Fun with Family

My sister Maureen was in town this last week and everyone was over tonight. It's always fun for the cousins to get together. Jack really enjoys the chaos, especially when they use his TV to play the Wii. Sharing some pics:

The kids stealing some time on my computer!

The cousins hanging out in Jack's room playing the Wii

Jack with his beautiful cousins Bridget and Shannon

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It's finally cool enough in the evenings to take Jack out for a walk around the neighborhood. This picture was taken just as the sun was going down. Taking my own advice (thanks for the reminder Evy) ... Jack and I stopped to enjoy the moment.

Have a fantastic week my friends.

A Good Week

TGIF!

Jack:

This week I got the call to schedule Jack's eye-gaze, aug com evaluation. It will be done at the speech and hearing department at Arizona State University. The woman who is doing the eval came highly recommended by Jack's neurologist. I'm excited and nervous at the same time. I don't want to get my hopes up too high, but it sure would be nice if we could discover a way for Jack to communicate. The eval is scheduled for October 4th. I'll let you know how it goes.

Eric:

Those of you who enjoy my Eric stories, here is another one for you. I got a bill from the school cafeteria this week for charges made on Eric's lunch account. Problem is, Eric doesn't have a lunch account - I make lunch for him to take everyday. So tell me, how is it that a kindergartner is allowed to put charges on an account I never set up or authorized! The little stinker just decided he wanted a school lunch, so he got in line and ordered it. I called the school and told them Eric's charging privileges have been cut off! I'm going to have to restrict Eric's access to the computer for fear he might discover Internet shopping.

Being the independent kid that he is, when we walk to school in the morning, Eric insists that we split up. He goes one way around the school and I go the other -- we meet up where his class lines up. None of my other kids would have left my side at this age. I'm not quite ready to let him walk to school by himself yet - I get nervous having him out of my sight the short time that he is. Here are a few pictures:

THE WALK TO SCHOOL

The starting point

The split -- he goes one way around, I go the other

Coming around the corner

Successfully reaching his destination

HOMECOMING:

Last week was homecoming at the girls' high school. Some more pictures:

Mary before the game

Mary and her friends ready for the homecoming dance

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That's the update from here. Jack is doing well and since he pretty much sets the tone for how the rest of us are doing .... life is good right now. Have a great weekend and remember to ENJOY THE MOMENT!

Happy Tuesday

Jack saw his neurologist yesterday for his every three months botox injections to his salivary glands. Contrary to what you hear about botox injections -- they are painful and it is so difficult for me to watch Jack cry (and he really cries). His neurologist feels bad and said that he doesn't like to make Jack cry -- and I made him feel even better when I told him that he is the only doctor Jack sees who makes him cry! The last two series of injections haven't been too successful in stopping the flow of saliva, so if this series doesn't help, we will take the next step and have one of his salivary glands radiated. We've already met with a radiation oncologist to discuss this. Jack's lower salivary glands were ligated a couple years ago, so his upper ones are the only ones producing saliva. If we knock out one of them, hopefully .... we can halt the saliva production enough to stop the aspirating and drooling. It's really difficult for me to take Jack out in public when I spend 99% of the time wiping the drool. I just hate it. Yes, it is a cosmetic concern more than anything else, but it's a social issue as well. We can't eliminate saliva production completely because a dry mouth would seriously damage Jack's (beautiful) teeth. Finding the right balance is the challenge.

We've also noticed lately that Jack will momentarily space out and look up. There is nothing consistent about it and it doesn't happen often or last long. However, Jack's OT mentioned it to me the other day, so apparently it is happening often enough for him and Jack's speech therapist to notice. I asked Jack's St. Louis neurologist about it and she said that "brief seizures are well described in children with congenital muscular dystrophy". She recommends an EEG if the episodes happen frequently. I mentioned this to Jack's neurologist yesterday and he agreed that we could get an EEG if the episodes (I can't force myself to say the "S" word) become a regular event. As of right now, I prefer the ostrich - head in the sand approach.
Denial is a wonderful place to live .... on occasion.










A cool front is moving through sunny Arizona -- our temps are below 100 -- Yippee! Hey folks, under 100 is Fall for us. Hope you all have a wonderful week and remember . . . smile and the world smiles with you.

A whole lot of nothing going on

This week was a quiet and uneventful week. On Monday, Jack saw his pediatrician for a "well" check. I knew it had been awhile since we saw the pediatrician, but according to their records - we haven't been in since January of 2006. Remarkable! Fortunately, Jack's pediatrician is very accommodating and doesn't make me bring Jack in for every little thing. His only suggestion was that I get Jack an appointment with a dietitian to make sure his nutrition is adequate. We haven't increased Jack's volume of Pediasure in years (and I mean years), but he is obviously growing - and healthy --so, it's a safe bet that his nutrition is fine. Nevertheless, I'll see about making an appointment with a dietitian ... eventually .... some day ... maybe.

Eric has had a perfect last week and a half at school. Wouldn't you know after we meet with his teacher, he decides to "conform". I think -- as many of you noted -- he (and the rest of the class) just needed time to settle in. Listening to what his teacher has to deal with on a daily basis, the woman has my admiration. I can't imagine spending my days trying to corral, entertain and educate twenty 5 year olds! I'm optimistic that we will survive Kindergarten. At this point in time, we are keeping things the status quo as far as placement ... after all, it's only Kindergarten.

