Quotes of the day: "Never give up, for that is just the place and time the tide will turn." ~ Harriet Beecher Stowe
"Sherman made the terrible discovery that men make about their fathers sooner or later... that the man before him was not an aging father but a boy, a boy much like himself, a boy who grew up and had a child of his own and, as best he could, out of a sense of duty and, perhaps love, adopted a role called Being a Father so that his child would have something mythical and infinitely important: a Protector, who would keep a lid on all the chaotic and catastrophic possibilities of life." - Tom Wolfe, The Bonfire of the Vanities
"When I was a boy of fourteen, my father was so ignorant I could hardly stand to have the old man around. But when I got to be twenty-one, I was astonished at how much he had learned in seven years." - Mark Twain, "Old Times on the Mississippi" Atlantic Monthly, 1874
"He didn't tell me how to live; he lived, and let me watch him do it.” - Clarence Budington Kelland
"A man's worth is measured by how he parents his children. What he gives them, what he keeps away from them, the lessons he teaches and the lessons he allows them to learn on their own." - Lisa Rogers
Hi everyone, it is Pete, Mattie's Dad, writing the blog today about Mattie's battle against osteosarcoma. Since I spent Friday night and most of Saturday alone with Mattie, we felt it best that I be the one to write the blog, and give Vicki a break. To our loyal readers, I am sorry you're not getting your daily "Vicki dose," but she'll return shortly.
Mattie had another challenging night. Once I was at the hospital, I was able to release Vicki and she and her parents left around dinner time to head home. I had stopped by Target to refill my goody bag as Mattie has a different play relationship with me versus Vicki, and he expects me to engage him almost immediately with play many times. More on this later in the blog. I wrote on the whiteboard six numbers (1-6) and then asked Mattie to choose a number. He was intrigued, and began his usual interrogation and questioning of me as to why he was to choose a number. I of course played coy and that was his confirmation which meant he was getting a prize, so he got more engaged and excited about the possibilities. This drew him out of his funk and difficulties as he focused on something that really interested him. He selected several numbers and finally settled on "five". I produced a Lego (I know, shocker) and his eyes lit up and instantly wanted to open it and build it, but with me. He made the specific point of not wanting to proceed without me, since I still had to change out of my work clothes into shorts/T-shirt. He said he would wait for me to change and would not proceed without me.
See, for fathers and sons, doing an activity together, where we're working as a team, collaborating, working towards a common goal and focused heavily if not solely on physical activities, is a bonding experience and helps form a special relationship between us. I know a lot of people characterize situations when men are playing, working or performing an activity together as "male bonding", but this is an essential component to forming a strong relationship with other men, especially your child. So, building together, be that Legos, Knex, Duplos, blocks, TinkerToys or even wood working projects, fishing, as well as performing "chores" such as grocery shopping, Home Depot runs, dry cleaning, have always been tasks that Mattie and I have done together and a chance for he and I to "bond". It is different for a father and son versus a mother and son, but I do feel that having a strong relationship with your father is absolutely critical to helping your child be a better adjusted individual in the world. Plus, it gives the father a chance to experience a special kind of relationship like no other.
So we built a Lego, and through the course of the next several hours enjoyed a few more activities together. But around 10pm, I had been tasked with getting Mattie started back on his anti-anxiety medication. With Georgetown not being a pediatric-focused hospital, the Pharmacy here naturally only has this medication in a pill form that you swallow. Find me a seven year-old that swallows large pills. Right. So Vicki had me bring our prescription from home tonight, which is in a fast-dissolving wafer form that melts away in seconds in the mouth. I very simply approached Mattie on the request to take this medication and in a matter of seconds he went from recognizing this as something new, and literally launched a semi-psychotic episode that lasted 25 minutes. During this time, as Vicki has described, he almost cannot be comforted or reached and certainly not rationalized with.
Fortunately, I have been through too many of these episodes and knew that I just had to try and comfort him, make him feel less threatened and wait out the event doing anything I could to sooth him (something I learned from his mother). To be honest, this goes against most instincts that a father has with a son. A father raises a son to be tough, self-reliant and in anticipation of being independent, because he knows from self experience that sons grow up to become fathers, form a separate and distinct family unit from their own families, and are expected to be part of the foundation of the family. A father realizes that he has a responsibility to install these traits in his sons, so as a father you feel this instinctual urge that goes unspoken but is known to all fathers, which is probably much like a mother feels for their child, to protect, nurture and guide your child.
I was able to calm him by rubbing his legs, arms, neck, talking slowly, etc., so that he eventually curled up next to me and laid his head on my chest. I then called Vicki since he had been crying out "mommy, mommy, mommy" throughout most of the episode. I was not going to call Vicki until I had him back and under control. Once we reached that point, I called Vicki, told her, and then let him speak to her for a few minutes. Needless to say, it is such a depressing thing to have to see your child go through this (in addition to everything else), to know that it will get worse before it gets better, and to know that you have done everything you can to help comfort your child and are still seeing him suffer.
