Author: snort262

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.

Hello, FOB! Nice to see you. In the last few weeks Boo/Ravi has grown in a full head of hair and very expressive eyebrows. I have to admit, I have a hard time keeping my hands off of his head, he is so furry! In other news, we wish his kidneys were doing as well as his hair. They are still acting up, as is some sort of fungal infection in his lungs, kidneys, and spleen. This was discovered during his last PET scan. The good news is that his mets are mostly stable, the bad news is that our boy is a walking infection. No wonder he feels so crummy. His weight has tanked, he is refusing to eat or drink anything, and thank the goddess for IV saline infusions and his g tube. He was supposed to start his next cycle of chemo on Monday but did not due to poor kidney function and being drastically underweight. Instead, he got a liter of saline and was sent home. We went back into Journey Clinic yesterday and his kidney function was still poor, so more fluids were needed. We are coming back in again today and Saturday for more of the same. He is being a very good sport about all of this, but it is taking a heavy toll.

In the race to obliterate cancer cells, doctors often forget that they are dealing with a sentient being, a being that can get scared and anxious. Ravi has been so incredibly brave the last 11 months, but he has had about enough. I struggle with depression and anxiety and know the signs. I began pushing his team to bring on board some Zoloft and some Buspar. We began that yesterday. The Zoloft will take about 6 weeks to really kick in, but for me, Buspar was a game changer. It is not a benzo, it does not dope me out, it kicks in immediately, and allows me to function. I am hoping it has the same superpowers for Boo.

Everyone needs a life outside of cancer. Boo graduated from school last June but has yet to come to the top of the waiting list for Midwest Social Services, the day program we want him to attend. For a while, he was so sick, no of us were even thinking about a life outside the hospital. But Boo wants that life. He misses his friends. His awesome former teacher, Rosalind, suggested St Paul adaptive recreation and also Highland Friendship Group. Both look like great ways for Boo to be out in the community, engaging in the things that he loves, like bowling and music. Today, after his saline infusion we are going to Como Zoo. I don’t know if he has the strength to walk around the zoo, but we can rent a wheelchair. Saturday, we are going bowling. He has been telling me that he wants to bowl, so we will make it happen. Hopefully, we will be able to get him out of the car. He wants badly to go do fun things, but when we arrive the anxiety takes over and he is afraid to leave the car. We tried to take him to Culvers the other night, but he refused to leave the car. We drove around for a while, which he liked, and ended up at MOA, where he used to love to go walking. He still refused to get out of the car. So, we drove around some more and he seemed happy. Interestingly, the one place he does not refuse to leave the car is at the hospital. I am grateful for that. I took him to clinic by myself yesterday and had he refused to leave the car, I would have been stuck. As it was, there was not a problem. Boo saved the day!

So, where are we now? Today and tomorrow, we go into clinic for labs and fluids. If his kidneys are stable, he can have an infusion of chemo on Monday. This will be given outpatient. On Friday, he has PT to learn to reuse his left arm. On the following Monday, he will have chemo again. Then, hopefully, we can enjoy thanksgiving together. By then, he should be done taking the micro fungal medicine which is making him feel so icky.

We wish you all a happy Thanksgiving, or whatever it is you chose to celebrate. We are hoping for a quiet day at home. Thank you for the thoughts, prayers, good energies, socks, hats, and stuffed animals. They are deeply appreciated. Be good humans and we will be in touch.

Well, maybe. Definitely some peach fuzz. Ravi has eyebrows and eyelashes now, the beginnings of a moustache, some peach fuzz on his head, and a lot more energy. He is greatly enjoying being home and only going to the clinic once a week. We are in a holding pattern right now. He does not have a PET scan for another 10 days. We meet with his oncologist tomorrow to discuss next steps. The plan, as I understand it, is to switch to a different type of chemo that is less hard on his kidneys. He had his GFR last week which measure kidney function. The last cycle of chemo definitely hurt the kidneys. We are hopeful that they will recover, but that is the last time we will be treating the osteosarcoma with Ifosfamide.

The next step in the journey, after the PET scan, is two different types of chemo. One is given on day one. Both are given on day eight. The third week is a week off. Each cycle is 21 days. The team is hoping to do 6 cycles, or until the cancer is gone. The great news is that this type of chemo can be done outpatient! This makes me happy, and I know it will help Ravi. He has become very scared and anxious about leaving the house, even if it is to go to fun places. He is afraid he will end up in the hospital again for another month. I can’t blame him. I am afraid of that, too. Dr. Greengard is also having conversations with the thoracic surgeon at Mayo about a good time to get rid of the the mets in his lungs. Honestly, this terrifies me, but it needs to be done. I take comfort in knowing that she is one of the very few surgeons in the world who can do this type of surgery. I believe she will be an important part of Ravi’s cure.

