Jack Is 9 Years Old

My first baby turned 9 years old on Monday. It’s simply unfathomable to me that 9 years have passed since Jack was born – nearly a decade since he was conceived. As I wrote in his birthday card, there must be magic or trickery involved in the passage of time because it feels like only yesterday that he was born.

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Proof he was once a baby…

Jack has grown and changed so much in his 9 years. It’s highlighted especially next to his babbling, roley-poley baby brother who can’t walk or say a single sentence. Jack is writing poems and stories and reading novels. He has ideas about how the world works – and he expresses them clearly – and they are all his own. He is goofy and laughing one minute, and the next politely requesting that I not jokingly call him a weirdo. He is 4’4″ – less than a foot of height separates us now! His feet are sure to eclipse mine in size soon, too.

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Tween boy!

There are still some very kid-like qualities to him, of course. He still prefers imaginative games over board games. Although his diet does not resemble that of most kids (he would live on raw fruits and veggies if he could), he is still a pretty selective eater. He has branched out a bit – in the last 6 months or so he finally decided he liked pizza – but for the most part he eats like he did when he was 3. He loves to draw (as he has since he was 2), and has taken a liking to coloring, as well. He still loves to have books read to him before bed – we just finished Nightbirds on Nantucket and Harriet the Spy, and now we are reading The Tale of Despereaux and Alice’s Adventures in Wonderland. He could easily read these books to himself (he is reading Harry Potter & The Goblet of Fire on his own) but he is attached to the routine and loves the one-on-one time. (I love it, too.)

Jack is a cerebral kid – always has been. He has zero interest in sports and other physical pursuits, although he does run around on the playground with his friends (as long as they are imagining they are monsters or aliens at the time). He loves science fiction and is currently devouring any form of media on aliens he can find. He was perfectly happy to get a bunch of books for birthday presents this year – something that initially bummed him out at his 8th birthday party (although he appreciated it later). He poses questions about the world that are incredibly challenging to answer – and he likes to listen to science and history podcasts with me.

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Looking spiffy in a suit and tie.

Our relationship has changed somewhat, partially due to his age and partially due to the addition of Desmond to the family. I’m less the default parent that he turns to when he needs something. This has made his bond with David much stronger, and Jack seems to want to learn from David more and more. He has grown more independent, as well – he will disappear into his bedroom for extended periods of time to read or write or just be by himself.

He is such a sensitive, caring kid. He is funny and kind. He is smart, quirky, and just seems to have a special light inside of him.

I’m so glad that I get to be his mom and watch him grow up.

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10 Months Old

A catalog came in the mail a couple of days ago that advertised first birthday party supplies. It wasn’t until then that I realized that I need to start planning for Desmond’s first birthday. It’s only two months away – and the summer months tend to fly by at a quicker rate, it seems!

But let’s talk about Dez at 10 months. This recent picture caused me to dub him my muppet baby.

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Muppet baby!

It fits, no? That wide-mouthed grin and fuzzy hair is exactly the thing Jim Henson was all about. In fact, we’re thinking of dressing Dez up as Kermit the Frog for Halloween this year.

Or, even better in my opinion – Beaker!

Desmond doesn’t have real words yet, but that doesn’t stop him from orating steadily. He raises his hand to the air to call for attention and then lets out a steady stream of babble. It’s adorable. (Except when we’re trying to watch Orphan Black and can’t hear anything over his ranting.)

He is generally a happy little guy, but he does have a temper. When something is taken away from him (usually it’s a piece of fuzz he managed to find on the ground and attempted to eat) he stiffens his whole body, puts his arms down at his sides, and lets out a squeal of rage. He is pretty quick to get over it, though, once you distract him with something else – like the TV remote.

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Yessss Yessss, now I control it all!

He loves, loves, loves the TV remote. Our cell phones and the Playstation controller come in a close second. When he spots one of these items within his reach, he starts chuckling to himself. I’m sure he is saying to himself, “Yesssss, yesssss, I will soon have them all where I want them!”

