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.