Harriet's Hedgehogs and Autism Advocacy

Greetings, all. Ravi is loving being home from the hospital and on his good days has been going to school. His hair is coming back in, looking like a 5 o’clock shadow all over his head. He is eating well and is gaining energy and endurance. Loves to go for walks around the neighborhood. Tomorrow we will break out the adaptive bike.

It has been an emotional couple of weeks. Two weeks ago, we met with Dr. Greengard, his oncologist. She said that as much as we wanted a cure for Ravi, it might not be possible. Surgery was not an option, but we would talk more after his PET scan. We were devastated. Last Monday he had a sedated PET scan. I spent 48 hours pacing the floors waiting for results. Finally, the results came, and they were good. The tumors in his lungs are stable, all the other ones show much decreased metabolic activity. On Thursday, we met with Dr. Greengard again. Suddenly, the conversation changed from how to give Ravi some quality of life, to how aggressive do we want to be. He has one round of Doxy left. Then we will test his kidneys. If the kidneys have recovered, we can do one more round of cisplatain. Then she wants to move on to targeted radiation therapy to the tumors in his tibia and L 3. The main tumor, in his left humerus, is too big to attack with radiation, even though it has shrunk considerably. She wants us to talk to Dr. Cheng, a sports medicine surgeon whom we saw back in December, about removal of the tumor. That meeting is June 5, right before an infusion of Doxy. She also wants us to talk to a lung surgeon, to take out the nodules. Right now, the nodules are stable, just sitting there. They could just sit there for years, or they could metastasize. I don’t want to look back in 5 years and wish that we had been more aggressive. We have a lot to think about, but right now are letting Ravi take the lead. These are not trivial surgeries. He would lose some, we don’t know how much, mobility in his left arm, and lung surgery would keep him in the hospital for close to a week. Ravi is firmly invested in being alive. Throughout this whole ordeal he has never once faltered or felt sorry for himself. Ravi wants to be alive. As long as Ravi clings to this spark, this zest for life, we will fight for him. The oncologist agrees with us.

Lots of big decisions to be made in the next few weeks, but we are taking things one day at a time. Ravi attended a party last night and had a great time. He is graduating from Focus Beyond on June 13 in cap and gown. He wants to go for walks, go to Taco Bell, and ride his bike. He wants to laugh at the absurdity of life in general. And we want these things for him. Thank you all so much to everyone who has showed up, either in prayer, good intentions, or in person. From doing things like organizing my kitchen, sending over a meal, or pilling my cat. All of these things are deeply appreciated. Please keep the prayers, good intentions and good energies coming. They help! We are letting Ravi lead the way, and we will follow. Peace, and be good humans.

Sixteen days , a little over two weeks. That is how long Ravi was in the hospital for chemo. We were supposed to be in and out in four or five days. The fates had other plans. Methotrexate is the chemo drug he was receiving this time. In the past, he has gotten severe mucositis from it. This means his mouth, lips, and throat were covered in sores. Imagine having a canker sore that went all the way from your lips to your stomach. It makes eating next to impossible. The only reason Ravi survived was because he was getting all nutrients and fluids through his g tube. Before the next round of methotrexate I began giving him glutamine. It worked. He sailed through that round of chemo with minimal discomfort and was able to take in food and fluids by mouth and by his gtube. The plan was to return the next week for another dose of methotrexate and the following week for a dose of cisplatain. Well, things did not go as planned.

We checked into the hospital on April 17. That evening he received his dose of methotrexate. In the middle of the night, I became aware of nurses in and out of the room, administering something else into his port. What I found out later was that his labs showed that his kidneys were in severe distress and they had given him a rescue med to counteract the chemo. Usually, leucovorin is given after chemo to stop damage to the kidneys. This time, it was not enough. This followed 16 harrowing days. To get rid of the toxins, the doctors were pumping him full of fluids, but his kidneys could not keep up with the burden of the extra fluid and quit working. In less than 48 hours he gained 30 pounds in water weight. He looked nothing like himself and was wildly uncomfortable. The doctors kept listening to his lungs to see if he was in distress or if the lungs were sounding crackly. So far, they were not, but he was clearly miserable. Somewhere in the middle of the night, around 2 am I went nose to nose and toe to toe with the resident on call. Ravi was in pain and laboring to breathe. He could only breathe sitting up, and that was hard. I called the resident and begged for Lasix to take off some of the excess fluid. She did not want to do it. I would not back down. Eventually, she called her supervisor who agreed to 20 mg of Lasix. I stayed by his side the entire night, watching him breathe, willing him to keep breathing. About 7am, Robert took over and I staggered home to feed the animals and grab a few hours of sleep.

