Saturday, October 9, 2021

Saturday, October 9, 2021

Tonight's picture was taken in October of 2008. Mattie was in the hospital recovering from his first limb salvaging surgery. He was in a wheelchair and we could hardly get clothes on him. Which was why his pajama top was draped over him. Yet Mattie was spirited enough to want potato chips and to pose for a photo. In fact, Mattie went through several food cravings. One was for potato chips, but not just any chip! It had to be Utz. I have no idea why, but I remember Peter looking for these chips at 3am one day. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 44,311,548
• Number of people who died from the virus: 712,909

At 1am, I was awakened feeling horrible. I could feel nauseousness, I had the chills and literally my teeth were chattering. I knew I had to get up immediately and take Zofran for nausea and Advil for aches and fever. All these things enabled me to go back to bed, but unfortunately I have been out of commission all day. 

All of this is my reaction to taking Fosamax, for bone density. I had the same horrible reaction last Friday, and last weekend I couldn't move. The doctor felt this was a fluke and therefore told me to try it again. So I did, but after a repeat performance of last week, I am saying NO to Fosamax. I even wrote the doctor, who did not respond to me today. I honestly don't care what she says, I know that it isn't working for me and I can't go through the next several years being sick ever weekend. It is debilitating. 

I continue to struggle with 101 fever, heartburn, painful abdominal pains, nausea, and terrible aches and pains. Kind of like having the flu. I am returning to the couch and hope that tomorrow is better than today. 

Friday, October 8, 2021

Friday, October 8, 2021

Tonight's picture was taken in October of 2008. Mattie was home from the hospital and his buddy, JJ, the Jack Russell Terrier came over to visit. You will notice that one of Mattie's friends gave him a stuffed animal that looked just like JJ. So Mattie was trying to show JJ the stuff animal to get his reaction!

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 44,246,713
• Number of people who died from the virus: 712,171

It was another 6am morning! I can tell that I am one of the first people up on the block, given that the rest of the houses are dark at that hour. I get up so early because I have to factor in showering, dressing, walking Sunny, feeding both Indie and Sunny, and doing chores before beginning any work for the day. Given that Sunny is still recovering it takes much longer to get his new harness on and get him outside for a potty walk. 

Given that it is Friday, that meant that it was Fosamax day. I honestly did not know what to expect this week given the nightmare I had last week. So far the only symptoms I am dealing with are intense exhaustion and abdominal pain. The exhaustion is so bad that I can't keep my head up and I have to lie down. Which is a rarity for me! This reaction happens about six hours after I take the pill. My hope is that symptoms normalize as my body gets used to taking this medication. Otherwise, I feel like I am losing one day a week of productivity. 

One of the conference calls I had today was about providing psychosocial support to siblings of children with cancer. This is truly the forgotten group within a family system, and though non-profits do try to offer resources and support, the majority of the support is directed to younger children or those under 16 years of age. So what happens to the older teen and young adult sibling? Good question, it is an area ripe for research and the development of a framework for support. This issue was brought to my attention by two advocates. From my previous zoom call with them, I convened another zoom meeting today with the advocates and experts in the field. 

It was through this dialogue today that I learned that there is solid research on this issue and age group coming from Australia. After I got off the call, I started doing some searches and came across a four day piloted program that combines psychosocial support/education with recreational activities. Which seems like a fantastic combination for teens and young adults, as bonding with fellow siblings while doing an activity seems much more natural and normal than a structured support group model. Honestly after experiencing a support group myself after Mattie died, I know first hand that this model doesn't work for most of us. 

In any case, in the article, "The Development and Process Evaluation of PEER: A Camp-based Programme for Adolescents Impacted by Cancer," I learned about acceptance and commitment therapy, the proposed intervention used with adolescents in a camp setting. Frankly I never heard of acceptance and commitment therapy, so I had to look it up. Acceptance and commitment therapy (ACT) is an action-oriented approach to psychotherapy that stems from traditional behavior therapy and cognitive behavioral therapy. Clients learn to stop avoiding, denying, and struggling with their inner emotions and, instead, accept that these deeper feelings are appropriate responses to certain situations that should not prevent them from moving forward in their lives. With this understanding, clients begin to accept their issues and hardships and commit to making necessary changes in their behavior, regardless of what is going on in their lives, and how they feel about it. 

