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.

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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New Baby, Second Time Around

I saw a post on Facebook recently that said something to the effect of, “Second kid, don’t be bummed you don’t have a baby book. Your parents enjoyed your babyhood more than your older sibling’s.”

I’m finding that to be very true!

I used to be a diehard baby book person. I kind of still am, at least in my head. I spent so much time during this pregnancy getting Desmond’s baby book all set up using Project Life, which is made up of cards that you just fill in with the details. I’ve got ultrasound photos and pictures of my shower and a few other notes in there.

But then…I haven’t filled anything else out in months. I just can’t get motivated to do it – I’m too busy living in the moment.

I am enjoying Desmond’s babyhood a lot more than I enjoyed Jack’s. I don’t doubt myself like I did with Jack. I am not dealing with Postpartum Depression or a flare of PTSD. I’m in a better marriage and we’re in a better financial position.

I cannot express how glad I am that I’ll never have to be a first-time mom again!

This time around, I get to stop and smell the flowers. I sit with Dez in the rocking chair and feel his weight in my arms, his head on my shoulder. I snuggle him close, smelling that baby smell, and kiss his soft, chubby cheek. I sing to him – he can’t tell me yet that I’m no good at it! – and have little chats and encourage him to keep trying to crawl (even while hoping he will slow down just a bit).

In general, there is less rushing about this time around – I know a diaper change doesn’t need to happen RIGHT THIS SECOND and it’s okay if the baby fusses a bit while I use the bathroom.

I know that a poor night of sleep is no indication of what the next night’s sleep will be like, so I can reassure myself that I’ll sleep eventually. I know anything can happen, but I also know chances are that we’ll all get through it just fine. I know the challenges make us smarter and stronger and better.

Desmond is a delightful baby. Jack was a delightful baby, too. The biggest difference in this equation is me! I’ve learned so much from these two amazing boys of mine – so much that I can’t even begin to put into a baby book.

I Don’t Wanna Grow Up

I still tuck Jack in at night. We usually read two books before bed to help him wind down and then I turn off the lights, lay down with him, and we chat for a few minutes. Last night we had to skip reading books because he hadn’t done his homework at the after-school program. Homework ended up eating up the evening and I tucked him in after 9pm.

He didn’t think he could fall asleep without reading books. He told me that they helped him with his fears. He is so scared and he doesn’t even know why. I think it probably has a lot to do with all of the VERY BIG THINGS he has to handle at such a young age, along with his great imagination. The world can be big and scary when there is no end to your imagination and you know that bad things can happen to good people.

Like cancer to a child.

I looked at him, his eyes wide with fear while he tried to hold back tears. I told him he would be okay, that we would protect him. Nothing could come into our house and get him – he has parents and a big dog to keep watch.

We can’t keep cancer away, though. He knows that. His fear persists.

I studied his face, looking at the nose so like mine and the eyes just like his dad’s. Suddenly he looked so grown up to me, even with the fear and the tears. “You are growing up so fast,” I murmured.

The tears burst from him and he exclaimed in a panic, “I don’t want to be grown up already!”

“Oh, honey, don’t worry! You’re still a kid! You can take all the time you want to grow up! I know you’re still young – you just look big to me, especially next to your little brother. Don’t worry, you’re not grown up.”

That seemed to calm him somewhat.

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Jack holding his little brother.

Then we talked about getting ready for Christmas – picking out our tree this weekend and maybe watching A Charlie Brown Christmas. He’s never seen it, so I told him about what a dope Charlie Brown is and how he picks the worst, saddest little tree. Jack laughed out loud at that. Ridiculous Charlie Brown!

Then he said, “Maybe he picked that tree because he knew no one else would pick it. He was being nice.”

“I think you’re right,” I told him, and we said goodnight.

Our Little Dez

He already thinks poop is hilarious – he chuckles silently when we are surprised at the contents of his diaper.

He bats at the elephant toy on his bouncer but just glares at the monkey.

He prefers to look to the left.

In his 11 weeks of life, he has gained over 6lbs and is now 12lbs, 15oz.

He has kept up his ability to roll from tummy to back and is trying so hard to creep.

He thinks that baby in the mirror is pretty cute.

He is quite the conversationalist once he gets going.

He gives us lots of smiles while looking up at us under his eyelashes, just like Snow White’s Bashful.

He still has that new baby smell.

I don’t know how we ever lived without him.

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Kids Notes

I have had so little time to write. It sucks. I need to write. I am much happier when I have been writing.

That’s not to say that I haven’t been happy – I’ve been surprisingly free of baby blues and depression! But how long can I maintain good mental health without participating in something I know keeps me sane?

Anyhoo…here we go with a mad-dash post typed with one hand.