The next few days were long and hard. The regular doctor prescribed Lasix and leucovorin on around the clock basis and slowly Ravi began to pee out the excess fluids. It took many days before I could even see his ankle bones again, or that his normally angular face had any definition at all. In the meantime, the methotrexate was taking its sweet time leaving the system. He could not leave the hospital until all of it was out of his system and his kidneys could work on their own without the Lasix.

Finally, on day 14, the methotrexate cleared his system. Now, he needed to be monitored to see if his kidneys could be weaned off the Lasix and still work on their own. He was producing huge amounts of urine and his water weight was coming down. He was beginning to look at bit more like his usual self. On day 15 he was given his last dose of Lasix. The kidneys continue to do their job and the creatinine level was coming down nicely.

On our 16th and final day at the hospital he was given a renal function test over the course of four hours. Fortunately, this was done in the hospital room and he slept through most of it. Blood was drawn from his port over 30 minutes over the course of 4 hours while the kidney function was measured. Finally, he was de accessed from his port and we were sent home. Originally, we were supposed to come back for his round of cisplatain on Monday, but I talked the team into giving him a well-deserved week off. I cannot describe how happy we were to bring him home.

Two days ago, I received the results of the kidney study. There was acute damage. His kidneys are only working at about 50 percent to 60 percent. Of course, this was just the information I got off MyChart, and no doctors note to go with it. I contacted our nurse coordinator and asked if this damage was permanent and what did this mean for going forward with the methotrexate. I received a note back from her saying that due to the severity of the kidney damage and the mucositis, the team as hesitant to use methotrexate in the future, but she would give me a call in this morning. His doctor had chemo plans she wished to discuss with me on Thursday when we check in for the next and last round of cisplatain.

I would not wish these last 16 days on anyone. I want to thank all my friends and family who helped out, reached out and made this journey possible. My sister-in-law Cindy, but her steadfast guidance and understanding. My sister Mags and my niece Aya for feeding and loving on my animals. My dear friend Alexandra who drove me to and from my half marathon, took pictures, and cheered me on. For the nurses who gave Ravi so much of their love, care, and attention. And to everyone else who wore yellow, sent messages, prayers, and love, thank you!

Ravi went to school yesterday for the first time since February. He was all smiles. I plan on sending him again today and for a few days next week before we readmit to the hospital. His graduation date is June 13, and God willing, he will walk with his class. Due to covid, he did not have a formal graduation ceremony, so this is a really big deal to us. I hope to hear from our nurse coordinator today and then I will apprise every one of his upcoming treatments. Go # TeamRavi!

Good morning from Team Ravi! Everyone seems to know that a pink ribbon symbolizes breast cancer. So, what color symbolizes osteosarcoma? Well, Google is our friend. The color for bone cancer is yellow. I think this is fitting because this reminds me of sunshine, and Ravi is my ray of sunshine. I ordered a bunch of yellow wristbands that say No One Fights Alone, in honor of Ravi. Actually, I have put in 2 orders, as so many people said they wanted one and wanted to be part of Team Ravi. The wristbands are being shipped now and hopefully will be here next week. If you would like one, please let me know.

We have had a lovely few days. It was warm enough for a walk yesterday and we went out for a stroll around the neighborhood. Ravi was so happy to be outdoors! It is supposed to be warm this weekend and I am hoping I can get him out on his adaptive bike. We check back in for chemo on Monday, but right now are just enjoying our time at home. We wish you a blessed Easter, Passover, or whatever it is you might celebrate. Be good humans and we will talk soon. Go Team Ravi!

Hi from Ravi! We are on week 2 of our second week at home. He had labs today and they looked pretty good. Okay, for a normal kid they would look terrible, but for a chemo kid they look okay! To our surprise, Nurse Jill told us she did not expect anything to dip in the next two days and we do not have to come in for labs this Thursday. We are free as birds until Monday morning, when we check into the hospital for labs and then methotrexate. He will receive his infusion on Monday, but it usually takes 4 or 5 days for all the toxins to leave the system, so he will probably come home on Friday night or Saturday morning. The following week is another round of methotrexate, followed the next week by Cisplatin and what is familiarly called, “Red Devil”. That should be the last time he has Cisplatin. By the end of May, we should be down to just 2 chemo drugs.

