Harriet's Hedgehogs and Autism Advocacy

Boo has been out of the hospital for almost 2 weeks, but is still very tired and weak. He is receiving all nutrition through his G J tubes. He has not eaten anything by mouth in weeks. His deep hacking cough is slowly getting better. His labs look okay. He is just very, very weary. The first few days from the hospital Robert and I sat with him around the clock. He had to be attached to his feeding pump 24 hours a day to put weight on him. We were afraid he would pull the tube out, so we sat with him in shifts, including overnight. Sleeping in 3 hour shifts is not good for anyone, but thankfully, we may have put that behind us. Boo is on a feed about 16 to 18 hours a day, but we turn it off at night. He has labs and fluids tomorrow and I hope we will see an improvement in his weights and his lab values. He is getting reassessed by a county RN in early October. We want him to switch to the CAC waiver. This is a county waiver that support chronically ill people in their own home instead of the hospital. Having some extra hands on deck at home would be incredibly helpful.

October 6, 2024, is the Twin Cities Marathon. As I mentioned in a previous blog, I am running this race to raise money for the Osteosarcoma Institute. The dream is to banish this disease forever. Thank you so much to all who have contributed to #TeamRavi. We are deeply grateful. If you did not see his link in the previous blog, I will post it one more time. September is Pediatric Cancer Awareness month. Please donate to our cancer warriors as you are able.

https://osinst.org/herndon-fundraiser/

Thank you for holding us in your thoughts and prayers and good vibes. We are hoping that Ravi turns a corner in the near future and starts asking for trips to Taco Bell. In the meantime, be good humans. Peace, Harriet.

Hello, all. Ravi has been in hospital since last Thursday. He admitted with an eye infection, vomiting and rapid weight loss. As of today, Monday, his eye is looking much better, and he is in a great mood. We still have no idea why he is vomiting up everything from Pedialyte to formula. He cannot swallow anything at all, and nutrition taken in via the g tube comes right back up. Tomorrow is a day for exploration. He will be sedated, and a camera and a scope sent down his throat into his stomach. The team will look for inflammation, stricture, and anything that might need a biopsy. He is starting to get medicine now to block stomach acid and hopefully make him hungrier and allow the food to stay down. He will go on TPN via his port tonight, just to get some much-needed calories into him. For a guy who has spent most of the last week throwing up, he is in an extremely good mood. He is cooperative with the doctors, loves his nurses and wants lots of cuddles with mom and dad. He is using his AAC, Sam, to chat up a storm. We are hoping and praying that tomorrow will bring us some answers and show us a route to bring him home.

I had mentioned earlier that I had a big reveal coming up. Last Friday, Ravi’s web page at the Osteosarcoma Institute went live. Here is his website. You can also get to his website from my Facebook page. If you want to learn more about Osteosarcoma, the website below is the perfect place to find things out.

Donate – In Honor of Ravi Herndon

I am teaming up with OSI to fight for better treatments and outcomes for osteosarcoma patients. I have spent the past few months training for the Twin Cities Marathon on October 6. I am running this race to raise money for OSI and to bring greater awareness to pediatric bone cancer. The treatments for osteosarcoma have not advanced in over 40 years. OSI is trying to change this. My job right now is to care for Ravi and put the final touches on my marathon training. Your job is to hold us in prayer, and if you can, donate to OSI. If nothing else, check out the webpage which is all things, Ravi!

This is a very stressful time for Ravi and those who love him. Thank you to all who reach out and hold us in prayer and white light. I hope I have some more answers to give you tomorrow. In the meantime, be good humans and we will be in touch. Peace, Harriet.

Hello, friends. We are back from Duluth and into the swing of treatment again. Sadly, Ravi’s latest PET scan did not give us the news we wanted. Several more tumors have popped up, and smaller ones that were lurking in the background have grown. The good news is that the mets in his lungs are stable, and the tumors that were treated by radiation responded well. He has begun a daily oral chemotherapy drug called Cabo. He also will be undergoing more radiation to his spine and his left mandible. We are sad about this, because he is still really tired from the last rounds of radiation, but it seems the fastest and most effective way to attack the tumors. He has a swallow study on Tuesday morning, as it has become very hard for him to swallow water or thin liquids, they make him choke and gag. Obviously, this is very scary for all concerned. I give thanks for the G tube because that is how he is getting the bulk of his nutrition and hydration. Wednesday morning, he has a sedated MRI of his left mandible and c spine, and a simulation of how radiation will go. We hope to begin radiation the following week. We welcome and delight in all your prayers, white light, and good energy. They really help.

Friday, I spoke with my editor and by the end of September, my book will be in its final form. Then, begins the search for an agent. Luckily, Abbey, my wonderful editor, will help me with this. I want Ravi to hold this book in his hands as a testament of my love to him.

This week begins the fall schedule for Highland Friendship Club. Ravi is involved in this club and will be in the bowling league and a drumming class. He has tried both of these activities before and really enjoyed them. We are hopeful that this will give him something positive to focus on in the midst of another round of radiation.

September is Childhood Cancer Awareness Month. In a few days I will be releasing a link to a page about Ravi to raise money for better treatments and outcomes for osteosarcoma. On October 6, I will be running the Twin Cities marathon to raise awareness about childhood cancer. This may be the slowest race of my life; I have had no time to do any speedwork. I am getting my mileage in at odd random times throughout the week. But this does not matter. Every mile that I run for Ravi puts us that much closer to a cure for childhood cancer. I am excited to show everyone his blog. Stay tuned!

Thank you for all your support and love. It is deeply appreciated. Be good humans and we will be in touch. Peace, Harriet.