Notes on baby Dez

Dez is a very good baby thus far. Although he absolutely hates getting his diaper changed and wails every time. I think we owe our neighbors some wine for putting up with it. So far I’m not too sleep deprived, but I bet that will change when he wakes up to the world more. And when I go back to work (sob).

David gave Dez his first bottle last week. He took it just fine and then went back to nursing with no problems. Yay for Comotomo bottles!

I got my first smile out of the little guy yesterday when I stuck my tongue out at him. It was awesome! After 5 weeks of nothing but naps and nursing and diapers…finally some interaction!

I’ve been struggling with oversupply again. My body continues to think I should be feeding triplets. This means Dez is gaining weight like crazy and going through zillions of diapers. The cool part of oversupply is that I can pump 3.5 oz. in 5 minutes – on one side. There are lots of cons, though – green poop, gas, choking during letdown, more frequent nursing, so many diapers!!! I am managing better than last time since I know what I’m doing but it’s still frustrating. At least Dez is dealing with it much better than Jack did – maybe because it’s not quite as bad as last time.

At 9 days old, Desmond rolled from his tummy to his back…several times. And he has repeated that performance pretty much daily. He can also go from his back to his side…it’s only a matter of time before he can roll both ways. I fear the toddler years, which will likely come sooner than I would like!

It took a good 3 weeks for his umbilical stump to come off and the area still hasn’t healed so it will need to be treated with silver nitrite. The same thing happened with Jack. I don’t know what’s up with my kids’ belly buttons!

I’m slowly searching for a daycare provider to send Dez to when I return to work in December. It’s a stressful task, to say the least. I’m taking it slow so that I don’t go into a panic and decide to quit my job so that I don’t have to leave my precious baby with a stranger. I thought it’d be easier the second time around but nope! I hope we find a good one right off the bat so that we don’t have to go through everything we went through with finding good care for Jack.

Notes on Jack

Jack is a great big brother. He fetches all kinds of things for me and the baby and always tries to distract the baby during those torturous diaper changes. He’s been good at keeping himself busy when I can’t put the baby down. I’m so thankful we still have our reading and snuggle time together before he goes to sleep so that we can still connect.

He’s generally been in better health and made it to school most days this year. Just a bit over 5 months of treatment left!

We met with his new teacher and found out that he is behind where he should be for a third grader. The things the teacher has noticed are in line with what we’ve seen at home and are common learning problem areas for kids who’ve undergone chemotherapy. We asked his teacher to document anything she sees and we’re going to (again) seek an IEP evaluation – and this time we won’t back down. We’ll be in a better position to argue for the testing now that Jack has been going to school regularly and his teacher is actually noticing his difficulties.

He’s been struggling with his friendships at school. He is so upset when his best friend doesn’t want to play with him and says other kids don’t understand the imagination games he likes to play. I wish I knew how to help him. I had similar issues as a kid but I don’t remember being quite so upset by it. Jack is just so sensitive.

I’ve been very surprised that lately he’s talking more about cancer, too. He found a game in the app store that is all about destroying cancer cells and he loves it! He’s also been drawing blood cells and he found a plush cancer cell on amazon. It’s a little unnerving that he is suddenly so focused on it, but I also think it’s good that he is talking about it. Maybe therapy has helped?

 

Alright, I’d better post this before it self-destructs. More soon, I hope.

He’s Here

On September 2, 2014, at 12:43am, we welcomed our new baby Desmond to the world. He measured 19″ and 7 lbs. 1oz. He was born without a single push on my part!

We are madly in love. Jack met him on his first day of life and said, “This is one of the happiest times of my life!”

Our dog Lambert is channeling Lassie and thinks he should come to Dez’s rescue at the the littlest cry. Lambert even leads David to me when Desmond needs to nurse. We keep trying to tell the dog that we have it covered but he clearly doesn’t think we’re very good at this baby thing.

I’m hoping to get the birth story up soon! Stay tuned!

What A Birthday Boy Wants

Note: This is not a sponsored post; however, it does contain affiliate links just for funsies.

Summer birthdays are tough – as I’m sure many of you know. So many of Jack’s friends are out of town on vacation or at summer camp, so we decided to schedule his party for a week after his actual birthday. He was not happy about having so little planned for THE DAY but we tried my best to make it a good day. He got cinnamon rolls and chocolate chip pancakes for breakfast, had a playdate with one friend who was in town and another with his cousin Isha, and we made a trip to Toys R Us (where he picked out a large rubber tarantula and some test tube aliens). It seemed to be a pretty good day to me, but he felt it was lacking – I’m hoping it was just due to pulse of steroids he still had in his system from the prior week.