I was happy to see that Ravi had put on a few pounds in the last week. He is still gaunt but looking better. He also has more energy. This is probably because he has not had chemo in a week, and the calories give him more energy. School is on spring break this week, so there is no hope of getting to school during this respite. We may venture out for some walks this week. A freak April 1 snowstorm blanketed us with 8 inches on snow over the weekend, and then promptly melted. Ice has cleared off the sidewalks, so I think it is safe to go for walk. If he is feeling super energetic this weekend, we can bring out his adaptive bike.

Not a whole lot to report just now, which is fine with us. We like the peace and quiet of home. We have added a kitty to our menagerie and Nikki is fitting in just fine. He delights Ravi with his antics, but also loves to cuddle up and purr. Keep in touch and we will keep you posted. Be good humans and go Team Ravi!

Robert and I have absolutely no regrets about getting Ravi the G tube. After his last round of chemo, he did not have mouth sores (hooray!) but still was not able to eat all of his meals. He needs to be getting at least 2,000 calories a day plus 2 liters of water, to wash out all the chemo. That is a lot of fluid to drink! Enter the G tube. Right now he is eating about 2 meals and 2 snacks a day. He is eating a wide variety of food and often seems to crave salt. Not surprising, considering how much fluid he is taking in. This is where Osmolite enters the scene. It is an adult formula that can go right through his tube. One serving of formula is 355 calories and it is easily digestible. Each tube feeding, when hooked up to the pump, takes about 45 minutes. Ravi does not mind his feedings at all, as he knows they make him feel better. When you ask him, “Who wants a feed?” He answers with a big smile. Yesterday, he had 4 tube feeds plus 2 meals (Carbonne’s pizza!) lot of Gatorade (both by mouth and by tube), some snacks, and was in a wonderful mood. His color is better, he has more energy, and does not seem to be experiencing any nausea. We will count this as a win!

We do not have chemo for 2 weeks. Now that we are into a “normal” schedule without medical emergencies every few days, he usually has chemo (1 or 2 infusions a week) for 3 weeks and then is off for 2 weeks, just checking in for labs twice a week. We go in for labs later today. I am curious to see what his levels are and if he has gained any weight. Every week he has been slowly going up a pound or two. He is still dramatically underweight but is heading in the right direction. What puzzles me is his hair. After the first round of chemo his hair mostly fell out and we shaved the rest of it. I looked at him the other day and realized that his hair is growing back in. He looks like he has a 5 o’clock shadow all over his head! This surprised me as I did not expect any hair to grow back until the completion of chemo. He also has the faintest hint of a moustache. A quick google search told me that sometimes hair can grow back during chemo. The search did not tell me if the hair stays. My dear sister-in-law, Cindy, wondered if “the hair follicles were shocked into dropping the existing hair, but aren’t suppressed enough to prevent new growth.” She may be right. I also wonder if the added nutrients are helping. When people are dramatically underweight, they can experience hair loss. When nutrition is re added, the hair grows back.

So, we are in cycle 3 or 6 cycles on chemo. We are almost halfway through. Spring is slowly coming and with it, new hope. It is hard to hopeful about cancer, or anything else, in the depths of winter. With the help of the g tube, despite the chemo being pumped into him on a regular basis, Ravi is surviving. He is still low energy, but his smile is back, and he happily likes to chat with people via Sam. Last week, something adorable happened. At home, he has a poster of the MN Women’s hockey team on his wall. Last Thursday, the women’s hockey team visited the oncology ward. The same 4 girls that are on his poster showed up in his room! The look on his face was priceless. It was like seeing one’s hero come to life. He gave them a huge smile, then got bashful and dove under the covers and would not come out. They cooed and laughed with him, dropped off some cookies to decorate and went on to the next room. It definitely made his day. So, to the Gopher Women’s hockey team, best wishes in the Frozen Final Four. We are cheering you on.

It is 4:00 am, because my muse does not keep regular 9 to 5 hours. I have a new kitten playing at my feet. His name is Fred, and he is mostly nocturnal, so he is happy for the company. The hedgehogs are also up. The dogs are crashed out at my feet, wondering why I don’t just go back to bed. Thank you all so much for your love and prayers. Keep them coming please! They are working. Be good humans and we will chat soon.

