Saturday, December 7, 2019

Saturday, December 7, 2019

Tonight's picture was taken in December of 2008. Mattie was home between treatments and wanted to play the piano. Mattie was musical and wanted to take piano lessons. In fact, I had selected a piano teacher for him and he was enrolled in lessons that were scheduled to start the fall of 2008. Unfortunately Mattie was diagnosed in the summer of 2008, and never had a lesson. Yet he would sit at our piano and would do his own compositions. How did we get this piano?

Well we had a neighbor, Susan. Susan was moving out and she got to know Mattie over the years. So before she left, she literally gave us her piano for free. Telling us that now Mattie (pre-cancer) could learn to play. 


Quote of the day: To conquer frustration, one must remain intensely focused on the outcome, not the obstacles. ~ T.F. Hodge

This is a photo of Peter's mom today. Can you believe that yesterday she had a major spinal surgery? Five hours long! Yet they got her up, she took a few steps and sat up for a while. I am sure sitting up felt great, after lying flat for five days! 

Tonight's quote captures how I am feeling about what is transpiring in Boston. Where Peter is, as it isn't just Peter impacted by his mom's accident. Peter has a brother and sister in law, who have opinions about next steps. Needless to say, we are not on the same page and at the moment none of us are talking to each other. 

But as Peter and I know all too well.... stay focused on the outcome and make the best decisions possible. We are good at totally factoring out noise, because unfortunately we know very well how to handle and manage medical crises. 

I had the opportunity to visit my friend Margy. Margy and I met on Facebook (in June 2015)! That's right! We did not know each other before this electronic connection. We had ONE mutual friend on Facebook and that is how we got connected. As Margy always says, we were meant to be connected. 

Margy was diagnosed with stage 4 ovarian cancer in January of 2018. This January, she will be fighting this disease for two years. Despite all that Margy endures each day, she is a amazingly positive, hopeful, and always displays great compassion and understanding for all of us around her. We had lunch together, cupcakes (of course!), exchanged Christmas gifts, and chatted for hours. 

Christmas friends!

Friday, December 6, 2019

Friday, December 6, 2019

Tonight's picture was taken in December of 2006. Mattie was celebrating Christmas in Boston with Peter's parents. There is a hill in front of Peter's parents home, making it a great spot to sled. Mattie was interested in sledding, but not without one of us. Once he tried it, he liked it, but never went on a sled alone. Mattie was an interesting combination of adventuresome but cautious. 


Quote of the day: In a time of crisis, the peoples of the world must rush to get to know each other. ~ Jose Marti


Last night I could tell Peter was besides himself. The neurosurgeon did not come and visit him and his mom as promised and basically he was getting no updates about when his mom's spinal fusion would be scheduled. The thing is Peter's mom was beginning to build up fluid in her lungs from being immobilized. Which of course would lead to pneumonia, fever, and antibiotics. All things that would disqualify her from being eligible right away to have surgery. So Peter knew he had a narrow window to get his mom this necessary surgery! 

As Peter said he did a "WWVD!" What does this stand for??? What Would Vicki Do? He had me laughing, but there is some truth to this! During Mattie's 14 months in the hospital, I knew how to work the system that would be medically advantageous for Mattie. Unfortunately what I learned is YOU HAVE TO SPEAK UP! In fact the loudest voice, sometimes gets the best care. 

With that, Peter wrote emails to his mom's case manager, the social worker, and even called his mom's unit at 1am..... all to press the issue and to demand that his mom get surgery today! It clearly worked, because when Peter got up this morning, the head social worker called him and was connected to the neurosurgeon's scheduling nurse. This doctor cancelled clinic appointments this afternoon, just to take on Barbara's case. 

Peter waited in this depressing waiting room from 1-6pm, during his mom's five hour surgery. A surgery that inserted rods and screws into her spine to re-align it and stabilize it. The doctor told Peter that a portion of the spine was 1cm away from severing her spinal chord. Honestly Barbara got a second chance on life. 

While Peter was in the waiting room, he befriended a family. Specifically a mom whose son came to the hospital with multiple head injuries and had been intubated (means a tube is put into your windpipe to protect your airway and help you breathe) since Sunday. In a crisis, people can actually bond and find comfort from one another. 

The mom I am talking about above, gave Peter this post it note. Peter shared it with me and it made me laugh. 

