Author: snort262

Hello, friends. Ravi just finished a grueling 10 days. Last week he began radiation therapy to the mets in his spine. Each session was about an hour long, every other day. We had to check in at the hospital at 5:30 am. Nurses would access his port and get vitals. The anesthesia team would swing around and talk to us. We would give consent for the procedure. The team would sedate Ravi and head into the radiology room. During this time, Robert and I would duck into the cafeteria for some breakfast and then return to the waiting room. We began to recognize other patients since we were all on a similar schedule. Ravi was the youngest patient there by decades. The most stunning side effect of radiation is the debilitating fatigue and loss of appetite. For the first time in months, we had to return to feeding him formula through his G tube, just to get enough calories in him. This is in addition to the 3 liters of fluid he is supposed to get daily to keep his kidneys happy. Ravi prevailed through all of this with strength and grace. Thank you all so much for the prayers and good vibes. They helped!

Next week we are going to a Reign in Sarcoma party in the park. It is a chance to meet and greet other survivors and have some fun. There will be rides, food, inflatables and more. We are looking forward to it. The rest of the week should be pretty chill. In early August we are going to fulfill Ravi’s wish. We are going to Duluth. While there we will go on a train and eat pizza, take a boat ride, and play on the beach. All of this and more is provided through an anonymous donor at Nik’s Wish. We are eternally thankful for this upcoming respite.

When we return from our trip, Ravi will begin a maintenance oral chemo. I have talked with another mom whose daughter has a very similar diagnosis to Ravi’s. She also went through radiation and has been on this drug for over a year. She has not suffered any ill effects from it. She has had 3 PET scans and all of them show that her disease is stable. This gives us hope for Ravi.

I have some big news coming up, but I don’t want to announce it just yet. It has to do with osteosarcoma research and distance running, two of my passions. I will fill everyone in on my next big endeavor in a few weeks.

The last two weeks have been brutal, and we are happy to put them in the rearview mirror. Thank you for all your thoughts and prayers. Be good humans and we will be in touch. Peace, Harriet.

Hello, FOB, or Friends of Boo! Ravi has a lot on his calendar. We spent part of July 4 in the ED as his gtube came out. He got a temporary tube to hold him through the weekend and a shiny new tube put in yesterday at clinic. Somehow, no one had told us that gtubes are supposed to be replaced every 3 months! This gtube had been in for nearly a year! Live and learn.

Yesterday was bittersweet. We said goodbye to our beloved oncologist, Dr. Emily Greengard. She has been Ravi’s head doctor since December 2022. She is kind, patient, empathetic, and in short, brilliant. Thought we know we are being left in good hands as she leaves for a new job in North Carolina, she will be deeply missed.

We are hoping for this to be a quiet week. Ravi has no more appointments, unless he needs extra fluids or labs. Next week he begins radiation treatment. This will begin on July 17. He will have a dose every other day for 10 days. The radiation itself should only take about 10 minutes. Most of the time will be spent either sedating him or waiting for him to wake up from the sedation. Fortunately, his treatments are early in the morning so he will not have to fast for very long. Fasting Boos are hangry Boos.

Once radiation is complete, he has about 10 days to rest and recover. Then, we are heading to Duluth to grant Ravi’s wish. He loves large bodies of water, beaches, boats, and trains. We are staying at a hotel with a pool and hot tub. He has been telling me for months that he wants to go swimming. We will be taking a pizza and train ride. Basically, this is a 2.5-hour scenic train ride where one admires the North Shore and eats pizza! We are also taking a boat tour around the harbor. We are so excited for Ravi to finally get his wish. Thank you so much to Kathy of Nick’s Wish who is making this happen. When we return from our trip Ravi is going to start music therapy. We also are hoping for some long walks, some rides on his adaptive bike and the opportunity to eat some tasty food.

Thank you all so much for following us and giving your unending support. Pray for Ravi as he undergoes radiation. Be good humans and we will be in touch. Peace.

