Mercury. He loved you both unconditionally and always will.

Raya did something very brave today; she picked up a new toy and carried it around for a little while. She had no toys as a puppy and is only now learning how to play. She and the kitty have a nice relationship. They lie together and chase each other around. They are very gentle friends. Gloria is seeing her behavioral vet tomorrow to talk about her so called “special needs”. As long as she is fixed like glue to my side, she is fine, but she is very jealous of Raya. The two have not gotten in a fight in ages, mostly because I keep them separate and Raya goes out of her way to avoid Gloria. The other morning, something funny happened. I had Gloria and Jack out in the back yard. Suddenly, Raya pushed her way out. All 3 dogs froze, stared at each other and then ran in opposite directions! No one wanted to start anything. I called them inside one by one, and gave them lots of treats and praise. Slowly, we are all becoming a family, a pack.

I wonder what you are doing today. Alissa and I had so much fun talking about you on your birthday and remembering the good times. She is in town this week and Daddy hopes to take her out to the glider field next weekend. I haven’t seen any cardinals today, but we saw a whole bunch of baby turkeys earlier. They are very cute and fuzzy. I love you and miss you. Mom.

Happy birthday in heaven

Dear Ravi,

Yesterday was both bittersweet and magical. I had cardinal sightings pouring in from friends across the country. Obviously, you were out and about on your big day. How is it that you are 24 already? I am amazed. We started out the day at St Clement’s, meeting with Roberta on the parish green. We sat and talked, laughed, cried for several hours. The sun was shining, the crows were carrying on a lively conversation, and it was a perfect day to be outside. Later, Daddy and I went down to the chapel to see you. I am continually reminded of what Joy said when she interred your ashes. She said, “Ravi is not here.” She was very right. You are the sunshine on my face, the wind at my back, the bird song I hear lilting in the morning hours. For all of these things, I am very grateful.

Last night, after work, Alissa came over. It was like no time had passed since we had last met. We laughed, cried, howled, snorted, shared memories and food and 5 hours flew by. It was a magical evening. I am so grateful for all of our friends who wished you a happy birthday, touched base, sent cards, etc. I was deeply afraid that no one would remember you, but Ravi, our friends came through. You are deeply loved, remembered, and missed. The cherries on your tree are almost ripe. So far, the birds have not discovered them. The plan is to harvest them in a week or so and then make them into a pie for some dear friend. It seems a fitting tribute.

I am having a low energy day today. I think I poured all of my emotions and energy into yesterday and I don’t have anything left. That is more than okay. It is worth it; you are worth it. You were always worth it. Tomorrow is a busy day. I am meeting with an agent about your manuscript in the morning. In the afternoon is World Juggling Day at the park. In the evening is the opening ceremonies for the Special Olympics. I am resting today so I can fully take part in the activities tomorrow. Luka came to heaven last week. Have you caught up with him? He is a good boy and deeply missed by Laurie. You and Dave and Rosie can take good care of him. Please pray for you Uncle Rob. He is still battling a cancer that just won’t quit. I know that you are in a world without cancer, but we would like to keep Rob on earth with us a bit longer. I am about to go watch the World Cup. The pets will keep my company. I love you forever. Mom.

Home with Pets

Dear Ravi,

On Tuesday, I had my spinal fusion surgery. It was a success. My memories of the last 48 hours are a bit scattered. I remember being rolled into the OR and it was very bright and cold. I remember waking up in the PACU. The clock across the room said that it was 2:15 pm. I was happy because my fingers and toes still wiggled and I was not feeling any pain for the first time since last winter. An alarm kept going off and the nurse kept reminding me to breathe. I had a nasal cannula in and was not too concerned about it, but this seemed to be worrying the nurse. I spent a few hours in the PACU relearning how to breathe and waiting for a room upstairs to open up. In the interim, Daddy went home to feed and walk the dogs. Late last night there was a huge thunderstorm. My room had a big window looking out over a park and I lay there and watched the lightning for hours. It was amazing! I later found out that Daddy slept through the entire thing, even when part of our tree outside the bedroom window came crashing down. He must have been tired!

It is now 2:30 am on Thursday morning and Nikki and I are hanging out. I went to bed around 9pm last night and woke up around 1am, in pain. I do not like taking narcotics but reminded myself that I would not get a prize for gutting it through the pain. With some oxy and a muscle relaxer on board I am feeling much better, so I decided to write to you. Everyone who I met at Methodist Hospital was very nice, but I am happy to be home. Friends have been bringing by food, Daddy and my pets are only a few steps away, and there are no alarm bells ringing. I am having to relearn how to move my body in ways that will let my back heal. I cannot lift anything over 5 pounds and cannot do any BLT, or bending, lifting and twisting for at least 6 weeks. The pets are used to me picking them up, but are learning that if I sit down, they can either sit beside me or curl up in my lap. The PT and OT showed me how to shower safely and get into and out of bed, how to get dressed, but no one talked about how to take care of a 12-pound kitty who thinks that he is an arm cat! I can’t tell you how happy we are that Nikki did not stray too far from home and is safely back indoors.

Today is the day that Luka goes to heaven, so please keep your eyes open for him. As soon as he sees you and Dave and I know that he will feel right at home. Laurie, Joel, and a whole host of his admirers will mourn him deeply, but I know that our and Rosie will take good care of him. Warning! He likes to chase geese!

I am not really certain where this letter is going, but I am missing you and wanted to reach out. The animals have given up on me and have returned to bed, so maybe I should too. I love you forever. Mom.

Nikki on the loose!

Dear Ravi,

Thanks for checking in yesterday. As you know, today is the day before my surgery, but I have had little time to think about it. When Daddy was letting the dogs in for the last time last night, Nikki slipped out. We realized this early this morning when he did not show up for breakfast, and he is a very punctual eater. I put out a message on Lost Pets, Next Door, and our neighborhood Facebook page. Daddy and I spend hours scouring the neighborhood, rattling treat bags and calling. I had the feeling that he had not gone very far, as he is strictly an indoor kitty. Hours passed. I continued to look and call, climbing under porches and in and out of window wells. The neighbors probably think that I am nuts. News flash! I am! Anyway, I was sitting on the front porch calling and thought I heard a faint meow. It seemed to be coming from the corner of the house where the porch juts out from the bedroom. That area has a huge tree in it, as well as hostas and ferns that have grown wild. I waded in and then army crawled in the direction of the noise. There, in the farthest recesses up against the house was Nikki! His eyes were huge and he seemed frozen in place. He did not protest at all when I scooped him up and waded back out of the thicket. In the following hours, he has had a good drink, some dinner, and is hanging out with Raya. He seems none the worse for wear. Slowly, my adrenaline is coming back to baseline. Now, all the animals are asleep at my feet and I am exhausted. If you were part of Nikki’s homecoming, thank you very much. Order, for the moment, is restored.

We check in to the hospital at 9 am tomorrow. Surgery begins at 11 and should last about 2.5 hours. Penny will be sitting with Daddy in the waiting room. Lots of other people will call or text him tomorrow night to check in. I am hoping that I am only in the hospital overnight. I want to recover in my own home with Daddy and the pets. Luka will be joining you on Thursday. After we recovered the cat, Daddy and I went to sit with Laurie and Joel and give him lots of love. He definitely enjoyed it. I have fond memories of walking with you, Laurie, and Luka at the nature preserve. We had a lot of good times there. I haven’t seen any cardinals today, but I know that you are close by. I love you forever. Mom.