heinz family

Dear dear friends and family,
I haven't written here in so long but ...
Today is the 5th anniversary of Alice's last tumor and surgery. We are celebrating the miracle that it is. She is in remission and healthier than ever. Alice is a senior in high school, graduation is scheduled for this June and she is looking at colleges. I can not even begin to tell you how amazing ... how I never thought we would be here.
Celebrate with us. For 5 years ago today, "Alice had a date with a married man on Valentines day and give him a big bad peice of her mind" and though she is short a part of her brain, you'd never guess it to see her. Thanks to all who have been there with us, who love us, and who have supported us through the years.
Happy Valentines Day, and Happy 5th Anniversary Alice. I love you so.
With love and peace always my dear friends,
Susan

Dear all,
It has been too long since I have written, but I have wonderful news to share. Alice had an MRI today and all was stable. All looked well. What amazing news this is. She was very nervous about her scan today as she has had some headaches and some visual issues, and we have sadly seen too many deaths to cancer these days, but all was well for us.

Alice has two tumors, which are completely unchanged, and no new tumors now in 2 years … her longest time ever since diagnosis nearly 9 years ago that she has gone without treatment and officially in remission. If you had told me this would be true 2 years ago, I never would have believed it. I know there is this part of Alice (and of me too if I am honest) that is just waiting for the next episode … the next recurrence. When you read her MRI report, the history of multiple malignancies and the various changes still in her brain, you can only wonder … when and what’s next. But amazingly, all is well. This is truly cause to celebrate. And truly Alice has felt better in the last nearly 2 years than she ever remembers feeling.

One of the amazing things we did today, besides sit through another long MRI experience, was hand out tie-dye shirts. Thanks to some wonderful friends (thank you all so Julie, Karen and Marsha and Ann!!) we created many tie-dye shirts to distribute to the kids on the oncology unit at Doernbecher. It is so delightful to do this, meet many of the new families, and bring a little brightness and joy. We haven’t brought shirts for many years, so it was a special gift … especially for us. Going room to room and seeing these families brings back so many memories. Memories of where we’ve been and what we’ve lived through and experienced. And memories of how incredibly changed we are because of those experiences. I can’t even begin to tell you how different my life … my whole family’s life has been because of living with cancer … because of sharing these experiences. And today it seem so very real and present to me.

So join with me in celebration of a stable MRI. And join with me in love and remembrance of all who have not been so fortunate, and all who continue to struggle. Foremost in my mind these days is the loss of a dear woman, Jeanne, who I spoken of before. Jeanne battled cancer for nearly 3 years and just passed, on her birthday, the end of March. My love goes out each day to her family.

Life is, always, a precious gift, and a great mystery. Keep celebrating the miracles we see around us each and every day. And thank you always, for caring.

In love and peace always,
Susan

It is hard to believe how fast these 2 months have gone. It is nearly the end of October. The girls went back to school and time seems to have moved rapidly on.
Evelyn is a senior now. I can not tell you how amazing that feels to me. My baby – my first born – now a senior. Graduating this year. It has already been a busy school year. Getting back into classes and … looking at colleges. We have visited University of Portland and University of Oregon (U of O in Eugene). U of O felt like a good match for Evelyn. It’s big – 20,000 – but not so huge as to be overwhelming. It’s a nice campus, meets Evelyn’s requirement of being out of Corvallis, and it has an excellent biology department and many, many majors if she changes her mind as this process progresses. Right now she is thinking a career in the health professions (not gynecology or midwifery!!), most likely Dentistry, but there are lots of options in this life and it is exciting to think about her exploring her options and exploring life.
Evelyn had her senior pictures taken by an amazing woman named Bethany. It was fun and the photos are great. Here are a few of my favorites:




And as for Alice, life is feeling so miraculous. Alice is a freshman now. OK, so does that statement amaze any of you as much as it does me? Not only is Alice a freshman, but she is doing great in school – loving science, taking honors biology and totally enjoying it – in the freshman choir, and even taking P.E. This may not seem amazing to you but Alice has not taken PE since some time in elementary school and that was a joke. Alice is – as she says – out of shape from years of inactivity with chemo, surgeries, and general life exhaustion, so going to PE is a workout for her, but … she’s going.
The really amazing thing is, Alice just had an MRI last week and it was great!! How can this be?? The longest stretch Alice has ever gone without a tumor was between her first and her second tumor, and that was 22 months. We are now at 20 months and going strong. I am frankly nothing short of amazed and incredibly grateful. Alice is a freshman in high school. Did I ever really think we’d get here? I don’t think any of us really did … but here she is … feisty and strong willed and stubborn as ever. What an amazing journey. What an amazing family I have.