It is strange to be the mother of a chronically ill young adult. There is no telling what a day might bring. Sometimes, you might have a small string of “normal” days and then be plunged back into the chaos known as cancer and epilepsy without warning. Ravi had several good days this week, despite being under sedation for both an MRI and a radiation simulation. Anesthesia tends to make him dopey for about 24 hours and he received anesthesia not once, but twice in the past week. Nonetheless, by Wednesday, he was chatty, communicative, and willing to eat anything that came within his grasp. It does not matter if the food is on his plate or mine, when he is hungry all food belongs to Ravi. At this point I don’t even fight him for it. I can always fix myself another plate and we are just happy when he eats. For the first time in his life, he is close to a proper weight for his size. He is still a long, thin fellow, but no longer looks like an escapee from a concentration camp. His hair has also grown back in, making him look less fragile.

Wednesday was as close to a normal day as possible. He was awake during daylight hours and asleep at night, which is not often the case. He got his meds on time. He was able to clearly let his father know that he wanted a freezie and a chicken quesadilla from Taco Bell and got both. Around 11pm he retired to his room to watch videos. A few minutes later he happily gave up the iPad and went to sleep. Thursday morning was dark and rainy. I heard him stirring around in his room. He grinned when he saw me. He had no inclination to get out of bed but was very happy to cuddle for a while. He drifted back to sleep, and I tiptoed out. A few hours later Robert and I were up puttering around and getting Ravi’s meds ready. The peace was split by the horrible groan that Ravi makes when he is going into a seizure. We raced into his room. Though the seizure lasted only a moment it was much more violent than the one he had on his birthday. He bit his tongue and blood was trickling from his mouth. He soiled himself. As the seizure subsided and I held him, he let out a long shuddering sigh. As I rearranged the covers on the bed, something that should not be there caught my eye. His G tube had fallen out. Perfect, this meant a run to the emergency department. For those who are not in the medical field, the first weeks in July are the best times to avoid the ED. New residents come on board the first week in July. A week before they were medical students. Now they are doctors and chaos reigns, even with the best of attendings. I was not looking forward to facing the ED on the 4th of July. I had the pediatric oncology fellow on call paged and waited for her to call me back. Fortunately, it was a doctor I knew, liked, and trusted. She called me back and said that, yes, a trip to the ED was necessary but things had changed. Ravi was now a 22-year-old and had to go to the adult ED. She had pleaded with pediatrics, but they gave her a hard no. He had to be seen by practitioners in the adult ward. We loaded a very dopey, post ictal Ravi in the car and set off for the hospital in a down pour.

Fairview Riverside is in a sketchy part of town. The first thing I noticed as we entered the ED was a large drop box for guns. A sign said that if one had a weapon, one must either return it to one’s car, or leave it in the box and not get it back. Armed guards stood on either side of the door, watching everyone who entered. It was a bit unnerving. Fortunately, once we got in, things were pleasant. Dr. G had called ahead, and a nurse was waiting for us. We were directed to a room and an older doctor popped in. He said that his son had had a G tube for 17 years and this should not be a problem at all. I think he spoke too soon. We were not certain how long the G tube had been out, and the stoma had started to heal. He could not fit the tube back in. He tried progressively smaller tubes until he found one that fit. This was not the exact kind of tube that Ravi needed, but it would work in a pinch to get his medicines in and would keep him from being admitted. Through all the fussing and prodding Ravi was a very good sport. He used Sam to chat with the nurse. He said it hurt and he wanted to go home. He even said please. My heart was breaking. Eventually, a tube was put in that would work for a day or so. The attending called Dr. G and asked if she could set something up with our team the following day for a more permanent solution. Since it was a holiday, the hospital only had a skeleton staff available. He taped the tube to Ravi’s abdomen and sent us on our way. It was not how we had planned on spending 4 hours, but such is life if you have a chronically ill kid. There are down times, lull times, and then times when an emergency pops up and your life and your schedule are no longer your own. The only thing to do is to put your child and your trust in the hands of the medical establishment and pray.

