Author: snort262

Hello, all. We journeyed back to Rochester last week to meet Dr. R. She is one of the top thoracic and pulmonary surgeons in the world. Ravi had scans done of his chest which show he still has a number of lung nodules that have remained stable since his last scan in May. This doctor proposed a three-prong approach to getting rid of the nodules. She wants to use surgery, ablation, and radiation. The surgery will be minimally invasive and done robotically. Often, the patient can return home the next day. Ravi will have this done on both sides, with recovery time in between. This sounds so much better than what the local surgeon had proposed. He was only going to do surgery and thought that Ravi would need a week of recovery time in the hospital for each side. Going home the same day, or the day after sounds much less traumatic.

This week we have a round of chemo and will be in the hospital for 5 or 6 days. Ravi will be home for two weeks and then get one more round of chemo, and then hopefully, fingers crossed, be done with chemo. After he recovers from chemo we will have more scans done and plan for pulmonary surgery. We are also meeting with an oncologist at Mayo in September to see how she wants to proceed with the end of his treatments.

I was very impressed with Dr. R. She was competent and empathetic. She clearly had a plan worked out in her mind. She wants to preserve as much of Ravi’s lungs as possible. She said she was looking 15 or 20 years down the line. Osteosarcoma is an aggressive cancer, and her optimism really surprised me, but also gave us hope.

So, we will be at Children’s Hospital in Minneapolis all this week. Please wear yellow for #TeamRavi, and continue to send us your prayers and good energy. You have no idea how much this helps. Since he has not had chemo in a month, Ravi’s hair and eyebrows have grown back in. It is a small thing, but it makes me very happy. He had very expressive eyebrows and right now looks much more like his usual healthy self. The hair may fall out again with these two cycles of chemo, but at least we know that it can come back again. Ravi is not at all stuck on his hair. He just pulls on a favorite hat and calls it a day. Be well. Be good humans, and we will be in touch.

Hi friends! We went down to Mayo on July 26. The following day was a whirlwind of appointments and scans. At 5:30 Friday morning, July 28, we checked into the hospital at 5:30 am. To our surprise, Mayo is a very busy place that early. Ravi went into surgery at about 9am. Our hotel was right across the street, so we did not have to wait in the waiting room all day. We slept, paced, prayed and tried to remain composed. I think Robert did a better job of being composed than I did. The hospital sent us texts throughout the day to let us know how our warrior was doing. At 8pm, we got the much-anticipated call. We were to report to the recovery room. At 9pm we were allowed in to see Ravi. He was very sleepy, but showing nice movement with his left hand, fingers, and wrist. By 10 pm we were in a room. The surgeon reported that he had removed all of the cancer from the left humerus with good margins. Total surgery time was about 11 hours. We spent 4 more days at the hospital while Ravi got antibiotics and adjusted to life in a sling. The following Wednesday we were released to go home. Thank you to everyone who checked in with us, looked after our pets and brought over food. Much appreciated.

Yesterday we had an appointment at Journey Clinic. Ravi’s oncologist was very pleased with his progress. We have a consultation at Mayo next week to talk to the top thoracic surgeon. Ravi still has nodes in his lungs that need to be taken care of. We are not certain yet when this will happen. He checks in for 5 days of chemotherapy on Monday, August 21. Then he has 15 days off, and then another 5 days of more chemo. We are hopeful that these cycles of chemos will convince the other mets to leave and we will be done with chemo altogether. There may also be radiation in his future, but that is not decided yet.

So, where are we now? Basically, we are just delighted to be home. Ravi is weaning off the heavy painkillers and doing well. He enjoys going for short walks to build up his endurance. He is eating and sleeping well. In another week he can get rid of the sling. The splint will probably come off in early September when we have a follow up with his surgeon. The fact that his surgeon was able to salvage his arm is nothing short of a miracle. We are praying for more miracles. Ravi deserves all the miracles. Thank you all for your prayers and good energies. They are really helping. We will keep you posted. Be good humans and pat all the dogs. Harriet and Ravi.

Hello, friends! Lots going on with #TeamRavi. We had an excellent meeting with an orthopedic surgeon at the Mayo Clinic. Dr H believes he can remove the tumor from Ravi’s humerus and still salvage the arm. He may not be able to reach his hand over his head anymore and will lose a little finger dexterity on the left hand, but everything else should still work. This is so much better than the option offered to us by the first surgeon we talked to. When in doubt, ask for a second opinion, or a third! Surgery is scheduled for July 28 and Ravi will be in the hospital for 5 days. After the surgeon gives him the green light, Ravi will have two or three more rounds of a different type of chemo. This kind of chemo can be done at the same time as radiation. Somewhere in there, at Mayo or Children’s Hospital, Ravi will have the nodules removed from his lungs. This leaves the metastatic growths on L3 and his tibia which we hope to blast to kingdom comes with radiation.