And indeed we know only too well how lucky we are. We have only recently watched a dear friend – Erin - who was diagnosed less than two years ago with a brain tumor, die. We miss Erin tremendously and grieve for her amazing family; and what beautiful family they are. It has been a privilege to know this family and share in their difficult journey. Please send your prayers and thoughts to this wonderful family as that put back the pieces of their life and figure out what a life without Erin ever present in it looks like. I love you Becky and Eric. I miss you Erin.

So it is with an ever grateful heart that I repeat, Evelyn and Alice are back to school and … with a new pair of shoes. Alice had the pleasure of designing a pair of shoes for Nike as a fund raiser for Doernbecher children’s Hospital (Portland OR). This is the fourth year Nike did this fund raiser. Doernbecher selected kids from various departments (Alice from oncology) to work with Nike to design a shoe. This year there were 6 kids, each worked with their own Nike designer and producer and designed a shoe. The process began in February when we met with our own personal Nike designer and producer and Alice started drawing what her shoe would look like. It was been a process of design and redeisn, picking colors and fabrics, working with a graphic artist, and ultimately producing a unique and truly Alice pair of shoes. One pair of each of the kids shoes were signed by an athlete (this year was Tiger Woods) and auctioned off. Alice’s shoe was auctioned at a gala event on September 22nd for $10,000 and all that money goes to the Doernbecher foundation. The Alice was also give two pairs of shoes, one regular and one signed by Tiger (which I affectionately refer to as Alice’s college fund).


The shoes now go on sale to the general public (all over the country) on November 9th, and all proceeds go to Doernbecher Children’s Hospital. You can get a pair of these special shoes on line, at nike.com or at any Nike store across the country. It is a very cool thing Nike does. Thanks so much to Nike for this great fundraiser and to all the amazing a wonderful folks at Nike who we had the privilege of working with – Especially Marni, Matt, and MiQ. This has been a great experience for all of us, and a heart moving event. And Alice’s shoes are SO COOL!! Everyone who sees them loves them.
You can view the article that was in our local paper (front page) by clicking on the link at the left. Here are some great photos of the shoes )and one of all of us at a blood drive after Alice received her shoes.

(By the way, when you look at the shoe pictures the number 79 is the number of transfusions Alice has had. That’s why on the inside of one shoe it says “give blood” and in the other shoe it says “79”)













Well all, thanks as always for checking in with us, loving us, and continuing to send great and loving energy our way. Life is always an amazing and unique journey and I will be eternally grateful to all of you for sharing it with us.

With love and peace,
Susan

Remission and Extreme gratitude

I was walking around my wonderful back yard, enjoying the sunshine and picking up branches to throw in the burn pile, after working outside for several hours, and I was overwhelmed by what a different summer this is … I was overwhelmed by gratitude.

This is the first year that we have worked on our house in well … ever! We moved into our house in January of 1999. In May of 1999 Alice was diagnosed with her first brain tumor and our lives changed forever. When we moved in we had big plans … gardens and flowers … maybe ponds and gazebos. We felt like we had this amazing space, this fresh pallet to create upon and enjoy. Once Alice was diagnosed and started chemo all that changed. The next years were filled with regular trips to Portland, chemotherapy, craniotomies, transfusions … so much of our energy going to the very act of survival; survival of our entire family. Taking care of our youngest daughter and always being aware of the special needs of our healthy child – not letting her get lost in the chaos. Then 2 years ago throw in my pulmonary embolism (conveniently falling between tumors number 3 and 4) with my medical bills and recovery and inability to work, and we hit a financial low as well as extreme family personal crisis.

What occurred then was an amazing outpouring of love and financial assistance from the community that I am proud to call my home. My wonderful friends at work “passed the hat” to help us pay bills when I was out work and out of earned leave. Friends organized a huge fundraiser at the school when Alice was diagnosed with her fourth tumor and we had generous donations to our medical account from all around. These acts of generosity were much more than financial, but acts of love, of sharing hope and love and belief.