Maybe he should be The Brain for Halloween…

He still prefers the army crawl over the more traditional crawl. He spends most of his time standing now, though, with a bit of cruising thrown in (if the TV remote is just out of reach). He hasn’t quite figured out how to get down from standing, so he usually just hangs out like that until his legs get weak and he falls over. Or he whines until we finally can’t stand it anymore and help him down (and then he cries because he didn’t want to get down, stupid parents!).

baby standing in crib

His two bottom teeth are in. One is slightly crooked, which just adds to Desmond’s charm. He’s getting more hair all the time, but the majority of it is still in the top middle of his head and it likes to stick straight up (see the part about being a muppet, above). I can no longer see any traces of positional plagiocephaly – which, whew! He still struggles with a nasty cough after his bout with RSV in April, though. He hacks like the most addicted little smoker, but it doesn’t slow him down. The pediatrician said he’ll likely grow out of it by age 2.

Food makes him incredibly happy. He will eat anything and seemingly never gets full! He is very demanding about sharing our food, particularly if that food is pizza or mashed potatoes. I now keep those little cereal puffs within reach at all times so that I can actually eat my meals.

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Mashed potatoes on his face!

Dez can clap (which he does constantly), wave (which he does sometimes), reach for people, and he is starting to hold onto me when I carry him. He is ALWAYS moving, so he crawls off of me in the middle of nursing (but then always comes back for more) and he will not stay put on the changing table!

He loves the bath. He splashes and splashes, then cries when we take him out.

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We’ve started calling him the “gateway baby” – a term I first heard from comedian Jim Gaffigan. Think you don’t want kids? You may change your mind after meeting Dez – he is THAT charming!

We love our sweet second child and can’t imagine life without him!

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Hanging with Mom.

No Way Out But Through

When Jack was diagnosed with Leukemia three and a half years ago, I focused on the “End of Treatment.” I thought we would do what we could to get through the difficult treatment process, but that eventually we would be done.

Well, to be perfectly honest, I thought we would be done when the Induction phase (where remission is achieved) was complete – 30 days after diagnosis and the beginning of treatment. Then I readjusted my thinking – we would have most of the hard stuff behind us after Consolidation – the chemo-heavy “blast the hell out of any remaining cancer cells” phase. I figured Maintenance would be unpleasant, but easier that those prior phases – I thought we would pretty much be done once we got to Maintenance. But then Maintenance lasted over two years and while much of it went smoothly, we did not feel done at all – instead, the hardship of all we’d had to endure up to that point caught up to us.

THEN I thought – End of Treatment is the ticket! End of Treatment would come and this business would be behind us! But, well…

I’ve lost count of the number of therapy sessions Jack has had at this point. With this latest therapist, we’re at least past 10 sessions by now. This therapist has been the most helpful, and Jack has had two successful blood draws! By “successful,” I in NO WAY mean easy. There was shaking and tears, and both times I thought we would not get the draw. But Jack managed to push past his fear and do it!

The first time he was successful (after 8 therapy sessions and countless “needle exposures” at home), he felt jubilant and accomplished afterward! He even said it hurt much less than he thought it would. But the second time was harder for some reason, and afterward he felt tired and defeated and weepy. It didn’t help that one of the phlebotomists in the lab muttered, “He’s never going to be ready,” which Jack heard.

Two steps forward, one step back. Can I bill the lab for the therapy appointments, ya think?

As the therapist delves deeper with Jack into the medical trauma he has experienced, the emotions (mostly negative) get harder to deal with and manifest that difficulty comes out in various ways. Fear randomly comes and goes, insomnia often plagues him, and Jack has felt more of a need to cling to his parents. Some OCD tendencies showed up during the second blood draw, something we hadn’t seen in him before, and then again in his therapy session the next day. Depression – a despair that no 8-year-old should even be able to contemplate – came over him at bedtime on Sunday.

