Author: snort262

Hello, friends. It has been a long week. Currently, it is nearly 3am on a Sunday morning and Mr. Boo is still going strong. We are not certain why he is still up. He is not hungry, he does not seem to be in any pain, he is not particularly agitated, he is just….. awake. Currently, he is watching PBS kids and stimming happily. I am drinking coffee and trying to keep my eyes open. I got a few hours of sleep earlier, and then tag teamed with Robert so he could get some shut eye.

So, where to start? As I told you in our last blog, the PET scan looked good and Dr. Greengard was pleased. She reached out to Dr. R at Mayo to see if she would do ablations on the nodules in Ravi’s lungs. We had a zoom conference with her on Tuesday morning. She was cautiously optimistic. She thought Ravi’s lungs looked better but wanted to have a CT scan done to have another look. She said she would order the scan and someone at Mayo would be in touch. Wednesday afternoon I got the call from Mayo. They wanted to see Ravi immediately. Could we be in Rochester for a 6:30 am scan the next day? The lady said that the next possible opening was not until April. I felt a quick push from the Almighty and agreed that we would be there on the following day. Basically, when Mayo calls, one comes. As a friend said, it is quality care, but not always convenient.

On Thursday, we got up at 4am. We were out of the house at 5am. We arrived in Rochester at 6:30. The check in process was easy and the lobby was not yet busy. We were quickly ushered into the back and Ravi was changed and given some Versed, to take the edge off. He seemed perfectly relaxed, but we never turn down Versed. I walked, he rolled, into the scan room, was given another light sedative, and was out for the count. I went and joined Robert in the waiting area. The lobby was busier now. A volunteer was giving people hand massages. She was working with the couple next to us, chatting softly, when the nurse came to find us. I was eager to follow the nurse, but I would have not said no to a massage. When we got into Recovery, Ravi was just starting to wake up. His team had not had to use much sedative, so he woke up much more quickly than usual. He was under a mound of blankets. I slipped Sam to him, and he promptly told he that he wanted a cheeseburger. No surprise. Poor kid had been up since 4am and had not eaten. As soon as humanly possible we got him dressed, up, and out. There is a Culver’s on the way out of town, so we stopped and got him a double butter burger with cheese and extra pickles and onions. He happily devoured it, and we got back in the car, heading for Minneapolis and the Journey Clinic. We left Rochester about 10:40 am and arrived at the clinic around noon. Robert parked the car while I checked Ravi in. Labs took a long time to come back. Ravi’s hemoglobin was at a 7, which meant he needed a blood transfusion. This surprised me. I can usually tell by looking at him if he needs fluids, platelets or blood. Today was different. His color looked good, and he had plenty of energy. We sat back to wait for the blood to come up from the blood bank while Ravi happily munched his way through a pile of snacks.

At some point I looked across the room and realized that my spouse was sound asleep. He is not a morning person and he had done all the driving. I knew we would be at the clinic for at least another 2 hours, so I suggested that he go home, let the dogs out and take a nap. He agreed that this was a good idea and shuffled out the door. Ravi’s transfusion came up from the blood bank and we settled in for the next 2 hours. The transfusion was uneventful. His blood pressure and temperature stayed exactly where they should and as long as he had Sam and snacks, he was perfectly content. Eventually, all the blood drained out of the bag and into my kid. His port was heparin locked and de accessed. I called Robert to come pick us up and we headed downstairs.

After a stop by Wendy’s for another double cheeseburger, we finally arrived home, around 6pm. We had been on the move since 4 that morning. Ravi’s friend Peter came over to say hi and I was in bed before 8pm. I slept for nearly 12 hours, and it was wonderful. Friday was just a lazy day, hanging around the house. I b0ught new running shoes, tested them out, and met some dear friends for dinner. Yesterday, I broke the shoes in some more with a 10-mile trail run. I had visions of an early bedtime with lots of sleep, but Ravi had other ideas.

We have not yet heard from Mayo about next plan of care. Dr. Greengard said that the CT scan looked good and, in her opinion, Ravi should be a good candidate for ablation. This would be more like doing a biopsy, than a traditional lung surgery. We do not know how long the recovery time is, but are hopeful that it is shorter than the recovery time from a more traditional approach to lung surgery.