This is a far cry from where we were a week ago, only talking about palliative care and quality of what life was left for Ravi. That was playing defense, trying to stave off the cancer to get a little more time. With the discovery of this surgeon, I feel we are now playing offense. We are not trying to just hold back the cancer; we are trying to end it. This is going to be a long tough road, but Ravi has, again and again, shown us his resilience and his fighting spirit.

Something the doctor said today stuck with me. She said I was a good medical sleuth for finding second opinions. I think this was a compliment, but it sat wrong. Honestly, that is her job. If one option does not work, find another one. I did not like the first surgeon or his ideas, so I found a better one. I think the lung surgeon at Children’s Hospital is competent, but the surgeon at Mayo is one of the best in the world and uses cutting edge technology. Is it audacious of me to ask one of the best surgeons around to operate on my son? Maybe, but that will not stop me. The worst she can do is say no, but she also may have better ideas. I am a mom. I am not a doctor. I am not a magician. It should not be my job to be a medical sleuth, yet here we are. If a doctor has reached the end of her skill set, rather than pointing a patient at palliative care, she should be reaching out to other doctors in her field for advice and ideas of where to go next. Rant over. But, from now on, if I don’t think the options given to me by one doctor are sound, I will go seeking another opinion.

So, where are we now? This is the quiet before the storm. We have no chemo during the month of August. We have a PET scan and an MRI. We have labs twice a week. We have many things to set up before we go to Rochester at the end of the month. Fortunately, Mayo is very good at streamlining all the appointments a patient needs into one or two days.

There was one other instance where I had to question a doctor. Since Ravi is 21, the surgeon was going to put him in an adult ward. I did not think this was a good idea. Ravi is always in the pediatric oncology ward when he is in the hospital. Though he is technically an adult, he has the needs of a younger child and thrives in the pediatric ward. Furthermore, the pediatric ward has fun things like music therapy, therapy dogs, PT, child life, etc. All of these things make the days go faster and make them more enjoyable. I pointed this out to one of the nurses I talked to at Mayo, and she said that she would request Ravi be put in a pediatric ward. Dr. Greengard, our oncologist, agreed with me and said that she would recommend this as well.

It has been a busy week, and a bit of a rollercoaster. But I feel we have a game plan that will put Ravi that much closer to recovery. Thank you again to all my friends who have prayed, sent good energy and vibes, asked about Ravi, or just showed up. You are much appreciated and much loved. We will be in touch. Be good humans. #TeamRavi.

Hi #TeamRavi. We are home from the hospital after two days of chemo and one day of intense fluids. We will not know how the kidneys are doing until the next GFR in two weeks, but Ravi’s labs look pretty good after this round of chemo. We are throwing all the prayers and good energy that we can at our boy. On Tuesday our wonderful priest, Joy, came and prayed with us for him. As he was asleep, she did not anoint him with oil (he needs to consent) but left if for me to do when he was awake and alert. A little while later a nurse stopped by to do some reiki. The next day a different nurse practitioner did Healing Touch on him. I took 45 minutes out for myself and got acupuncture. I have had it done before and it really helps anxiety and migraines. I felt much more relaxed last night from it.

This morning Ravi and I woke up early. He was chatting with Sam and I was praying for him and another child I know who has cancer. I asked Ravi if it would be okay if I laid hands on him and anointed him with oil. He was agreeable, so I did. Words cannot describe that experience. Immediately after that my phone rang. It was the orthopedic department at Mayo Clinic. Would we like to come in for a consultation tomorrow? Dr. Housek had read Ravi’s records and agreed to see him. I immediately agreed, though I was terrified. We had already had one surgery consultation and it was traumatic to say the least. The only thing the surgeon offered to do was remove Ravi’s left shoulder and arm. We gave that a hard no, even though we knew it greatly diminished his chances of full recovery. After I hung up, I look up the bio on Dr. H. His interests are in osteosarcoma of the upper extremities and limb salvaging. That seemed to check all the boxes for me. Basically, I just want another pair of eyes to look at him, to see him, not just as a tumor or a cancer patient, but as a complex and intuitive young man. To be honest, right now I am terrified. Before seeing the other surgeon, amputation had never entered my mind. This particular surgeon lacked any kind of bedside manner and thoroughly traumatized all of us. I do not know if this surgeon is any different, but I am willing to go where the hand of God leads me. God has a purpose for Ravi. Ravi is very much invested in being alive. As long as that zest for life continues, I will fight for him.