I recently finished reading a book a friend sent to me – “Man’s Search for Meaning” by Viktor E. Frankl. The book was first published in 1959, so it's not new -- just new to me. The book is an account of Viktor Frankl's life in Nazi death camps and his lessons for spiritual survival. I admit that I don't really like to hear that my personal happiness (or contentment) is completely and solely my choice, notwithstanding all the difficulties life has thrown my way. It's much easier to believe you are a victim of circumstance and it's not your fault that you are miserable. However, it is Frankl’s belief that while we cannot avoid suffering, we can choose how to cope with it, find meaning in it, and move forward. Given the horrific circumstances Frankl endured, he certainly has credibility and his lessons for spiritual survival are compelling and inspiring. There are many good passages in the book that are worth remembering and sharing:

• Life is not primarily a quest for pleasure, or a quest for power, but a quest for meaning.

• Forces beyond your control can take away everything you possess except one thing, your freedom to choose how you will respond to the situation. You cannot control what happens to you in life, but you can always control what you feel and do about what happens to you.

• As each situation in life represents a challenge to man and presents a problem for him to solve, the question of the meaning of life may actually be reversed. Ultimately, man should not ask what the meaning of his life is, but rather he must recognize that it is he who is asked. In a word, each man is questioned by life; and he can only answer to life by answering for his own life; to life he can only respond by being responsible.

• It is characteristic of the American culture that, again and again, one is commanded to “be happy”. But happiness cannot be pursued; it must ensue. One must have a reason to “be happy”. Once the reason is found, however, one becomes happy automatically. A human being is not one in pursuit of happiness but rather in search of a reason to be happy through actualizing the potential meaning inherent and dormant in a given situation.

• Man is ultimately self-determining. What he becomes – within the limits of endowment and environment – he has made out of himself. In the concentration camps, for example, we watched and witnessed some of our comrades behave like swine while others behaved like saints. Man has both potentialities within himself; which one is actualized depends on decisions, not on conditions.

• He who has a Why to live for can bear almost any How.

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My Mom update:

My mom is doing well all things considered. She completed radiation over two weeks ago and has been off chemo for as long. They are giving her a break from the chemo for a month and then standard protocol is one week of chemo, three weeks off. She will have a repeat MRI in a month. Until then, it's any one's guess as to whether the tumor has grown back (which is what this tumor does). My mom is apparently very unsteady on her feet, which could be indicative that the tumor has returned. Fact is, the type of brain tumor my mom has is incurable. There is nothing that can be done to eliminate it completely and little that can be done to slow its return. Based on what I've read, even if we were to travel to a top-notch medical facility and aggressively treat the tumor -- at best, we'd only be buying a few more months of life and then you have to consider the quality of those extra months of life. Bottom line, the next six to nine months are not going to be particularly enjoyable, rather, they are going to be particularly tough, especially for my dad.

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On that happy note .......... have a safe and wonderful weekend. Fall is in the air (unless you live in Arizona!)

A Bunch of Pictures

I got a new camera and have been playing around with the color accent feature. Here are some pictures I took today.

life sustaining tubes

morning routine - the "Vest" and breathing treatment

starting the day off happy

the hand (contracture)

the brace

knee brace

still a happy kid

Miss Mary

my little entomologist

always a happy kid

best friends

and one more from dinner tonight ............

Happy Birthday

To my sister Maureen. Just for laughs, here is a picture of me and Maureen taken, oh .... just a few years ago. (I am the older one, in case you couldn't tell.)

Odds and Ends

THE PICTURE


THE STORY

Last Monday after soccer practice Eric was handed a bag that contained two T-shirts (a white one and a navy one), a pair of black shorts and green socks. No instructions, just a bag with his soccer uniform. So, for Wednesday's practice, I had Mark dress Eric in his navy shirt because it has a cool logo and I just liked it better than the white one. Mark arrived at the soccer field and Eric is the only kid in his navy shirt -- all the other kids are in their white shirts. I asked my sister about it because her boys have been playing in the same soccer club for years and she said that the white shirt is the practice shirt and the navy shirt is the game shirt. As far as I know, they aren't playing any games at Eric's level, every practice is just that -- a practice. Thus today --Saturday -- I put Eric in his white shirt because, as far as I know, it's just another practice day. Yep, you guessed it . . . every kid had his navy shirt on and that would be MY kid, the ONLY kid in the WHITE shirt in the above picture. Apparently, I DIDN'T GET THE MEMO! I have no doubt that Eric's coaches think his parents are absolute idiots. Well, this bright light has now figured out that it's white on Monday and Wednesday and navy on Saturday. And, no ... they didn't play a game today, it was only practice!

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Mary is in San Diego participating in an Irish dance competition (called a feis and pronounced "fesh"). I really wanted to go, but without any nursing on the weekend, I didn't feel like I could leave Mark alone with Jack the entire weekend. Mary placed third in one of her dances, which is great given the significant number of dancers in her age group and level. She will be hanging out at the beach tomorrow with her cousin Shannon and their friends from dance (and their parents). Sure wish I was there . . .