So, here we are. It is nearly 3:30 in the morning and Ravi is still going strong. The dogs and cat finally went to sleep. I wish that Ravi would follow their example. Something tells me that I am not going to make it to early church in the morning. Thank you to everyone who reached out with encouragement during our long day. Thank you to Penny who came over to play with my pets and then organized my kitchen and pantry. You all are the best. I will update this blog as soon as we know what the next plans are for Mr. Boo. Until then, be good humans and we will be in touch.

Hello, friends. In the past week, Ravi has rediscovered his love of food! For the past year, he has primarily gotten his nutrients via a g- tube . He has never registered any complaint about this, in fact, was quite compliant about getting his feeds. This all ended last weekend. I hooked him up to his pump and he curled up on the bed with Sam and a favorite blanket. Suddenly, he sat up, unhooked the tube (causing formula to cascade all over the bed) and headed for the kitchen. I turned up the pump and followed him. He made a beeline for the refrigerator and began pulling out food and eating with gusto. We were more than bit amazed, but very happy . In the past week he has let us know exactly what he wants to eat and this includes: lots of yogurt and ice cream, meats of all sorts, cheeses, candy, and Gatorade. Last night he discovered that he likes gyros. Robert and I are ecstatic. Ravi’s color looks good, he is slowly gaining weight, and he has more energy. Chemo still really hits him hard, but he is able to work through it, with some long naps thrown in for good measure. I am totally in awe of cancer patients who are able to work during treatment. I don’t know how you do it, but my hat is off to you. Chemo is a harsh mistress.

So, what is next? Right now, knock on wood, we are in a period of calm. This is the first time in 14 months that we have not been in acute crisis. Ravi just finished cycle 3 or either 6 or 8 cycles of chemo. He has a PET scan scheduled for February 15. This is always a source of great anxiety for us, as one never knows what a scan will show, but we are trying to live in the minute, and right now these minutes are filled with joy.

Ravi is especially happy because he is now getting OT, PT, and SLP. He had his first speech session a few days ago and really liked the speech therapist. We set some goals for him, and we all chatted for a bit. I have a good feeling about that. Clearly, she was on his wavelength. Ravi was so happy after that appointment. We are looking forward to his next session. 

We are tentatively making plans for Ravi’s wish trip. In late spring or early summer, we hope to take a train back east, visit my cousin Paul in CT, and take some day trips to the ocean. We are very excited for Ravi to see the ocean and hopefully dabble his toes in the water. 

So, for now, we are in a good place. I hope I don’t jinx it by talking about it. Ravi is happy. We are at home. He is eating and thriving. We are keeping Subway, Taco Bell and the Greek take out place in business. Be good humans and we will be in touch. Peace, Harriet.

Suddenly, we are three weeks into January. How did this happen? One day at a time, I guess. Ravi has been doing well. He had a week in the hospital in early January due to an infection but is now home and thriving. He is enjoying both PT and OT. The OT assessment was eye opening for me. I thought that he had lost a lot of his activity of daily living skills and had gradually taken them over for him after his surgery. It turns out that these skills were not gone, just lying dormant. To my surprise, Ravi is perfectly capable of taking on and off his socks and shoes, washing, soaping, rinsing, and drying his hands, working with putty, and picking small beads up out of putty with his left hand and fingers. It seems he was just waiting for someone to remind him that he still has these skills and was waiting for a prompt or some encouragement. The OT, Katie, was wonderful, and thought that he only needed to come in once a week for about 3 months and he would be all caught up. Ravi seemed very proud of his accomplishments. He continues to love and be frustrated by PT but is always happy when handed a basketball. Next week he begins speech. He is making meaningful communication with his AAC, Sam, and I am eager to see what he can do with extra guidance. 

January is my birth month and I wanted to do something special for our cancer community. St. Baldrick’s is a 501 C3 that raises money for pediatric cancer research. In lieu of presents, I asked friends and families to donate to them, setting a goal to raise $500. I have no background in fundraising at all, so this was done on a wing and prayer. I posted a recent picture of Ravi on social media and a brief description about why we were raising money. To my absolute delight Ravi’s followers came through for him. In less than a week we raised over $500. Friends, thank you so much. We are ecstatic and humbled. You are helping us put cancer research in the front seat and cancer cells in the rear-view mirror. 