It is now 4am. I should be sleeping but I am writing because my muse has weird working hours. Ravi and Robert are asleep. The pets are asleep. The house is silent. I am not one to throw pity parties. Usually, when life throws me curve balls, I sent up a prayer to the universe and wade into the chaos. I don’t wonder why the chaos happened; I just deal with it. Last night was different. I lay in bed for hours wondering why life has to be so hard for Ravi. He is autistic and has epilepsy and cancer. It seems to be a bit much. Ravi loves life and is a creature of joy. He is happy with the simplest of things, laughing with a friend, going for walks, chatting with Sam, or going for rides in the car. He likes 80s music and Taylor Swift. He likes sunny days and pizza. Life has continued to throw him more and more curve balls since his diagnosis in December of 2022, and I have yet to hear him complain or repine. He still greets every day with a smile. He is happy to see me every morning. He never refuses to get out of the car when we make yet another trip to the hospital or clinic. His bravery in the face of adversity takes my breath away. Ravi clings fiercely to life and as long as he has this zest for life, I will continue to fight for him. I don’t know why his life has to be so hard. In any way that we can, we, his parents, try to lighten the load. But this is a road that Ravi has to walk. I am so grateful for the friends who continually check in and walk parts of the journey with us. You make this road bearable. When I update you next, I hope I have happier news. In August we will be going on Ravi’s make a wish trip. Before that, he has 5 days of radiation. Be good humans and we will be in touch. Peace.

Last Wednesday was a very long day. Ravi was scheduled for a sedated MRI. We were to arrive at the hospital at 9am. The scan would take place at 10am. It was anticipated that the scan would last one or two hours. We expected to be by home by 2pm at the latest. Fate, however, had other plans. Our check in was unremarkable. Though usually our appointments are at the west bank hospital, and today we were at the east bank, more than a few people recognized and greeted Ravi. We were shown to a pre op room and the usual parade of nurses, attendings, etc., began to show up. We were told that the MRI scanner was empty and waiting. All we needed was the anesthesiologist. Time slipped by and nothing happened. I ducked downstairs to buy a latte and into the waiting room to charge my phone. I got back and was told that the surgery ahead of ours had developed some complications so it would be a bit longer, maybe half an hour. At this point, Ravi was getting hangry. He had not eaten today because he needed to be sedated for the scan. He was still in a relatively good mood, but he was clearly getting impatient with the whole process. For a while, he went to sleep out of sheer boredom. Finally, at 2pm, the anesthesia team showed up. I immediately requested some versed for Ravi. This is the famous “don’t care” juice designed to put even the most fractious patient at ease. Twenty seconds after the versed hit his system, Mr. Boo was feeling just fine. They rolled him away to the scanner and Robert and I spent the next two hours hanging out in the waiting room. Finally, the scan was done. Like me, Ravi takes a very long time to come out of anesthesia. This day was no different. The team was also a little worried that he would be anxious waking up in a strange place (this has never bothered him in the slightest) and gave him yet another full dose of versed. To say that Ravi was toked to the gills would be an understatement! Eventually, he returned to baseline, we got him dressed, poured him into a wheelchair and rolled him to the car. We got home around 6pm. The dogs and Ravi were ravenous.

Ravi ate all of his food that we had picked up and then started on ours. It was two full hours of concerted munching. Eventually, he let out an enormous burp, curled up on his bed and fell asleep for the next 12 hour. The following day he was still a bit dopey from all the meds, but once he got the idea that food was a good idea, he was all for it. The caloric intake must have paid off, as his weight at the clinic today reached a new high of 60.2 kg.

The next hurdle to cross is this Wednesday when the radiation team will do a simulation of a treatment for him. We need to be at the hospital by 10 am. We hope no one else needs the anesthesia team ahead of him. His team, led by Dr. Terazakis, will study his MRI and measure and figure out how best to direct the X rays. We are not certain how long this will take, but I am assuming it will take an hour or more.

With the MRI and the simulation out of the way, Ravi should be cleared to be given radiation sometime this month. He will receive 5 doses in 5 days. We expect it to be a very intense week. He will be sedated for each round of therapy. The actual therapy itself will only take about 5 minutes. A lot more time will be spent in the waking up process. Between the utter fatigue that comes from radiation and then the anesthesia, I am anticipating a very quiet week for us. If any of my gentle readers have been through radiation or have been a caretaker for someone who received radiation, please share your tips and tricks to best help Boo through this week. Once Ravi has recovered from radiation, we are hoping to take a quick trip up to the north shore. Ravi loves large bodies of water, beaches, and boats. Duluth sounds like a lovely place for a quick getaway.