What I like about this is it encourages people to embrace their thoughts and feelings rather than fighting or feeling guilty for having them. Which I think is very important when dealing with a childhood cancer diagnosis. Because it is very easy to blame one's self for not handling things well, for compounding the issues and making them worse, or to feel guilt about all the people and things that you have ignored (or let down) in order to manage the treatment and side effects. 

It is intriguing to me as to why we don't address the needs of teen and young adult siblings in this country. When I ask non-profits who focus on sibling support as to why they don't include this age group, I get answers that range from 'they are a challenging age group to offer support' to 'liability and ethical concerns' for providing services. I don't doubt any of that, but what happens to these siblings in the mean time? For many siblings their needs and issues go unaddressed for years until either a crisis ensues or it becomes very challenging to function on a day to day basis. It's a sad commentary and it brings me back to the original problem. Our healthcare system is programmed to support only the patient and that is all insurance companies will reimburse for, and yet childhood cancer is a family disease, with long term side effects (both physically and psychologically) and if the family is floundering so is the patient!

Thursday, October 7, 2021

Thursday, October 7, 2021

Tonight's picture was taken in October of 2008. Mattie was three month into treatment, and it was before his first limb salvaging surgery! That weekend, Mattie's cousins came down from Boston to visit. We all met up in Alexandria, VA, by the waterfront. As you can see Mattie was trying to keep up. Yet despite this being before Mattie underwent surgery, he still moved gingerly. I suspect he did this out of fear and also because of pain. Nonetheless, Mattie's spirit was there and I think this photo says it all. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 44,140,108
• Number of people who died from the virus: 709,910

It was another 6am rising on the Farm! Thankfully I got up early because by 7:45am a team of lawn care people were knocking on my door. They were here to start trimming trees and removed two dead trees in the backyard. I had NO IDEA they were coming today. So the racket started early here! It is this day to day chaos that makes it impossible to sleep past 6am. 

This morning, I drove Sunny to physical therapy. The therapist is in Leesburg, so it is a 45 minute commute each way! But this therapist is worth it! Kirsty worked with Sunny last year when he tore a ligament in his right knee. This year it is the left knee. But at least I know I have a competent team to help Sunny rehabilitate. Because of COVID, I still can't go into the therapy room, so instead Kirsty sends photos.  

Kirsty actually came out to the car to help me get Sunny out of the back seat. He is a heavy weight to move alone. When she saw how difficult it was, she immediately fit him for this two handled harness. It is wonderful for me as it enables me to lift him from the front and back and also the harness makes potty runs much easier. The sling was a disaster and he was constantly soiling them. Not his fault, just not a good design. 

Kirsty calls Sunny "the professor." She calls him that because she thinks he is an old soul and is assessing her while she is assessing him! 

Apparently the rehab center has a Halloween photo display of patients! So today, they dressed Sunny up as a firefighter and they sent me the photo! I think he looks adorable, and don't worry he got lots of treats for complying!

Wednesday, October 6, 2021

Wednesday, October 6, 2021

Tonight's picture was taken on October 17, 2008. Mattie was three months into treatment and that day he went to his school's campus to meet up with a friend. While there, the football team was practicing. They all came over to take photos with Mattie and to do a team cheer. The reason this was all possible was because the team's coach was a big supporter of Team Mattie. In the midst of thorough chaos and living on the edge day to day, I also had the opportunity to see a side of people within our community that was awe inspiring. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 44,019,917
• Number of people who died from the virus: 706,861

My alarm went off at 6am, and I honestly did not know what hit me. It was dark outside and I felt like I just went to sleep. But then it hit me..... the painters are coming this morning and I have to pull it together. They arrived at 8:30am and so far have been at it for 8 hours. Mind you they are painting a small area. You wouldn't think it would take that long. Of course given that the walls were an olive green, it has taken multiple coats of paint to transform them to Medici Ivory. It is my hope that within a day or so, I will have a fully functioning laundry room and I  won't have to play multiple chairs. After all I can't keep much in that room now because first I had electricians in there for months, then I had people laying down tile, then I had people drywalling, and now painting. 

