Sunday, July 29, 2007

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.

Friday, July 27, 2007

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 . . .

Monday, July 23, 2007

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

Sunday, July 22, 2007

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.

Thursday, July 19, 2007


. . . 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?

Tuesday, July 17, 2007

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.

Sunday, July 15, 2007

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!

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.

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

Wednesday, July 11, 2007

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.

Monday, July 09, 2007

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.

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.

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.


Have a good day my friends.

Saturday, July 07, 2007

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.

Friday, July 06, 2007


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?

Thursday, July 05, 2007

The Good, The Bad and The Ugly

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.

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.

Monday, July 02, 2007

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 ............