Home!!

To our great delight, Ravi was discharged from Masonic Children’s Hospital this afternoon. He came through the last two infusions very well. He seemed a bit surprised to be leaving the hospital after 11 days, but as we started to drive home, his smile and his eyes got bigger and bigger.

Just last week, his beloved Taco Bell reopened after being remodeled. We stopped by the get him a Freezie and a snack. I was not certain what he would be able to eat after chemotherapy, but I was willing to give it a try. I handed him his Freezie and he grabbed it from my hand and began slurping so hard he promptly got brain freeze. He withdrew the straw from his lips, gave me a brilliant smile, and dove back in for more.

Upon arriving home, he made a beeline for the bag. In short order he devoured a chicken quesadilla, a burrito supreme, the rest of his Freezie, and mine as well. I was pleasantly stunned. After his last round of chemo he had not been able to eat for 36 hours, which ended up getting him readmitted for nutrition. This time, I knew better what anti-nausea meds helped him, and was able to advocate that he receive these meds. A few hours after we got home, I gave him another dose of anti-nausea medicine, and he seems to be having no problems. I am ecstatic. If I can stay on top of his nausea, I can get him to eat and stay hydrated, then he will feel much better.

One of the reasons he was in the hospital so long was he developed an infection in his port. Fortunately, the infection did not spread to his heart. We were very lucky. He had an operation to remove the port and had a pic line put in his left arm. He is receiving IV antibiotics every 8 hours for the next 2 weeks. In order to get him out of the hospital, I had to be trained to administer the IV antibiotics. On a practice dummy, it is fairly straight forward. At 10 pm, I will find out if I can do this as easily on a live person! I am a bit nervous. He needs to get infusions in his IV line ever 8 hours, at 6am, 2pm and 10pm. Since infusions do not hurt, I should be able to sneak 2 of them into him while he is sleeping. When I infuse the 2pm dose, I will make certain to have distractions on hand. Wish me luck!

Robert and I are thrilled to have Ravi home and he is very happy, too. He is loving his new collection of hats and technical t shirts. Thank you to everyone who wrote, visited, dropped off food, sent care packages, or prayed. This means so much to all of us. You all are good humans. Peace, Harriet.

A Long 10 Days

Ravi went into the hospital 10 days ago and we are fervently hoping and praying that he gets discharged tomorrow. He has had 2 more rounds of chemo, developed an infection in his port, and had surgery to take the port out and put in a pic line in his left arm. He is on IV antibiotics for the next 2 weeks. Yesterday, I learned how to administer IV antibiotics and the supplies should arrive at the house at about the same time that he does. Right now, Robert is at the hospital with him, and I am home with the pets. We have been tag teaming each other, as to who sleeps at home and who sleeps at the hospital. Normally, I stay at the hospital and come home for a bit during the day to visit the animals, do laundry, dishes, etc., and get a few minutes out from under. Currently, I have a happy hedgehog in my lap and three dogs and a cat at my feet. I am in my favorite chair and the sun is shining. Ravi should be about to finish up today’s round of chemo. The nurse gave him a shot of Ativan, so he mostly slept through the entire thing.

In order for Ravi to come home, he needs to eat something tonight and not spike a fever. We were so close to coming home last week, when he spiked a fever of 102 F and we realized we had a serious infection on our hands. Thanks be to the Creator who did not let us go home. Hopefully, tonight and tomorrow will go smoothly, and this time tomorrow he will be in his own home.

I am a bit nervous about administering the IV antibiotics, even though it seems pretty straightforward. As long as I keep everyting sterile and follow the correct procedures, we should be fine. Hopefully, he is home until February 20, when we do repeat scans to check on cell necrosis, and have another round of chemo. His body is pretty beat up at the moment and he needs time to rest and to heal. Thank you to everyone who has stopped by, dropped off food, or prayed. It is greatly appreciated. Hopefully, at this time tomorrow, I can tell you that our boy is home. Be good humans. Peace.