It is 5:45 am and Ravi is up and grinning like a madman. Actually, he never really went to sleep last night. He seems to have gotten his days and nights flipped, which in a hospital, is easy to do. He slept relatively well two nights ago but was up and ready to go at 4am. He stayed up until about 10 am and then crashed for a few hours in a deep sleep. Midafternoon on Sunday he woke up and has been up ever since. He is not in any apparent distress. He is not hungry, per se. He is very smiley and interactive, which is a joy to see. He is just…up. At a little after 5am I gave up on the idea of sleep, got his and my shoes on, and with the help of a night assistant, we went out for a tour of the ward. He was happy to see all his friends at the nursing station. They all joked and said that he had become a night nurse. Back in our room turned down food and his beloved Sam. Right now, I am typing this, and he is grinning at Amy, the night assistant. I have no idea when he is going to crash. I deeply hope that this lack of sleep does not cause a seizure. If we can wean him off his small dose of morphine today, he might be able to go home tonight.

Ordinarily, I would be grumpy at having had no sleep at all. I am not grumpy. I am overjoyed. Ravi is back! He is smiling and stimming and being his usually Boo-like self. Using Sam, he told me he was happy and excited. These are all very good things. It has been weeks since I have seen him smile or heard him laugh. I will stay up all night for those things.

So, count your blessings. Pass the coffee! Boo is up and all is good with the world. Peace out and be good humans.

Life has been rough for Ravi the last week. We checked into the hospital early Tuesday morning. It became rapidly apparent that he was in no shape to receive chemo. Despite begin fed and hydrated through his g tube, he had lost 5 pounds in 3 days. His mucositis was out of control and he was in extreme pain. In the clinic he was given a bolus of fluid and a shot of morphine. When he was stable, we moved into a room on the fifth floor, oncology. Thus began a few days of fever, pain, and the extreme inability to eat or drink by mouth. Cultures were drawn and sent to the lab, but no one could explain the 103 F fevers. No one could explain the seizure like movements in his face and eyes. He was put on fluids, feeds every 4 hours around the clock, a morphine drip, Ativan, and Tylenol for breakthrough pain. Most of yesterday he slept deeply, wrapped in blankets like a giant butterfly in a cocoon. When he is asleep his resting heart rate is around 50 beats per minute. Yesterday, it hovered around 100. His temperature fluttered between 99.5 and 102.5. He moaned a lot in his sleep. I felt absolutely powerless. The doctors assured me that they were not going to give him chemo during this admission. He was here to heal from the raging mucositis and gain weight. The hours dragged by. The only relief I had was practicing Bach on the electric piano in our room and getting on the treadmill once a day for a run. The rest of the time, my focus was solely on Ravi.

I went to bed around 11pm last night. Suddenly, at midnight, Ravi sat bolt upright, bright eyed, and started looking around. I handed him his beloved Sam and he chattered happily. He requested a trip to the bathroom and had a few sips of Gatorade by mouth. I did not sleep last night, and I am happy. He was up all night, happily chatting with Sam or watching videos on the iPad. His fever and pulse were down. His eyes were clear and bright. His lips were looking a bit less painful. He has gained back a tiny bit of weight. He is still very shaky on his feet and a walk across the room tires him out.

Currently, it is 6:30 am. Sun is not up yet, but Ravi is! Mercury got home from OSU last night and we will see her today. The pets are rejoicing, except perhaps for the hedgehogs, who are really in it for the bugs. I don’t know when we will be discharged. I don’t know when Ravi will receive his next dose of chemo. He has a lot of ground to make up. But he is happy and smiling, and that is enough for me. Thank you all for your texts, your emails, your prayers and Healing Touch from afar. Ravi has felt your love and is responding.

Oh, my poor neglected blog! I have so many thoughts, and so little time to put them into words. Ravi and I are about to check back into Masonic Children’s Hospital for the next 2 days for 2 rounds of chemo. If all goes well, he will be discharged on Thursday and can stay home for 2 weeks, except going in for labs. Mercury is coming home from OSU for spring break on Friday and I am so excited to see them.

Since we last chatted, Ravi is now the owner of a g-tube. He was unable to stay hydrated or nourished simply by eating by mouth. 10 days ago, he had surgery and had the g tube placed. From the outside, it just looks like a little button on his abdomen. It is attached to a tube that goes directly into this stomach. Through this tube I can give him, meds, hydration, and high calorie formula. He has not really gained any weight, but he has not lost any weight, either so I will call this a win.