I have to admit, I am very nervous about radiation. Chemo was scary too, but this is something new and different. I feel like we are starting over on our journey, and I don’t have the arsenal of information I have amassed with our chemo journey over the last 18 months. Keep us in your prayers and good thoughts. I will update as I am able. Be good humans. Peace.

Ravi, my love, you entered our lives on June 18, 2002. The adventure has only gotten better. You are now 22 years old and amaze me every day. I hope you had a good birthday. The day before the lovely oncology nurses on floor 9 gave you a card and made a big fuss over you. A new nurse who was training in got to practice accessing a port on you, because you are such an easy patient to access. This made me very proud. On the 18th, you had your last session so of PT with Susan. You are ready to exercise in the outside world. I have pumped up the tires on your adaptive bike and if it ever stops raining, we are ready to go! Your dad and I also want to take you on a surrey ride on the local trails. We can pedal the surrey and you may either pedal or just take in your surroundings. We also want to go on a paddleboat ride.

The evening of your birthday, Myra came over. She has celebrated birthdays with you since you were 4 years old, and a birthday is just not a proper birthday without Myra. We ordered in Mexican food, and she brought you a fuzzy purple blanket and a blue chair. You decided that both were great and happily curled up in the blanket like a cocoon. Sadly, you had a seizure part way into the evening. It was not a bad one and it lasted less than a minute. Still, you were out for the rest of the night. You went to sleep on the couch. Mom, Dad, and Myra went on chatting softly. You seemed to find the sound of our voices to be soothing because your face was calm, and you smiled from time to time in your sleep. Eventually, Myra went home, and Dad and I moved you to your own bed.

You were supposed to have an MRI at 7:30 the next morning. We could not tell if you were going to have another seizure or not. We kept a careful eye on you. Around 2am, Mom called the oncologist on call and asked what to do. Fortunately, I got to talk to Dr Williams who knows you well. She said that it made absolute sense to cancel the MRI. We did not want to risk you having another seizure in the middle of the scan. After that, we all went to bed.

The past few days after your birthday have been calm. You seem tired but happy. We did take a good walk to Subway and back so you could get a sandwich. We are waiting for the rain to stop so we can get out for more walks and bike rides. You did enjoy a long hot bath, this morning. When your arm was in sling, you had to rely on sponge baths. I am certain it is a relief to finally get back in the tub, scrub all over, and wash your newly sprouted hair.

Boo bear, I love you to the moon and back. I hope that your 22nd year is good to you. I will be by your side, we will face whatever comes your way together. Love always, Mom.

Hello, from the infusion couch! Is this different than the infusion chair? Why, yes, it is! Ravi and I are hanging out in our living room as he gets his IV bolus of saline. As the liquid trickles in, he is becoming more and more animated. Occasionally, he gets up and does a lap or two around the room. I think he just likes seeing me chase him with the IV pole. The cat is horrified. The nurse came, accessed his port, gave him antibiotics, checked his wound (which is healing nicely) and hooked him up with fluids. She will be back in an hour do de access him. Though we have been pushing fluids into his mouth all day he has been super floppy. It is absolutely amazing what a bolus of fluids can do for his energy level and overall disposition.

So, what does one do for an hour when one is stuck on the couch with their favorite autistic friend? One can do lots of things, not including discussing upcoming birthdays, watching Word Girl, researching the next type of chemo Mr. Boo is going to try, setting up a date for a spine MRI, and asking my very patient editor about how to launch this blog into a book. I have been working with Abbey since last spring and she is an amazing editor. We have some finishing touches to add to things, and then we will start pitching our idea to agents. I realize that one can try to sell one’s book without an agent, but also realize that 95% of the time, the manuscript with just get tossed without a second glance. I want Ravi’s story to have a fighting chance.

The saline bag is about 3/4 empty. Ravi is in fine form. The cat is still horrified. Soon, the nurse will come back and de access the port and go on her merry way. Robert will come back from the pharmacy with another of Ravi’s many meds. I think he is up to 10 different medications at the point, given every 8 hours. Shout out to my awesome spouse for keeping the pill minder full and remembering which medication happens when. I handle all of Ravi’s scheduling and My Chart updates. I do a lot of reading and ask a lot of questions when we go to doctor visits. Robert keeps track of meds and does all the driving. Somehow or another, we make it work. This is not a job for a single parent! If you are a single parent and are reading this, you have my undying respect, and can I take you out for a cup of coffee? Robert has returned with food for Ravi from Wendy’s. Food and fluids are happily being consumed. Soon, he will have enough energy for a walk. It looks like a beautiful day outside, time for all of us to get some Vitamin D.