As of 7pm, Barbara was brought back to the Surgical Intensive Care Unit (SICU). The SICU is the multi-specialty medical care center for critically ill patients who require surgery or are recovering from surgery.

I am told that Barbara is no longer immobilized and can freely move. In fact, they are going to get her up and standing tomorrow. Rather miraculous and I can only hope that her pain will be managed well this weekend. As this was always a nightmare for Mattie post-surgery. 

Thursday, December 5, 2019

Thursday, December 5, 2019

Tonight's picture was taken in December of 2005. Mattie was three years old and we took him to Boston for Christmas. Regardless of the weather, Mattie was out and about in it. He did not get to see a lot of snow in Washington, DC, but he made up for it in Boston. 


Quote of the day: Losing your head in a crisis is a good way to become the crisis. ~ C.J. Redwine


Tonight's quote is spot on. I would say that with any life threatening medical issue, a crisis ensues. Especially for family members. In fact, it is hard to sometimes think rationally when placed in a very difficult situation, and you are worried that the person you love maybe dying or in pain. However, I would say that Peter and I now excel in crisis mode. We do because Mattie's 14 month ordeal with cancer, pushed us over the edge many days and nights, and forced us to keep it together, make smart decisions, take in information, but also to live one day at a time. In a crisis, living moment to moment is the best way to cope. In fact, when you are so mindful to the present moment, it is actually an amazing experience. You become solely focused of making the most out of the present. It is freeing to some extent, because you are not worried about what will happen at 5pm, or next week, or next year. Something we humans are programmed to do.... be forward looking.  

Though I remain in Washington, DC and Peter is in Boston with his mom, I am virtually there. Peter keeps me posted about everything and in the midst of the information he sends me, I do research into the issue or resource. Today's issue was trying to press the hospital to get Barbara on the surgery calendar. The operation rooms seem completely booked up this week and they view Barbara's case as stable. Rather hysterical, since she is immobilized and unable to move because movement could sever the spinal chord and cause paralysis. Peter was determined to put pressure on folks today and though I don't think Barbara will have surgery tomorrow, the hope is she will early next week. 

The big issue today is discomfort and the fact that Barbara's arm is swelling. It is swelling because of the IV in her arm. Infiltration occurs when I.V. fluid or medications leak into the surrounding tissue. Infiltration can be caused by improper placement or dislodgment of the catheter. So now she is scheduled for a procedure tomorrow morning to get the insertion of a PICC line.

A peripherally inserted central catheter (PICC), also called a PICC line, is a long, thin tube that's inserted through a vein in the arm and passed through to the larger veins near one's heart. A PICC line can help avoid the pain of frequent needle sticks and reduce the risk of irritation to the smaller veins in the arms.


Meanwhile, we are trying to focus on next steps and how things will proceed after surgery. With the given that we hope the surgery goes smoothly and effectively. Once Barbara is medically stable, the therapy team at the hospital will come visit her. She will be assessed by a physical therapist who will get Barbara up and moving and will evaluate how she is doing and basically what the next steps are in her care plan. A plan that could involve going to an acute rehab center (which is a more intensive option, as acute care will give her 3 hours of physical therapy a day for 1-7 weeks, with the goal of transitioning her back home) or a skilled nursing facility (which is in essence a nursing home, where access to physical therapy will not be as intense or frequent and her long terms goals may look different). Naturally either option is a possibility, it just depends on how well the surgery goes and Barbara's ability to move and manage pain. Given that she has been immobilized for a week is not good, because muscles can atrophy and this can impact her recovery timeline. 

Of course I did not mention Peter's dad in all of this. But managing his needs and where he should be living while Peter's mom in recovering is something else we are also juggling. Which reminds us once again, that when one person becomes ill, it affects an entire family system.

Wednesday, December 4, 2019

Wednesday, December 4, 2019

Tonight's picture was taken in December of 2002. Mattie's first Christmas. Peter's brother and sister in law were living in Washington, DC at that time. So we went over to their house for a family gathering. Mattie was very familiar with this jumpy seat, as we had one in his room. But this one was right in the middle of their living room. Mattie loved it because he could stand on his own feet and check out what we were all doing. That was the one thing I noticed right away about Mattie.... he wanted to be independent and to move around using his own two feet. 


