"KNOW what I wished for mom?"

"That Dad would be better." Can you see just how hard he wished?





Last week at Chase's soccer practice Colby was wearing the cape, and I had my camera, and I saw the beautiful clouds and field. He was coaxed into position with the promise of a Burger King cheeseburger. He thought about it for a minute and said like a lawyer..."okay, but it's the whole meal. With the TOY." It was so worth it.



Glenn is doing well. They are starting to taper down (slightly) his steroids for the GVHD. He is still pretty "pink" so they are cutting them back slowly. He is spending lots of time reading and getting inspired. He is really, really shaky due to the immunosuppressant he is on- so he has a hard time writing right now. We are being extremely cautious with the kids in and out- and all of us are becoming obsessive about hand washing and germs. I did have a mild anxiety attack at Colby's soccer game tonight- he was sitting next to the coughing child. Cough. Cough. Put hands in mouth. Play with Colby. I nearly levitated out of my seat and got the hand sanitizer and made Colby sit with me. This caused Colby to cry because I wasn't allowing him to sit with his team... not sure what would have been a better strategy...but certainly not what I considered which was screaming at everyone "LEAVE YOUR SICK KIDS AT HOME!!" (Or perhaps something with a few more expletives added in there)

THANK you to so many who have donated to the Light the Night walk. Stay tuned. I took some images of the teeny tiny hairs that are starting to GROW BACK on Glenn's bald head this morning. Call that a cliffhanger?

This morning...

I stopped to photograph some of the little tiny miracles that happened before 7:30 am

At 7:08 a.m. Colby brushing his teeth dressed as Batman- had to grab the camera.




At 7:15 Samantha having breakfast at the table with her Dad wearing her Peirce volleyball jersey


At 7:32 Chase (after many days of asking...what can I blend??) finally getting to use his invention - a homemade "lego blender" to whip up my coffee.



This day is so full of promise. I'm looking for all the beauty in it- and I am sure to find it. Glenn is feeling well and had a good report from the oncologist yesterday. Day + 60 - bring it on!!

Remember that this weekend OCTOBER 3rd is Light the Night (walk to raise money to find a cure for blood cancers). We'd love to see you all there. If you can't make it- here is a link to our page for fundraising.

Here is the Location for the Walk this Saturday:

Saturday, October 3, 2009
Wilson Farm Park
500 Lee Road
Berwyn, PA
Check In: 4:30 PM
Walk Start Time: 6:30 PM
2008 Walk Photos



Thanks, as always- for checking in on us.

Amy

Survivorship

Two years ago my wife had the pleasure of meeting Wendy Harpham at a Leukemia conference that Penn put on. Since 1990, Wendy has survived 4 different types of cancer and is a daily inspiration to me. She wrote the most beautiful post from her blog today that sums up Survivorship.

Variations on a Theme by Niebuhr

Healthy Survivors learn to balance serenity and courage in healing ways. But serenity is not the only emotional state that Healthy Survivors balance with courage, as reflected in these Variations on a Theme by Niebuhr:

God, grant me the…
serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.

patience to wait when healing requires time, courage to undergo more treatment when needed, and wisdom to know the difference.

discipline to weigh good options, courage to reject bad advice, and wisdom to know the difference.

freedom to nourish realistic hopes, courage to abandon false hopes, and wisdom to know the difference.

composure to trust my doctors and nurses when they have all they need, courage to question my doctors and nurses when they may need more, and wisdom to know the difference.

determination to be independent when I can, courage to ask for help when required, and wisdom to know the difference.

power to repress upsetting thoughts that only hurt, courage to work through upsetting thoughts that can help, and wisdom to know the difference.

stamina to keep pushing when it can improve the outcome, courage to adjust when now is the best it can be and wisdom to know the difference.

energy to be with people who care, courage to avoid people who pull me down, and wisdom to know the difference.

persistence to pursue goals that inspire, courage to let go of dreams that only frustrate, and wisdom to know the difference.

flexibility to shift direction from a failing approach, courage to stay the course when it deserves more time, and wisdom to know the difference.

vision to appreciate what remains, courage to grieve what’s been lost, and wisdom to know the difference.

humility to pray as if everything depends on You, courage to act as if everything depends on me, and wisdom to do both.

by Wendy S. Harpham, MD (2005)*

* Published in Happiness in a Storm. Facing Illness and Embracing Life as a Healthy Survivor

http://www.typepad.com/services/trackback/6a00e54fc66d1988330120a5f97edf970c

authentic success

Last week I got word that a fellow AML fighter (who had a stem cell transplant at HUP a few weeks before Glenn) has relapsed on her day 100. This news hit me really hard- and despite every effort to distance myself from the anger and sadness that I feel about this news- it has weighed on me heavily. One thing that helps me to focus on putting one foot in front of the other, and on realizing that our dreams are lived day to day- is reading from quotes that I collect for just this purpose.