So, where are we now? At home, and slowly recovering. Ravi is slowly gaining weight, strength, and hair. He is smiling and laughing more. He went to a party last weekend and had a good time. He is looking forward to a friend coming over today with his guitar. We are enjoying brisk fall days and cuddling with our animals. We thank you all for your love and support. I will touch base after our team meeting on Monday. Keep us in your prayers and good energies. Be good humans. Peace.

Well, maybe a new normal. Ravi has been home from the hospital for 5 days. He has spent a lot of that time sleeping. In a way, it is very much like bringing home a newborn. He sleeps a lot more than the average newborn, or at least sleeps in longer spurts, but we spend a lot of time keeping track of how much he eats, drinks, sleeps, poops, etc., well, you get the idea. He is on a stunning number of medicines. He was dramatically underweight when we discharged, and his stomach was not so sure it wanted to handle food. He had been on TPN for days, and then really slow feeds of his G tube, trying to convince his guts to work again, without putting him through excruciating pain. The first few days at home he took in nothing except G tube feeds, Gatorade, and the occasional cracker. Yesterday gave us some hope. He ate a taco for lunch and then used his AAC to request a burger and fries from Culvers. Over the course of the evening, he ate the whole thing, plus a few tentative tastes of Robert’s milkshake.

Today we checked back into the Journey Clinic. His labs look fairly decent, even though his hematocrit is low. He has been very nervous about going anywhere in the car. I think he is afraid he will end up back in the hospital. I promised him that we were just checking in at the clinic, drawing some labs, and then would go to Taco Bell. At the drive through, I ordered all of his favorite things. I got him a Strawberry Freeze, Nacho fries, and three soft beef tacos. In the car he dove into the fries and Freezie with gusto. Over the course of this evening, he has been slowly whittling away at the rest of his plunder. Just being out and about is very tiring for him. He is now happily lounging on his bed, chatting with Sam, his AAC. He was able to walk to the car and back, but we used a wheelchair the rest of the time at the hospital. We were happy to see he had gained 2 pounds, but he is still very fragile. On Wednesday he will be sedated to remove his port and his central line. A new port will be put in to replace the one which got infected. This will be his third port, and we hope that this one lasts a bit longer than the previous two.

Monday we are meeting with Dr. G, his oncologist to discuss next steps in his treatment. I am interested in what she has to say, but do not want to make any decisions until he has had another PET scan and we have had a chance to discuss the results. I want to see if these last two cycles of chemo have done any damage to the mets. I am leery about doing another cycle of Ifosfamide, as it can cause seizures in neurotypical kids, and has already caused Ravi to have had two clonic tonic seizures. The chemo itself is probably not responsible for his month in the hospital, but it did deplete his white cells enough so that he was open to all sort of opportunistic infections. He had an infection in his port, he had pneumonia, he tested positive for C diff, he was on at least 5 different antibiotics and his guts pretty much shut down. In good conscience, I can’t ask him to go through this again. He would not understand. It was a miserable month.

Right now, I am choosing to live in limbo. I honestly don’t want to think about next steps. I want to give Ravi time at home to gain back his strength and weight and his sense of humor. I want to do fun things with him and take him places in the car that are somewhere other than the hospital. I want him to have enough strength to walk around the block with me and look at the changing leaves. I want to take him to Target and Como Zoo. I want Robert to sing to him and make him laugh. I don’t want to think about more cycles of chemo or the surgery needed to remove the mets from his lungs. I just want some time for us all to rest.

Thank you to all who call, or pray, or send good energy. #TeamRavi is really tired right now and we need a lift. We are still fighting. We are not giving up. We just need a little time as a family to regroup. Be kind to others, you never know what your smile can do. Be a peacemaker. Be a light bearer. Be a good human, and we will be in touch.

Thirty days, that is how long Ravi was in the hospital. We checked in on September 11, when it was still 85 degrees outside, and the leaves were green and full on the trees. We checked out last night at 7pm, into a brisk fall evening. I had to run home and find him some warm clothes, as all the clothes we had checked into the hospital with were shorts and light weight T shirts.

Thirty days, but it felt like an eternity. Ravi was so, so ill. There were times we wondered if we would even be able to bring him home. There were days where he just lay in bed, wracked with fever, cramps, and nausea, his system trying both to shut down and to survive. In the end, with the help of God, some very talented doctors, and a lot of potent medicines, we brought him home last night. We were all so thankful to sleep in our own beds.