Quote of the day: The very worst events in life have that effect on a family: we always remember, more sharply than anything else, the last happy moments before everything fell apart. ~ Fredrik Backman

This is the photo Peter sent to me of his mom today. I think the picture speaks volumes as she is in the ICU and is unable to move. She is being immobilized. I did not understand the full extent to why, but after Peter spoke to the neurosurgeon today we all have a much clearer understanding of the problem. Barbara fractured several parts of her thoracic spine (T4-8) from her fall down the stairs. The thoracic spine is the longest region of the spine, and by some measures it is also the most complex. Connecting with the cervical spine above and the lumbar spine below, the thoracic spine runs from the base of the neck down to the abdomen. It is the only spinal region attached to the rib cage.

Fortunately, thanks to the insertion of a pacemaker on Monday, Barbara's heart is now stable. Stable enough for surgery. It was clear from talking to the surgeon that she really doesn't have any other option than to have a thoracic posterior instrumented spinal fusion. A mouthful no??? Well it is that or remain in her current position for six months in hopes that the spine heals and repairs itself. Not a viable option. 

(Picture is of a child's x-ray showing spinal fusion correction for scoliosis) 

The spinal fusion is the process of joining bones with bone grafts, adding bone graft or bone graft substitute to an area of the spine to set up a biological response that causes the bone to grow between the two vertebral elements and thereby stop the motion at that segment. Instrumentation includes implants such as rods, plates, screws, interbody devices, cages, and hooks. 


It is important to stabilize Barbara's spine because a portion of it is out of alignment and is very close to the spinal chord. Which is why she has to remain in ONE position and can't move. Movement could potentially damage her spinal chord and lead to paralysis. Needless to say, we all want this surgery as soon as possible, but apparently the OR schedule is quite full this week and her surgeon isn't sure they can get her on this week's calendar. 

Peter and I may not be well versed in Barbara's particular issue, but we certainly know our way around a medical system and know how to get things done. Which is exactly what is needed during such a medical crisis. Health care providers are bright and they quickly assess whose who in the family and their involvement. Needless to say, Peter and Barbara's nurse have become pals. 

Meanwhile today I went to MedStar Georgetown Hospital for my follow up appointment from kidney stone surgery in March. Every time I visit the hospital, I walk through the Children's Art Gallery. This Gallery opened while Mattie was in treatment. Mattie loved that space and added several pieces to it. With each visit, I always love going by and seeing Mattie's art. However, during my last visit, all of Mattie's art was taken down. It wasn't there and I truly was saddened by this. As Mattie lives on through his art and for me his connections with his medical caregivers. 

But look what I found today! Mattie's Lego story is back up and in a prominent location! Next to Mattie's story is the collage I created for the Gallery. Somehow these two pieces are always paired and displayed together! 

See what I mean! Not that Mattie's art brings Mattie back, but I have to say it means his life and his journey is not forgotten at Georgetown. 

Mattie's story! This story was once accompanied by a Lego display. Mattie designed "the perfect children's hospital space/room" all in Legos. 

This photo was taken in March of 2009. The grand opening of the art gallery. You see Mattie's story and his Lego creation next to it. In fact the story and the Lego creation go together. 

Tuesday, December 3, 2019

Tuesday, December 3, 2019 -- Mattie died 531 weeks ago today. 

Tonight's picture was taken on December 5, 2002. Mattie was 8 months old. It was our first snow fall for the season, and of course the first SNOW Mattie ever saw. Look at how the sight of the white stuff stopped him in his tracks. Mattie was transfixed at the front door. 


Quote of the day: Heart block is an abnormal heart rhythm where the heart beats too slowly (bradycardia). In this condition, the electrical signals that tell the heart to contract are partially or totally blocked between the upper chambers (atria) and the lower chambers (ventricles). ~ Heart Rhythm Society


I was working at 10pm last night and I heard Peter on his cell phone. I did not think much about it, until he came upstairs and told me that his mom fell down the basement stairs of her home and was on route to the hospital. She is in Boston and we are in Washington, DC. Peter's dad wasn't sure what to do, so he called his other son who lives in Boston. Fortunately Peter's brother told him to get into the ambulance with his wife. But they left the house without a cell phone, so we had to track down which hospital she was taken to and what were the issues. Thank goodness for the police who were very helpful. 