Brief Update

Hello, all. Thank you so much for the birthday wishes. We had a lovely, quiet day at home. Ravi spent all last week in the hospital, as he will this week. On Monday they gave him Methotrexate. The rest of the week they pumped him full of fluids and measured his Ph. He had to have less than 0.1 in his system in order to go home. This number was not hit until Saturday morning. Robert spent Friday night at the hospital and let me go home, as I had not been off of floor 5 since Monday morning and was going stir crazy. It was such a blessing to be in my own home, eating my own food, drinking coffee from my coffee maker and being surrounded by my pets. The dogs and the cat had a lot to talk about.

Saturday morning, I picked Robert and Ravi up from the hospital. Ravi was so happy to be home. His appetite was good. He is loving both salty and savorty foods. Special thanks to Dan and Robyn who brought over take out from Hong Kong Noodle. Ravi discovered that he loves pot stickers. Who doesn’t. He also had no problem sampling different dishes of beef, chicken and tofu with a variety of veggies.

We are back to Monday again and I am packing our hospital bag. We check in at the lab at 11am, get our levels checked and then go down to floor 5 to get another dose of Methotrexate. This week we will be much more vigilant about getting Ravi up and out of bed and workiing with the PT team. He lost a lot of strength last week and took a bad fall at home. Right now his poor face looks like he was in a bar room brawl. But, he is still happy and smiling. This young man amazes me every day.

We are allowed to have visitors, to if anyone wants to drop by and say hi, we are at the Children’s Masonic Hospital on Riverside Ave. Check in at the front desk and they will direct you where to go. Hopefully, the methotrexate will leave his system faster this time and he can go home before Saturday. Send him good vibes, prayers, and that his levels are below 0.1. Thank you all for your continued support and love. Be good humans.

Boomerang

Last Tuesday was an amazing day. Boo woke up at 4:30 in the morning and told me he wanted to eat peanut butter and go to school. I could help with the peanut butter immediately, but school had to wait a few hours. I was ecstatic that he had enough energy to want to go. At 10 am sharp we pulled up in front of Focus Beyond and he got a hero’s welcome. He had the best day! Teachers and aids told me they had never seen him smile so much, and he is a pretty smiley kind of guy. That evening, I went out for a run with by run club. It was the first normal feeling day our family had had in over a month. It was glorious!

This got me feeling a bit hopeful. I had deleted everything except Ravi’s medical appointments out of my phone. Just to make the calendar look happier, I added school to the next few days. Bad idea! Fate came flying back at me like a boomerang and upset all my happy little plans.

Wednesday started out icy. Schools were delayed and Ravi was sleepy. I decided to let him sleep and see if the roads cleared up. Midday he woke up but was low energy. I texted his teacher to let him know he would not be coming in. He just seemed off. At 2pm he had his first seizure of the day. This was his first one in over a month. It lasted a couple of minutes and then he slept deeply. I called the doctor on call and he said just to wait and see what happened. He did not think the seizure was caused by any of the cancer drugs. I also called the neurologist on call at Gillette. He told me to wait and see. Ravi dozed most of the afternoon and refused all food and water. Our worry deepened. At 7pm he had another seizure. I called the hospital. We discussed the lack of eating and drinking and the most recent seizure. Neither of us wanted to bring him into a germy ER full of sick kids, but we decided that our threshold for bringing him in would be one more seizure. At 10pm he seized again and I had to apply rescue medications. I called the intern on call and said we were coming into the ER.

The ER was amazingly empty and we got seen immediately. His vital signs were taken, blood was taken for cultures and he was hooked up to an IV. He was very tired, ataxic and out of it. Eventually, we were given a room on floor 5, oncology, and sent upstairs. We got settled into bed around 2am. He fell deeply asleep. I did not sleep at all.

The next morning, we met with his team. It was decided that stress had caused the seizures and the chemo was causing his body considerable stress, and he was still unable to eat or drink. The plan was to keep him in the hospital, get him stable and run TPN through his port for instant nutrition. The day past rather peacefully. That evening was a different story. Ravi usually gets his evening meds around 9pm and goes to bed by 10 pm. If he misses this crucial window of time, he gets a second wind and is up at night. Pharmacy was late, very late in sending up his meds. They slowly trickled upstairs. By midnight he still had not received his anti-seizure med. I politely but firmly told the nurse that this was not okay. He had already had 3 seizures the night before, and lack of sleep causes seizures. She went to light a fire under pharmacy. Eventually, the Fycompa appeared, and we gave it to Ravi. Too late, we had missed the crucial window of time and he stayed up until about 4 am. I did not sleep at all. Nurse and aids were in and out of the room all night long and rounds started early that morning.