I woke up early this morning, grateful just to be in my own home, surrounded by those whom I love. A little while later I heard some rustling in Ravi’s room. I went in to have a peek. He greeted me with a beautiful, sunny smile. He knew where he was, and he was very happy to be there. He curled back under the covers and let out a happy sigh. I returned to my coffee. A few minutes later I heard his signature footsteps in the hallway. He came padding out to smile at me again. He looked gaunt in the dim light. I offered him a drink which he happily took, then retreated back to his lair. I wondered why he was up so early, then realized it was 5 am, when the nurses usually draw labs and vitals. What a way to wake up every day, with someone taking your blood! Ravi looked around for a bit, realized there were no nurses lurking in dark corners and happily padded back to bed. I can now hear him in his room, making happy snuffling noises.

Thank you to everyone for your love and support these last 30 days. It has been wild ride. We do not know what will come next, and right now I don’t even want to think about it. I just want to love on Ravi. Be good humans and we will be in touch. Peace, Harriet

Hello, friends. Today we had a wonderful visit from our rector, Joy, who brought us fellowship and communion. Ravi is deeply soothed by the sounds of voices and gentle laughter wafting over him. He slept through most of the visit, but his face was relaxed. Before she left, Joy anointed him with oil. We feel blessed by her presence and the presence of the Holy Spirit.

I wish I could say that Ravi immediately got better. His labs are starting to trend in the right direction, but he is still suffering from chills, fever, and nausea. Even sitting upright in the bed takes an effort. He is having a CT scan done on Thursday at 10:30 am. He was due for a scan anyway at this point in his chemo, but this is also to look for any underlying issues.

We have lost track of time. Though someone writes the day and date on the board every morning, it makes no sense to us. The days all drift together. One of us is always with Ravi, whether he is waking or sleeping. Most of today I have spent just holding his hand, letting him know that I am near.

I am out of words, so I will leave you with one of my favorite prayers from The Book of Common Prayer.

” Keep watch, dear Lord, with those who work, or watch, or weep this night, and give your angels charge over those who sleep. Tend the sick, Lord Christ; give rest to the weary, bless the dying, soothe the suffering, pity the afflicted, shield the joyous; and all for your love’s sake. Amen

Hi friends. We are still at the hospital. Ravi checked in September 11, for chemo, but things have gone downhill. He is not able to manage his electrolytes and he has needed several emergency transfusions of platelets and red blood cells. The fevers keep coming and going. Today, we are trying a different antibiotic. Right now, he is receiving two more units of blood. In short, he is miserable. The doctors and nurses on his team are doing everything possible to help him. This is a long haul and I do not know when we will be coming home.

I woke up at 5 this morning and had the urge to go walk on the hospital treadmill and pray. An hour passed very quickly. I felt calmer. Doctors came for rounds and were still puzzled. They ordered more units of blood and greater frequency of taking vitals.

What do we need right now? Friends, we need prayers and good energy. We need divine intervention. Ravi needs all the help he can get. If there is anyone who wants to go over to my house and love on my animals for a bit, that would be hugely helpful, too.

Thank you to everyone who has reached out in love. We can feel your presence. In faith, Harriet.

Hello from the oncology ward, floor 5 at Masonic Childrens Hospital. We are hanging out here a bit longer to get Ravi’s electrolytes under control. He had 4 days of chemo and did really well. Everything came crashing down on day 5. He needed two emergency blood transfusions and a lot of balancing of those tricky electrolytes. We were slated to go home on Sunday, but it was not to be. Today, the team is trying to wean him off IV fluids and see if he can handle taking everything by mouth or G Tube. We are so incredibly thankful for the G tube. It has been the only way to get fluids and nutrients into him. He did have a seizure about a week ago, but the doctors fiddled with the meds and now that seems to be under control. This is one big balancing act, or maybe an advanced chemistry equation.

This morning we had a great zoom session with Dr. Allen Rhodes at Mayo. She showed us his scans, walked us through what they meant and was very warm and pragmatic. I liked her immediately. She feels that we are pursuing the right course of action with the Ifosfamide and thinks that 6 cycles of it is reasonable if Ravi is able to tolerate it. We have just finished cycle 2, so one third of the way there. She said that the radiologist we are seeing wrote the definitive book on radiation and bony tumors. Radiation will occur, briefly, after chemo is complete, probably in December or January. There will probably only be one or two sessions of radiation. It was interesting looking at the Scans of his primary tumor. Osteosarcoma looks like an aggressive cauliflower. The primary tumor was about 17 cm long. We are SO very glad that is gone, with good margins. The tumor was about 60 % dead upon removal. The mets in his tibia and L3 are much smaller and show less activity. The mets in his lungs will be dealt with by surgery, radiation, and ablation. This can be done in between chemo cycles.

Thank you all so much for your prayers and good energy. I can see your prayers and energy in action by watching Ravi. Honestly, he is the bravest person I know. I am so proud to be his mom. We hope to go home tomorrow and sleep in our own beds. Every time I go home, the animals have much to tell me. They miss having their humans around. I miss their funny, furry little selves. Be good humans, and next time we touch base, we hope to be home. Peace, Harriet.