Mary sent me this picture via her cell phone. It's not great, but you can see Mary in a "solo" dress. After dancers reach a certain level in their competition, they are able to wear a solo dress, as opposed to the class dress they typically wear. Each school of Irish dance has a custom designed class dress, while a solo dress is individualized for each dancer. The solo dresses are quite expensive and Mary is now at the level where she (thinks she) needs one. Thankfully, she was able to borrow one of Shannon's this time around.

(Mary is in blue; Shannon in pink)

Irish Dancers
(pic added Monday 9/3)

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After all the negative feedback we've received regarding Eric's performance at school, it was a true pleasure to receive a postcard in the mail today from one of Mary's teacher, upon which he wrote:

"I want to let you know what a pleasure it is having Mary in my honors world history class. Her positive attitude and strong work ethic will take her far. Thank you for your support."

It's the little things like that, that make this parenting thing all worth it! Thank you Mary.

On the Eric front, Mark and I are meeting with his teacher on Thursday. If things don't turn around soon, we are going to put him in the gifted class - which only complicates our life because the program is at a different school, not close to our house. However, we will find a way to make it work if need be.

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Just some pics:

Jack enjoying time on the couch and a change
of scenery from his bedroom

"Wild Man" and his new Crocs

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I also want to once again thank all of you who check in on us and thank you for all your comments. I cherish every one. Enjoy the rest of your three day weekend.

The Instigator

I wish I could say that Eric remains in the green. He ended last week on neither green nor red, he ended it sick! He missed school on Thursday and Friday because he was running a fever. He had three good days last week and earned a "reward" from his teacher -- a bug book. Unfortunately, the good behavior was short lived. Today when Mary picked him up after school, she said he was escorted out by his teacher and he had a very sad face on. Ugh! Apparently, his mouth got him into trouble. I called home, talked to Eric and got his side of the story (I swear the kid can talk his way out of any situation). I emailed his teacher to let her know that I had a hard time believing Eric was the instigator in every situation that got him into trouble. Her response was "It seems at this point to be 80/20 , Eric being 80 percent the instigator." Well, hell. I'm at my wits end here. You have to understand that Eric may be my fourth child, but he is my first strong-willed child. I guess I just take it one day at a time -- cherishing the green days and dealing with the red days as they come. I'm open for suggestions ... anyone?

Jack continues to do well, still having an occasional fever, but not often enough to concern me. It's possible that the fevers are a consequence of his disease --- I don't know and I doubt any doctor could give me the answer either. When it comes to Jack, his doctors have few answers. However, what they lack in answers, they make up for in well wishes and support. I emailed Jack's cardiothoracic surgeon (who is no longer at St. Louis Children's) with a Jack update and received the following email in return: "Know that you are in my thoughts and prayers and thank you for always keeping me abreast of what's going on. I wish you peace and send warm regards...Dr. M." . . . What a great guy.

That's the update from here ... wishing you all a green day tomorrow and the rest of this week.

Ciao.

Hands

There is nothing more beautiful than a child's hands, and no simpler way to convey love than the touch of a hand. This is especially true when it comes to Jack because his hands are the only part of his body he can freely move. As I've mentioned before, there is an ineffable peace you feel when you take hold of Jack's hand.

As I was looking through pictures of Jack, I was surprised by the number of pictures I found of people holding or touching Jack's hand. The pictures reflect Jack not only giving, but often times receiving, the peace and joy that comes from the touch of a hand.

Because, as they say -- pictures speak a thousand words -- I put together a montage to share.

Wishing you a week of peace and joy!

Make video montages at www.OneTrueMedia.com

We Are In The Green

Two days into the week and we have two GREEN days at school. Yippee! I'm cautiously optimistic that we will end the week on a green note. Eric also started soccer this week and did so much better than he did a year ago. Last year he thought it was entertaining to pick up the orange cones and put them on his head as fast as the coach put them down. This time around he (so far) listened, followed directions and participated in the task at hand. There is hope.



Jack's fever is back today. He's not outwardly sick, so I have no idea what the source is. It could be nothing more than a viral thing. However, my "take it to the worse case scenario" mind worries that it could be an infection in the hardware - although, I suspect the symptoms would be more severe if that was the case. The last place I want to go is to a doctor's office - I'm afraid Jack's pediatrician would want bloodwork and that would be a nightmare, considering he needed arterial sticks to get blood last summer. I can't imagine taking Jack to a drive-thru "McLab" to get his blood drawn. Hopefully, whatever is going on will resolve on its own very soon.

I'm still waiting to get the pre-authorization from our Department of Developmental Disabilities for the eye-gaze communication evaluation. I'm moving from being patient to being pissed. I don't really want to make "the call" to the powers that be, but if I don't hear something by the end of the week, I guess I'll have no other choice. It's going to take another two months to get an appointment for the eval itself, so time is of the essence.

I'll close with some comic relief from the "two faces of Eric". Have a great rest of the week!

Make video montages at www.OneTrueMedia.com

Strong?

Hope begins in the dark; the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work: you don't give up.