Thank you all for your feedback, your friendship, your prayers and good vibes. You are all excellent humans! We will be in touch. Peace, Harriet.

Hello, friends. It is 3:17 am and my muse is knocking around, again. I don’t know why she can’t keep normal 9 to 5 office hours, but here we are. Today, I am inspired by Eric Carle’s 1969 whimsical classic, The Very Hungry Caterpillar. If I may remind you, this book is about a Caterpillar who wakes up one Monday morning and he is very hungry, so he eats one apple. On Tuesday, he eats two pears. On Wednesday, he eats three plums. On Thursday he devours four strawberries. On Friday, he consumes 5 oranges. Obviously, this is not enough because on Saturday he eats a slice of chocolate cake, a cupcake, and a slice of watermelon. Then, the very hungry caterpillar gets a tummy ache. On Sunday, he eats a nice green leaf. Then in a food coma, he folds himself into his cocoon and rests for two weeks. Fourteen days later, he emerges as a big, beautiful butterfly. Sometimes, I think Mr. Boo channels the very hungry caterpillar. Follow along.

This morning Mr. Boo woke up and he was very thirsty because his kidneys are not working too well. He drank a liter of Gatorade. Then, he drank two glasses of Coke classic. Somewhere in there, his home care nurse showed up and gave him his IV antibiotic. This was too much excitement, so he retreated to his bedroom and rolled up in his blanket, like a cocoon. He slept most of the afternoon. Robert became concerned that he was dehydrated and while he was sleeping, slipped three more cups of Gatorade into his g tube. Mr. Boo snoozed on. The dulcet tones of the Jeopardy theme song lured him out of bed, and he came to watch Ken Jennings hosting celebrity week. While this was happening, he ate two bags of microwave popcorn. For reasons known only to himself, he also carried around a can of tomato sauce. We thought he might like pizza from Carbones, so Robert went to get some take out. On his return, Mr. Boo ate 4 pieces of garlic bread which he dipped in copious amounts of marinara sauce and 5 pieces of pizza. He then collapsed on the sofa with Sam and made comments on the world in general and his upcoming 22nd birthday in particular. Since he was actually staying in one place, I sat next to him and tried to eat my salad. Mr. Boo took one look at those nice leafy greens and tucked right in. He ate all of it. His parents would like to say that he immediately crawled into bed and slept for 14 hours, but he had other plans. While his daddy followed the adventures of Space X. Mr Boo followed the adventures of Sid the Science Kid and Curious George. This was followed by multiple trips to the bathroom and several more loads of laundry. By about midnight, I gave up and went to bed. Mr. Boo and his daddy were happily pursuing their own endeavors. I slipped in and out of sleep, but I had caterpillars on the mind. Eventually, around 3am I got up. I helped Robert corral Mr. Boo into bed. He ate 4 sour patch candies, curled up in a fleece blanket, and went to sleep. I made a pot of coffee and started writing.

Current scene, Robert is still reading about Space X. Mr. Boo is asleep, probably dreaming about food. The dogs are asleep at my feet. The hedgehog is running on her wheel. The cat is convinced that it is time for breakfast. Most sane people are asleep.

Our family is not your typical family. Is there really such a thing? My mom story is probably not your typical mom story. I started out as an autism advocate and blogger. Then, as Ravi’s diagnoses grew, I started also writing about epilepsy. 18 months ago, osteosarcoma highjacked the plotline of our story and I started writing about and advocating for more research into rare pediatric cancers. I have no idea what dips and turns the story line will take next. I do not know how long we will have Mr. Boo with us. We take the good days with the bad. Today was a good, albeit long, day. I watched my son dive face first into gustatory delights. He ended up with a full tummy and tomato sauce all over his face and sticky fingerprints all over the living room, and we are here for it. My only regret about today was I did not take pictures. Speaking of pictures, we are going to have some family pictures taken. We have never been a family for formal pictures. Our last pictures of our whole family are from when Ravi graduated high school in 2020. I want a picture of the three of us, just to have. I am hoping to find a photographer who can capture some of the essence of Ravi, and the love that Robert and I have for him and for each other.