When the doctors came to round Ravi was still sound asleep. They decided he was stable enough to go home that afternoon. He would be on a higher dose of Fycompa, and they would gradually reduce his TPN flowing into the port. Ravi continued to snooze. We were dismissed around 3pm, went home and spent a lovely evening with Mags and Aya. Bedtime came and we realized that we did not have Ravi’s meds that I had taken to the hospital with us. Oh no! This is when I learned a valuable lesson. Never take personal meds to the hospital because nurses will take them and lose them. Robert called the charge nurse who went looking for the meds but never called back. Ravi was wide awake and stayed that way for another 12 hours.

Morning came and we were all fried. Ravi looked horrible and Robert and I did not feel much better. I called the pharmacy and was able to get an emergency 3 day supply of his clonidine, which he needs to sleep. I called the doctor on call who assured me that it was the lack of clonidine that had caused the insomnia. Robert went to the pharmacy to pick up the clonidine. Ravi continued to pace, flap, and hoot. It was like he could not get comfortable in his own skin. I felt so sorry for him. Robert returned with the clonidine and set off for Fairview to try and track down the missing Fycompa. I gave Ravi 2 clonidine and an Ativan for good measure. Mercifully, in 20 minutes he fell into a deep sleep. I spent the next hour calling different providers to try and get emergency med refills. This was not easy to do on a holiday weekend. Robert came back in from the hospital. He had not had any luck getting the nurse to find the meds. Just as we were about to give up hope, the nurse called back. She had found the Fycompa. It was not the right amount, as we needed a prior authorization to go up 2 milligrams, but it would be enough. Robert turned around and set off for the hospital once again.

In short, it was a very long 72 hours in which I did not sleep at all. We learned to never take our own meds to the hospital. I learned to use my voice to get nurses to give my child his meds in a timely manner. Robert gets high marks for simply hanging out at the hospital and not giving up until meds were found. I learned not to put anything new or hopeful down in my calendar that looks like a normal activity. Yesterday was a blissfully peaceful day. Ravi got all his medications on time, did not have a seizure and was able to eat some on his own. Today we return to the hospital for a day or two while he receives his next infusion. I hope that his hospital stay is less traumatic. We are taking all your thoughts, prayers, and good intentions with us. We are leaving medications at home. The hospital pharmacy can provide all the medications. Through this all, Ravi has been a trooper. He has lost his hair, had 3 seizures, been unable to sleep, and yet is still smiling. The kid amazes me. I am proud to be his mom. Be a good human and we will be in touch.

Subway for the win

Getting Boo to eat is a fulltime job. He does not like the smell of food and prefers that I bring small amounts of food to him in his bedroom. Keeping him hydrated is relatively easy, but solid food is a bit of a challenge. Today Robert brought him a 12 inch sub from Subway with just about everything on it. For this, Boo mustered enough strength to make it into the dining room and sit at the table. I did not ask him to do this, he just did it. Half the sub vanished in about 5 minutes flat, along with a handful of chips. Then he wandered back into his room. A few minutes later he emerged and ate the other 6 inches. HIs color looked a bit better after that. What I am learning is that each day must start with copious hydration. Then I will offer him Ativan, Tylenol, and his usual other med. This damps the nausea down enough that I can usually get him to eat some meat or some cheese. He has developed a love for string cheese. He is not interested in fruit at all, but happily ate all the veggies on his sub. He has labs drawn every Monday and Thursday. On Thursday I got a call from the lab saying that his white blood cell count was very low. They did not think he needed to come in for a transfusion but wanted me to watch him carefully for a fever. If he spikes a fever, we are supposed to head for the hospital immediately. So far, no sign of a fever, just unrelenting fatigue. His team has given him the okay to go to school, but he barely has the energy to make it from his bedroom to the bathroom. Right now, school is a fantasy. I took him out for a ride in the car and a stop at a drive through yesterday, and that wiped him out for the day. We go into Journey’s Clinic on Monday for labs. I will not at all be surprised if they decide to check him into the hospital. In a sense, I wish they would. The rest of the time it is me watching him, wondering if I am taking care of him the way that he needs. This is the weirdest endurance race that I never signed up for.