-Anne Lamott

I’ve been told on more than one occasion that I am strong. The first time I recall hearing those words was from a PICU intensivist. It was the same doctor who tried to convince me that I should let them trach Jack at the same time he went under anesthesia for a muscle biopsy. I told him that I wasn’t going to agree to trach Jack until I knew why. The day Jack was trached, he came up to me and told me I was “a very strong person”. I’ve been told that I am strong by people who are on the outside looking in - those who only see or imagine what caring for Jack involves. I’ve also been told I am strong by my fellow sorority sisters – women who face the same hardships and struggles as I, and who know what caring for a child like Jack involves. Strength is in the eye of the beholder. To most, I suppose I appear strong because I am living a life they can’t even begin to imagine themselves living. The operative word being …. living - as in functioning, participating, and even enjoying on occasion. To those who live the life, I’m not sure how they see me as any stronger than themselves. Perhaps it’s because I’ve been doing this longer than they have and I still (purportedly) have my sanity.

I certainly don’t feel strong. Mostly, I feel tired. There are times I feel angry and times I feel sad. But, for the most part I feel confident, I feel a purpose and, above all else, I feel determined. I am determined to find a way to live the life I want – the life I planned – as best I can under the circumstances. Admittedly, not an easy endeavor given the overwhelming emotional, physical and financial stresses that come with having a medically fragile child. Yet, I get up each day determined to give it my best shot, determined to “keep on keeping on”. Some days I am more successful than others. But, no matter what -- I refuse to "give" because I am determined to do it my way.

Does that make me strong? No, I am not strong . . . I am simply stubborn.

Happy Friday!

It's been another week of "red" days and emails from the teacher. Eventually Eric will figure it out, especially when every bug, bug book and piece of lego has been confiscated. His favorite line is "But, I tried my best." I told him to quit trying and just do it! Then I realized I sounded just like my father. Scary!

Jack has been under the weather a bit this week, running a fever on and off and looking pretty pathetic at times. His sats are fine - which is always my biggest worry. I suspect his teacher or therapist brought something into the house from the kids at school they work with. I guess it's time for a not-so-subtle reminder that they must wash their hands upon entering our house. We saw the orthopedic surgeon this week and everything looks great. Jack's St. Louis ortho pleaded for a copy of Jack's x-ray (we haven't been so good about keeping him in the loop), so I got a copy of Monday's x-ray and sent it off to him. I know it really bugs him that he hasn't seen Jack for follow-up. Before surgery I asked him what his "mandatory" follow-up times were after surgery and he said 6 weeks and 1 year. Oh well! If he was a likeable guy, I'm sure I would have made more of an effort to get Jack back to St. Louis, at least one year post-op.

The side effects of radiation/chemo have finally caught up with my mom and it's time to go wig shopping. Other than the hair loss and overall feeling of blah, my mom seems to be tolerating the treatment well. She should be getting an MRI in the next week or two and that will tell us much.

That's the update from here. Have a great weekend.

Finally an update

Although there's not really much to update as things remain the status quo here. I should be happy, yet my mood has been anything but. In many respects, the "down" times are the more difficult times. When you are in crisis mode, you have something in the here and now to focus on and specific results to achieve. When things are running smoothly (relatively speaking), there is too much free time. Time to think about the future and what lies ahead. Time to think about what is and what isn't. I'm not sure I'll ever be truly happy because life will never be truly okay when it comes to Jack. He deserves so much more out of life than his body allows him to experience. At times, the loss --- Jack's loss, our family's loss, my loss -- it just saddens me.

I went to a moms back-to-school happy hour last Friday. Naturally, everyone was talking about their kids and the start of school. Since I have three kids in school, I could join in the conversation without much hesitation. However, when this one woman asked me how many kids I had and what grades they were in . . . I told her about everyone except Jack. I just wasn't up for being the one in the crowd who was different and I didn't feel like getting into the whole "I have an 8 year old, but ......." conversation. As far as this woman knows (and most people who don't know me well know), I only have three kids. I felt like a complete heel after the fact. While I appreciated the invite, for the most part, it's really not worth it to go out and pretend like I'm one of "them". Fact is, I belong to a club that no one wants to join, or even really hear about. That said, I feel like a big dolt for even complaining because I have many friends who's only child has special and/or medical needs and at least I have three healthy kids to enjoy. So, I really should just shut up and stop complaining.

And on that happy note, here is a picture of Jack and his teacher Renee. Renee is not only a wonderful teacher, she also offered to learn Jack's care and has filled in on occasion when Kristi couldn't work. Unfortunately for us, Renee took a job in California and is moving this week. We will miss her lots and we hope she is absolutely miserable in her new job and will come back to Arizona soon (just kidding ... sorta).

Final Interview

Miles Levin - the young man I told you about a while back who is dying of cancer, granted a "final interview" to his mom today. Miles is days, if not hours away from leaving this earth and, once again, I feel like his words are so worth sharing.

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Due to copyright, go directly to Miles' CarePage name: levinstory

Go Ahead and Laugh

As if a phone call on Monday wasn't enough, here is the email I received today ....

I am going to add "keeping hands to self" to your son's (school policy will not let me use your son's name in email due to privacy laws) behavior chart.