Having gone through trauma therapy myself, I know how hard it is and that when you are in it, it feels like nothing will ever be okay. There are many forces within our minds that try to protect us from feeling the pain of trauma – they tell us to run from even distant memories of it. It’s exhausting to fight your own brain. It takes a fierce, stubborn person to do it, and lots of support.

I have no doubt Jack can do it. We will support him every step of the way.

But he has many doubts and fears. After the therapy appointment Saturday, which had him so upset that he started to run around the room near the end and stopped being cooperative, I tried to reassure him that it’s all worth it.

“It doesn’t feel worth it! It feels terrible!”

I know, buddy. It really, really sucks.

The blood test results – what much of this effort and urgency is about – look pretty good. Jack’s immune system is recovering, which is very reassuring. But for some reason, his iron is super low and that leads to other worries, more medications (thankfully, just a liquid iron supplement at the moment), and additional tests.

We don’t want more worries, more medications, or more tests. Our cups not only runneth over from these things – they’re being crushed by the weight of them. We don’t want anymore, thank you!

We have no other choice, though, so it’s one foot in front of the other. I’m coming to terms with the fact that I have to stop thinking in terms of when cancer will be behind us. When you’re in it, you can’t see through to the other side.

You just have to keep going anyway.

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.

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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!

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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.

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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 - www.colsongriffith.com

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 - www.colsongriffith.com"

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 - www.colsongriffith.com"

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 - www.colsongriffith.com"

“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 - www.colsongriffith.com"

Note: photo credit to Colson Giffith Photography.

All About That Baby

Desmond is 8 months old. I just…how? How is he 8 months old already? He’s like a real person! He loves and laughs and chases our pets and has thoroughly become an integral part of our family.

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He is 18 lbs, 9 oz and 28″ long. He is in 12 month clothing.

The positional plagiocephaly we were monitoring has been downgraded from moderate to mild. It’s almost gone completely!

He’s been crawling for a while now. It started with creeping around 6 months and now he does a weird combo of the army crawl and an inchworm type of thing. He’s clearly got his own way of doing things. He is starting to climb, too. He can climb right over me to get to an electronic device or the dog.

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He likes the sounds of rattles, crinkly toys, and honking toys, and he goes directly for a hard surface whenever he can to smack it or bang a block against it. He pushes toys and books through the bars of his crib.

We’ve started solid foods, albeit slowly. He is enthusiastic, even if he doesn’t exactly seem to like anything I give him. The exception to that would be when I recently let him nom on part of my pizza. He LOVED that.

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He is teething hardcore. Any day now his two bottom middle teeth are going to sprout. ANY DAY.

He is totally interactive now. He can hide under a blanket for a bit of “Where’s Desmond?” and he loves to knock over towers.

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He grabs noses and smooshes his face into mine, gumming my cheek and drooling all over me. He loves to copy a fake laugh. He is very chatty, as well. He says a lot of “di da di da da.” Sometimes this can be disruptive, like when we’re trying to watch TV or sleep at 6am.

He started clapping two days ago.

He loves his big brother. Every time he sees him, he starts laughing proactively; he knows Jack will do something crazy to entertain him!

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Jack, Desmond, and cousin Sabrina

Altogether, he’s pretty awesome. I think we’ll keep him.

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The Rest of His Life

We had our post-treatment conference with Jack’s oncology team last week. Each family unit was given an Off-Treatment binder.

binder

Right inside the binder is an Old Irish blessing:

May the road rise to meet you
May the wind always be at your back
May the sun shine warm upon your face,
The rains fall soft upon your fields.