I did get Mattie eventually to re-engage on some Lego play, as well as playing with some of the Cars characters that he received, playing smash-up/bang-them-up types of play. At around 12:15am, Mattie asked for his iPod as he wanted to watch some of the Scooby-Doo TV episodes that I had downloaded, so I set him up with these and then attempted to get ready for bed. Mattie watched two episodes but every few minutes he had a request for me to adjust the volume or readjust the earbuds as they kept falling out of his ears.
So, at around 1:15am we shut off all the lights and went to "sleep". I was up at 2:40, 4:45, and 6:10 for urine collection, as well as 4:00am to help Mattie's nurse Katherine draw blood and take vitals, since Mattie was curled up in a mass of blankets. As usual, by 8:00am the PICU was in full swing so there is no resting. So for once, just for giggles, I tracked the activity into/out of our room this morning between 8:00am and 9:00am, which is as follows:
8:01 - Resident enters asking about Mattie's anti-anxiety medication debacle last night. A detailed 4 minute conversation ensues.
8:12 - The nurse enters to say hi and talk about the schedule of meds today. We chat for a few minutes.
8:22 - The Tech comes in with the food try and asks if okay to take vitals. I help her do that
8:34 - Cleaning service knocks and comes walking/talking into the room as if entering a room full of people (mind you the lights are off, curtains drawn, room dark and Mattie is in plain sight sleeping). I shush them quite rudely and back them out of the room physically, bringing the trash cans out with me so as to avoid the very loud rustling of plastic trash bags as they are changed.
8:45 - Nurse enters to administer Kytril and a Phosphorus bolus, complete with the insistent and maddening beeping of multiple pumps, and that effervescent and pungent smell of alcohol wipes, and the foreboding crinkle of sterile plastic wraps being removed from syringes and tubes.
8:56 - Nurse arrives to deliver Lab results from Mattie's blood draws earlier in the morning and we discuss, with me trying to process in a fog, the probability of getting out today.
Between wake-ups every 90 minutes or so, Mattie slept through the morning until around noon time when he was up once again to pee. Mattie then announced he was "up" and wanted to play. Thus began the play saga for the rest of the day. You know how that story goes.
I always say to Mattie, and he answers me when I ask the question, "Only one person in this whole world gets to call me Daddy... and do you know who that is?" Mattie always answers "it's me!" Mattie always remembers this and it's clear in his reaction that this means something to him. Unlike with Vicki, who is physically and emotionally with Mattie most hours of any given day, I do not have the good fortune because I have to work, so naturally my relationship is different with Mattie, but certainly not any less because I am not around as many hours as Vicki. My point is that the impact a father can make on a child, even if he is not playing the primary role can be just a meaningful, and although I am not at the hospital, I have to fight every moment when I am away to keep from going back to them. It's a particular kind fo Hell that no one should ever have to endure.
So to fast forward, Mattie had several anxiety-driven episodes today while in the hospital. Each time Mattie's episodes were driven by either pain or the anticipation of pain. I cannot tell you how awful living through this is. I spent over an hour trying to comfort him, and finally somewhat reached him, but in between I got complaints of wrist-pain that were so bad, I called Vicki for a consult. Fortunately, I was able to work with our nurse to get a dose of morphine that calmed Mattie somewhat, but did not make him compliant with taking any anxiety meds. So, we were at a standstill. After calling Vicki, who then proceeded to come to the hospital, I was able to get another dose of Morphine into Mattie that calmed him down. Vicki arrived just at that time I was working the anti-anxiety meds into him, so we were successful. Within 30 minutes, Mattie was starting to return to us.
I sent Vicki out to go eat lunch with her parents, who had driven her over, and I meanwhile multi-tasked between packing up the room, dealing with Mattie and ensuring the nurse, resident and attending were in support and aligned with our decision to get discharged this evening. So, we got discharged at around 5:30, and packed up and with the grace of a herd of elephants, charged towards the door to come home. Mattie has been doing so much better since he got home. Vicki and Grammie took him out for a long ride in his wagon, and now Vicki and Mattie have settled on the couch watching episodes of the Muppets Show. I will stay with Mattie tonight on the air mattress because he will be on IV hydration tonight and hopefully that will give Vicki one more night of relative rest.
So hopefully tonight's blog was not too much to endure and I thank all of you for the departure from tonight's regular author.
