Sharing Our Story About Pediatric Cancer

Saturday we attended the Grand Finale event for the Leukemia & Lymphoma Society’s Man & Woman of the Year campaign (Bay Area Chapter). Jack and Celia, the Boy and Girl of the Year, handed out the awards to the participants and the winners were announced. The grand total for the campaign was also announced – 10 weeks of fundraising resulted in $804,000 for the Leukemia & Lymphoma Society. Candidates who raised over $50,000 are able to directly choose a research grant to fund with that money. Pretty awesome!

I am hopeful that after my talks with some of the candidates, they are aware of the issues in childhood cancer treatment and will direct their funds toward those research grants.

Jack Boy of the Year

At dinner during the event, I sat next to the President & CEO of the Leukemia & Lymphoma Society, Dr. DeGennaro. He is a very nice man and it was clear he cares deeply about what the organization does. I took the opportunity to let him know what it meant to us to be part of the Man & Woman of the Year campaign, and also to emphasize that we need more focus on new, better treatments for kids (an area that is consistently underfunded). He said it’s one of the issues at the forefront in his mind (as well as prevention!), and that one of the challenges with getting new treatments for kids is that many in the medical community see the high survival rates (over 90% for ALL, for instance) and think their work is done.

Researchers, physicians, and advocates…we are nowhere near done. Cancer treatment for kids takes YEARS and it’s incredibly hard on the whole family. While the treatments usually work, they are not great – they cause secondary cancers, organ damage, learning problems, and other terrible (and sometimes deadly) side effects. Most of the time during Jack’s treatment, I didn’t worry about the cancer killing him – I worried about infection, which was statistically more likely to be a problem.

Friends, this is my challenge to you – please share our family’s story whenever you can. My wish is to spread awareness and hopefully get more funding diverted to childhood cancer research – for reference, only 4% of federal funding is devoted to childhood cancer through the National Cancer Institute. This is despite the fact that cancer is the #1 disease killing children.

Here is our family’s interview video that was made as part of this campaign. Please feel free to share it far and wide.

Note: I’ve read that if you donate to LLS, you can earmark the funds for pediatric cancer research by making a note in the memo section that states: RESTRICTED TO PEDIATRIC BLOOD CANCER RESEARCH. Additionally, for those who are donating at least $10,000 LLS says you can tie your donation to a specific research portfolio.

A Much-Needed Date Night

Since Desmond’s birth in September of last year, David and I have been out alone ONE TIME. That’s right, one measly time in over 8 months. And do you know what we chose to do that time?

We went to the movies.

Now, we like the movies but it’s not exactly quality time. We couldn’t talk to one another and we didn’t even see something romantic. We saw Birdman (it was weird – but good – and not in the least bit romantic). Afterward we ate at a crummy Thai place and then went home. The night was more about checking a task off our list than it was about spending time with one another.

That was back at the beginning of February, so we have been in dire need of a real date night – with time to connect and be US! The problem was that we didn’t have a babysitter to call. Believe it or not, I haven’t actually used a babysitter since Jack was about a year old! I’ve always relied on friends or just stayed home. (Mostly the latter.)

Enter UrbanSitter. I signed up to become a member and was instantly able to search for someone who had infant experience, was CPR-certified (because Dez is putting everything in his mouth he can get his hands on!), and had a background check on the website (I’m a little on the paranoid side). I filtered the results further by searching for sitters close to my house and those that are known through my local parent networks (in this area, Berkeley Parents Network is a go-to for all kinds of things!).

When I connected my account to Facebook, I saw that some of the sitters in my area had been hired by my friends! Further, I got a personalized welcome email from a representative with the site who provided recommendations .

I searched and found a couple of babysitters in my price range that I wanted to interview, and I also posted my request for a sitter on the Jobs section of the website. Almost immediately, responses from sitters who were interested in the job started rolling in! I selected a couple more babysitters to interview from that pool of people.

The phone interviews were super easy to schedule – sitters plug their schedules into a calendar on the website and keep them up to date, so you can look directly at the individual calendars, find a time that works, and click to request the interview spot. The sitters then log in and confirm the time – then the site emails a confirmation with contact information. Easy peasy.