We were given information on long-term follow-up guidelines, which includes the following:

  • Introduction to Long-term Follow-up
  • Emotional Issues after Childhood Cancer
  • Health Promotion through Diet and Physical Activity
  • Education Issues after Childhood Cancer
  • Male Health Issues After Childhood Cancer
  • Dental Health
  • Kidney/Bladder Health
  • Liver Health
  • Bone Health
  • Avascular Necrosis
  • Skin Health
  • Heart Problems Following Treatment for Childhood Cancer
  • Cataracts/Eye Problems after Childhood Cancer
  • Peripheral Neuropathy
  • Raynaud’s Phenomenon
  • Reducing the Risk of Second Cancers

Jack will continue with post-treatment check-ups for the rest of his life – he’ll be seen every month for the first year, then every 2 months for the second year, every 3 months for the third year, every 6 months for the fourth year, and then yearly after that. He will get blood tests run at every visit. Every 5 years he’ll also get an echocardiogram to monitor his heart for abnormalities that may show up.

Due to both the cancer itself and the treatment for it, Jack is at greater risk for developing all kinds of things, and the oncology team reinforced the fact that any time Jack goes to see a new doctor, that physician needs to be informed about exactly what type of treatment Jack received and how much. We were told that MOST physicians will need to be educated by us or Jack because most will not have ever treated a childhood cancer survivor.

In September (six months post-treatment), Jack will start the process of being re-vaccinated for everything he already received pre-diagnosis.

Kaiser sent a referral for a full neuropsychological evaluation with an outside psychologist. We’ve scheduled appointments for that after the school year ends since the testing takes 6-8 hours. It’s split into four sessions over about a month’s time, and the results will hopefully give us some insight into how Jack’s brain has been affected by cancer treatment and guidance on how to help him in school and life.

Now that treatment is over, a lot of our focus is on dealing with the emotional impacts of the last three years. We have an immediate problem to address, which is to figure out how to get Jack’s lab draws done. We were unable to acquire a blood draw last week because of the extreme anxiety and panic Jack experienced when we went to the lab.

Now, let me be clear: this is beyond fear – it is Post-Traumatic Stress Disorder. Jack went into the lab armed with all kinds of tools to help deal with the pain of the needle (yes, we had the Buzzy!), but once he was in the lab chair and the tech started to prep him, something took over in his brain and he went rigid, started shaking and thrashing, and crying and screaming. He couldn’t hear anything we were trying to say to him, could not process our words, and could not be held still even with two of us trying. I put the Buzzy on his arm, and yet he kept screaming, “I need the Buzzy!” He just couldn’t even feel it – he was somewhere else entirely. The experience was a lot like his night terrors – we were powerless to help him and the lab techs ultimately decided it was not safe to try to stick a needle in his arm.

It’s heartbreaking to see Jack going through this. It’s also necessary to monitor his blood counts because if the cancer was going to come back, it’s prime time for it to do so now that the chemo is leaving his body. (According to the Dana-Farber Institute & Boston Children’s Hospital, between 15 and 20% of children who are treated for ALL and achieve an initial complete remission will have the disease return.) He still has complaints about feeling unwell from time to time and a CBC is the best way to see what is going on with him.

So we’re in search of a therapist who can help us. Unfortunately, this is not covered by our insurance. Kaiser has great mental health classes, but when it comes to long-term or intensive therapy programs, they are sorely lacking (they even have to refer patients outside of the system for the neuropsych eval, something that they do for every childhood cancer patient). Continuity of care only goes so far with them. It’s on us to figure out the best, most expedient way to get help without going broke. (And what if therapy doesn’t work? What then?)

Even aside from the immediate problem of getting Jack to be able to take blood draws, there are clearly emotional scars that need addressing. We’ve tried play therapy with an outside therapist and then short-term CBT within Kaiser and had limited success. Some healing simply takes time, but he will still need professional help to learn how to process his experiences and be less controlled by his anxieties.

So, treatment is over but life after cancer stretches before us. It’s a new journey – a better journey than the previous one, but not without its own challenges. Thankfully, Jack is a fierce and determined survivor.

TigerJack

“He’s watching us all with the eye of the tiger…”