Also, Vicki asked me to include the following:
Charlie wrote, "I think after reading back a way in the blog that this might have been one of the tougher weeks that you've had in a while. Just when you think that things are headed in the right direction it seems there is another detour or obstacle that wasn't foreseen. That's pretty scary and disheartening. While it is scary to know that the chemotherapy is at an end, it has to be a good feeling too. No more potentially damaging medication is being run through Mattie's veins. And he managed to sidestep the possible hearing loss from the chemotherapy; that's a definite plus. I know you are very frustrated with Mattie's behavior and how it makes things including his recovery far more difficult. No one who has been following this situation from early on can argue that you haven't handled him brilliantly; you have! These ups and downs and setbacks in attitude are a part of growing up magnified by the situation and the medication that is wreaking havoc with his mental/emotional state. You are an amazing mom and advocate and I continue to be amazed by what you accomplish on a daily basis."
Lisa, my sister-in-law's friend Lesley wrote us a beautiful note. Lesley wrote, "My best friend and I read the blog for so many reasons which I have already expressed to you. Mattie's meltdown felt so "normal" to me. My girlfriend and I have kids exactly Mattie's age and some of the frustration is so age appropriate. Recently, we both had a week in which we felt our boys were worthy of only food and shelter but not much more. I even said to Lisa, "Is this normal." She laughed and said " of course." I often feel since I just have one child that Max's behaviors are beyond okay, but when I see other kids or talk to other parents I am reassured. I feel like the best gift we could give you is to tell you about our own children's moments that we wish we could erase. Mattie is going through the worst a human being can tolerate, and he is at his wits end. He is seven and part of being seven is the desire to separate and state your opinions and feel really strongly about them. Mattie's desire to protect his body from pain is a great lesson you taught him. Of course he does not see the big picture, because what he is going through is not something a seven year old should ever have to comprehend. You are a champion so continue to go with your gut."
Vicki's dear friend, Lorraine, wrote, "So sorry that yesterday was another horribly difficult day with Mattie. I see that you are home today and that Mattie will be home tonight too, but what a time of it you/he's had with the anxieties, traumatic incidents, pain, fear. Sounds like going back on the anxiety drug to help ease the transition and the PT work will be a big help once again. I'm sure you don't relish the idea of Mattie taking another drug, but it sounds as though he does need this and that you have absolutely no choice at this point. This analysis about "self-soothing" is fascinating, but how do they know how much pain Mattie really is in? Also, everyone's ability to handle pain is different, and after 10 months of chemo and all the surgeries what do they expect from a 7 year old, let alone an adult? Wouldn't anyone's resistance to pain be so reduced by all the chemo by now? The pain seems really to be scaring Mattie -- and if being in pain is preventing progress with PT then it makes sense to offer Mattie some way to ease the fears and hopefully lessen the pain. I wonder what behaviors constitute self-soothing at age 7? Watching TV quietly on one's own? Gripping a favorite toy? Certainly can't suck the thumb, or like an adult have a glass of wine? I mean where does one go with this type of analysis? And I really hope you don't take this too much to heart either because I really believe that we cannot be responsible for every personality trait in our children. Some must be genetic, some circumstances out of our control, other people's behaviors and interactions, and life experiences. But I also believe that parenting styles are adapted to fit the needs of our kids and that you responded to Mattie's needs the very best way you could, and with all your heart and love. Wishing you all the best as this transitioning weekend unfolds. The 10 months of chemo has ended! It may be an anti-climax, and a big cloud certainly hangs very heavy because Mattie is still not done, abut Mattie has made it through an incredible amount of hospitalizations, medications,and so much more, that this is an amazing accomplishment. I do hope your wish is granted for finding several fabulous people to help out with Mattie over the summer."
Vicki's friend and colleague, Denise wrote, "I read the blog this morning and I would just like to invite you to think about Mattie's ability to self-soothe as being overwhelmed at this point. He does not know what to expect from his internal experience (i.e., I feel OK today and wretched and in pain another day) so it makes complete sense based on his experience that he would look to external sources (his parents) for grounding and comforting. And he will rediscover and reconnect, as well as learn new ways of self-soothing as time goes on. I can only dimly imagine how scary it must be for him when he is in pain and he becomes frightened and does not know when it will end. I pray for strength for Mattie, you, Peter and all your family members, friends, and all the professionals who support you all in this journey."
A SSSAS upper school mom and our friend Tamra wrote, "While it is true that the waters of your journey are uncharted and choppy at times..smooth at times...and even there must be a feeling of losing compass at times..However, it really is much ado about who is at the wheel...and you two have steered mightily to insure safe harbor for your magnificent son and the two of you. Keep on looking to the stars in the night sky for direction and look into the eyes of each other to reaffirm what wonderful, loving, bright people that the two of you are.... "Hope, that star of life's tremulous ocean." ~ Paul Moon James