Yet I remember that only about a month ago, doing laundry meant going outside my townhouse, in order to get inside the complex's lobby, to an elevator that took me down two floors to the basement. Naturally I couldn't carry my laundry and detergent all this way, so I had a wheeled cart. For 27 years this is how I have done laundry, even with a baby in tow. That may sound overwhelming to some of my readers, but since I had done it for so long, it was commonplace to me! Though I have to admit that doing laundry in such a situation was a full day's exercise. Because there were only 6 machines that served many units. So depending on when you wanted to do laundry competition was fierce. Therefore in all reality, I have nothing to complain about. 

One of the highlights of my day is I signed up for an advanced grief counseling certification training program. This is about a 20 hour program, that I can take on my own time line, but something that I think will be valuable for me personally as well as in my work with Mattie Miracle. Typically I don't like being glued to a computer, but it does open up opportunities to learn, and gives you control as to when you can and want to tune in!

Tuesday, October 5, 2021

Tuesday, October 5, 2021 -- Mattie died 627 weeks ago today.

Tonight's picture was taken in October of 2008. Mattie was in-patient and his treatment was impacting his skin, especially around his eyes and nose. However, Mattie was given a gift of finger puppets. That was Mattie's first encounter with these kind of puppets and despite how awful he was feeling, he wanted to show his friend that he appreciated the gift. As you can see Mattie put a puppet on every finger and in the background you can probably see silk art and cards. We always decorated Mattie's room regardless of the season!

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 43,943,065
• Number of people who died from the virus: 705,069

I had a hard time going to sleep last night, so I was up watching TV. At that hour, I was tuned into the Golden Girls. Something light, but look who joined me.... Indie. Indie is really Peter's cat, but when he isn't around she gets desperate for attention. 

Today was non-stop work, from the moment my foot hit the floor. I did everything from touch up painting, cleaning, organizing, going to the post office, getting Sunny's prescription filled, grocery shopping, vacuuming and even cooking. 

I am NOT in love with the oven in the house. We bought an oven thermometer because I knew the temperature was off. It can be up to 50 degrees off. But the more I cook with the oven, the better idea I have of how to actually cook something to completion. Tonight I baked chicken meatballs. Yes they are big, but in all reality I know of NO other kind of meatball. That is how my grandma made them. 

I also baked a blueberry lemon loaf. About a year and a half ago I went blueberry picking with Peter's family in Maine. I literally freeze the blueberries and then use them when needed. They are the best blueberries! In any case, I am cooking all sorts of things because I have to learn this oven. 

Meanwhile, yesterday Sunny's surgeon told me to let Sunny begin to start walking without the sling. That was a royal mistake. He collapsed twice and all day yesterday and this morning he refused to walk. I mean at all, so there was no going outside for potty runs. By this afternoon, I tried getting him up and out. It was painfully slow and I thought I would have to give up, but on our street Sunny could see two deer grazing in our neighbor's front yard. It was as if someone gave him a shot of adrenaline. Sunny snapped out of his depressed state and literally started moving toward the deer. He was walking on all fours! In a way those cute Bambi deer (yes they had spots on them) produced a Sunny miracle today. Managing Sunny's needs right now could be a full-time job, and add the house to the equation and I literally got nothing done today other than chores. Now to add insult to injury, the painters are coming back tomorrow to finally paint our laundry room. They come at 8:30am, and when I say there is no peace here, I am not kidding.

Monday, October 4, 2021

Monday, October 4, 2021

Tonight's picture was taken in October of 2008. It is actually a short video of the football team's cheer at Mattie's school. That day we were visiting the field and the team huddled up near Mattie. The team yelled out Mattie and he loved it! I remember this moment in time distinctly. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 43,822,552
• Number of people who died from the virus: 703,130

Since we moved in, Peter had taken two business trips. This week being one of them. He flew across the country for a week long meeting. That leaves me holding down the Farm, Sunny's rehab, and whatever else goes wrong here. For about a week, I felt that Peter's office had a funny smell. Since Indie's litter box was in there, I figured it was from the box. But I have been cleaning that box more than usual, and the smell still exists. It finally dawned on me today.... it's not the litter box. So I started nosing around and have determined the smell is coming from a toilet.... like a sewer gas smell. The goal was to keep the current toilets for now, but I can't handle this smell and my hope is the plumber can fix it. 