Every interview (four total) went perfectly. It was a tough choice and ultimately the person I choose had to cancel a couple days later when she got sick (which, I completely appreciate – we’ve had so much illness in our house already). By that time, the other sitters I had interviewed had all taken other jobs, but it was not a problem at all! I ran a search again with the date/time I needed plugged into the search parameters, and found a couple more sitters who were available on short notice. I scheduled two interviews and ended up booking the first person I spoke with right over the phone!

Meet Jane (yes, that’s her real name). She is a nanny, a former non-profit employee, and a future Waldorf teacher.


Jane and a peacefully sleeping Dez

Dez took to her within 5 minutes of her (perfectly on-time) arrival. She was warm and friendly and started playing with him right away. We chatted and got to know one another for a good 20 minutes, then David and I took off for our date night. Dez didn’t even make a peep when we walked out the door – he was completely absorbed with the strings on Jane’s hoodie.

We had a blast! We went to a wine & tapas bar close to our house and treated ourselves to everything our bellies desired. We talked about anything and everything (podcasts, vacation, plans for our house and future), somehow managing to branch out beyond the topic of our kids. We were able to truly relax and enjoy ourselves for the first time in months!


A toast to us!

After dinner, I checked in with Jane just to make sure Dez hadn’t turned into a monster while I was gone. He had fallen asleep and all was well. David and I then hopped over to another restaurant for dessert, Prosecco, and coffee. I will admit that I got a bit tipsy (but it was totally worth it!).

When we arrived back home, I thanked Jane, paid her with my credit card through the UrbanSitter app, and David drove her to BART while I snuggled with my baby.


Nighttime snuggles!

Dez slept super well that night and we couldn’t have been more pleased with our experience. UrbanSitter may have just saved our marriage, you guys (or, at least, our sanity)!

I highly recommend the site for your next date night or quick getaway. You can find all kinds of care for your child – in advance, last minute, overnight – and have access to wonderful caregivers who are reviewed by other parents or have a background check. If you use the code FORFREETRIAL when you sign up for your UrbanSitter account you can get a free month to try it out (normally membership is $14.95 per month).

When is the last time you went on a date night or had some precious personal time?

I was selected for this opportunity as a member of Clever Girls and the content and opinions expressed here are all my own.

Leaving Chemo Behind

I notice more changes in Jack every day as the chemo starts leaving his body. Most of these changes are good, and others are not so good but are likely temporary.

I have to say that as much as I want to leave chemo – and the whole experience of cancer – behind us, I can’t help but be reflective. We lived with treatment for more than three years and much of it became routine (albeit unpleasant routine). Suddenly we are in a different routine and even though it’s a normal life routine (mostly), it’s new again and quite a change. And even though we’ve lived with a regular life routine before, it’s new to us because we have been so changed by Jack’s illness.

So please bear with me as I continue to write about living with – and after – cancer. There is still so much to process.

Jack and Dez

Jack and Dez

The first change I noticed in Jack after chemotherapy ended was the increase in his energy level. Less than a week after ending treatment, he woke up on his own and popped out of bed with all of the vigor of his pre-cancer self. Now, he doesn’t jump out of bed ready to face the day every morning, but most mornings he is fairly easy to rouse now. As I posted on Facebook the first day this astonishing thing happened – when you have a young child, you spend a good deal of time wishing they wouldn’t wake up so damned early every day. That wish changes when you have a chronically ill child who sleeps in every day.

So even if he is back to waking up early on weekends, I have a new appreciation for the early rising!

With that said, MY energy level has not increased in alignment with Jack’s! As much as I’m celebrating the return of my kid’s bright-eyed and bushy-tailed side, I am also finding myself wishing for quiet and solitude more often. It feels like all of the energy Jack couldn’t muster over the last three years has simply been stored up and waiting…and now it’s a flood.

I’m hoping his energy level will get to be a bit more manageable with time. I am sick of hearing myself tell him to please stop shrieking like a raptor or to not be so wild and IN his brother’s face. Sigh.

Today as I felt a headache coming on, it occurred to me that I hadn’t heard Jack complain of a headache in a while. While on chemo, he essentially lived with a headache all the time. He got used to it and only asked for Tylenol when it got particularly bad – that tended to happen 1-3 times a week. When I asked Jack today when the last time was that he had a headache, he couldn’t remember. That’s a good thing!

