Saturday, September 26, 2020

Saturday, September 26, 2020

Tonight's picture was taken in September of 2003. Mattie was about a year and a half old. Peter's parents gave Mattie this ride-on fire truck. Given that Mattie loved the color red and anything with wheels, he gravitated to this toy. That day, we took it outside for Mattie to try to ride it. He was a cautious fellow, so he wanted to touch it, walk with it, and push it first. He eventually tried riding on it. But for the most part, Mattie preferred playing with it, washing it, and pushing it. 

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

• number of people diagnosed with the virus: 7,055,279
• number of people who died from the virus: 204,112

Just when I thought the bites were done, I received these photos today from my dad's caregiver. As you can see my dad's ankle is very swollen and turning red. Most likely from all of his  scratching. When I left my dad on August 31, he had huge bites. Bites that got infected and he needed to take antibiotics. Naturally the goal now is to avoid infection. 

My mom took my dad to see the doctor again about the bites. The doctor feels they are flea bites. I have had flea bites before and they didn't look like this, to me they look like mosquito bites. When I was in Los Angeles and staying at my parent's home, I got bitten constantly in their yard. In fact, I did not need to spend more than five minutes outside, without coming back inside with bites. Ironically it is only my dad and I who are getting bitten. 

My dad has two caregivers. Only one of the caregivers writes to me each time she visits. My dad's physical therapist also contacts me after each visit. I really appreciate this level of communication, because it helps stay informed. Which is so important since I am thousands of miles away. 

Rather funny that I would take a photo of a bus! We were walking Sunny today, and this bus caught my eye! Mainly because it looked like a classic and not modern. So I did some digging on "Continental Trailways." Turns out this is one of the SILVER EAGLES (which were in production in 1958). 

The Eagle was a make of motor coach with a long and interesting history. During a period of over four decades, some 8,000 Eagle coaches were built in four countries on two continents. The coaches were a common sight on American highways and were strongly associated with Continental Trailways for over three decades.

Sunny on his walk today! No matter where we go, Sunny gets attention. Many people stopped to tell me that we have a beautiful dog. 

When we first got Sunny, he would jump on our bed in the morning. Looking to be with his family, until we woke up. Now that Sunny is older, he has a harder time jumping up. So Peter is working on a step solution for Sunny. Peter bought wood and has his saw and drill out. This will be another Peter Brown original in our home, as Peter has built me many things from a step stool for Mattie, a kitchen cabinet, a tv stand, and the list goes on. He has great carpentry skills, which I believe he learned from his grandfather. I can't wait to see Sunny's reaction to his new stair case!

Friday, September 25, 2020

Friday, September 25, 2020

Tonight's picture was taken in September of 2005. Mattie was three years old and doing one of the things he loved doing.... building! Mattie gravitated to Legos very early in life and I can't tell you how many things he and Peter built together over those 7 years. When Mattie was alive, our home was filled with boxes, blocks, toy cars, trains, and you name it! It was a very hard adjustment going from such life and activity, to nothing. In fact, it took Peter and me years to adjust to this unexpected change in our home environment. So much so that it wasn't until around year five, after Mattie's death, that I began evaluating things around us at home and either donated them or packed them up. 

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

• number of people diagnosed with the virus: 7,020,967
• number of people who died from the virus: 203,481

I took Sunny for a walk today in the city. Can you see why I would prefer going to Roosevelt Island? On the Island, I escape the reality that is all around us. The graffiti, homelessness, and crime around us have sky rocketed. It is a very sad commentary given the beautiful area of the city that we reside in. This encampment is practically on the campus of the George Washington University.

In the age of COVID, it is very evident how unsanitary our streets are. Don't get me wrong, I have great compassion for those who are homeless, but I think supplying tents is not the answer. The current solution isn't working, and at the end of the day, we are not helping residents who are homeless or those of us who pay taxes to live here. 

Washington, DC has beautiful parks. But every park is filled with tents and homeless residents. The mental health needs of these individuals are off the charts and one would hope for better in our nation's Capital. 

Meanwhile, I spent a good portion of the day tuned into educational videos and trainings in order to renew my mental health license this December. I will be doing this for the next couple of months. Between conferences being canceled and my two trips to Los Angeles, I lost focus on my continuing education requirements. 