Currently, we are in cycle 3 of either 6 or 8 cycles of chemo. Ravi is tolerating it well. It makes him tired and has him craving all sorts of interesting foods, but he is powering through. A nap now and then never hurts. His schedule is packed. He is now being followed by wound care and Infectious Disease. In addition to chemo and labs, he also has PT, OT, and SLP. This means many hours at the hospital, but we sleep in our own beds at night. The PT, OT and SLP gives him something fun and challenging to look forward to, as well as boosting his skills. Shout out to my ever-patient spouse, Robert, for keeping track of the copious amounts of medications Ravi has to take. At last count, I think he is on 9 different medications, taken at various times throughout the day. When he is not cutting up, grinding, or measuring medications, Robert is often found driving Ravi to his many appointments. It takes two of us to get Ravi to the hospital, get him to his appointments on time, and find a parking place. As the nurses are fond of saying, “Teamwork is dream work”, and I could not do this journey alone. Robert, my love, thank you.

It is 5:12 am. I have no idea why I am up. My muse strikes at unusual times. On the other hand, I cherish the quiet early morning hours, when it is just me, my pets, coffee, and my thoughts. Friends, thank you again for your prayers, good energy, food, love, and financial contributions to St. Baldrick’s. We are humbled and grateful. It is good to know that we are not on this journey alone. Be good humans and we will be in touch. Peace, Harriet.

#TeamRavi is back! We just spent 8 days inpatient and are very happy to be home. Two Fridays ago we checked into Journey Clinic for a routine check up. Vitals were good but Ravi’s white blood cell count was very high, indicating an infection. Also, the wound on his shoulder was not healing. On the counsel of our wise nurse, we checked into the hospital. Unlike other hospitalizations , this one was not fraught with panic or sheer terror . This was just a maintenance visit to get an infection under control. No chemo was given so Ravi felt pretty good. He was on 8 days of IV antibiotics and had wound care following him, but he did not feel sick at all. While we were in the hospital, Loaner Sam, his loaner AAC came from the company. Ravi had spent all of Christmas season mute, as Sam had sadly developed a problem with his charger. As soon as we got Loaner Sam I rushed the device to the hospital. Ravi was over the moon happy. He began talking and babbling immediately. After that, the visit was easy. He had Sam, he had his iPad, he had lots of nice nurses checking on him, and he felt good enough to do lots laps around floor 5. Friends and therapy dogs came to visit. For someone who was stuck in the hospital, he was being a very good sport about it. Robert and I flipflopped as to who would stay with him overnight and who would go home to take care of the animals. During the day all three of us were together at the hospital. Yesterday, I learned how to administer wound care and we were set free in the world, told we did not have to come back for at least two days. We were delighted. Ravi had other things in mind.

We arrived home on the coldest day of the year. I do not think it got above zero, yesterday. As I am writing this, it is minus 8F outside, but feels like minus 30. The high today is supposed to be an even zero. Even though I consider myself a hardy midwesterner, I think I will not run outside until the mercury rises above 10 F and the sun comes out. Once home, Ravi happy curled up on his bed and took a long nap with Robert. I did some laundry and caught up on some correspondence. We ordered in dinner but Ravi was still sleeping. Around 8pm I went in to check on him and hook up his G tube for another feed. Imagine my surprise when I saw that the G tube was no longer attached to his body! Ravi was not at all disturbed, but I was! I did a quick all to the resident oncologist on call. She laughed and asked if we hadn’t just left the hospital that afternoon? I sheepishly admitted that we had but were now in need of more assistance. She said that we would need to go the ER and she would call ahead.

Twenty-five minutes later found us at the ER. To our surprise and delight, there was parking right outside the door and virtually no wait. We were seen by a nurse immediately and by an ER doctor only a few minutes after that. The G tube hole had not had time to close, so it was just a matter of finding another G tube that would fit. This took a little while. Many G tube users are little kids and it took some looking around to find a larger one. A larger G tube was eventually tracked down in the OR, was inserted with no fuss whatsoever, and we were sent on our way. We made it home before midnight, tired and relieved. It took another 2 hours to get enough feeds and all of his meds into Ravi. Before the last feed ended, he had fallen into a deep sleep. It was a busy day!

