Tag: chemotherapy

International Childhood Cancer Day

Dear Ravi,

As you know, I stopped in to see you earlier this morning. I hope you could hear the happy chaos of my Sunday school class down the hallway. They were few in number today but made up for it in enthusiasm and sheer noise. Today is International Childhood Cancer Day, a day that we reflect on the living and on those who have passed. We also reflect on the lifelong afflictions that cancer survivors live with. Even when the chemo is over, the bell is ring, the parties have stopped, the symptoms from chemo remain. More often than not, survivors suffer from permanent neuropathy, inability to digest many foods, neurological problems, and osteoporosis. These are the quiet symptoms that are rarely said out loud. After one rings the bell, one’s family and friends except everything to return to “normal”. Ravi, there is no normal after that first scan shows a tumor. Life is turned upside down, capsized, and that ship will never sail easily again. That first scan marks the end of an era, an era where cancer patients were “healthy.” It’s not just the vomiting and hair loss. A cancer survivor may seem alright on the outside, but there are a myriad of health problems on the inside that they will battle for the rest of their lives. My love, you did not survive long enough to suffer the aftermath of chemotherapy. You lived with cancer as long as you could, and then you gracefully and peacefully passed away in my arms. You ascended directly into heaven, leaving your daddy and me to try and comprehend a life without you. Life still does not make any sense. Minnesota is still in turmoil. Our immigrant neighbors hide in their houses. Children are afraid to go to school. Parents are afraid to go to work or to buy groceries. The Whipple Building has become a transport station where innocent people are sent to concentration camps. These are bleak times, but the brave people of our state are fighting back. We march, we protest, we bring aid and food to our neighbors. We call our representatives. I have never been more heartbroken for my state, but again I have never been so proud to be a Minnesota. I moved here 27 years ago and set down taproots. I raised you and your sister here. You are grounded here.

It is a sunny day. Parkas are not needed. Two of the dogs are on the back patio, sunbathing. Gloria and Nikki are inside sharing a sunbeam. This is a false tease, a false spring. Temperatures will drop this week, and there is a chance of snow. Nonetheless, we have off shaken off the deep freeze that we felt down to our bones a few weeks ago. The ice on the sidewalks have melted and the bird songs sound a bit louder. With spring, hope will come.

I miss you, Ravi. Please pray for your sister, Stirling. She has made some terrible mistakes, and I fear that her wellbeing in on the line. She was not there for you during your illness or even at your funeral, but she is still family and we pray for reconciliation. Pray also for peace and victims of fear, injustice, and oppression. Remember your baptismal covenant. You and your sister were both baptized into the body of Christ and that will stay with you forever. You are now one of the company of saints and angels, and martyrs. I will continue in your light and in your memory. Right now, Daddy is a juggling with some dear friends. I am sitting in my reading chair, in the sunshine, reflecting on the amazing life that your lived. Love you forever. Mom.

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.