Now with Alice’s third craniotomy behind her, Alice is entering high school in the fall. Let me repeat that. Alice is entering high school in the fall. Diagnosed at the end of her kindergarten year, I must confess, I didn’t think we’d ever get here. Seeing her “graduate” from middle school was a miracle I never thought I’d be able to witness (and my mother was there to witness it as well). Not only is she starting high school, but also she is truly healthier and stronger that she has been in … well, forever. And Evelyn, Evelyn is going into her senior year and thinking about colleges, enjoying a wonderful summer of friends and frolic. She has grown and matured into a young woman who I am not only proud to call my daughter, but to call my friend. And for the first time since we moved in our home, 8 and a half years ago, we have time and energy to invest in our house. We had a roof which was sorely in need of repair, painting that needed to be done, and land that while wild is wonderful, was quickly being reclaimed by nature and needed some attention. We have now had our home re-roofed, are building a pergola and doing home yard maintenance and repair for the first time. I am planting lots of flowers and new gardens (all of which John calls “deer food”) and loving it. And it all seems like a dream; a wonderful, amazing, dream. We are in this amazing, normal, phase of life … dealing with work and school, children growing, and general home maintenance. Home maintenance … I laugh when I say it. Who ever would have believed it! It has all been the most amazing blessing and I am so grateful. Believe me when I say, we do not take it for granted. Each day seems like a new miracle.

Alice has had a few scares; she lost her vision one day for an hour or so, and has had two other episodes of tunnel vision. After this Alice had an MRI that says, “all clear”. We discussed how after 3 craniotomies and two huge rounds of chemo, she might get some odd symptoms every now and then. We also know she is genetically programmed to grow tumors, so we will keep getting MRI’s regularly, and keep believing in miracles. Amazingly, Stacy (Alice’s oncologist) even used the word “remission” for the first time in our journey. This is a huge word. Remission. All of Alice’s tumors are in remission.

And how does Alice feel about it all. She is nothing short of amazed herself. She now recognizes how what seemed like just a normal part of life – headaches, fatigue, nausea – is for now, a part of her past. Alice has always been wise beyond her years, an old soul in a young body. Her most resent insight when talking about her upcoming 14th birthday: “it’s hard for me to believe I’m a teenager. Right now, I don’t feel like one. It’s like I had to grow up fast when I was young and now for the first time I’m really able to be a kid.” How very true. She is both very old and young for her age.

Through it all we have tried to stay always present, grounded in the here and now, appreciating what we have, appreciating the time we have together, and appreciating all the love and support we have received. There are times when I am very confused by all the suffering some have to endure, and don’t even understand why Alice is now doing so well, but I believe this life is a journey which takes us many unexpected places. We have been blessed in many ways throughout our journey. We have met many amazing people and share in many families’ journeys. There are many out there who are not doing as well as we, and we grieve for them, and celebrate their victories when we are able. A dear young friend of ours – Erin – and her amazing family are really struggling and my heart bleeds for their struggle. Keep them in your prayers and mediations. Their belief in miracles is an inspiration – their struggle is intense.
And it is with tears of joy and belief in all that is good about humanity that a wonderful family right here in Corvallis has been granted an “extreme home makeover”. I know that they will find – like we have always found – that while the wonderful charity is amazing, it is the outpouring of love, which this community is so generous with, that will really be the miracle.

And so I end this message of gratitude to my wonderful friends, family and community, who have loved us all, and held us in your thoughts and prayers through these years, with a simple thank you. Thank you for loving us, and for loving and supporting so many. Whenever people talk about the cruelty for the world, I must acknowledge that it is there. But above all, what I see all around me is the beauty; beauty and the kindness and the generosity of spirit. And I say, thank you.

