March 2000 My daughter left silly putty on the rug the other day... When we found it, it had been there overnight... January 17, 1997 With a plop into formaldehyde… he said, "It looks like a normal lymph node." January 21, 1997 All I really heard over the phone was the surgeon say "… 'small clusters of tumors'… 'cancerous'… 'angulated cells'… 'better get into Boston'"… I hung up and sank down, trying to hold onto reason. How do I tell my wife that our daughter has malignant cells in her little body? She's only 2½ years old. The future screams to a slamming halt. For the next three weeks before she was 'officially diagnosed,' they knew there was cancer present, but couldn't start treatment yet… We were sick with worry. In yet another exam room, I said aside & in jest/humor to my wife, "I don't want to be a parent anymore." In absolute panic, thinking I was serious, my little girl looked me straight in the eye and demanded, "NO! You be my dad!" (Here I was feeling sorry for myself and all the stress, and she's telling me to knock off the crap and pay attention here, that she needed me.) I was issued the most severe dumb slap of my life. It was kind of like a huge aircraft carrier hitting this little itty-bitty blinking lighthouse by mistake… All the power you think you have becomes null. The direction you planned on becomes void. You are not in control here and all you can do for the moment is to hold on tight to keep from thrashing like a fish in sand. All of your priorities shrink to a few and can quickly be counted on one hand. Instantly, it's very obvious, that the little tiny lighthouse wins and your charted course is forever changed. 'Normal' disappears into oblivion. Mid 1997 My oldest told me how to bounce just right and almost hit my head on the ceiling of the school bus. My youngest taught me so much about life and how to look at things around you. My wife taught me to do what you have to do, no matter what. From three different people, I learned about attitude & desire. Am I learning completely new things, or do I just need to re-learn the basics ??? The mind is spinning, wondering what's next, and what do I do? Late Feb. 1997 I remember as a kid in the '60's, selling my still good toys and lemonade in the front yard and giving the proceeds to the Jimmy Fund. I didn't know exactly what the Jimmy Fund was at the time, but my father said it would be a good thing to do. Ironically, my dad lost his battle in 1971 to a brain tumor. With-in 9 short months... he was such a proud man... unable to hold a coffee cup. When our child was diagnosed, the stigma flooded my memory and all I could think of was "No, please, this can't be happening, not again. She's only a child." This is not fair. - - - - - - - - - - - - - I rage. March 8, 2000 I don't know what made me write what I wrote so long ago. Nor, do I know what made me pull all these blurbs together in one spot... but what ever it was, wherever it came from, I pray that it helps. Late 1999 Oh, how I love to find melted crayons & Starburst stuck between the seats of the car. How I love the wallpapered 'fridge'. How I love the mad rush to the bus stop, soccer games and birthday parties. I'm serious. These days are only precious memories and photographs in our future. Look around your nest and count the blessings you have. Take a picture with your heart. Keep the film. Lie down and share a crawling bug, a coloring, homework, or an old photo album. Hold it tight. Real tight. Late 1998 She'll be 5 in June. She is an amazing little girl. She always wants to wear dresses, (" When's my hair gonna grow? ... I look like a boy! "), loves Barbie's, and holds her own in a battle of wits with her 9 year old sister... Quite honestly, I must say that she is by far the "tuffest" person I have ever known. The operations, the bone marrow tests, the spinal taps… What she has had to endure over the last two years is not fair... and in a nutshell, nothing that that it has to do with is fair. It blindsides, it cheats, it steals, it hurts. It doesn't play by the rules. Gloves come off. No more whining anymore. March 8, 1999 Tomorrow is our "clinic day." We go to Boston for her 35th - and LAST three-week cycle of chemo - two years have blasted by... It is very hard to describe the emotions we have right now, and I'm really not sure I can. One thing is for sure... even though the chemotherapy will stop and she has reached this two-year milestone, it doesn't mean it is our last trip to the clinic. She will continue to be checked and monitored on a regular basis for any sign of the cancer-monster. Emotionally, right now, this is our turmoil. We are so excited that the medicines will stop, yet after balancing on this see-saw for so long, I pray that the battle she has fought with such courage and tenacity, will continue to tilt and be in her favor. Although not at 100%, she has decent odds, (so they say) much better odds than 25 years ago... 50 years ago, her form of cancer was almost always fatal within months. Over the last two years, during our scheduled visits to the clinic, my wife and I have seen the new faces of patients and families just being diagnosed. One father, bringing in his daughter on their first day, I knew personally. My eyes got wet, my throat lumped up; I put my hand on his shoulder, and all I could ask was " What are you doing here?." - - - "I dunno yet…" he said with that 'deer in the headlight' look. Our heart breaks each time we see newly dx. Families, because we know what lies ahead for them... how in an instant, life can change. I have begun to understand that 1999 is not 1971. My endless gratitude goes to all our family, friends and the supporters of the Jimmy Fund over the years for having the foresight, attitude and desire to look beyond