We have had so much electrical and plumbing work in the house that I have the personal cell phone numbers of both men. So I text messaged the plumber today and alerted him that we have a problem. He was scheduled to come next week anyway for a different issue, so hopefully this will be an easy fix. But I have learned nothing here is easy. 

With Peter gone, I see just how quiet and isolated it is outside the city. Certainly when I used to go away on vacation I sought out places like this, but living here day in and day out is another story. It is quite possible to never see a soul all day, unless I get into the car and engage with the world. I miss my view of the city, seeing people, cars, planes, and trucks going by. I miss seeing people doing their daily chores and my bird's eye view from Mattie's window, enabled me to tell what time of day it was from the amount of foot traffic passing by. 

Sunny had his two week follow up appointment with the surgeon today. She sees what I am saying..... this leg is recovering slower than the other leg (which was done last year). She said on physical exam, he appears to be doing well, and that I should start him on small leash walks. I got home and tried that! Big mistake. Sunny literally collapsed twice without me supporting him with a sling. So I tossed the leash and I am back at it with the sling. Sunny is not a light dog to be carrying, and his mind is telling him he wants to walk, but the body can't keep up. This makes for a very frustrating walk with him and given the weekend from hell that I had physically, trying to carry a 68 pound dog around is no picnic. 

On a completely different note, one of our researchers sent me the article below. I loved the title, and copied a portion of the abstract below that I felt was spot on. I am grateful that researchers are now enlightening the public that asking bereaved parents to move on and put grief in a box, doesn't work! Like so many others.... I am "parenting beyond the veil." Meaning the relationship I have with Mattie and my parenting role continues. In a different way, but it is very much alive. 

"Parenting Beyond the Veil": The Continued Parenting Relationship After a Child's Death Due to Cancer

"The parenting relationship continues throughout a parent's lifetime in spite of the child's physical absence, albeit in a different manner. This different nature of parenting is known as parenting beyond the veil. Bereaved parents continue to parent beyond the veil by engaging in meaningful activities, seeking activities that strengthen a deep connection with the child, and being open to comforting signs that enhance their continued relationship." 

Sunday, October 3, 2021

Sunday, October 3, 2021

Tonight's picture was taken in October of 2008. We took Mattie to the Inner Harbor in Baltimore that weekend to walk around, be by the water, and tour a railroad museum. We tried to normalize the weekend, but it was anything but normal. As Mattie was headed that coming week for his first limb salvaging surgery. In many ways, the first surgery was the beginning of a very bad psychosocial spiral downhill. Something that Mattie's treatment team did not prepare us for, but in all honesty, I am not sure they could have predicted Mattie's reaction. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• Number of people diagnosed with the virus: 43,681,594
• Number of people who died from the virus: 701,163

After I wrote yesterday's blog, the side effects from taking Fosamax increased. I developed muscle and bone pain in my neck, shoulders, ribs, spine, and fingers. I looked like I had a bad case of arthritis, and moving was painful, not to mention breathing was hard. If this was not bad enough, I was also dealing with intense abdominal pain. So it's been quite the weekend. But I am not shy! I wrote the doctor yesterday and today and have been reporting out all my symptoms, because if this is what I will experience on a weekly basis, I am not taking this medication. There would be no quality of life, because it literally seems to take three days to recover from this pill. It is 7pm on Sunday, and I am doing better, not 100%, but better. 

The highlight of my day was this! We made breakfast and sat outside on the porch for probably over an hour. Indie and Sunny were with us and the whole family was on the porch. I needed this time to ease into the day because of the pain, stomach issues, and extreme exhaustion that resulted from this medication. 

Later in the day, Peter helped me put up photos of Mattie and some of his art work in my office. My office is like a Mattie gallery!

I snapped this photo this evening so you could actually see some of the art work. The pictures on the left over the bookcase are pictures of Mattie creations. Mattie painted many ceiling tiles in the hospital's outpatient clinic and after Mattie died the hospital gave me the tiles. Instead of keeping the HUGE tiles, I took photos of them and memorialized them this way. Over the door frame, you will see three pictures. Each was a leaf rubbing Mattie did in preschool. The backdrop for each leaf rubbing was a painting Mattie created. So I combined the two to make this composition.