This Saturday afternoon his birthday party will take place and we have a lot of people coming (way more than I expected)! This year Jack expressed his desire to celebrate his birthday at Rockin’ Jump, a place filled with trampolines and a foam pit. Ordinarily I wouldn’t spend this kind of money on a birthday party, but since my due date is quickly approaching, I decided it would be best to have the party outside of our house. Less cleaning, you know! So Jack gets his wish and will be joined by 14 other kids all jumping to their heart’s content for two hours. And then we will send them all home filled with cake…

One of the ‘perks’ of living with cancer (doesn’t that sound wrong?!) is that Jack qualifies for a free specialty cake through a program called Icing Smiles. Icing Smiles is a collective of bakers who volunteer to provide free specialty birthday cakes for kids facing critical illnesses. Last year he got a dream cake that was shaped like an Ent from Lord of the Rings. It was AMAZING:

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This year he won’t get the over-the-top “dream cake” but he will still get something special. A baker located in Fremont (Anything Cakes) is constructing a custom cake that will be shark- or Dr. Who-themed. Jack will be totally happy with either so we are leaving it up to the baker’s discretion. I can’t wait to see what is created! A cake seems like a simple thing to a lot of people but birthdays have a lot more meaning for us these days and it’s awesome that the day can be made extra-special with things like this.

So…what else does an 8-year-old boy like Jack want for his birthday? His interests are definitely unique – he doesn’t like the usual stuff like Pokemon, Yu-Gi-Oh, Transformers, or Minecraft (in fact, he loathes them). Instead he wants things like this:

A “carnivorous rock” plush that he designed and GypsyGarden Etsy shop brought to fruition:rockdrawing

rock plush

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A creepy cymbal-playing monkey:

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Sticky slugs:

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Toys that “eat” things/people, like Clayface:

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And, just to throw us off, the random cute/normalish thing – a plush koala:

 

He’s also happy to get books and Legos, of course. He can never have too many of those!

I’m hoping Jack’s birthday party this weekend goes well and he has nothing but fun! The steroids will be mostly out of his system so he should be in a better mood overall.

And by this time next year…he should be DONE with chemotherapy altogether and be able to have a cancer-free birthday. WOOT! I know that’s what he REALLY wants!

Jack is Eight!

I can hardly believe it, but my big boy is eight years old. And what a difference a year makes!

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Jack, age 7 (July ’13)

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Jack Age 8 (July ’14)

He is shedding his baby face a bit more every year. He is 3″ taller and 3lbs. heavier than he was a year ago, putting him at 4’1″ and 51 lbs. now. He is only 13″ shorter than me! He is so much stronger than he looks or knows – he throws his arms around me and nearly bowls me over every time.

He is reading chapter books on his own. His favorite books are the Bunnicula series of books, but he likes anything with talking animals and magic.

He is still a child, but he has moments where he shows so much wisdom. He was having a rather difficult time on his birthday because he was disappointed in one of his gifts (the one that was the largest but turned out to be something he was not interested in). He told me, “I know I’m overreacting. I know it’s just one present and shouldn’t be the only thing I focus on.”

He still loves art (drawing in particular – he doesn’t have the patience for coloring and he doesn’t like the lack of control with painting) and Dr. Who is his favorite thing in the world. He does take breaks from watching repeats of Dr. Who by checking out Teenage Mutant Ninja Turtles (shhh, don’t tell anyone – it’s a guilty pleasure for him), although he complains when he feels something in the show is inappropriate for kids.

Jack is overflowing with empathy. When I’m sick or tired, he brings me stuffed animals to snuggle with in bed and draws pictures for me. He tries to be helpful by feeding the dog and cats (I forget to reward him with tokens for it now and he never asks). When his cousin accompanied us to the toy store this past weekend, Jack asked if she could have a toy, too, so that she didn’t feel left out.

More and more, Jack is gaining independence. He helps himself to snacks out of the pantry and can pick out his own clothes. He spends time alone in his room with the door closed,  usually reading or drawing or playing with his legos or iPad. He recently took his first shower, which BLEW HIS MIND. He giggled at the feeling of the shower on his back and he said showering “feels like cuddling.” It sounds like he even prefers it to baths now.

There are still challenges, as there are at every age. He often seems caught between his childish urges and his maturing brain. He still loves his stuffed animals and sleeps with his plush menagerie (which most recently included a hedgehog, a giant tarantula, a tiny owl, the killer bunny from Monty Python, and a squirrel dressed as Darth Vader that we’ve named Darth Nut). He still struggles with a  fear of the dark and of various bugs (spiders, moths, mosquitoes). He is moody and has gotten in trouble more often lately – trying his hand at lying or outright defiance.

I am so proud of him. He’s smart, compassionate, loving, creative and funny. He is so very strong and brave, even though he doesn’t know it yet.

He is my amazing eight-year-old boy. I am looking forward to seeing what his future holds.