On a brighter note, I got outside today and ran 8 or 9 miles. I have not run this far since November. It was slow, but it was such a joy to be out. The path was plowed and packed down. The woodpeckers were raising a happy racket in the trees by the river. There were lots of runners and walkers and tons of dogs. It made my heart happy.

I was about to close out this entry when Boo suddenly got to his feet and headed into the dining room. Mercury, Eliyah and Robert were eating steak. Boo sat down and looked interested. I cut him up a few bites of steak which he slowly ate. He downed this with another glass of Gatorade and headed back into the bedroom. I will keep the steak on the table in case he wanders back in. I have found keeping foods out that he can just graze on at will seems to work fairly well. Too much food offered at once, and strong smells will cause him to flee the scene, but little bites at a time are acceptable.

A huge thank you to my running group, TCRC, for giving Boo a huge supply of technical race t shirts to wear. He seems very comfortable in them and has not been tempted to mess with his port. Thank you also to people who have sent me food, dropped food off for me, or loaned me the charger to their Garmin when i could not find mine. I hope everyone has dug out from the last 3 days of snow. Smile at people and be good humans.

Chemo and garlic fries

Boo continues to amaze me. I have watched him go through procedures that would bring grown men to their knees, and he is still smiling. He and I are very happy to be home from the hospital for a couple of weeks. The dogs and cat had much to tell me. Food is a bit of a challenge. He feels nauseous a lot of the time. He has drugs that help combat the nausea, but it is hard to get him to even open his mouth. Our best bet is an anti-nausea drug that dissolves on the tongue. If I give him that in the morning, and then follow up with some hydration, he seems to do better.

All his life, Ravi has loved sweet things. This has come to a sudden and complete stop. He is now all about the salty and the savory. Foods that he has happily devoured are garlic fries, burritos, cheese sticks, queso without the dip, and assorted drinks, either sodas or Gatorade. No real interest in popcicles or ice cream. The nurse told me to let him eat whatever he wants to and to try and stay on hop of the nausea and the hydration. We go in to labs tomorrow and just have his team see how he is doing. I am a bit worried as we have a major storm rolling in tonight, but we will drive carefully and take back roads. Fortunately, the hospital is only 4 miles away.

Thank you all so much for your warmth, your prayers, your good vibes, your white light. We can feel them. A dear friend just sent me an amaryllis bulb which I planted and put with my other plants. Green growing things make me happy. The amaryllis is a good sign of new life. I will keep you posted as I am able. Boo reminds you to be good humans. Peace.

Curveballs

Our world has turned upside down in the past three weeks. On December 8, Robert and I noticed a lump on Ravi’s left shoulder. Fast forward a day, we found out it was a tumor. Suddenly, we were in line for a biopsy and PET scan. In short, he has osteosarcoma, which has spread to his spine and his lungs. We started an aggressive chemotherapy regime this last Tuesday. He and I were in the hospital for three days while he got a port, started chemo, and had lots of anti-nausea meds and electrolytes pumped into him. We were released yesterday morning. Both he and I are enjoying sleeping in our own beds without any incessant beeping noises in the background or having vitals checked every few hours. Mostly, he just wants to sleep. He did eat some last night and we got meds into him. This morning has been really hard. I got an anti-nausea pill under his tongue and a few syringes full of Gatorade down his throat. I still need to get the rest of his daily meds and his pain killers into him. I know if we can get on top of the hydration, he will feel better. I am really hoping we do not have to go back into the hospital to rehydrate him.

What does life look like from here? Good question. He had his first round of chemo. Now he has two weeks at home to rest, going in for labs twice a week. On January 16, we check into the hospital for at least 72 hours for his next round of chemo. We will do that for three weeks, then have two more weeks at home. This will continue probably until March, when his surgeon removes the tumor from his humerus. He will be on rounds of chemotherapy for nine to twelve months. His oncology team has said he may go to school whenever he feels up to it, and as soon as his port heals, he can begin taking his beloved baths again. I am trying to retain any sort of normalcy I can for him. I am asking if anyone is to come by the house, please wear a mask, wash your hands, and if you have any cold symptoms, come back another time when you are healthy. We love visitors, but not germs!