This is an excerpt from the book Simple Abundance (my favorite daily spiritual book for the past 10 years ) on the topic of authentic success.

"Authentic success is having time enough to pursue personal pursuits that bring you pleasure, time enough to care for your home, tend to your garden, nurture your soul. Authentic success is never having to tell yourself "maybe next year." Authentic success is knowing that if today were your last day on earth, you could leave without regret. Authentic success is feeling focused and serene when you work, not fragmented. It's knowing that you've done the best that you possibly can, no matter what circumstances you faced; it's knowing in your soul that the best you can do is ALL you can do, and the best you can do is always enough.

Authentic success is accepting your limitations, making peace with your past, and reveling in your passions so that your future may unfold according to a Divine Plan. It's discovering and calling forth your gifts and offering them to the world to help heal its ravaged heart. It's making a difference in other lives and believing that if you can do that for just one person each day, through a smile, a shared laugh, a caress, a kind word, or a helping hand, you are blessed.
Authentic success is not about accumulating but letting go, because you already have all you need. Authentic success is feeling good about who you are, appreciating where you've been, celebrating your achievements, and honoring the distance you've already come. Authentic success is reaching the point where being is as important as doing. It's the steady pursuit of a dream. It's realizing that no matter how much time it takes for a dream to come true in the physical world, no day is ever wasted. " Sarah Ban Breathnach

Live each day with a heart overflowing--

Amy

day +51

and we survived the quarentine weekend. Glenn is busy yelling from the family room- the Giants are playing and he is quite animated. In more important news, Chase's soccer team The Blue Sharks got crushed by their opponents the Rotten Red Tomatoes yesterday. I keep chuckling every time I think of their name. Cute and catchy. Chase thinks it would have been better if the Sharks crushed the tomatoes- then they'd be the Crushed Rotten Red Tomatoes...but that's not how it went down at the fields.

Enjoy your Monday-

Amy

In This Life

Hey Everyone - It is Glenn.

Yes we are under Quarantine this weekend, but the good news is we are halfway through our Journey at Day 50. I feel great and love being at home with my family. I am truly blessed.

Cancer is a tough journey in that it takes a toll on the people around you so much - and sometimes we the patients forget that. The best thing I ever did in my life was marry Amy. She is my True North and has been so amazing through this journey that I pinch myself everyday for the love, care and strength she has.  In this life - I have been truly loved and supported by my bride and this song has always reminded me of that.

Thanks for all you do Amy - you are amazing. Love - Glenn

Quarantine

Things are a bit complicated around here. Glenn is doing WELL...feeling better each day. (and even though he has a newly transplanted (and trying to work) immune system- it is being suppressed (on purpose) by medication. (protocol) Colby picked up a hint of a runny nose during his second week of Kindergarten and it has him and the rest of us in quarantine until it resolves. Well, modified quarantine. The kids will only be allowed in their bedrooms and their bathroom- no shared downstairs or kitchen so that Glenn can still be here. After they go up or down the stairs- I antibacterial wipe the banister-and say a silent prayer. We will have to get creative with eating arrangements in the rooms- or eat out- but we'll manage. This runny nose could also be due to the fact that we had to stop all of their Zyrtec (allergy med) in order to challenge them on Monday with a test to be sure we can give them flu shots. (egg allergy) If they cannot have the flu shot- they will need to get the flu mist which is a live virus- and means we will have to move out and away from Glenn for 5-7 days. So, for now we are taking it day by day...or hour by hour rather. Only one minor meltdown (by me) this morning.