I am not certain what the next week will bring. Hopefully, we can just stay home today, stay warm and cuddle our pets. Monday, we check into the Journey Clinic. I do not know if he will receive chemo or not. Tuesday, he has his beloved PT and then an appointment with neurology at a different hospital. Thursday, we are back Journey Clinic for labs and a check in.

So…. we are okay. Thank you for everyone who checked in on us, brought us food or let our dogs out for a respite in the back yard.  We were not planning on spending the last 8 days inpatient, but there you go. Ravi was well taken care of and this stay did not produce any trauma. He was well taken care of, as always, and did not feel acutely ill. So, stay warm. Cuddle your pets. Be good humans, and we will be in touch. Peace.

Today marks one year since Ravi began chemo. On December 26, 2022, he had a hearing test and an operation to put in his port. (It would turn out to be the first of three ports) On December 27 we checked into the hospital for him to get his first round of Cisplatin. We were discharged on December 29 and had no idea what the coming year would hold. I don’t remember much about those early cancer days. My impression was that it always seemed to be the middle of the night and we were very scared. Today, we were back at Journey Clinic, on the 9th floor, and the mood is totally different. It is broad daylight. We know and love all the nurses. Everything is familiar. We know where the comfy chairs are and how to get snacks. Nothing is scary. We were here yesterday for a round of chemo. Ravi’s red blood cell counts were low and so was his GFR, signaling that his kidneys were not happy. There was not enough time to give him chemo, type and cross his blood type, get the transfusion ready, and give him fluids. Briefly, it looked like we would have to go inpatient to get everything done. I really did not want to do this. Ravi was deeply traumatized by his month-long hospital stay last fall. Every time we go to Masonic Children’s I promise him we will come home that same day. I did not want to break that promise. Divine intervention happened when a different parent called in to cancel her child’s appointment for the 27th. Our nurse quickly grabbed that spot for Ravi. Whew! So, we spent about 6 hours at the clinic yesterday getting labs and then chemo. We came back today for more labs, a transfusion, and a liter of saline. Ravi was in great spirits for someone who had just had a round of chemo 24 hours before. He was happy to see all the nurses and was content to cuddle with me on the bed and watch his favorite PBS shows on his iPad. After about 4 hours he was pronounced stable, and we were sent home. For once, we got home before dark! 

Tomorrow we only have to be at the hospital for an hour, and that is for his beloved PT. He will get to build with big foam blocks, throw around a basketball, and ride the exercise bike. This is his idea of a very good time. Friday, we go back to Journey Clinic for labs and possibly more fluids. Then, fingers crossed, we are free until the following Wednesday. Freedom! What on earth will we do with ourselves? Ravi is plotting to overthrow the patriarchy.

So, here we are, a year later. Robert and I are a bit more wrinkled, grey, and sleep deprived. Ravi is taller and thinner with a collection of random scars and a smile that will melt your heart. His hair has fallen out again, but he is not one to worry about his looks. He just puts on a hat and goes about his business. #TeamRavi wishes you all the best in the coming year. Peace, be good humans, and we will be in touch.

Ravi is full of surprises. Yesterday, we went out to lunch with a dear friend. Midway through the meal, Ravi reached up to scratch his upper lip and half of his moustache fell off! For some reason, this struck us as very silly, and we had a good laugh. As we were finishing our meal Ravi had a tonic clonic seizure. He did this very quietly, tipping backwards in his seat. The three of us acted like a well-oiled machine. I slipped my hands under his head to prevent any trauma. Alissa grabbed his rescue meds from his bag. In one fluid motion, Robert tucked and rolled under the table to catch Ravi if he fell off the bench. Except for the one person who gave Robert a quizzical look, no one in the entire restaurant seemed aware of what had just happened. We gathered up our belongings, cleared the table, and with Ravi leaning heavily on us, got in the car. We dropped Alissa off and headed home. Once home, Ravi collapsed in bed and began snoring. We gave him formula, fluids and meds through his G tube and left him to sleep off the post-ictal period. I went to bed with the premonition that the next day could be rough.