Robert has been amazing. While I have been in the hospital with Boo, he has been taking care of things on the home front, running errands, bringing me food, and just being a constant source of reassurance. Mouse and Eliyah are at home and taking care of the animals. Mouse is loving their studies at OSU and had a good first semester. Though I miss them when they are gone, they are having a great time at college. I am curious to see what adventures they get up to this spring.

Through all of this, Boo has been a trooper. He has not cried or complained. I have yet to see him smile today, but he was smiling and cooperating through some hospital procedures that would have brought most adults to their knees. He reminds you to be good humans. We happily solicit and accept all good vibes, prayers, white light, or whatever you have to send our way. Positive energy is always welcome. We wish you the best in the New Year and we will be in touch as we are able.

Midwest Special Services

Boo Bear and I had the best morning. We visited Midwest Special Services, a day program for adults with disabilities. From the start, we both loved it. The vibe, as soon as you walk into the door, is the same vibe we always have gotten from his schools, Bridge View and Focus Beyond. The building is large and airy. There is an art studio, a boxing gym, a place for karate, and lots of breakout rooms for music, work, socializing, etc. All the clients we met were eager to meet Boo and wanted to chat with him. Most of them have been attending MSS for years, if not decades. His tuition would be covered by the CADI waiver. Transportation would be covered by Metro Mobility. Boo used Sam to greet people and to say that he liked it there. He also appropriately said goodbye and that he was ready for lunch.

I am waiting to hear what the wait list is for a place like this. Fortunately, we applied 8 months in advance of when we would like Boo to attend there. Best case scenario, Boo would graduate from Focus Beyond in June, have a couple of weeks off to relax, and then begin at MSS in July, when his new CADI waiver kicks in. Some of the places I have visited were really depressing, they seem more like warehouses for adults with disabilities than a place where they are really cared for and challenged to be the best that they can be. I would never put Boo into such a program. I would keep him home and figure out a program of my own.

Currently, both Boo and Robert are a bit under the weather. Neither one has covid. Robert has a yucky cold and Boo just seems really tired and does not want to eat. Since he is not eating, he is very low energy. So, right now I am just trying to keep him hydrated. He seems happy enough, very smiley, just rather floppy. The dogs are thrilled that they can camp out of his bed. Not a bad choice for a cold November day. If he perks up by tonight, we have an adaptive music class sponsored by parks and recreation. If he does not perk up, we will stay home and relax. November is Epilepsy Awareness Month. Boo celebrated this by being a month seizure free. What a good way to celebrate!

I hope you all had a wonderful Thanksgiving. I hope you all stay healthy and warm. Be good humans. Peace.

Sam Speaks

Boo has had a good few days, though is a bit tired from all the festivities. He did enjoy Thanksgiving a lot. He bopped in and out of his room to sample all the food, make his presence known, and then would retreat to the sanctuary of his little den. The day before break, I got the sweetest note from teacher Rosalind. She wrote, “If Boo is not hungry when he gets home today it is because he had a great big lunch! He was still hungry after his first chicken leg and he went to the cafeteria staff and used his Sam to say ‘I AM HUNGRY’. They gave him two more chicken legs. Then we had a late afternoon feast, and he previewed the best of Thanksgiving. He loved the Children’s Theater performance today. Happy Thanksgiving. Wishing you a wonderful weekend. May you all be well and have a wonderful time together.” I am so happy Rosalind is his teacher and that she shares with us what is going on in his day-to-day life when he is away from me. Rosalind, and all the wonderful teachers at Bridge View School and Focus Beyond are why we need to pay teachers and paraprofessionals a better wage.

Today he was out with Peter and got pizza at Carbone’s. He is now happily tucked up in his room, chatting with Sam and watching Sid the Science Kid on his iPad. Tomorrow, we go to visit Midwest Special Services, to see if this would be a good fit for him next year. In the evening, we are going to a parks and recreation music class and sing along. We are looking forward to both.

