Tag: life

Time Passes

Ravi, it has been nearly 4 months since we lost you. Time and space are funny things. Sometimes, I feel so close to you. Other times, all I can feel is grief. As a bus aid, I pass St. Clements Church twice a day. When the bus goes by, I give you a little wave, a thumbs up, and blow you a kiss. This is my twice a day ritual. Somehow, you keep me grounded as I head into the happy chaos of work. I feel your presence most strongly when I am on the playground at Bridge View School. Years ago, Principal Lisa and I poured concrete for a handicapped accessible playground. Since then, over a decade of students have enjoyed this play space. Like y0u, many of my students love to swing. Some can pump themselves into the air on their own. Others are happiest when I I push them high into the sky. It is then and there that I feel your presence. Often, while I am pushing a student, the sun peaks out from behind a cloud, and I know that you are saying hi.

The world is crazy right now. Basic human rights are being taken away. You would not understand this scary new world, and if you were here, I would do my best to shield you from it. You and I were so proud when you cast your vote for President Biden 4 years ago. We rejoiced when he won. Immediately after his administration ended, the world became a much darker place. The Medicaid that paid all your bills the last 22 months of your life is in danger of being taken away. The cancer research that prolonged your short life is frozen. I miss you deeply, but in a way, I am glad you are not part of this terrifying new world, but rather, hanging out with Jesus, and all those who have gone before.

Remember Mr. Rogers? His mother once told him that when things were scary to look for the helpers. There are helpers, Ravi. There are brave men, women, and transpeople who are standing up for what it is right and good. The Right Rev. Budde preached love and acceptance from the pulpit of the National Cathedral. She was the same person that offered the body of Matthew Shepherd sanctuary. There was no safe place for his body to rest until she had him interred at the Cathedral. I hope that you and Matthew and all the saints are dancing in heaven.

Boo Bear, I miss you more than mere words can express. Our house misses your energy. True, we have dogs and a cat and a hedgehog, but we miss your vibrant autistic energy. When I wake up in the morning, first thing, when I am in that state between dreams and reality, I believe, for a fleeting second that you are still here. Then, reality hits me like a freight train. Though life is hard and scary right now, I will continue to show up for you. Your daddy and I will be two of the helpers. Ravi, you were a good human. It is now the job of the rest of us to be good humans. I love you to the moon and back. Peace

Scan Anxiety

Scan anxiety is the extreme anxiety caused by an upcoming scan to see if chemotherapy, or radiation, or surgery, or all of the above is working. Ravi had a PET scan last week. Though I told him that we were going to go to the hospital to take pictures of his insides he remained mostly chill. Robert and I, on the other hand, were a hot mess. I spent many nights pacing the floors and praying fervently for good results.

Ravi has to be sedated for scans as he is wiggly kind of guy. This means, he has to fast before scans because one cannot eat before sedation. We were scheduled to check into the hospital at noon, the scan was at 2:30. This is a very long time for a hungry guy to go without food! On February 16, we let him sleep as late as he wanted. We got him up, dressed, and to the hospital. We had stuffed him with food the night before, so he did not appear to be that hungry. It had snowed 6 inches the night before and the roads were alternately slushy, icy, and impossible. We crept our way to Fairview Hospital going about 5 miles an hour. We checked in without incident but soon discovered that everyone was running late. We were left to wait in a huge waiting room where no one besides us was wearing a mask. Unlike the waiting room at Children’s where no one is allowed to eat, in case a hangry toddler grabs your snack, it seemed that everyone here was eating! We did our best to distract Ravi. Finally, we were called into a room. We met various nurses and doctors. Ravi was changed into a gown, and we waited some more. The PET scan machine is in the basement, which is always cold. We were worried about this as the last few scans he had, due to being cold, his brown fat lit up and obscured the necessary data. This time we had him swaddled in blankets, a special blanket called a Bair hugger blew warm air on him, and to top it off was his prayer blanket from our church knitting ministry. He was quite toasty! An hour before the scan he was injected with a dye that indicates where the tumors are. The dye has glucose in it, and cancer cells like glucose. The glucose will cause them to light up on the scan. The less lit up areas one has on a scan, the better.

The scan itself only took 15 minutes. Robert and I retreated to the waiting area and cooled our heels. Half an hour later we were called back to recovery. Ravi takes a long time to wake up from anesthesia, so we were there for another hour. Eventually, we got him up, dressed, and out the door. We returned home, with a stop by Wendy’s, ate dinner and collapsed. Through all of this, Ravi was a trooper.

Later that night I checked in on My Chart. The notes from the scan were there, but I could not make sense of all of them. It seemed that the fungal lesions were mostly resolved and that the lung nodules were smaller. I could not figure out the rest of the document. I spent a long night wondering, waiting and praying. At 8am sharp, I got a call from our marvelous oncology fellow who has worked closely with Ravi for 14 months. She said that the fungal lesions were mostly gone and that the nodules in the lungs were gone or diminished. The uptake of activity around the resected humerus was probably from the pressure sore that we have been battling for 2 months. She said it was hard to tell about the bony tumors as often then calcify and she was not sure how much of them were alive. In short, she was pleased. She said that she and Dr. Greengard wanted to loop in surgery, to take care of the lung nodules and radiation to get rid of the bony tumors. It is doubtful that the next few rounds of chemo will completely kill off these tumors, so they need more incentive to leave. Though Ravi still has a long journey ahead of him, she said that right now he is in a good place and the team is very please. I was literally limp with relief. My biggest fear was that the team was going to call, say that the chemo was not working, and they were giving up. I asked if this meant that Ravi could begin his 4th cycle of chemo on Monday and she said yes. I thanked her profusely, hung up and went to give Robert the good news. Per usual, Ravi was less interested in the results of his scan and more interested in breakfast, so I fed him and the pets and treated myself to a large latte.

Here are my take aways from the last week. Scan anxiety is very real. Adult waiting rooms outside of surgery are torture. The nurse said to me that if she ever won the lottery she would buy a PET scan machine for Children’s Hospital, so kids could stay in their familiar environment and not be in such a fast-paced environment where there is a crisis going on every other minute. I do not play the lottery, but if I ever come into several million dollars, I will happily buy Children’s Masonic Hospital a PET scan machine!

So, now what? Monday, we return to the clinic for chemo, or as I call it for Ravi, the strong medicine that will help your cells be healthy. Tuesday and Wednesday Ravi has PT, OT, and SLP. He loves these. Thursday, we have an appointment with the vascular doctor to look at his wound, which so far, is healing nicely. Then, we have follow -up labs with Dr. Greengard. On Friday, we collapse. This is a fairly typical week for us. We are at the hospital more days than we are not. Ravi takes all of this in good stride. He likes his care team. They like him. Having his port accessed and having labs drawn or fluids given does not faze him. As long as he has Sam, his AAC, his iPad, whom we call Sid, access to snacks and a comfy chair, he is a pretty chill dude.

Thank you so much to everyone who prayed, sent good vibes, or called to let us know they were thinking of us, it is very much appreciated. In Ravi’s journey, I really try to live in the moment and love him for exactly who he is and where he is at any given time. Scan weeks always throw me into a maelstrom of panic, and I am much less grounded. Currently, my feet are more firmly planted on the ground. Right now, Ravi is feeling good. He is eating well. His color is good, and he has some energy. On Monday, we will discuss next steps with his team. He still has a long journey ahead, but right now he is in a good place, and we are very happy. In the meantime, be good humans and we will be in touch. Peace, Harriet.