Today, we had to be at the clinic early for fluids and labs. I was worried that the nurses would take one look at my emaciated, dehydrated son and admit him to the hospital. Amazingly, as we got to the clinic he perked up, not looking nearly as gaunt or haggard. To my surprise, his weight was up several kgs. I told the nurse about his cold, his seizure, his dehydration. She took blood for labs and said when the labs came back, they would decide about fluids. At this point, Ravi was happily perched on the bed watching videos and in no apparent distress. The nurse listened to his lungs but said that they sounded clear. A few minutes later the lab work came back. Both the nurse and I were amazed. His counts were either normal, or slightly below normal and trending in the right direction. 

The next two hours passed quickly. Ravi got a bolus of saline and a different medicine to help prevent pneumonia. He was happy and interactive the entire time. The only way one could tell he had just had chemo was that he was shedding hair profusely. This did not alarm him a bit. The nurse commented that the shedding might make his scalp itchy, so I made a mental note to shave his head when we got home. She and I had a great conversation about her work on the oncology floor and her patients. I am even more firmly convinced that oncology nurses are angels in disguise. They make everything about life with cancer better. I commented to her that a year ago, being at the clinic was so scary, and now it just felt so ordinary. I told her Ravi never minded coming to the hospital. She said that is the goal of the clinic. Though no one wants to have cancer, the nurses try to make life as ordinary as possible for their pediatric patients. During this conversation, Ravi alternated between watching a video and beaming at her. She beamed back at him and eventually, we made our way to the door.

Once home, I had only one wish, to get off my feet and have something to eat. Ravi had other plans. He refused to get out of the car. He liked being out of the house. I closed the garage door and went inside to find Robert. Robert had been at home all day and was looking for an excuse to go out, so he decided to take Ravi for a ride in the car. I headed for the couch and happily collapsed in a pile of snoozing animals. All concerned were happy. 

As I reflected on the day, I could not get over Ravi’s good mood. He woke up feeling post ictal and terrible, but he was still smiling. He was happy to see the nurses. Though he had his port accessed and was poked and prodded he took it all in good form. Miraculously, his labs and weight were stable. We did not have to be admitted to the hospital. This was the best Christmas present we could ask for. It is the simple things that bring joy. We get to be at home in our own beds tonight. Ravi is happy and smiling. We are not living in the sheer terror that we were a year ago. These are simple things for which my family is very greatly. May your holidays be full of simple things that bring you great joy. Peace.

Hello to Friends of Boo! We are now over a year into this strange journey called Osteosarcoma. Ravi is a year old, a bit more battle scarred, but still has the same beautiful smile and sunny outlook. Yesterday he began his second cycle of gemcitabine without much issue. The three of us have been passing around some sort of virus, and we debated giving him the chemo, but decided to forge ahead. We preceded the chemo with a liter of saline to keep his kidneys happy. Today, he seems a bit slow, but still greatly enjoyed going to PT. He got to work with a basketball, walk on uneven surfaces, and was encouraged to whack at things with his left hand. We followed this up by a treat at the upstairs coffee shop. He got gummi worms, I got a latte. Later, we swung by Taco Bell, so he thinks today is an okay kind of day. We are concerned about his weight, as it has dropped dramatically. Right now, we are meeting all of his dietary needs with formula through his G tube and offering him anything and everything else he wants to eat. We did have to have words with the dietician. Her answer to the weight loss was for us to have him hooked up to a feeding pump at least 12 hours a day. This was met with a hard no. He has to have a life, as well! We can’t run the feeds overnight, as he is savy enough to unhook himself and let the formula go wherever it likes. This particular dietician knows how to crank numbers but fails to realize that there is a person at the other end of the equation, and people and equations rarely fall neatly into synch. So, we do the best that we can.

We are not really celebrating Christmas this year. Ravi has a round of chemo on December 26, and we are at the clinic at least 3 days a week. We will celebrate when chemo is over, and he gets to see the Pacific Ocean. For now, we are just enjoying each other’s company and doing the best that we can. This winter will be busy. In addition to chemo and PT and all the accompanying labs and scans, Ravi will be doing outpatient OT starting January 8. In February, he will be getting speech language therapy. I am thrilled about both of these opportunities. He has not had OT or SLP since last year when he got sick and had to leave school. This will be so good for him, and I think he will really like it. The more we can keep him learning and engaged, the happier he is. We are still stunned by his willingness to go to the hospital so often, even after having been stuck there, inpatient for a month this fall. If nothing else, Ravi is a trooper.