I have now successfully gotten the caterpillar out of my brain and into my blog. Even though I have had several cups of coffee, I think I will go to bed. Hopefully, Mr. Boo will sleep for a few hours, curled up in his fuzzy cocoon. When he emerges as a big, beautiful butterfly, I will feed him again. Be good humans, and we will be in touch. Peace, Harriet.

Hello, FOB, or Friends of Boo. It is 4:38 am. Boo is in his room happily hooting. We are not sure why. He is not hungry, he is not thirsty, he is just awake and rocketing around his room like some sort of demented owl on speed. If we weren’t so tired, this would be absolutely hilarious. But we are tired!

In a few hours we head to Mayo, in Rochester, so the surgical team can get a good look at Ravi’s arm. To my eyes, it looks like it is healing nicely. Our Minneapolis team sent a picture of the aforementioned arm to Mayo two days ago. Mayo thought the arm looked a bit red and called me back. They asked for us to bring him down at 9am instead of 12:45 pm. The plan is to look at the arm, see if it needs to be cleaned out (ie: another surgery) and then he would stay the night for observation. I flat out do not want this to happen. Boo has had more than enough surgeries and hospitalizations in the past few months. As I said, the arm does not look really red or angry to me. My fervent hope is we go see his team, they examine the arm, maybe take out the stitches, repack the arm in its brace, and send us on our merry way. As a precaution, I will pack another set of clothes and meds for us, but I really hope we are home by midafternoon.

I continue to love Fairview Home Infusion. Every few days, we get another installment of supplies. Once or twice a week, a nurse shows ups to do a home visit. They can re access ports, re-dress wounds, take labs and vitals, and just do all the things that are usually done in the clinic. All of this takes about 30 minutes, tops. This is a huge timesaver and is greatly appreciated by all of us. The dogs, of course, think the visitors are all for them and greet every nurse or delivery person with proper enthusiasm.

We met with Dr. Terazakis earlier this week. She is planning for Ravi to have an MRI to best target the bony tumors in his body. Then, she will build a form to go around his body to prevent him from wiggling (he loves to wiggle!) during the radio therapy. He will also be sedated. Treatments will take 5 days. He will come in once a day for 5 days for the therapy. The sites targeted will be in his cervical spine and lumbar spine. For right now, the two new spots on his mandible and base of his skull are just going to be watched. She says that these growths are tiny, and she does not want to do anything with them yet. If they grow, we can target them at a later date. There are always risks when doing anything with the spine, and it could cause neurological damage. On the other hand, the chances of damage being caused are greater is we were to leave these spots alone. So, we are weighing the odds. From what I am told, radio therapy is less hard on the body than chemo. He may experience some fatigue or some GI upset that should go away promptly. Any pain can be managed via medication. We are not sure yet when the radio therapy will occur, probably sometime in mid to late June (happy birthday, Boo) but we know that it will be a very intense week.

Thank you to all of you who follow our story. I seemed to have morphed from being an autism advocate to an osteosarcoma advocate. This does not mean that I am any less passionate about autism awareness and acceptance, but I am also passionate about wiping out a deadly disease. It is nearly 5am. I am going to change clothes and go for a run with the dogs. They will be on their own for much of the day, so this is a chance for them to get their wiggles and barks out. Wishing you all a blessed day. Be good humans. Peace, Harriet.

Hello, friends of Boo. It has been a strange week. Last Monday Ravi had a PET scan. The results of the scan were mixed. The nodules in his lungs are stable. The fungal lesions in his spleen and kidneys are gone. But the cancer has spread to other parts of his body. We are sad. Well, I should say that Robert and I are sad. Ravi seems to be in fine spirits. His hair is growing back in, the IV antibiotics are holding off an infection, and he has been out of the hospital for nearly 3 weeks. So, what is next?

