Harriet's Hedgehogs and Autism Advocacy

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.

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.