I talked to the whole class this morning about being a good friend and not poking or touching our friends. I also told them if someone is poking or touching them, that they need to use words, and ask them to stop. If that doesn't work then they need to tell me, but not to poke back. I also said we Do Not start any poking or touching others in line or at our seats.

I saw him trying to kiss another boy on the cheek today. I asked him nicely to stop and said that sometimes our parents kiss us goodnight on the cheek but that we do not do that at school. As I turned around he did it again, then still again after that. I am sorry to say he was on "red" today. Yesterday he seemed happier at school and I kept praising him every chance I had. Hopefully, tomorrow will be another good day.
Ms. Woods

Go ahead, you can laugh. I'd be laughing too, if it wasn't MY KID!! Anyone know of a good military school?

Oy Vey!

Two weeks into the school year and I'm already getting phone calls from the teacher . . . that would be Eric's teacher. It seems Eric has a problem with his listening skills and with following directions. He's managed to get all the way to a RED light on more than one occasion due to his behavior. Hmmmm, did I mention I was too old for this? On one hand, you could come to the conclusion that Eric is just a spoiled rotten kid who has been running the show the last five years and he just needs to learn how to behave in a structured environment. On the other hand, you could come to the conclusion my friend Peggy has, and that is that Eric is not being challenged enough, he is bored and he doesn't listen because he is thinking on an entirely different plane than what is being taught. Peggy warned me months ago that Eric would be seen as a problem child because of his intelligence. So, what to do? My first response was to threaten the kid with his life if he doesn't change his behavior and start doing what he is supposed to. However, after a long conversation with Peg, I think we make him aware of what behavior is acceptable in his current setting (with consequences for unacceptable behavior) and we get him involved in other activities to allow him to utilize all the information and ideas in his head, plus burn off some energy. Believe it or not, the kid already knows how to play chess! I'm thinking of adding soccer, piano and maybe Karate to his schedule. If things don't get better in the near future, I guess we revisit the gifted program. By the way, did I tell you I'm too old for this?

This morning, as Eric was (again) yelling at me on the way to school and then proceeded to make an about face and head back to our house because he hates school, I asked myself, why couldn't I have gotten a sweet, gentle little boy instead of an intense, high-strung monster (albeit a lovable monster). Then I realized that I did get my sweet, gentle little boy --- Jack. I imagine that if he could, Jack would be my teddy bear, my kid who would give countless hugs and shower me with "I love yous". He would be a "momma's boy". While Jack can't reach out and give me a big hug or say the words "I love you mom", I can still feel the hugs and hear the words through his eyes and his smile. I'll take it. I'll take that monster kid too - he does keep us laughing.

I took Eric to get new shoes tonight because one of his issues is that he plays with his shoelaces and eventually takes his shoes off during class and then he can't get them back on. His teacher asked if we could get him shoes with velcro straps so he wouldn't have the shoelaces to play with and it would be easier to get the shoes back on. Fifty dollars later, the kid has a pair of velcro strap shoes that light up. I just realized that he will now probably take his shoes off and proceed to smack the floor with them so he can see the lights. What was I thinking?

I can't wait to see what tomorrow brings.

Piano Man

A few weeks ago, Jack's speech therapist brought this nifty little piano for Jack to play - he activates the piano by moving his hands. I don't think it's actually a piano, but some type of sensor that picks up movement. The higher he raises his hands, the higher the note. Apparently, Jack loved it and did very well creating his own music. I'm not home when the therapist comes to the house, so she videotaped it for me. As you can see, her computer screen displays Jack as he is activating the keys and she videotaped her computer screen. It's not the best video, but it is kind of cool to watch.

Make photo slide shows at www.OneTrueMedia.com

Eric funny:

As we were walking to school yesterday morning, Eric was yelling at me and telling me that he did not need to go to school because he already knows everything! He said that he knows how to use scissors and how to count to 100, so why does he have to go to school? I explained to him that he may know how to count to 100, but he doesn't know how to add, subtract, divide and multiply those numbers yet. He looked at me with his inquisitive eyes and asked what did I mean. After I explained, his response was "I'm going to find me a new mom who will let me do whatever I want." . . . Knock yourself out kid!

My mom:

I received the following email yesterday morning:

Ann – got the result back this morning. Your mom is not eligible for the Celldex study – her EGFRvIII is Negative.

I hope your mom is doing well with her current therapies.

Susan

Susan Adler
Administrator, Brain Tumor Center
Neurological Institute
Columbia University Medical Center

Disappointing, but not unexpected news. I guess we just hope and pray that the radiation/chemo does its job. My mom will have a repeat MRI in about 6 weeks and that will tell us a lot. Until then, we just hope for the best (or live in denial, depending on how you want to look at it).

The Kindergarten Snack Calendar

I was going through Eric's school folder this evening getting things ready for another week of school and in the folder I found the "Kindergarten Snack Calendar". The third week in August, right there in big black letters I see my name. It's not a big deal that I'm listed to bring snacks - I can handle that . . . the big deal is that my name is listed on the KINDERGARTEN snack calendar. I'm 46 years old and I'm on the KINDERGARTEN snack calendar. How did this happen? Okay, so I know how this happened, but really .... KINDERGARTEN?!