One of the trainings today involved counseling clients who are suicidal. It was informative and certainly interesting to hear about the tasks therapists should be cognizant of when working with clients. Such as the importance of developing rapport and working collaboratively with the client. Within the training series, was an interview with the therapist and a client who was actually suicidal. The interview was supposed to model for the audience the tasks and content the therapist had just lectured us on. Needless to say, I found I learned a lot, and I reminded myself once again, that I do love learning and exploring new ways of thinking.

So that was a plus, but on the other hand, I couldn't help but put myself in the client's shoes. The woman being interviewed had recently got divorced because her husband abandoned her and their 6-year-old daughter. In the process he spent down whatever money they had, so the family was bankrupt. The therapist did a good job building rapport with this woman, but then he seemed to forget his human side and jumped into what I call "the researcher/educator." He told her that it is known that people can be very down and depressed, but then all of a sudden BOUNCE out of it. I listened to him and I wanted to throttle him, so I think he should consider himself lucky that this client was kinder than me. She did however correct him and told him that made NO sense. 

Why am I writing about this? I guess it reminded me of my experience with grief and loss. After Mattie died, every one wanted me to go for counseling. One friend basically said I needed to be "fixed." I tried ONE support group session, and I never went back again. In fact, one negative experience can cloud the whole process. If we feel that others don't understand us, or we are being judged, or compared.... then shut down happens. I do think understanding the research on loss, grief, depression (pick a topic) is crucial for effective therapy, but I also know that in some cases you only get ONE chance to build a connection with someone who needs help. A connection can't be made when you lecture someone on the research or how other's with similar circumstances typically feel or think. 

I have my education, I do my continuing education, but I also have my life experiences. Experiencing childhood cancer with Mattie and then his death, have given me personal insights into trauma, loss, and depression that in many cases far exceed what someone could possibly infuse into my head. What would have happened years ago if the first grief support group session I attended was helpful? I don't know, I will never know. But to this day, I can still remember that horrible session, and the anger I felt about it. Basically the tasks this therapist talked about today in the training.... rapport and collaboration, were not felt in that grief session back in 2009, and therefore myself, Peter, and the other parents in the group NEVER returned. 

Thursday, September 24, 2020

Thursday, September 24, 2020

Tonight's picture was taken in September of 2005. Mattie was three years old. As you can see, Mattie loved playing on our stair case. To him it was like one big jungle gym. Perhaps all kids are this way, as I remember doing the exact same thing in the house that I grew up in. The joy of climbing. 

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

• number of people diagnosed with the virus: 6,996,639
• number of people who died from the virus: 202,563

Yesterday was a horrible day. When I got home from the hospital, I took to bed. I was miserable and in terrible pain. The pain meds did not even help. I wasn't sure what was worse, the intense cramping or the fact that when I urinated it felt as if I was passing shards of glass. Needless to say, my trusty companion, Sunny, was on the scene!

I was so concerned about the pain, that I text messaged my doctor last night. She called me and we spoke about the issue. It turns out that my urination issue was NOT a common side effect in woman who have had a hysteroscopy and D&C (to remove tissue for analysis). My luck! The doctor thought I was perhaps allergic to the prep solution that was used to clean the area prior to operation. It turns out she was correct.  

In addition to feeling horrible internally, the operation left me with a black and blue ear lobe, marks all over my body where probes were attached to me, and swollen cheeks. Even today, my face aches if you touch it. 

I received two calls from the hospital today, as a follow up regarding my procedure yesterday. The second caller got a mouthful. Turns out that another patient also complained of a burning sensation from a procedure yesterday, and I mentioned what my doctor had stated about the prep solution. I also told this caller that at NO time yesterday did anyone ask to see my ID. Even at registration. That seems like a big security concern!

Thankfully, last night I was able to sleep and I woke up feeling better than yesterday. Which is a blessing, because yesterday the pain was over the top. 

Yesterday I was unable to do anything. So the fact that we walked on Roosevelt Island today was a big achievement. Not to mention a treat. Of course no visit is with a deer or two. 