Greetings from the North Shore! Boo has had a splendid week. This was his Nik’s Wish week. Nik was a young man who believed life should be lived with joy. He also believed that young adults with cancer should also get a wish trip. Most Make A Wish organizations only serve children, not young adults. Before he passed from cancer, Nik set up this foundation. His work is carried on by a tireless team of volunteers and philanthropists. This past week, Ravi’s wish came true.

Some young adults want to fly somewhere exotic. Others want to go to Disney Land. Boo’s wishes were much simpler. He wanted to visit a large body of water, he wanted to ride on a boat and a train, and he wanted to stay at a hotel with a pool and a hot tub. He got his wish. We spent 4 lovely days in Duluth. We rode a scenic train up the coastline while eating pizza. We went on a boat ride around the harbor and into Lake Superior, while eating chicken nuggets, bonus! Our hotel was lovely and backed right up to the lake. There were big ships, sailboats, and seagulls galore. The scene outside of our window was constantly changing. There was also a lovely pool and a hot tub. We spent several pleasant evenings floating about in the hot water. I am certain it felt very good to Ravi’s tired body.

His favorite activity by far was the pizza train. The train had a glass ceiling which provided an excellent view of the lake and the woods. There was yummy food to eat and a very festive atmosphere. At the end of the 2.5 hour, it was clear that Boo did not want to leave the train. He wanted to go on more adventures! We will definitely have to find more train rides for him. The boat ride was also a success. It was a bit chilly out on the water and Boo made a beeline for the sheltered snack bar. He happily munched snacks and peered out the windows. The lake was smooth as glass, so no one got seasick. Once again, he was sad to have the ride come to an end. We also went on a surrey ride. This is a 4 wheeled contraption where 2 people can pedal, and steer and the other person can sit in the middle and be rolled around like royalty. We were all crammed together on one seat with Boo in the middle. It was a bit crowded for 3 adults but we made it work. Robert and I provided the leg power, I steered as Robert’s steering wheel did not work, and we spent a good hour wheeling around the lake shore. We had to dodge a lot of other bikers and pedestrians, but a good time was had by all. When we returned the surrey, we found a candy store nearby. We filled a bag with treats and retreated to a nearby bench. Ravi happily devoured gummi bears while I discovered that chocolate covered cherries are the bomb!

The final day of our trip we went to the beach. I had hoped that this would be the grand finale for Boo’s trip, but he had other ideas. He woke up early that day and was in fine form. He ate a good breakfast and was quite interactive. We packed up the car and headed out for the shore. In the car he ran out of energy and fell asleep. By the time we got to the beach he was sound asleep. He was not happy to be roused from his slumbers when we arrived. One way or another, Robert and I propelled him out of the car and hiked the 400 yards to the beach. Boo does not have a lot of stamina and walking through deep sand is hard work. By the time we reached the shoreline he was exhausted. I had plans to get some Christmas card pictures of Boo frolicking on the shore, but all I got were 3 pictures of Boo burying his head in Robert’s tummy and trying to go back to sleep! Robert skipped rocks and I admired the shore. After a few brief but soul satisfying moments, we headed back to the car. Ravi slept all the back to the Twin Cities. All in all, it was a great respite, and I am eternally grateful for the wonderful folks at Nik’s Wish for making Ravi’s wishes come true. Thank you all for coming along for the ride. Be good humans. Peace, Harriet.

Boo, my love, the past weeks have been really hard. You came through your ten days of radiation treatments like a champ. You greeted the staff at 5:30 every morning with a smile. You won the heart of the receptionist who asked if she, too, could call you Boo. She knew it was your special name, and she wanted you to feel right at home. I gave her permission, gladly. We can always use more cheerleaders for Team Boo.

I had hoped when radiation ended you would bounce back. But your body is still healing. Your smile is beautiful, but your body is battle tired. You eat and drink very little. I thank God every day for the G tube that lets your daddy and me get fluids, calories, and medicines into you. I can tell by your face that this probably does not feel too good, but, baby, we have to keep you alive. I know you are not comfortable, but you can’t tell me where you have pain. It hurts my mama heart to see you in such discomfort. I was always taught to love, rather than to hate; but baby, I hate this cancer. It is an evil force that I wish I could rid you of. I want to banish it forever. Your doctors want to banish is forever. They are working their hardest to bring you to health. Stay with us, baby. Stay with us a little bit longer. There are still good things to be had.

In early August we are going to Duluth. You love large bodies of water, and you can dip your toes in those baptismal waters of the North. You can go for rides on trains and boats. If you want to spend all day in the jacuzzi, that is fine, too. This trip is just for you. You earned it and it was given to you anonymously, but with great love, from someone else who wants you to be happy. I want this to be a time or respite and renewal.

Through this whole journey, your Auntie Pidge has been our guiding light. She is a Healing Touch practitioner. She prays for you daily and sends you healing energy. When you were in the hospital, we were blessed to have Healing Touch nurses come to your bedside and work with you. You responded so well to their ministrations. I believe that they helped you get through all those rounds of chemo. Yesterday, Pidge suggested to me that we seek out an HT practitioner in St. Paul. She will continue to send you her love and prayers but feels you would do better with someone who can actually lay hands on you. Two years ago, I would have laughed at such an idea. Now, I am a believer. I watched those HT nurses take your pain away. They brought back your smile. They also showed me how to help you. I will help you the best that I can, as I always do. But, right now, I want someone else to lead and guide me to help you to feel the best that you can in your body. I have reached out of an HT healer in St. Paul. I hope to hear from her soon.

Boo Bear, I love you more than life itself. I would do anything to take away your pain. Stay with us a little bit longer. Let’s go to Duluth. Let’s do some music therapy. Let’s try HT. Boo, you have the most beautiful smile. Your wonder and amazement about the world around never grow old. From your biggest fan, Love, Mom.

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.