the present. What they could not do in 1971, they may be able to do today. What they will do in 2010, they could not do today... Had they not been there, ready & waiting on Jan. 21, 1997... I don't know where we'd be now... When the chemotherapy stops on March 3rd, her hair will start to grow back and her blood counts will become strong again. To her though, I think she knows that something is missing, yet, she does not know exactly what. I wonder if it's an adult's version of normal or the caring people at the clinic ? The learning curve is painful. September 28, 2002 Sometimes I feel that I've only learned about one thing… about the silly putty & that rug thing…"Yeah,,, well, . . . when you leave silly putty on a rug for any length of time, it'll do that… it sinks right into the rug and you'll never get it out." I look again and see shoulder length hair that a brush swishes through with one pull. That hair is on a child with a sister and they both are growing up too fast… way too fast. 2000 Although, to her parents . . . - right there, the past, will always remain. Sometimes it seems like so long ago; sometimes it seems like yesterday. About May of '99, a few months after she finished 2 years of chemotherapy for treatment of non-Hodgkin's lymphoma, the TV was on in the living room... A "made for TV" movie was on about a mom who had a brain tumor and had two young children... My wife and I were trying to get the kids into bed and weren't paying much attention to it at the time, but all of a sudden she remarked to no one in particular, " I didn't know that adults got cancer! " Obviously, it was a revelation to her. She made the statement so matter-of-fact, then continued playing & stalling her bedtime. My wife and I snapped our heads and froze in our tracks with a look of... "Did that just come out of her ?" We were dumbfounded of how to approach the matter with her. After two years, after all she had been through, after all we'd been through as a family, how could we have missed that subject with her? I felt so stupid. We choked. We blew it… We swallowed hard. We thought for a minute. We wound up saying (in a nut-shell) that, "Yes, honey, adults get cancer too... it's not just kids sometimes. We tried to explain, (in a 5-year-old way), "that there are a lot of different kinds of cancer... and some kids and adults have a harder time fighting it... it depends... Do you remember that bald man that was nice to you in the elevator at the clinic? ...You remember… bald like when you didn't have hair either ??? Well… he had cancer too... He was going to the adult clinic." We didn't know of any other way to explain it... She has grown up with it, lived it, and has accepted cancer as factual part of her life. That is the way her life is... the hand that was dealt. To her, some kids "got cancer" and some kids didn't. When she realized that it happened to adults, and not just kids, was breaking news. A question posed… a perspective… an issue completely examined through the eyes of a 5-year-old child. Look beyond. The warriors of the present and in the future will need our help. They will always have mine. In only a certain way, am I grateful for this road we have traveled. I am only one voice on behalf of my child... I am only my father's son speaking for a grand-daughter that he never met… This is dedicated in such a bowing and gracious: honor, memory, and support, for those in the trenches right now . . . for those who have fallen . . . for those who have climbed out . . . for you. September 6, 2002 She's eight years old and got her hair cut today… 12 inches cut off… can you imagine? She loves it at her shoulders… the brush doesn't pull anymore… Never did we think this day would come… It's so thick and heavy… and very blond… and much thicker than I remember it being when she was two. As it was growing back out, it was so curly… big wavy finger curls… but now the weight of it makes it hang straight. We sent it to Locks of Love in Florida. They make prosthetic hairpieces at no charge for kids that are bald for medical reasons. Looking at her now, it's so hard to believe that she too, was once bald… There are times, when I look at my daughter and then think of my father… There are also times when I think of my father and then look at my daughter… So, after all that looking and thinking happens, there are two words that always enter my mind…she wears this button during the Jimmy Fund Walk sometimes that says, "Living Proof." Fall 2002 On September 29th, our family participated in our 6th Boston Marathon / Jimmy Fund Walk to raise money for the Jimmy Fund… If you know her, or anyone that has been affected by cancer, please give what you can to this day. cancer still strikes. cancer is always unfair. And remember, cancer is beatable. Such a very long time ago, my dad said giving to the Jimmy Fund was a good thing to do. And I'll betcha', me being the kid that I was, he probably didn't think I was paying much attention, but somehow, I heard and remembered what he was telling me… and, now today, I can only dream and imagine that it may have helped to save his grand-daughter's life. Please support the Jimmy Fund. It's a good thing to do. March 8, 2000 I don't know what made me write what I wrote so long ago. Nor, do I know what made me pull all these blurbs together in one spot... but what ever it was, wherever it came from, I pray that it helps. September 22, 2003 We walked in our 7th BMJFW yesterday. March 2000 Yeah,,, well, Ok, . . . when you leave silly putty on a rug for any length of time, it'll do that. I look up and I see big blond finger curls... Please enjoy Gary's other works: She Taught Me About Silly Putty Sometimes ... Dear Gary Open Letter to Parents What Now That Chemo's Over? Cancer is Beatable