We even saw three wild turkeys in a tree. Seeing turkeys on the Island is rare. I can count on one hand the number of times I have seen them. The very first time was close to when Mattie was diagnosed with cancer. So I hate to say it, but I attach seeing these feather friends on the Island with cancer. 

Sunny loves his walks! He also loves having a water break, sitting, and checking out the activity around him. 

Not the best photo, but this was a young buck. With antlers!

The resident Great Blue Heron! 

Wednesday, September 23, 2020

Wednesday, September 23, 2020

Tonight's picture was taken in September of 2005. Mattie was three years old. This was classic Mattie. He found a big log and decided it was interesting. So he picked it up and carried it near to where we were sitting. He then went onto weaving the log into a play scheme. Mattie was great at embracing the gifts of nature and encouraging me to share in his enthusiasm. 

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

• number of people diagnosed with the virus: 6,921,817
• number of people who died from the virus: 201,459

What a day today was! I got up at 3:45am, so that we could leave the house at 4:30am. My check in time at the hospital in Baltimore was 5:30am. Honestly NOT a good hour for anyone. It takes a good hour with no traffic to drive from Washington, DC to Baltimore. But we made it in time and clearly had no trouble parking at the hospital. 

When we arrived, I was instructed to enter the hospital using a specific door. The nurse who called me last night, suggested that Peter come inside with me, until I had to go back to the procedure area. When we arrived at the door, there was a line of people outside. Patients trying to get in. If the sun was up, standing outside wouldn't have been a problem. But it was dark at 5:30am, and all of us were freezing. Not a good way to start off a visit to the hospital. Especially if people on the line may have been worrying about their health or pending procedure. 

Once we got inside, we had our temperature checked and were directed to the registration department. Which was a smooth experience. Once through registration, we took the elevator to the 4th floor. It was at that point, I said good-bye to Peter and was shuttled back into a room. I can't tell you how many nurses, residents, and assistants I met today. It bordered on ridiculous. I thought Mattie's hospital was bad, but this was ten times worse! Regardless of the hospital setting, they all do a poor job at requiring their staff to introduce themselves to patients. Wouldn't it be nice if someone came in and said, not only their name, but what department they are in, their title, and what they were going to be doing with you today? This common courtesy makes a huge difference and it is the first step to receiving quality psychosocial care. But honestly medicine has a long way to go, as there is a lot of verbiage about holistic care, and not a lot of action. 

The first three women I interfaced with today, aggravated me and stressed me out to no end. Why? Well one insisted I needed a pregnancy test, despite the fact that my internist felt it was unnecessary. She then handed me pre-sealed wash clothes and told me I had to use them all over my body. The manner in which she introduced this to me, did not sit well at all and I told her as much (note: I never saw her again during my visit). The second nurse greeted me by saying, I am here to start your IV for a hysterotomy. REALLY? That was news to me and had to correct her as I was NOT getting a hysterotomy today but a hysteroscopy. Then the third nurse was from the sedation, but she is in training. If this were Mattie, she wouldn't have made it passed the door to the room. I would have STOPPED HER! I understand health care providers need training experience, but patients should be alerted to this and asked permission. As I told her I did not want an IV in my hand. But too bad, I got it there anyway, after about three or four tries/sticks. By this point if she were working with Mattie, he would have been on the ceiling! 

Finally, after dealing with them and the HOST of other doctors who came in (the anesthesiology team literally sent four people in, the actual doctor and then three assistants), I was greeted by a nurse. This was a woman who understood the importance of conversation, of connecting with patients, and answering our questions. I learned a lot about her as she also learned about Mattie. Want to know how many other people (in the myriad of people who walked into my room) made a point to talk and connect with me? NONE! I mention this specifically because patients come in with past medical experiences, with medical trauma, with trauma in general, and therefore connecting with patients is not only the human thing to do, it is the vital thing to do. As capturing information and getting a snapshot of the patient helps tremendously at achieving a positive health outcome and experience.  

