For childhood leukemia, the 18-month mark is pretty significant. Recurrence in under that amount of time is considered early relapse and makes it much harder to find the right treatment plan to produce an ultimate cure. Of course, no relapse is safe so we've still got a long way to go. But it's been 18 months since Theo was diagnosed and, to use a sports analogy, we can only beat the teams on our schedule. Theo started kindergarten on Monday. That's reason for celebration and tears.. but more for celebration. However, if you'd seen his activity level this summer you'd only ask what took so long. We've just returned from a week away, mostly spent at a cabin on Lake of the Woods, the sixth biggest lake in Ontario (behind three of the Great Lakes, as well as Lake Ontario and Lake Nipigon), where Theo caught a bass about the size of his torso, kayaked, swam, drove a pontoon and threw about a million rocks, while entertaining Anne's aunt and uncle. He also visited his grandpa and Uncle Neil (Anne's brother) in Minnesota, before and after the seven-hour drive across the border. Three weeks earlier, he hiked in Big Sur, picked strawberries and spent hours at the Monterey Bay Aquarium, as part of the sixth annual Levy family trip (yes, all of us) to somewhere on or near the Pacific Coast. The rest of the summer was spent at camps, camps and more camps, for tennis, carpentry, science and a bunch of outdoor adventures, all while continuing his weekly piano lessons and starting t-ball. So yeah, not exactly a six-year old suffering from illness. As for treatment, we're down to monthly blood draws and hospital visits, with lumbar punctures every three months. Theo just learned to swallow pills with juice after first perfecting the apple sauce method, so home treatment has become quite routine and manageable. We have to remind ourselves how lucky we are and more frequently have to remember the importance of certain things that are unnatural for kids Theo's age -- like hygiene. The kids go to bed late, so it's hard to find time to write updates. But it's hard for another reason that's become clear to me recently. We know a lot of people -- way too many people -- who have been touched by cancer just in the time that Theo's been recovering. Family, friends, friends' parents and even friends' kids have been hit. So have our heroes. Some we've already lost, some are terminal now, while others are in remission, benefiting from the continuing advances in science and research. And then there are those who are deep in the fight. Cancer is one degree from all of us, and it's random. Anne's mom died from multiple myeloma a little over a decade ago. We all find ourselves all too frequently at a loss for words, able to only say some version of, "thinking of you." But the work to find a cure is inspiring. Some of the most groundbreaking medical research is happening in immunotherapy, which has the potential to revolutionize cancer treatment in the coming years and decades. There's never enough money, to be sure, but I'm amazed by the number of fundraisers and the level of energy behind them. (Five for the Fight is just one of my favorites.) In June, Anne and I got to attend the Leukemia & Lymphoma Society's Man & Woman of the Year gala in San Francisco. We dressed up all formal for the first time since.. our wedding? Next week we'll likely wear our more regular attire for pediatric cancer awareness night at the Oakland A's game, which of course will be followed by late-night fireworks. And later this year, Theo's story will be featured as part of UCSF Benioff Children's Hospitals' fundraising campaign, raising money for the hospitals and cancer research.
We're lucky to be in a position to tell it. We think often of our friends who are in the struggle. Before bed, Theo still periodically asks to look at pictures from when he was in the hospital. He asks about the breathing tube and the MRIs and his food selections. He also asks why his face was so chubby. We explain for the umpteenth time that steroids cause moon face. For him, it was so long ago. When you're six, 18 months is an eternity, right? But Anne and I still remember it like it was yesterday. Which is why there's so much joy in being able to get that pic that everyone wants -- the one of their kid on the first day of kindergarten.
20 Comments
Lydia
8/21/2018 11:37:18 pm
Hugg, kisses, and congratulations to Theo on his first two days of school. I will visit him this week or next to say hello and give him a surpise hug. Hope to see you both soon. Thank you for writing this update about how you, Hugo, and Theo are doing. Miss you and love you.
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Karen Sherman
8/22/2018 05:19:37 am
With a full heart thank you so much for sharing his first day of kindergarten with all of us and for continuing to educate and promote the need for more research.
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Ken Michaels
8/22/2018 05:27:31 am
Such good news!
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Rickie Lockwood
8/22/2018 06:54:28 am
Mazel Tov in the occasion of his first day of school and the healing he has acomplished. May he continue to feel good, play hard and enjoy his life. Ari and Anne are stars. Thank you for your continued dsuppor for research.
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Sue and Ron Friedlander
8/22/2018 08:07:33 am
Wonderful news! Thanks for the update.
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8/22/2018 08:11:11 am
So happy to hear that Theo’s health is good. We wish him a great year in Kindergarten, and hope he stays well from the “ordinary” maladies of school illnesses. We pray that he will continue to move forward with the best of health and happiness. Thank you for taking the time to inform us of his journey through the past 18 months. Love you ALL, J & J Kane
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suzy grumbacher
8/22/2018 08:31:08 am
Mazel Tov! That is such good news! May Theo have a wonderful healthy year at school. We wish your whole family a Happy and Healthy New Year.
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Pat Smith
8/22/2018 08:50:17 am
Congratulations to Theo and the whole family on this milestone! So glad to hear a positive report. Sending lots of love and healing energy from Maine!
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8/22/2018 09:32:47 am
Thanks for the update! Thrilled about Theo's progress and your optimism. I know the feeling, which is great. Kids are flexible and yet remember (sometimes when you least expect it). Keep doing family things and taking time to celebrate. Love, d
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Cynthia Almond
8/22/2018 11:25:22 am
What a precious little Man! His smile tells a story of a little boy who feels good, who is happy and is happy to be in school with old and new friends. I wish nothing but brighter days ahead for Theo and his entire, very supportive family!
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Shirley Watterston
8/22/2018 01:16:37 pm
Cannot even express how happy I am for Theo and all if you at 18 months. Am especially delighted with all of Theo’s Summer activities. Prayers will always continue along with lots of love!!❤️❤️
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Nathan & Maura Shapiro
8/22/2018 01:41:08 pm
Good news. Hugs, kisses and prayers from Texas.
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Joan Englander
8/22/2018 03:37:43 pm
Got to catch up on Theo's progress with your Mom and Dad last week. So glad that Theo and Hugo are doing so well. Hope Theo enjoys kindergarten! They grow up so fast!
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8/22/2018 05:19:48 pm
It's incredible to see how far you all have come. Relish in this time. Savor each moment and cherish the great! Everyone's hard work has paid off. Cheers to the milestones xoxo Happy Happy first day of kindergarten-- family!
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Jean Herrmann
8/22/2018 05:22:32 pm
Wonderful news to hear. Wishing Theo and family good health and many more years of making memories. Best Wishes from SD
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Jordana
8/23/2018 09:59:41 am
I hope you've had a fabulous first week in kinder, Theo! So happy to read this wonderful update. Xoxo
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Margie & Mike Victor
8/23/2018 12:41:24 pm
Such WONDERFUL news! We hope Theo continues to do well, and will have a fantastic school year!!! Love from all the Victors.
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Corky Schroeder
8/25/2018 12:21:44 pm
Wonderful news! Thanks for the update!
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judy weiss
8/28/2018 08:10:41 pm
So wonderful to read this latest blog entry to hear about all the everyday things Theo is doing. Have kept in close contact with your folks over the past 18 months. You all are beautiful and truly awesome in how you have handled all of this. We wish you only good things as this Jewish new year begins. A year filled with fun, laughter, and good health. Lots of love to all of you!!
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