Through all of this hardship, Ravi has been an absolute trooper. He does not feel well a lot of the time, he has very little energy, but he is still smiling. He still loves to chat with Sam, watch PBS kids on his iPad, or listen to music. In the hospital, he loves music therapy and PT. We have visits from Inka, the therapy dog, and the lovely practitioners from Healing Touch. Music therapy put an electric piano in our room, so I can still practice my beloved Bach. Ravi seems to relax when I practice piano, as my music has been the soundtrack to his days almost all of his life. Music is good therapy for both of us.

Thank you to all for your prayers. good vibes, visits, presents of silly hats and socks, and for just being you. You have carried us through some dark times. Be good humans and we will chat again soon.

To our great delight, Ravi was discharged from Masonic Children’s Hospital this afternoon. He came through the last two infusions very well. He seemed a bit surprised to be leaving the hospital after 11 days, but as we started to drive home, his smile and his eyes got bigger and bigger.

Just last week, his beloved Taco Bell reopened after being remodeled. We stopped by the get him a Freezie and a snack. I was not certain what he would be able to eat after chemotherapy, but I was willing to give it a try. I handed him his Freezie and he grabbed it from my hand and began slurping so hard he promptly got brain freeze. He withdrew the straw from his lips, gave me a brilliant smile, and dove back in for more.

Upon arriving home, he made a beeline for the bag. In short order he devoured a chicken quesadilla, a burrito supreme, the rest of his Freezie, and mine as well. I was pleasantly stunned. After his last round of chemo he had not been able to eat for 36 hours, which ended up getting him readmitted for nutrition. This time, I knew better what anti-nausea meds helped him, and was able to advocate that he receive these meds. A few hours after we got home, I gave him another dose of anti-nausea medicine, and he seems to be having no problems. I am ecstatic. If I can stay on top of his nausea, I can get him to eat and stay hydrated, then he will feel much better.

One of the reasons he was in the hospital so long was he developed an infection in his port. Fortunately, the infection did not spread to his heart. We were very lucky. He had an operation to remove the port and had a pic line put in his left arm. He is receiving IV antibiotics every 8 hours for the next 2 weeks. In order to get him out of the hospital, I had to be trained to administer the IV antibiotics. On a practice dummy, it is fairly straight forward. At 10 pm, I will find out if I can do this as easily on a live person! I am a bit nervous. He needs to get infusions in his IV line ever 8 hours, at 6am, 2pm and 10pm. Since infusions do not hurt, I should be able to sneak 2 of them into him while he is sleeping. When I infuse the 2pm dose, I will make certain to have distractions on hand. Wish me luck!

Robert and I are thrilled to have Ravi home and he is very happy, too. He is loving his new collection of hats and technical t shirts. Thank you to everyone who wrote, visited, dropped off food, sent care packages, or prayed. This means so much to all of us. You all are good humans. Peace, Harriet.

Ravi went into the hospital 10 days ago and we are fervently hoping and praying that he gets discharged tomorrow. He has had 2 more rounds of chemo, developed an infection in his port, and had surgery to take the port out and put in a pic line in his left arm. He is on IV antibiotics for the next 2 weeks. Yesterday, I learned how to administer IV antibiotics and the supplies should arrive at the house at about the same time that he does. Right now, Robert is at the hospital with him, and I am home with the pets. We have been tag teaming each other, as to who sleeps at home and who sleeps at the hospital. Normally, I stay at the hospital and come home for a bit during the day to visit the animals, do laundry, dishes, etc., and get a few minutes out from under. Currently, I have a happy hedgehog in my lap and three dogs and a cat at my feet. I am in my favorite chair and the sun is shining. Ravi should be about to finish up today’s round of chemo. The nurse gave him a shot of Ativan, so he mostly slept through the entire thing.

In order for Ravi to come home, he needs to eat something tonight and not spike a fever. We were so close to coming home last week, when he spiked a fever of 102 F and we realized we had a serious infection on our hands. Thanks be to the Creator who did not let us go home. Hopefully, tonight and tomorrow will go smoothly, and this time tomorrow he will be in his own home.

I am a bit nervous about administering the IV antibiotics, even though it seems pretty straightforward. As long as I keep everyting sterile and follow the correct procedures, we should be fine. Hopefully, he is home until February 20, when we do repeat scans to check on cell necrosis, and have another round of chemo. His body is pretty beat up at the moment and he needs time to rest and to heal. Thank you to everyone who has stopped by, dropped off food, or prayed. It is greatly appreciated. Hopefully, at this time tomorrow, I can tell you that our boy is home. Be good humans. Peace.