Fortunately the procedure went smoothly and NOTHING was found (no masses, polyps, or fibroids). That is the best news of the day. In the recovery area, I woke up disoriented. If you think about it, you start in one area, you are pumped with Versed and Propofol, and have NO MEMORY of being wheeled to a procedure room. Then you wake up in a completely different place. Literally I felt more stupefied today then when I woke up from both my colonoscopy and my utereroscopy and lithotripsy procedures. The nurse went over the discharge order with me and the symptoms that I would and could experience. I wish hospitals during COVID would do this discharge with not only the patient, but patching in by phone the patient's family member or caregiver. Because when a patient comes out of a procedure, it is very hard to remember anything and to ask intelligent questions. 

Before being discharged, I wanted to go to the bathroom. So I went, and it was very painful. I mentioned this to the nurse, but she did not seem concerned. However, the car ride home (1 hour) was the drive from hell. My bladder bothered me so much that I literally pulled out a Ziploc bag and urinated in the car while Peter was driving. As Peter says..... that's a first! If you know me, then you know I must have been besides myself to select this option. However, I was squirming all over the front seat in terrible pain, as I believe this procedure re-triggered my cystitis condition. 

As soon as I got home, Peter ran to CVS to fill my pain script! But why did we have to do that? At Mattie's hospital, they would have sent Peter to the hospital pharmacy to fill the scripts. So when I got in the car or when I needed that pain med, I would have had it on hand. I speak from experience! So this isn't a wish, it is a reality at some hospitals. 

I am hoping with time, the pain I am experiencing improves. As it is intense cramping and when I urinate, it feels like I am passing shards of glass. Makes you wonder why we do more invasive procedures in the first place? I know my answer is easy..... MATTIE. Mattie's journey showed me that if you have a symptom, follow up on it. Because it may actually be something. All medical concerns have to be taken seriously and having a doctor you trust is crucial. I am saddened my doctor moved from her hospital in Washington, DC to Baltimore. I am clearly following her and her expertise and I am grateful she gave me a clean bill of health today. 

Tuesday, September 22, 2020

Tuesday, September 22, 2020 -- Mattie died 573 weeks ago today. 

Tonight's picture was taken in September of 2005. Mattie was three years old and that day we took him peach picking. It was our first and last time we ever did this. We had a very good time that day and brought home plenty of peaches. A fruit we all loved. Back then we thought we would have  future adventures to the farm. Unfortunately life got in the way and then Mattie was diagnosed with cancer. I distinctly remember I did a lot of cooking and baking with peaches that summer. I even learned how to make jam and jar it. 

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

• number of people diagnosed with the virus: 6,882,969
• number of people who died from the virus: 200,477

My gynecological saga began on February 2, 2012 (three years after Mattie's death). Back then, I went to the hospital to have a pelvic cat scan, ordered by my urologist. The results indicated that my bladder was fine, but the scan revealed information I wasn't expecting! In that I had several masses along my cervix. In fact, the radiologist was so bold to say that they looked like adenoma malignum. A rare form of cancer. Needless to say, that pronouncement sent me spinning. Spinning for over a year to be specific. I consulted with several gyn-oncologists, because NONE of them agreed with the other on my course of treatment. Two of them said my masses were in a location that made it impossible to biopsy and another one said, that he could easily biopsy them. He in fact was wrong! My journey involved having to select ONE doctor (out of several I consulted with). This wasn't an easy decision, but I selected a doctor because I trusted her, and felt that she was making the right medical decision. This doctor instinctually felt that I did not have cancer and instead of moving to a full hysterectomy (as all the other doctors recommended), she said, do scanning once a month. If there were any changes what so ever from one month to the other, then we'd know that surgery was necessary. This was a risky decision on my behalf, but I felt this doctor was an expert in her field, what she was saying to me made sense, and she had a plan to monitor me. 

Fortunately I selected that doctor. As she was correct about my masses. They were not cancerous, as I was scanned for over a year. Needless to say, I was an emotional wreck during each scan day. All I could reflect upon was our journey with Mattie and I was afraid, like Mattie, I also had a rare disease. You can only imagine how Peter must have felt during that time period. I honestly thought I was going to die.

After going through this experience with my gyn-oncologist, we have remained in contact. I have referred friends to her and to this day, she still prescribes scans for me every couple of years when I report signs or symptoms that are unexplainable. 