Funny thing is, Eric is my first child that I will actually have the opportunity to experience Kindergarten with. Hilary started school when she was three because of her hearing loss and the school she attended in St. Louis from ages 5 through 12 did not have grades - the kids were grouped based on speech skills. Mary started Kindergarten the same year Jack was born, so I didn't even see Mary during much of her Kindergarten year because I was basically living at the hospital from November through June. In fact, Mary's Kindergarten graduation was the same day Jack was trached. Jack came out of his trach surgery about 2pm and then I rushed over to Mary's school just in time for her graduation ceremony. (It was the first of many times to come where I had to put on my happy face when I was dying inside.) And Jack, well . . . he's never attended school.

So, I really should savor this opportunity to deliver a big ol' box of Teddy Grahams or Goldfish to my son's KINDERGARTEN classroom. Really . . . I should.

A Year in the Life

Hard as it is to believe, one year ago today was Jack’s spinal fusion surgery. Even harder to believe is that I have been writing on this blog for over a year now. Who would have thought I’d have so much to say!

As I reflect on this last year, I’m not so sure it’s been the most difficult year since Jack came into our lives, but it ranks as one of the tougher years. Although, in some respects, I’m sure the challenges of this last year have been amplified by the fact that they have been shared openly and honestly with so many. Jack has been amazingly tolerant, patient and happy despite everything he has been through - he is truly a remarkable kid! Jack and I thank you for riding along with us this last year and for all of your encouragement and support. We look forward to sharing this next year with you, although we are hoping for a quiet and uneventful year - at least as far as Jack is concerned.

This last year in pictures . . .

Make an on-line slide show at www.OneTrueMedia.com

First Day of School

Eric made it through his first day of Kindergarten and Mary made it through her first day of high school. Eric was fine heading off to school ... Mary was a nervous wreck! However, Mary said she had fun and is looking forward to tomorrow. Hilary is a junior in high school, so today was not a big deal for her and Jack ... well, he slept through the first day of school morning jitters! I decided to stick to my resolution to "simplify" and, therefore, did not put Eric in the gifted program this year. I think he'll do fine where he is at, afterall ... it's only Kindergarten.

Here are some pictures:

Dressed and ready to go...

Watching a little TV before school

Walking to school (how fun it was to walk with Eric to school this morning)

Sitting at his desk

At the end of the day ....

Before we left for school

Weekend Pics

Sorry guys, I know my writings are really lame these days. I haven't had any moments of enlightenment or compulsion to sit down at my computer and write from the heart. I'm not sure why, but I hope it's only temporary or I'll be losing my audience soon!

My mom got a "get out of jail" card this weekend and was able to spend some time at home yesterday and at my sister's this afternoon. She is scheduled to be released for good sometime this week.

Weekend pics:

Three beauties and the beast
Shannon (niece), Mary, Kelsey (niece) and the Beast aka Eric

Jack and Eric watching a movie together

My mom and dad (it's almost as difficult to get the old folks to smile and say cheese at the same time as it is the kids :-)

Btw, my dad's shirt says "Living with an Irish woman builds tolerance" (I'm sure Mark and my sisters' husbands would agree!)

Have a great week and thank you for checking in on us.

Today

. . . I went to the funeral of my brother-in-law's grandmother. Not really an emotionally healthy thing to do when your own mother has brain cancer. My mom had her first radiation treatment today and she took her first chemo pills (Temedor) at 9:30 tonight. I'm sick to my stomach wondering how she is feeling right now, just over an hour after she took her poison pills. I think I'll probably be awake most the night wondering and worrying about her.

On a "happier" note, I got a call at 6pm tonight telling me that Eric qualified for the gifted Kindergarten program. Only problem, we had just walked in the door from "meet the teacher" night at our home school because I figured since I hadn't heard anything, he didn't qualify. The gifted Kindergarten is at a different school and they don't bus the kids. So, if I want Eric in the gifted program, I have one day (Friday) to get everything changed from our home school to the other school and figure out where he can go after school until Mark can pick him up after work. Not as big a deal as a brain tumor, but something else to deal with, nevertheless. So much for simplifying. To be honest, I'm leaning towards skipping the gifted program at this point.

On a truly happy note ... Jack continues to be amazingly healthy and boring. Life does have a way of balancing things out so that you only get as much as you can handle .... ya' think?

Some pictures from this week:

Jack enjoying my beer

My little entomologist studying away

Did I tell you Mary was home?

Life's Basic Lesson Plan

I am reading a book titled "Kitchen Table Wisdom - Stories that Heal" by Rachel Naomi Remen, M.D. I really liked this statement about life's basic lesson plan and thought it was worth sharing:

We are all here for a single purpose: to grow in wisdom and to learn to love better. We can do this through losing as well as through winning, by having and by not having, by succeeding or by failing. All we need to do is to show up openhearted for class.

One Week of Summer Vacation Left

Hard as it is to believe, my kids start school a week from tomorrow. Our school district is year-round, so the kids get extended Fall and Spring breaks to make up for the short summer. Mary has been in St. Louis staying with her best friend the last two weeks and we are ready to have her back home (she gets home tomorrow). I definitely miss her wonderful presence, although, I can't say I miss the shoes, clothes, books and empty water bottles strewn all over the house!