Tomorrow, we meet with Dr. Terazakis, one of the top radiology oncologists in the country. We had met with her once before, a year ago, and liked and trusted her. We are expecting that she will prescribe a series of short radiation sessions for Boo, to try and hold the cancer at bay. From what I am told, targeted radiation is much easier on the body than chemo. The most common side effect is fatigue. Right now, Boo is too weak for chemo. His surgery wounds are still healing. After they are healed, we may try him on a daily, oral chemo that he can take at home. Hopefully, the side effects of this are minimal.

In brighter news, we now have home nursing care! This is a huge blessing. A nurse will come to the house once or twice a week to run labs, give fluids, check the surgery wound, etc. We had a visit earlier this week and she got done in 30 minutes what would have taken us half a day if we had gone into the clinic. I could palpably feel the stress in the house go down when we do not have to report to the clinic every day.

Port de accessing is Boo’s newest game. He has to have continual port access until June 17 for daily IV antibiotics. I do not know if the port tape is itchy, or Boo is just perpetually curious, but he keeps de accessing the silly port. On a weekday this means we have to go into the clinic to have it re accessed. On a weekend, this means we have to spend half a day or more in the ED. Sigh. But, now with home nursing, even on a holiday weekend, we do not have to go to the hospital to get him hooked up again! I simply call Fairview Home Infusion, and the company sends out a nurse to fix the problem. Easy peasy. Twice over this holiday weekend I have had to call for a nurse. We did not have to leave the house, go to the hospital, search for a parking place and then wait for a nurse to help us. We simply hung out at home and when a nurse showed up, she popped in , accessed him, and went on her merry way and we continued with our day! This is an amazing blessing.

Ravi had his yearly assessment by a county social worker last week. I must admit, I felt bad for the poor county worker. He had never had an autism client with cancer before on his case load. He asked me to describe what a bad day with autism and cancer looked like. I told him. He blanched, winced, and then apologized. It looks, though, as Ravi will be able to get more at home supports. Here is my prayer: That I continued to get paid for work for Ravi for 40 hours a week. That we get in home nursing care. That Robert and I get an occasional bit of respite. That Ravi is healthy enough to enjoy a somewhat normal existence.

So, here we sit. Not all good, not all bad, sort of a mixed bag. Thank you to everyone who gave us such a joyous homecoming, who looked after our pets, or who supported us from afar while we were at Mayo. Your actions are deeply appreciated. I am going to sign off as I can hear that Boo is up and about. Anyone want to take a guess is I can still access his port or not? At any rate, he sounds happy. Our boy is happy, and that is all that matters right now. Be good humans and I will be in touch.

Or is it part trois? I don’t know, I have lost track. Anyway, for the uninitiated, RBM stands for Rapid Boo Movement, and Boo is in fine form today. Today, by the way, is Monday, May 13, 3:02 am. Why am I blogging at 3:02 am? Why not?1 Boo is up, ergo, I am up. He just does not seem to want to sleep tonight. I thought he would probably sleep well tonight as he had walked over a mile yesterday, and had eaten really well. No soap. He is up. Not in any discernible pain, just letting out his infamous banshee cries. Right now, he is happily watching his beloved Sid the Science Kid. For a while we got to listen to his wound vac beep until the nurse resecured the line and mollified it somewhat. The resident on call came in to check his wound site. Ravi was all smiles. She was young, blonde and pretty. Ravi beamed and was more than happy to have his wound site checked out. Alas, she decided all was well and left him to his own devices, so he continued to make noise.

The plan is thus: in about 4 hours we will load him into a wheelchair and take him downstairs to the casting room where they will make a new splint for his arm. He will wear this splint and have his port accessed for another 5 weeks. The splint will immobilize his arm. The accessed port will pump in antibiotics. He will get rid of both sometime around his 22nd birthday and then take a well-deserved and much needed bath! Wet wipes can only do so much. I love our boy, but he smells a bit ripe and really needs some shower time. After the splint is in place, we should get checked out and head home. I am certain we will be met by a great congregation of yapping, howling dogs. We are not sure how Nikki, the cat, will react. He may be happy to see us, he may spurn us, or both. Either way, it is fine, we will be home!

Thanks for jumping into my 3am blog. Be good humans and we will talk soon. Peace, Harriet.