Yesterday, he had a Special Olympics pizza party to celebrate the end of the season. When he woke up his eyes were not tracking well and he seemed very, very tired. He enjoyed the pizza party and the bowling after but was not at all interested in food. He was acting like he does after he has a seizure, but neither Robert nor I saw or heard him go into one. Usually, he lets out a loud moan before a seizure begins. Though I have a baby monitor in his room, I did not hear any sounds from him all that night. I suppose it is possible that he had a small seizure in his sleep, and I just did not hear anything. To my relief, he seems perky and back to normal today.

I hope you all had a wonderful Thanksgiving. Wishing you a blessed and contemplative Advent. Be good humans. Peace.

Thankful

Hello, friends. This fall Boo Bear joined the South Region Stars Special Olympics bowling team. Unlike the team he was on in the past, this is a team of all adults, much of them much older than Boo. From the start, he has loved it. The team is inclusive, welcoming, and enthusiastic. They practiced every Saturday morning this fall. Boo has come to love these Saturday events. We pick up his best buddy Alissa, drive to the bowling alley and spend 90 minutes rolling balls. Boo is even more happy that his daddy has joined us in these adventures and turns out to be one mean bowler. Boo uses a ramp as an assist, but has become very adept at picking up his own ball, setting it on the ramp and sending it down the chute. Over the course of three months, he has gained both strength and confidence. Bowling also comes with French Fries, other yummy snacks and lots of encouragement from fellow bowlers and their parents and house mates. After we have bowled two games, we always stop by McDonalds for more yummy treats and friendship.

Last Saturday was the state bowling meet at the local casino. This as an entirely new venue with lots of new sounds, smells, people, a new lane, a new ball, and different bowling shoes. Mr. Boo rose to the challenge. He and I bowled two games, and he earned a third-place medal. At first it did not sink in what he had done. We were standing on the podium with the two other winners and Boo was looking all around. There were lots of light and noise, people trying to get our attention and a million distractions. He was looking everywhere except at the camera or the official presenting the medals. The official hung a bronze medal around his neck and mine and shook our hands. Boo looked down at his medal and I could see a new expression cross his face. Suddenly, he understood that he was standing on this podium and receiving this medal because he had done something really hard and that was worthy of praise. A huge smile crept across his face. I have two pictures from this day that I treasure. The first picture is of Boo realizing the importance of what he had done. The second is both of us beaming at each other. If you want to take a peek at these incredible pictures, check us out on Facebook or Twitter, which many of you have. In short, it was a wonderful day. A day we will never forget.

I think that all the excitement and stimulation wore Mr. Boo out. I know that I was certainly out of spoons. It was a wonderful experience, but a lot to take in all at once. Boo was happy to go to school today, but when he got home this afternoon he crawled into bed and took a three-hour nap. I texted his teacher to see how his day had been. She said he had a good day but was very tired at the end of it. Eventually, he crawled out of bed, had some supper, and then crawled back in and resumed sleeping. I gave him his evening meds and left him to sleep it off. We have a houseful of guests coming for Thanksgiving dinner, his sister is home from college, and he needs all his energy for the upcoming days.

Unlike other seasons, the state tournament does not mark the end of bowling. For these athletes, bowling is a social occasion that they are not willing to give up, so we will continue bowling until Christmas. In the winter, athletes can ski or play floor hockey. I cannot see that Mr. Boo would really enjoy either of these sports, though he would probably like to watch. We are going to try our hands, or our feet, at snowshoeing. Later on in the new year, comes basketball and track. Boo loves to watch basketball and loves to participate in track and field. This will be a great opportunity to gain some more skills and make some more friends.

Happily, it has been over a month since Boo has had a seizure. The Fycompa seems to be doing its job. It is not without side effects, but the side effects are definitely not as harsh as some of the other drugs he has been on. I am quietly hopeful.

Thank you all for your support and following the adventures of Mr. Boo. He has had a great fall season. We hope you have a wonderful Thanksgiving with your friends, families, and loved ones. We will be in touch, and until we do, be good humans. Peace.

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