For the first time ever, I'll have all my kids on the same school schedule. After years of leaving my house at 7:10am and getting to work at 9:00am because I had to make at least four stops (three different schools and our carpooler's house), I made the decision last year that it's time to "simplify". Initially, Mary was not happy about not being able to attend the same Catholic high school that many of her friends and her cousins are attending and I struggled with not sending Eric to a Catholic grade school. However, now that the beginning of school is upon us, I am so relieved to have my kids all attending schools within walking distance. Mary and Hilary will attend the same high school and Eric will be in Kindergarten. Eric is not a morning person no matter how early I get him to bed, so the next 13 years should be quite the challenge. Eric has already asked me whether he has to go to school every day! Jack is easy, the teacher and therapists come to our house. I can't even imagine what it would be like to have to get him out the door every morning.

We have a busy week coming up -- Mary has Irish Dance workshop every day for several hours, we have high school orientation for both girls and "meet the teacher" night for Eric. I'm still trying to figure out how I ended up with kids in high school and a kindergartener. It's very strange. Since life will now be simpler, it's only right that we complicate it some by getting Eric involved in soccer and, hopefully, piano lessons. It would be so much easier on us to not get Eric involved in extra-curricular activities, but it's not fair to him and he has so much energy he needs to channel into something constructive. Like most parents out there, I just feel like I'm that hamster on its wheel -- running as fast as I can and getting nowhere!

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My mom update:
My mom will be in the neuro rehab center until the 25th of July. We asked her if she is ready to come home and she said "no". She is doing well and is improving every day with her speech and ability to articulate her thoughts. (the location of the tumor was in the part of her brain that affects speech, among other things). She starts radiation and chemo some time this coming week and we should hear this week whether her tumor has the marker for the trial at Columbia University. We are definitely in the "lull" before the storm, but it's a bit of respite we all need.

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Sorry about all the template changes. I'm usually not this indecisive!

The Right Idea

Jack has the right idea -- put the headphones on, blast the iPod and block out the rest of the world. Boy, could I use just one day to escape from it all. Just one day, I'd really be okay with just ONE day!

This afternoon we met with my mom's radiation oncologist (who incidently looks all of 12 years old) to discuss her course of treatment and I'm sending the necessary consent to Columbia University tomorrow.

Enough said.

The Gift of Giving

There is a wonderful mythical law of nature that the three things we crave most in life -- happiness, freedom, and peace of mind -- are always attained by giving them to someone else.
-Peyton Conway March

Today, I went by the post office to check the box for The Willow Tree Foundation and found a letter from a mom for whom the Foundation provided a weekend away at a hotel. After 18 years of caring for their ventilator dependent son at home, this family recently had to place their son in a long-term care facility. Here is what she wrote:

I thoroughly enjoyed my stay at the [hotel], my spending money, but mostly the relaxing time away. I laughed, I cried and took long showers. I swam and soaked in a hot tub! I shopped at Hobby Lobby and JoAnns (my two favorite stores). My heart began its journey of healing thanks to the Willow Tree Foundation.

My heart really needed to get that letter today. It was the pick-me-up I needed after a really lousy week. It was a reminder that when life is tough and things seem to be at their worst, the best thing you can do for yourself is to extend an act of kindness to someone else. I'm often asked where I find the time and energy to run a foundation. The fact is, The Willow Tree Foundation energizes me and keeps me going. I'm a lifer in the "parents of medically fragile children" club - a tough club to belong to and one that has the potential to suck the life right out of you over time. I have learned that one way to combat the negativity and self-pity that can overwhelm and consume you is to turn the focus away from yourself and direct your energies towards doing something positive for someone else. You really do attain peace and happiness by giving it to others.

I suggest to each of you - go out there today and perform a random act of kindness. Not only will you put a smile on someone else's face, I guarantee you that, in return, you will feel a skip in your step and a smile on your own face and, your burdens will feel lighter too.

The gift truly is in the giving.

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My Mom update:

I was really worried about my mom yesterday because it seems like she should be further along in her recovery from surgery than she is. However, when I went by today after work, she looked so much better. They moved her to the neuro-rehab section of the hospital where she will have intense physical and speech therapy for a while. I'm not sure how long she'll be in the rehab unit, but I would imagine at least until the end of the week.

I'm still waiting to hear back from the administrator of the Tumor Center at Columbia University regarding whether my mom can participate in the vaccine trial. The administrator told me she has to check with the drug company sponsoring the trial because of how far we live from NYC. Regardless, there is no guarantee that my mom can participate even if the company gives the okay. Only those people whose tumor contains a specific epidermal growth factor receptor known as EGFRvIII are eligible. The first thing to be done is to have my mom's tumor screened for this. I am coordinating getting slides sent from the neuropathologist here to the Tumor Center at Columbia. According to the woman at Columbia, this receptor is very rare, so the likelihood that my mom even has it is slim. I did find out that my mom does start the standard course of treatment (radiation and oral chemo) locally and that if she is accepted in the trial and decides it's something she wants to do, she would start getting the vaccine around day 52 of treatment. So, we do have some time.