Needless to say, Peter and I were up until 4am talking to Peter's brother and trying to determine what the problem/problems were. What happened..... did she just fall or did something happen to cause a fall?! I was leaning toward the latter. In any case, Peter booked a 6am flight, which given Boston was having a snow storm, I wasn't sure he'd ever get there. 

This was what it looked like at Logan Airport when Peter landed. He said it was a hellish flight!

Snow everywhere. Of course I was concerned that Peter was navigating all of this alone, without my support. But leaving at 6am would have been impossible for me with two animals and a week of commitments. 

When Peter landed, he headed to his parent's home first to feed the cat and pick up a car. The cat is diabetic, so he needs insulin twice a day. Peter gave the cat a shot and then examined where the incident happened. Honestly it looks like a crime scene. Peter's mom fell down these steps and her head hit the ground hard. 

She is dealing with a third degree heart block, a brain bleed, and two fractures in her spine. Of course it took hours last night to come to these conclusions. 

Since I am not in Boston, I am doing the research as info comes into me and then sharing it on a text message stream to Peter, his brother, and my sister in law. So what is a heart block? Your heart isn’t plugged into an outlet, and you don’t use a switch to turn it on. But just like a lamp, your heart runs on an electrical system.

Every time your heart beats, an electrical signal travels from the upper to the lower chambers. Along the way, the signal tells your heart to contract and pump blood. When that signal is slowed down or kept from sending its message, it causes a condition called heart block. This affects the rate and rhythm of your heart, or the number of times it beats and the pattern of those beats.

A heart block can cause dizziness, which is what Peter's mom reported before falling. On her fall down the steps, she hit her head hard which caused the brain bleed and fractures in her spine. This morning his mom had a pacemaker inserted and now they are awaiting a consult with the neuro-radiologist, who will present options for managing the spinal fractures. I am hoping he has an option which will speed up recovery time and enable her to return to her home. 

In any case, if anyone told me this was how we were going to spend our Monday night I am not sure I would have believed them. Given I just saw Peter's mom for Thanksgiving. However, I did make a mental note that she seemed to tire easily and did not have her usual energy. One thing we learned after Mattie was diagnosed, and that is anything is possible and no day is guaranteed to us. 

Monday, December 2, 2019

Monday, December 2, 2019

Tonight's picture was taken in November of 2002. Mattie was seven months old and playing with one of his favorite toys back then. A canister with shapes, which he could sort and push them through the appropriate hole. Though Mattie was old enough to sit up on his own, you can see that I still put pillows all around him in case he toppled over. Ironically I tried to think of all the ways Mattie could potentially hurt himself, but cancer wasn't one of the things that ever crossed my mind. Until he was diagnosed. 


Quote of the day: Among hospice nurses in the community employed by agencies that offer services to pediatric patients, preliminary descriptive analysis has demonstrated that the majority of nurses have fewer than 5 years of hospice experience, have never received formal training in pediatric palliative or hospice care, and have no personal experience providing palliative or hospice care to pediatric patients. Given this finding, it is unsurprising that the majority of these nurses reported feeling somewhat or very uncomfortable providing palliative care or hospice services to children. ~ Erica Kaye


On March 10, 2015, Peter and I presented at a  workshop entitled,  Comprehensive Cancer Care for Children and their Families, sponsored by the Institute of Medicine and the American Cancer Society. The event was held in Washington, DC. Today, I received an email from a medical doctor at St. Jude who was at this conference and heard us speak about Mattie's end of life care. In her email she shared her latest research with us on palliative and end of life care and wanted us to know the following..................

I express gratitude to you for speaking at the IOM/ACS meeting. My main goal in writing this email is simply to let you know that your child’s story left a profoundly deep and lasting impression on me. Please know that your vulnerability in sharing your difficult experiences has directly translated into a study designed to better understand (and hopefully improve) provision of hospice care to children and families in the community. Most importantly, I hope that you know that your participation in clinical and research meetings is incredibly valuable and important, that we hear and remember your child’s story, and his legacy lives on in the work that we do to improve care for future patients and families.

It is funny because you never know who is listening to your story and what impact it will have on them. I remember that conference distinctively, because at it I publicly challenged the chair of the Children's Oncology Group (COG) to endorse the Psychosocial Standards of Care. As the conference was highlighting psychosocial issues and how they impact care, and therefore, I was tired of psychosocial care being referred as an adjunct service, and believed that it was time for the COG (the world’s largest organization devoted exclusively to pediatric cancer research) to take a stand. Which they eventually did. Click here to read COG's statement. 