Jack’s body is getting rid of the chemo in a physically noticeable way, as well. The meds had dried out his skin quite a bit, damaged the nail beds on his two big toes, and interfered with the process of normal skin shedding, creating some discoloration in areas. He also became extra sensitive to the sun, so even limited sun exposure resulted in him being very tan (and looking like a raccoon when he takes off his glasses). Now his skin is reacting to the lack of chemo in his system – his throat has broken out in an itchy rash (mild but still annoying) and it has edged up to his cheeks a bit. His lips have become chapped, as well, and he is even thirstier than he was when on the chemo. Clearly his body is trying to get rid of the junk and work on repairing itself.

That is also clear in the amazing increase to Jack’s appetite! He has eaten like a bird the last three years and since he was diagnosed at 5.5 years old, he has gained only about 8lbs (and didn’t consistency maintain that). He has gotten taller during that time, but no matter how we tried to add in calories in the absence of a decent appetite, he has remained on the disturbingly thin side. 

We don’t really have to worry about adding calories now – we just need to keep the fridge and pantry stocked. Jack eats ALL.THE.TIME. He wakes up starving, he eats everything in his lunch (whereas before we threw away so much of it that he didn’t eat), and he snacks constantly. All his meals are bigger now and he generally clears his plate. And then asks for more. He is kind of a human garbage disposal now!
I’m looking forward to his knees being less knobby even though that means I’m also going to be spending a ton on new clothes.

It’s kind of a strange time. I had expected life to calm down with the end of treatment but it hasn’t quite done so. It’s better, but it will still take time to let go and settle into life post-treatment.

Reconstructing The Past

Jack is starting therapy soon to address the post-traumatic stress issues that are causing us all concern. The short term goal is to address the  needle phobia associated with it, which is more accurately described as a “lab-induced panic spiral,” but ultimately he has a LOT of anxiety that controls him and if we could ease that even a little bit, I’ll consider it a WIN.

There are a lot of forms to fill out when you go to any sort of specialist, so I’ve filled out so many pages my hands have gone numb and started aching (seriously). Forms for the IEP evaluation, forms for the neuropsychological evaluation, forms for the ADHD assessment, and now forms for this new therapy.

They are all similar, but different. They all include questions about the past – and this is where I pat myself on the back for keeping records (something I’m less good about with Desmond – arg!) about Jack’s younger years. I have my blog, a baby book, the CaringBridge journal, and many, many pictures. I use all of these things to answer the endless questions and reconstruct the past because my own memory is full of emotion, which can often be difficult to explain in words.

I’ve spoken with the oncology team, the social worker, the child life specialist, several therapists, and all of Jack’s other parents (of course) about the best way to move forward and address this issue. I’m the collector of information and the main distributor. Perhaps this is because I’m a writer, or because I’m a mother, or some combination of things. It’s a little bit odd that it’s me in this role, though, because my memory in general resembles swiss cheese – some memories are perfectly in tact and others are just GONE. Still, it’s up to me and somehow I’m making it work.

This whole Leukemia business started with some general sickness and then a blood test. That blood test was traumatic – for me and Jack. He was 5 and had never had one done. He had never liked needles, but he didn’t spend a lot of time thinking about them…until that day when I had to hold him down and lock my legs around him in order to keep him still for the lab tech to insert the needle (note: always ask for a pediatric phlebotomist for your child!).

I know intellectually that he screamed and cried but I don’t have a specific memory of that part – that part of my inner film is a gaping hole. Holding down my screaming child while he was being hurt was too horrible to remember clearly, so I locked it up and threw away the key.

That night, Jack had his first night terror. I’d never seen one before (in Jack or in anyone) and it scared the crap out of me! I thought it was a seizure. I didn’t connect it to the blood draw at all, even though I knew the blood draw had been traumatizing. I wasn’t thinking very clearly at the time, after all.

But I’m thinking clearly now (mostly). And after filling out a ton of questionnaires and recounting all of the methods we’ve tried and reading over various records of that time when Jack was diagnosed and having witnessed several night terrors (that are pretty much always the same – screaming, thrashing, pleading “No no no no no! Mom! No!”) – all the dots finally connected enough for me to wrap my brain around it.

That initial blood draw, and then the wave of awfulness that followed (more blood draws, an IV, surgery, an MRI, x-rays, platelet infusion, cancer diagnosis – all within the span of 4 days), was the catalyst for this ‘needle phobia.’

