Tag: health

Hospice Survey…Really?

Sometimes, things that land in your mailbox are good, like a note from a dear friend. Sometimes, things that land in your mailbox are not good, like an overdue bill. Sometimes, things that land in your mailbox are just plain weird. Last week, I got a survey to fill out about the hospice care team that took care of Ravi in his final days. I did not fill the survey out for several days and was sorely tempted to crumple it up and throw it away. I finally decided to fill it out, as maybe it could help someone else.

Filling out the form was heartbreaking, as it took me through Ravi’s final week on this planet. I gave high praise to the nurses and aides who cared for him. I mentioned them by name and gave them exemplary marks for going above and beyond what they needed to do. The questions at the end of the form had me scratching my head. They wanted to know if I would use their services in the future. The options were: yes, no, or maybe. What I really wanted to tell them was that I sincerely hope I never have to use hospice services for a loved one again. The other question was: Would I recommend their services to friends or family? I had a sudden vision of my review showing up on Yelp, or some a social media page. Part of me was laughing, in a gallows humor sort of way, part of me was simply shocked. No! I am not going to recommend this hospice service to anyone that I know and love. I never want anyone to be in the kind of position where they are planning the last week of their child’s life. I never want a parent to go through the heartbreak that Robert and I have been through. Fortunately, there was a space at the bottom of the survey to make additional comments. I gave high praise to the nurse that walked us through that final, horrible night. I told the hospice agency that I was not going to recommend their services to anyone else as I am highly superstitious and do not want to pass on bad luck.

As I said before, many things pass through your mailbox. Some are good, some are bad, and some are just plain weird. I hope that somewhere in the universe Ravi is running free, cured and whole. I hope I do not get any more weird mail for a while. I hope that none of my readers get any mail of this sort.

I am going to pivot here. For years, this was a blog about autism and Ravi. Thank you to my dear followers who kept up with us for so long. Though I deeply miss and grieve Ravi, I do not want him to see what our country is on the cusp of becoming. I fear for our marginalized groups, the poor, those with differing abilities, those who are LGBTQ, those whose skin color may be different from my own. I will still talk about autism, and at times, osteosarcoma, as these are very important issues to me and to my family. But, as I pivot, I want to be a voice of hope, I want to be a voice of change, above all, I want to be a voice of kindness, especially to folks to whom kindness is rarely extended. Ravi is no longer with us, but his legacy will live on. I always fought for my offspring and for issues that I hold dear. I hope, my readers, that you will continue with me on this journey. Be a good human, do it for Ravi. Peace, Harriet.

Upcoming Boo News

Hello, friends, we gamely shuffle forward. Boo is still very sick and weak. We spend most of our waking, and many of your sleeping, hours coaxing fluids and formula into his GJ tube. I am now starting to see a pattern. He is most able to digest fluids and formula early in the day. As the day goes along, he develops a deep hacking cough, trying to get rid of the mucus in his throat. In the evening, he often vomits. A lot of the time the emesis is just stomach bile, but it makes him feel terrible. We are now giving him anti emetics every 8 hours and are hoping this will do the trick. He was seen at clinic on Friday and will be seen again tomorrow, on Monday. Though he is still very fragile, his team has decided to go forward with 6 more doses of radiation, beginning on October 3, ending on October 16. We would like to wait until he is stronger, but we are running a race against time. The tumors in his mandible and his C spine are still growing. The hope is that the radiation will give him some pain relief and also make it possible for him to eat by mouth again. It has been weeks since he has eaten anything orally, and this has greatly contributed to his depression. Thanks to Alissa, I am now in contact with a doctor at Mayo who does cryoablation. He thinks that Ravi might be a candidate to receive cryoablation to his jaw and that would provide considerable pain relief. Hopefully, this would let us cut back on the use of opioids.

Today, the plan is to get Ravi hydrated and fed and out of the house. We want to take him to Target, his happy place. We will put him in a Caroline Cart and push him around the store to his heart’s content. He needs to be out and about. Right now, he travels between his bed at home and the infusion chair on floor 9. We need to expand his horizons.

In the middle of all of this I discovered that I need not one, but two root canals. I have a crown that keeps falling out and another one that fell apart during Boo’s last hospitalization. If that that was not enough fun, I also nicked my right knee and developed MRSA. At first, I thought it was just a spider bite. Then I became unable to put any weight on the knee if I were kneeling. I went for an 8 mile run on Wednesday and it was miserable. I was slow, the knee was stiff, and nothing felt right. I could not get into my regular clinic for a week, so I did a virtual doctor visit. She looked at my knee and said it was cellulitis. She gave me antibiotics to take every 6 hours and said to try warm compresses. After three days it was clear the drugs were having no effect. My knee was red, swollen, full of pus and I felt terrible. I did another virtual doctor visit. This doctor took one look at my knee and said it most almost certainly a MRSA infection. She asked if I worked in childcare or in a hospital. I said no, but that I spent a lot of time in hospitals around children. She prescribed doxycycline and anti-inflammatory drugs. I took the first dose last night before I went to bed. This morning the swelling and redness has gone down and my knee is less stiff. I also feel much more energetic. She had said if things had not improved, I would need to go to an Urgent Care, but I no longer think that this is necessary. I will try a gentle run this afternoon, just to test out the knee and my new running shoes. My marathon to raise money for the Osteosarcoma Institute is in exactly one week. This will probably be my slowest marathon ever, and I don’t care. I just want to run this race. Due to Covid and a spinal fusion, I have not run a marathon since 2018. It is time! Though I ran all summer, I did not get in as many long runs as I would have hoped. Two weeks ago, I ran 20 miles, my longest run in 6 years. It was slow but felt pretty good. The plan for this week is to rest, eat well, foam roll, try to sleep, and get mentally ready for the marathon.

Thank you so much to everyone who contributed to #TeamRavi. Robert and I are overwhelmed by your generosity. My contact person at the Osteosarcoma Institute tells me that they have surpassed their original goal for donations in September. For the last days of September, and today is the last day, donations will be tripled. In case you have not seen the website, I am including it once again. https://osinst.org/herndon-fundraiser

Please go look at the site for no other reason than to see our favorite Boo Bear. Many of the pictures are from his Wish Trip to Duluth. We had such a wonderful 4 days away from cancer and treatments. At that point, he was strong, healthy, and eating with gusto. I hope and pray that he can feel like that once again.

Thank you all for holding us in your prayers. They mean more than we can express. Be good humans and we will be in touch. Peace, Harriet.

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.