Tomorrow, I am heading to Baltimore, for a hysteroscopy with my gyn-oncologist. Hysteroscopy is used to diagnose or treat problems of the uterus, it is one of the most common uses to find the cause of abnormal uterine bleeding. Given my history with this doctor, if I report anything out of the ordinary, she takes it seriously. So she has counseled me to do this exploratory procedure. Mind you I am expecting her to find nothing, but I believe in being proactive. Life has showed me why that is important. 

So we head to Baltimore at 4:30am, in order to get to the hospital by 5:30am (the time requested for check in). That's quite a time! To me no one functions well at 5:30am. I only hope my doctor does. 

If it is a weekday, we are most likely walking Sunny on Roosevelt Island. We came across a woolly bear caterpillar. They are often found in the autumn after they have left their food plants (variety of grasses and weeds) in search of a dark and sheltered spot where they can hibernate for the winter. Each fuzzy caterpillar becomes an Isabella Tiger Moth.

Mattie loved woolly bears!

While walking, Peter stopped me in my tracks. I did not see this deer, but he did! Apparently he saw her shiny eyes from the bushes. 

It was a Ranger Rick kind of day on the Island. We saw so many creatures! Including immature wild turkeys. In reality Sunny sensed something in the bushes. So I stopped. Peering back at me was a beady eye. I honestly wasn't sure what I was looking at until I saw the rest of the body!

A wonderful great blue heron flew into a tree near us! It is hard to believe that a tree limb can manage that bird's big body. 

One of Sunny's favorites... a blue-tailed skink. 

My favorite stop on today's journey. I was within feet of this deer. To me deer are beautiful, innocent, and graceful. When on the Island, it is a reminder that the world does revolve around us and it survives quite well without politics, bitterness and hatred between people. Walking on the Island is my escape from the chaos of our daily lives.  

Monday, September 21, 2020

Monday, September 21, 2020

Tonight's picture was taken in September of 2005. Mattie was three years old and as you can see we went for a walk and then had a picnic. Mattie loved the whole picnic scene! Better yet, he just loved being outdoors! Which was something he taught me to appreciate. 

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

• number of people diagnoses with the virus: 6,830,209
• number of people who died from the virus: 199,756

This is an image of our old Mattie Miracle newsletter template. As September is quickly turning into October, I started to sit down yesterday to mock up our newsletter which goes out monthly to over 2,000 supporters. 

It is challenging to write a newsletter monthly. It takes time, discipline and content. Over our ten year existence, we have changed our newsletter template a couple of times. But what I wasn't expecting was a FORCED template change from Constant Contact this weekend. Constant Contact is the provider we use to distribute our newsletters through email. Creating a template takes time and attention to detail, as the template has to follow our color theme as well as provide enough space for photos, articles, and links. Once the template is created, I use the same framework each month to generate a newsletter. Writing content is hard enough, but having to recreate the wheel is even harder. 

Yesterday I was all set to begin writing the September newsletter, when I discovered I no longer had access to the old template. Needless to say, I was not a happy camper. Today, I spent hours selecting a template and tailoring it to Mattie Miracle's theme and needs. These were hours I hadn't planned on spending. But I am happy to say it is coming along and we are on target to sending out a newsletter next week. If you are a blog reader, but do not receive our newsletter, and wish to, please email me (vicki@mattiemiracle.com). 

Sunday, September 20, 2020

Sunday, September 20, 2020

Tonight's picture was taken in September of 2005. Mattie was three years old and on the weekends, he and Peter would have canoe adventures on the Potomac River. The special part about that day, was I was invited along. Mattie loved being on the water and was intrigued by all boats. So much so, that he wanted a real boat of his own one day.

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

• number of people diagnosed with the virus: 6,791,815
• number of people who died from the virus: 199,479

The highlight of our day was about a four mile walk with Sunny. This is the first time in months he has been able to walk such a distance with stamina and strength. He has come a long way since April when he had knee surgery. 

While on the National Mall, we were stunned to see one cherry tree with blossoms. This is typically only seen in the spring! 

Seeing flowers and greenery always gives us hope. 

Guess who this is a painting of? That's right, it is Sunny! Peter did this yesterday during our virtual art party. I forgot to post it, but I absolutely love it!