Currently, Ravi is snoozing in his own bed. I am in my favorite chair with the animals scattered around me. The house is quiet. There are no beeping machines or crying babies. There is no one on the intercom calling for help with a code 21. It is peaceful. I am grateful. I do not know what tomorrow will bring. I do not know what July will bring. Ravi does not have any chemo scheduled for July, but lots of tests, labs and scans. Thank you so much to everyone who has prayed, sent good energy, mowed my lawn, walked my dogs, sent over food. I am so grateful to have you on our team. More details as I have them. Be good humans.

This was not as early a morning as yesterday. We did not have to be at the hospital until 9:30. I think both Robert and I were really nervous because our visit with the surgeon was such an emotionally draining disaster. The radiation team was warm, welcoming and pragmatic. We talked about palliative radiation and the risks and benefits. It sounds like a decent option. On our return home I got a call from Mayo who is setting up a meeting with their oncologist just to give us a second opinion on care for Ravi. I figure it always helps to have another pair of eyes on the case, though I am very happy with our care at Fairview.

Though Ravi’s kidneys are not back to full strength it sounds like he will have chemotherapy next week, in the hospital over the span of two days. I am grateful for the opportunity to take another whack at the cancer. I am hoping this is a short hospital stay, unlike our last one of `17 days.

Ravi’s resiliency through all of this is amazing. He is still his sunny, happy self. He seems a bit more reflective these days, but his smile is beautiful. We crave your thoughts, best wishes, energies and prayers. We will stay in touch. Be good humans.

Hi all. We were at the hospital bright and early this morning to do a GFR test on Ravi’s kidneys. Basically, the nurse puts a tracer in his bloodstream and then does blood draws over a 4 hour period. So, first we went to get the port accessed and the tracer put in. Then we trotted across the hall for an echocardiogram. Ravi thought it was a rather goopy experience but tolerated it just fine. After that we needed a snack, as we had left the house at 7:30 am. We got Ravi treats, me coffee and Robert a hot chocolate. Then, we spent a lot of time hanging out waiting for more blood draws. We went upstairs to the Journey Clinic to get labs. We waited some more. Periodically, a nurse would show up and draw more blood for the GFR. Robert curled up and went to sleep. Ravi, Sam, and I chatted. Labs came back and looked slightly better than last week, and Ravi did not need an infusion. More blood was drawn. Jill, the head nurse popped in to tell us that the echocardiogram looked normal and not to worry about it. At 12:30, the last vial of blood was drawn and we were free to leave.

At home, we had lunch and I went out for a much-needed walk with a friend. Ravi curled up with his iPad and Robert read and did Suduko. When I got home I got the results of the GFR but not any doctor notes. The test showed mild improvement since May 3, but the kidneys are still impaired. I do not know if Ravi can receive chemo (Cisplatin) next week or not. We see the radiation oncologist for a consultation tomorrow. I really do not know what will happen next. We know that surgery is not an option. We are looking for a second opinion at Mayo, when we can get an appointment. Though Ravi is tired a good deal of the time, he is very happy and smiley. He had a wonderful 21st birthday party with all of his favorite people attending. We will keep moving forward. Keep the faith and be good humans.

On June 13th, Ravi graduated from Focus Beyond Transition School. Robert and I are extremely proud of him. The day before the graduation we were not certain if he would have enough energy to go through with it. The Friday before, he had an excellent day. He had enough energy to go to school and go on a canoe ride on Lake Nokomis. His teachers sent me pictures and described him as “jubilant”. The pictures radiate pure joy. I am so happy he had that experience. Ravi loves water and boats of any sort. The rest of the weekend was really low key. He had no energy at all. Our wonderful community came through for us and sent all sorts of wonderful thoughts, prayers and good vibes and he woke up with a smile on June 13th. He got to sit with one of his favorite aids at graduation and she helped him across the stage to get his diploma. Peter and Alissa were with us and took tons of lovely pictures so Robert and I could just soak in the day. We laughed and cried and smiled. After, there was a small reception in the courtyard where we had refreshments, took lots of pictures, and thanked his teachers who had guided him and nurtured him these last three years.

Next up on Ravi’s agenda is his 21st birthday, which is tomorrow, June 18th. We are having an open house from 2pm until we all run out of energy. I am asking everyone to bring a favorite food to share. I am putting together a batch of Ravi’s favorite foods. He is not interested in cake, but really likes things that are salty or savory. We will have deviled eggs, garlic bread, fruit, veggies, chips, dip and a variety of drinks. I have no idea what people will bring to share, it may be the weirdest potluck birthday party ever, but we will have fun!

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!