We wish you all the best this holiday season. For some, this is a season of joy. For some, this is a season of pain. For me, it is more of a continued Advent, a season of waiting. But Advent is also hopeful season, as well as an introspective one. As I go through my day, I try to remind myself that I do not know what those around me are going through, and I try to be kind, even though the inner me tends towards being impatient. Everyone is carrying a burden of some kind. When in doubt, be a good human. Peace.

I had no idea that extra boluses of fluid would be such a game changer for Mr. Boo. His kidneys were still not happy last week, so we came into the clinic every day except Thanksgiving for him to get extra fluids. Over the course of the week, Robert and I watched him transform from a gaunt ghost who just wanted to lie on his bed so a kid who was getting up to rummage in the fridge, was happy to leave the house, and was much more responsive and expressive. It was a night and day difference that took place over the course of a few days. On Monday, he was deemed well enough for chemo. Tuesday, he was a little tired but still okay, and Wednesday he was showing a definite interest in food. When we went in for labs today I requested more fluids and asked if we could come back tomorrow as well. I don’t think that the nurses are used to a mom who begs for extra trips to the clinic, but they were gracious enough to consider my request. By the time Ravi’s labs were done, they are slowly looking better, the team had agreed that he could come in for more fluids tomorrow. I was delighted. So, tomorrow he gets fluids and then starts PT for his left arm. I am hoping he likes this. Saturday is Special Olympics day at Gopher Women’s basketball, so we are going to a game. Ravi loves to watch women’s basketball games. Next Monday is another round of chemo and I am pushing for more fluids following that. We were offered some time off around Christmas and I turned that down. I want to keep the fluids coming!

So, today is a good day. Ravi was able to walk to the clinic, rather than being pushed in a wheelchair. He is eating huge amounts of sour patch kids and anything else spicy or tart. He decided on Thanksgiving Day that ham is a very good food. We still have a long way to go on this journey, but things are looking up a bit. We get to sleep in our own beds at night. Ravi is feeling better. I have a little more help. Thank you all so much for your prayers and good energies. They mean so much. Be good humans and keep in touch. Peace, Harriet.

On the way to the clinic yesterday Ravi and I got a call we were not expecting. It was from Kelli, who runs Nick’s Wish. She was happy to tell us that Ravi had been chosen to have his wish granted. We were both floored and excited. Ravi has never seen the ocean. We want to take him to California and see the Pacific. Kelli said this was entirely possible. The wish granter will fly us to California, rent us a car, put us up in a hotel, and give us a stipend for 3 different activities of Ravi’s choice, then fly us home. Right now we know that we want to go to the beach, visit the San Diego zoo, and see the USS Midway. We will do some searching around to see what else one can do in San Diego. We are hoping to do this trip in March, as a celebration for Ravi finishing chemo.

The call was a much-needed lift in a rather difficult week. Ravi’s kidneys are struggling, and we are not sure just why. His creatinine level is much higher than it should be. We are going in for fluids every day this week except for Thanksgiving. Our day starts bright and early tomorrow. We have a kidney scan at 7:3o, then are meeting with a kidney specialist at 8am. We have labs and fluids at 11 am. Today things looked a bit better. His weight was up by one pound. Except for the creatinine, his labs and electrolytes looked good. Hopefully, the kidney doctor we see tomorrow can help us shed some light on this issue. He needs to have another CT scan to make certain that the micro fungal medication he is on has done its job. Usually, a CT scan involves the use of dye, which is hard for kidneys to excrete. So, we are holding off on the scan for a bit. We were supposed to have started chemo last week, and then this week, but could not risk it because of the kidney problems. Hopefully, with all the fluids we are pumping into him, we can resume chemo next week.

Right now, Ravi seems pretty perky. He is eating a bit but taking in most of his nutrition through the g tube. He is drinking a lot. He seems to be in a good mood and not in any obvious distress. We are looking forward to Thursday when we don’t have to go to the clinic and can just enjoy ourselves at home. For the last decade or more, Robert and I have thrown a LGBTQ friendly friendsgiving. This year, we just do not have the time or energy. So, we will just do a small celebration together after I run a 5km Turkey Trot. We hope that next year at this time we can host all of our friends again.

Have a wonderful Thanksgiving. Enjoy your food and your families and friends. Be good humans and we will be in touch. Peace.