With love and peace always,
Susan

I have always been intrigued by the concept of purgatory. The idea of sitting in waiting, suffering, while you sit in judgment. Do you go to heaven or hell; damnation of salvation? While sitting by the side of the MRI bed, with Alice inside the MRI tunnel, her head held in place with foam pads on both sides so she doesn’t move for 2 hours, and the constant sounds of the machine – sometimes banging like a jack hammer, sometimes purring like a loud overgrown cat, and sometimes … sounding like a battle scene from Star Wars – this made me think of purgatory. Waiting in judgment. Waiting …
And while we wait I think, not of my sins or hers, (for there are no issues of sin in my purgatory), but I go back and forth in my mind between … “I’m sure everything looks great, she’s been so healthy, she’s doing so well” … “though…. We’ve been surprised before.” Remember tumor number 2, a nearly missed “shadow” that quickly grew and caused hydrocephalus and her rapid vomiting decline … or tumor number 3 … just I year after tumor number 2 … or …….. the thinking goes on from bad to worse and back to better again. This is my purgatory. And then, when the scan is over, I see 4 people standing around the screen looking at her MRI, picking up the phone, calling someone, discussing. “Hold on Alice, don’t move your head, we need more pictures.” Another 15 minutes of waiting as more views, more imagines are made. Again … more purgatory … more waiting. I know, intellectually, that Alice’s MRI’s are now incredibly difficult to read as she has scar tissue from 3 craniotomies, plates in her head, mesh, her UBOs (unidentified bright objects – reflections made in her brain because of her NF), missing pieces (what ever !!) so it requires a radiologist to look and be sure the views are adequate. And she does still have a tumor in there (number 3) though last we looked it was shriveled like a prune thanks to chemotherapy that nearly killed her, so they have to get measurements …. But also … is it that there is something new … is that what they’re all pointing to, talking about, making my angel girl sit in that machine with her head held still for another 15 minutes while they decide …. While we sit in judgment.

OK, so have you been sitting in your own purgatory weeding through my verbosity, my never-ending sentences, the ramblings in my head, waiting for the news? Sorry, but I had to convey a feeling, to express my thoughts, and to help you understand a little better the process.

The end verdict … heaven, salvation … more time.

Or as John would have simply written, "Alice’s MRI was “stable”!!!!"
(he's so good at keeping it short and sweet, unlike me but ... that's why we're together .. yin and yang)

Hallelujah!!!

Tumor #3 remains a shriveled up prune, and no new tumors!!! This dear friends is my idea of heaven right here on earth; One year, and no new tumors. It doesn’t get better than that.

So CELEBRATE with us. We have many guardian angels, this I am sure.
Thank you for being among them. Our guardian angels right here on earth.

Peace and love always,
Susan

What’s the song??? “Heaven, I’m in heaven. Though my heart beats so that I can scarcely see.” …

Just a quick message to say, wish us well. Alice's one year MRI is tomorrow in Portland. She meets with EVERYONE ... her oncologist, neurosurgeon, neuro-opthamologist, neuro-psychologist ... everyone. It's a full day of pokes, prods, and tests. I know Alice is a little nervous ... it's been a full year. The longest she's ever gone is 18 months between tumors (and 2 were actually at the year MRI). Can she break that pattern. She's sure feeling good. Yahoo for that.
Wish us well.
Thanks for your support.
peace,
Susan

Memories and Miracles

Today is February 13th. I stopped by this evening with Evelyn to visit my mother. Today is the anniversary of my father’s death. On February 12th, 1990 I took a pregnancy test and learned that I was pregnant with my beautiful daughter Evelyn. I was planning on calling my parents in the morning to tell them the wonderful news. Instead, that night, I received a call from my mother – who was then living in Chicago – that my father had been hit by a car. He had a head injury and was not going to survive. I got on the first plane I could and flew to Chicago. I arrived in time to be there with my mother and two sisters, to surround my father, sing to him, and turn off the ventilator that kept his body alive till I arrived and we said good-bye. Suddenly. Quietly. My father died. I whispered in his ear that I was carrying his grandchild. I always believed he heard me.

I visited my mother tonight as she was looking through a scrapbook she had put together about my dad. Memories.

And tomorrow is the one-year anniversary of Alice’s last brain surgery … removing a big, bad ugly tumor that was eating away at my beautiful baby's brain. Tomorrow, Valentines Day, is that anniversary. There is a part of me that cannot believe how well she is doing, or that she even survived. Miracles.

Memories and Miracles. One dies, one is born. One survives when the odds were against her.
Memories and miracles.

Celebrate with us the miracle of life. Celebrate with us the lives that have gone on before us. Life and death … and rebirth.
Miraculous.

with love and peace always,
Susan