In any case, here are the highlights from the research that caught my attention:

1. Provision of home-based supportive resources and services through hospice care has been shown to ameliorate symptom burden and improve quality of life for children with serious illness, mitigate parental burden and psychosocial stress, reduce costs, and even improve the experiences of health care providers regarding interdisciplinary collaboration, communication, and family support.
2. In 2007, the National Hospice and Palliative Care Organization conducted a national survey to ascertain the extent of pediatric services available, in which 78% of responding hospices reported serving pediatric patients yet few had a formal pediatric program in place. Data from the 2013 National Summary of Hospice Care showed that only 14% of participating hospice programs have formal pediatric palliative care (PPC) services with specialized staff.
3. Each year, approximately 50,000 children in the U.S. die in the context of life-limiting illnesses, yet only 1 in 10 of these children receive hospice services. Data in the context of oncology suggest that many parents prefer for their child to receive end-of-life care in the home, and this preference is supported by the majority of clinicians. Yet fewer than 1 in 5 hospice programs in the U.S. offer formal pediatric palliative care services with specialized staff, and nearly one-third of existing hospices in the region have policies in place prohibiting provision of care to pediatric patients.
4. A substantial number of nurses reported feeling uncomfortable with assessment and management of common symptoms; communication around the hopes, wishes, and goals of care of patients and families; evaluation and management of the psychosocial and spiritual needs of family members; assessment of family members for risk factors for complicated grief; and provision of bereavement support.

When Mattie's situation became terminal, Peter and I honestly did not know how that would play out. After all, what does the dying process look like for a child? Our child? Frankly no one could have prepared us for how Mattie was going to die, because it was horrific. Hours of torture, pain, and an inability to breathe. However, while Mattie was still conscious, he made the decision NOT to be home. He wanted to be in the hospital and Dr. Shad (the chief of peds HEM/ONC) encouraged us not to use hospice. Thank goodness I listened to her and Mattie. Because our care team at Georgetown was extraordinary and they lived our journey with us. I can't imagine establishing a new connection with an outpatient hospice team and managing Mattie's end of life care at home. Let me assure you that Mattie's hospital room looked like a war zone after he died. His amazing nurse was literally pushing pain meds every couple of minutes into his IV. Which ultimately did not work, and Dr. Shad ordered propofol to induce a coma and death. So reading that most parents elect for their child to die at home startled me. If I had made this decision, I am quite certain Mattie would have suffered even more than he did. 

Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses:
https://www.ncbi.nlm.nih.gov/pubmed/30391654

Sunday, December 1, 2019

Sunday, December 1, 2019

Tonight's picture was taken in December of 2008. Mattie was home between treatments and requested Chinese food. Since Mattie typically did not have an appetite and was hardly eating, whenever he requested food, we made sure to get it. I would say that Mattie went through certain food phases while on treatment, requesting such items as: vanilla milkshakes, chicken nuggets, big pretzels, potato chips, vanilla frosted donuts, cupcakes, and shrimp of all things. Keep in mind that Mattie did not eat many of these requested foods prior to his cancer diagnosis. 




Quote of the day: The funny thing about Thanksgiving ,or any big meal, is that you spend 12 hours shopping for it then go home and cook, chop, braise and blanch. Then it’s gone in 20 minutes and everybody lies around sort of in a sugar coma and then it takes 4 hours to clean it up. ~ Ted Allen

It was one of those cold, pouring and gray DC days today! Yet as any dog owner knows...... YOU  HAVE TO WALK THE DOG! Regardless of weather! We took Sunny back to Roosevelt Island. It was his Thanksgiving Day treat, as he has visited the Island three days in a row. 

As we pulled into the parking lot..... we were the only ones there! 

I had a feeling we would see a lot of wildlife as there were no people walking about. Can you see this big hawk sitting on the branch?

The peaceful sight from the boardwalk. 

We literally saw five deer on our walk! Sunny was barking and was ready to charge the deer. Fortunately we never let Sunny off leash, otherwise, we would have been running all over the woods today. 

Can you see the three deer? By the time we were finished from the walk we were all soaked and covered in mud. It was a messy but lovely walk.