Thanks for checking in on us-

Amy

milestones

Sam's first day of 7th grade



Chase's first day of 1st grade

and Colby ready for Kindergarten






and before the bus came...we saw Daddy walking out to wish him a good day







"Actually, Mom, when I get on the bus I'm gonna LET YOU come with me." This was Colby's offer to me the day before his first day of Kindergarten. I squeezed him up, closed my eyes and smelled him (yes I still do that) and wanted to hold on to that moment for much longer than just the moment. This week brought far more happy moments than sad ones- and we've been waitin' for the old tipping of the scales on that measurement.
It is day +41 since he received his new stem cells and Glenn has been feeling really well. Of course he probably has a "false sense" of strength and energy from the large dose of prednisone he is on...but we're taking it and not looking back. It has been INCREDIBLE to have him back at the dinner table and able to have conversation and engage the kids, as well. I sure do feel as if I won the lottery this week again- all of us under one roof and no real drama. Unless, of course, you count the fact that my trusty old Maytag dryer died after 15 years of dedication to laundry. Oh, I did get a bit teary as they hauled her out of the laundry room- it was actually a little embarrassing. I couldn't help but think that it was the dryer that washed each of our 4 children's first clothes...their onesies and burp cloths. My tears were short lived as they wheeled in my chic new washer and dryer and I felt just like Carrie Bradshaw in "Sex and the City" when she saw that pair of amazing heels in the window and said, "Heeeellllo Loverboy".

the signs of fall are starting- enjoy the weekend.


Amy

I hear

giggling upstairs in the boys room as I type this- and can't bring myself to yell up "GO TO SLEEP!" because I love it so.

Tomorrow is Colby's first day of Kindergarten. He is going to the most wonderful school- full of incredible teachers and so. much. love. (Christ Memorial in Malvern- for anybody that is local with little ones) So, it's a really small class full of bright and adorable faces (I met them today) and I just won't allow myself to get too dramatic about this milestone. He'll be home after lunch, right?

We had a great (and quick) appointment at HUP today. Glenn still has GVHD- so Dr. Luger doubled his steroids which should clear things up. (This, of course, led him to comment "there goes my chances as an olympic hopeful again." And she replied, "there's always 2012."

Glenn's friend John Shane (there is a long, interesting history of their friendship..some day I'll share it) sent us this video this evening. He and his daughter Molly put it together - Molly went through her own medical challenges as a baby- and is a healthy teenager now. Thank you for making this- and for inspiring others to join the bone marrow registry. What a gift.



TEAM GLEASON will be at Light the Night (Berwyn) to raise money/awareness for the Leukemia and Lymphoma Society on October 3rd starting at 4:30 p.m. That's only a few weeks away- so wanted to put that out there for any and all of you. We'd love to see you there. More info to follow.

been quiet. And trust me,

I don't think you want to hear my internal chatter. My emotions are all over the map these days. One minute so grateful for the moments and living for today, and the next full of anxiety, questions about the future, and nearly choking from fear.

Glenn is feeling a lot better since he started the prednisone for GVH. (Graft vs. Host Disease) His skin is peeling off everywhere- and he is in the process of growing new skin. This is really uncomfortable- as you can imagine. The prednisone seems to be helping the GI track issues as well- and he is eating more bites of food and has been out of bed most of the day the past few days.

We are both working in our own way to find the best way to redirect our thoughts as they start to swirl with what I mentioned above. Some days we are more successful than others. And being busy with appointments, iv meds, pills, phone calls, and back to school with 3 kids leaves little time to dwell on any of it.

For those of you that know me well...I do think I *may* have lost my mind... as evidenced by 2 decisions I made this week.

1. In the drive thru at McDonalds (wishing I hadn't said yes to McDonalds) I ordered myself the # 11 meal which happens to be the "filet of fish" sandwich. Who does that?

2. After 10 minutes of valid reasons about why they COULD NOT buy the (incredibly ugly but much coveted) light up sneakers...I caved and bought them for both boys. Now I have to see them off to school in the things.

As well, I nearly took my melatonin and night time sleep aid in the morning twice this week. (at least I caught myself) If you must know, I also find that I need to turn around 2-3 times as I miss the exit or turn off whenever I am trying to go anywhere in the car. Clearly, I am making decisions in a vacuum...and I need to slow down and breathe, be mindful of what I am doing and remember that each day is a gift. When I change my perspective, for the moment, it is easy to settle into a great day.

signed,

all over the map Amy

A couple of years ago- Chase and I watched this video together. It then became his favorite song for a while. I am so inspired by the strong lyrics, the storytelling, the lighting. As an artist- it inspires me and as a person going through this difficult time- it centers me in a way. Beautiful, I think.