Knowing all I know about mental health and having lived with PTSD for decades myself, it still took me this long to wrap my head around what happened to get us to a point where Jack can NOT STAND a blood draw. Stopping to think about it makes it clear to me – OF COURSE he is terrified of blood draws. Every time he sits down and holds his arm out to a white-coated person, he is transported back to that time 3 years ago. The emotions and blurred memories of a terrified 5 year old rush back to him and suddenly he is reliving the collection of medical traumas he’s endured since he first got sick.

Even though he’s 8 now, he is still not much more equipped to handle all of that now than he was then. To him, a needle is not just a needle – it is so much more terrifying that a sharp piece of metal. To Jack, a needle represents a 3-year battle for his life. And that battle has ended, but the winner is still unclear. The cancer is gone, but we don’t know for sure that’s it gone for good and that uncertainty leads to anxiety.

With cancer out of the way, the emotions that were pushed to the background over the last few years have resurfaced and they’re kind of taking over. Jack’s had two night terrors in the last week. His anxiety is at a high again and he has a weird, nervous energy about him that he seems unable to control. He has complained several times of “feeling like he’s going under anesthesia,” which I’ve gleaned is likely some sort of dissociation, and it comes upon him at random times.

Jack brain is reconstructing the past whether he wants it to or not. And my job as his parent is to help him get the tools to understand and resolve it.

To therapy we go.

Boy Of The Year

I’m writing to invite Jack to become an official Honoree for one of our campaigns: the Man & Woman of the Year. Man & Woman of the Year campaign is a national ten-week campaign where individuals compete to raise funds to help find cures for blood cancers. Candidates run in honor of the Boy & Girl of the Year, who are local blood cancer patients and survivors and sources of inspirations to others. The Boy and Girl represent thousands of patients who have been helped by LLS’s patient services and research, they are recognized at all events, in campaign marketing materials and on the LLS website.

I received the above from the Leukemia & Lymphoma Society at the end of January. I wanted to speak with Jack before agreeing to anything, as I knew it could go either way – on one hand, he loves to be helpful and I knew he would get a kick out of being “Boy of the Year.” On the other hand, he doesn’t much like talking about his experience with cancer and sometimes avoids being the center of attention. When I sat down to talk with him about it, however, I didn’t even finish the explanation before he exclaimed, “I’ll do it!” He was thrilled to be given this opportunity and said he would attend events, give interviews, anything they wanted him to do!

So, we agreed to participate in the program and Jack officially became the 2015 Boy of the Year for the Northern California Greater Bay Area chapter of the Leukemia & Lymphoma Society.

Photos by Colson Griffith Photography -

Jack and the Girl of the Year (Celia) get along wonderfully! Seeing them together at the events, it’s clear that the LLS chose the right kids as honorees. They are both so full of life and sweet as can be. They absolutely hold their own at the events we’ve attended, and they stick together like they’ve known each other all their lives. The bond was immediate.

"Photos by Colson Griffith Photography -"

At the kickoff event we attended, I spoke briefly about our experience when Jack was diagnosed while Jack stood next to me and imitated everything I said. The crowd LOVED him.

"Photos by Colson Griffith Photography -"

I also mentioned the fact that when we found out Jack had cancer, the oncologist told us that ALL was “the best kind of cancer” to have. What she meant was that ALL is highly curable in children, but at the time this led me to think that maybe Jack would receive 6 months of treatment and then we could go on with our lives. That was so not the case (as you know) and so it was a second blow when I learned it would be more than 3 years of treatment. I emphasized this in my brief speech and I am emphasizing it again – this is why we need organizations like the Leukemia & Lymphoma Society and all of the research and fundraising! Three years of treatment is too long for anyone, but especially for children.

Maybe with the help of LLS, we can get to  a 6-month treatment for these kids – if we can’t wipe out this horrendous disease altogether!

"Photos by Colson Griffith Photography -"

“We need YOUR help!”

This is why this campaign – very hopefully named Mission Possible – is important and why we are very happy to be part of it and promote the cause to wipe out blood cancers. We hope you’ll support the cause, as well, by donating to the Leukemia & Lymphoma Society, attending an event put on by Man & Woman of the Year candidates, and/or by purchasing tickets to attend the Grand Finale event at The Fairmont in San Francisco on June 6 (we’ll be there!). By supporting LLS’s efforts, you are supporting families like ours – and like yours.

"Photos by Colson Griffith Photography -"

Note: photo credit to Colson Giffith Photography.