The administrator for the research team here in Phoenix was quick to point out that they also have clinical trials for the type of cancer my mom has. The difference is that the trials here are for recurrent glioblastomas. And, while there is no question that my mom's tumor will recur -- the hope with the vaccine is to delay the first (and subsequent) recurrences for as long as possible.

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Jack update:

Jack is doing AWESOME! We are a few weeks short of the one-year post spinal fusion mark. What a long year! (although nothing compared to the upcoming year, I fear.) Kristi is back from her vacation and we are all very happy to be back to our normal routine.

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Have a good day my friends.

Pictures of Love

Peggy and Jack

Last night, my dad laid down in Jack's bed and fell asleep with his hand touching Jack. Just being next to Jack in his silence can bring such a sense of peace at a time when you need it most.

Overwhelmed?

Over the last two hours I have talked with the Administrator of the Brain Tumor Center at Columbia University and the Administrator of the research center at Barrow Neurological Institute in Phoenix regarding the Phase II trial for my mom; I've been on the phone to our school district regarding testing for Eric to get him into the gifted Kindergarten program; and I've completed the augumentative communication assessment forms for Jack so that he can be evaluated for the eye-gaze communication system. So, I've dealt with my mother who has brain cancer, my "gifted" son, and my "disabled" son. On top of all that, I've got clients jumping up and down because I've been on the phone and they can't get to me.

Overwhelmed .... who, me?

The Good, The Bad and The Ugly

Update:
Now that I'm a little more awake this morning, I can elaborate some. Since this whole thing started with my mom, I have purposefully stayed away from the hospital - probably more than I should - because I just find myself pissed off most the time. I have high expectations about how a patient and a patient's family are to be treated and I have a very low threshold for care that falls short of my expectations. I've already walked out of the hospital once rather than engage in confrontation with hospital staff over an issue. I got involved in the most recent issue because my sister called me in tears after my dad left the hospital in tears after an incident involving the young, immature, pompous intensivist (hereinafter referred to as the "YIPI") mentioned below. The incident had nothing to do with my mother's care and everything to do with an overinflated ego. I went directly from work to the hospital and requested a meeting with the YIPI. My sisters and I met with the YIPI for about a half hour and got absolutely no where because he couldn't set his ego aside long enough to listen to us. I cannot understand why this individual went into the practice of medicine. The end result is that I wrote a letter of complaint against the YIPI and delivered it to hospital administration first thing this morning. Likely, it will have no impact except that we have requested that the YIPI be removed from my mother's case. There is certain behavior that simply cannot be ignored and my entire family was on the same page in bringing the YIPI's unacceptable behavior to the attention of the hospital. Bottom line .... my mom needs to get the hell out of the hospital and get home. Unfortunately, she is not in any condition to do that yet. So, in the meantime .... I will continue to speak softly and carry a big stick :-)

Thanks for all your thoughts, prayers and well wishes.
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Needless to say, it's been a tough couple of days. Unfortunately, not only have we had to deal with the news that my mom has brain cancer, we've had to deal with some very difficult hospital personnel as well. As someone who has spent a great deal of time around doctors and in hospitals - I thought I had experienced it all .... until yesterday. I'm not going to get into all the details, but the gist of it is that my father was treated very poorly by a young and pompous intensivist. Add to that the fact that my mother has received anything but "intensive" care in the intensive care unit (it's questionable whether she has received any care at all.) I will be delivering a written complaint to the President of the hospital first thing in the morning. This whole thing has been an absolute nightmare in so many ways.

We have been researching the various clinical trials for the type of brain tumor my mom has and we are looking into a trial that involves a vaccine that will target the tumor, in addition to receiving the normal standard of care involving radiation and chemotherapy. I will be placing a call to Columbia Presbyterian Medical Center in New York City tomorrow - one of only a handful of centers that are conducting this particular clinical trial - to see if my mom is a candidate and see what they need from us to determine that (she appears to meet the criteria on paper). The decision has to be made quickly because she can't be part of this clinical trial if she has already started radiation and chemo here.

On a MUCH happier note, my dear friend Peggy has been visiting with us since Sunday. Unfortunately, there hasn't been much visiting going on because I haven't been home much. Peg has been such a godsend during this time. Jack actually got real tears and started crying last night when Peggy told him "goodnight". He just loves her and she is so good to him. Peg has been great with Eric too - she has the patience of Job. Sadly, Peg leaves tomorrow because she has to get back to St. Louis to take care of her other patient. I haven't even had the chance to get any pictures of Peggy and Jack together. I hope to get some before Peggy leaves tomorrow.

I'm falling asleep as I type this, so I best get to bed. Have a great rest of the week my friends.

Tough Day

With things going so well with Jack, I just knew I was experiencing the calm before the storm.

My mom had surgery today to remove the tumor. The tumor is a glioblastoma, probably the most lethal type of brain tumor to have. The prognosis is poor and the news has been devastating to all of us -- especially my father.

I've spent the last eight years doing everything in my power to keep my son alive. His very life depends on me and I have been able to deliver. Now I find myself in the position of having a parent who is teetering on the fine line between life and death and there is absolutely nothing I can do to keep her here. I know we've all got a 1 in 1 chance of dying, but what my mom's got is a really sucky way to go.

Onward we march ............