Progress in Getting a Better IEP

After many years of back-and-forth with Jack’s school, we have finally gotten an IEP that I think we are all happy with!

For the first time since we started meeting with the educational team at the school back in 2013, they didn’t fight us on where Jack is academically. Everyone agreed that he is demonstrating the long-term effects of his cancer treatment. Everyone agreed that what we’ve been doing so far has not helped. Finally, the school accepted that the holes in Jack’s learning would not just magically fill up again now that chemo is done. They have conceded that Jack has a huge gap between intellectual ability and academic achievement in math due to processing problems (i.e. dyscalculia), memory, and attention issues.

fear of math

Does not compute… Photo © Jimmie, Creative Commons usage.

I can’t tell you what a relief it was to walk out of that IEP meeting last week and have plans in place – not just HOPE but plans.

Jack has four new goals written into his IEP, including learning to tell time*, learning to count money, practice basic math facts so that he can get 80% accuracy, and fraction learning in the resource room prior to learning it in the classroom. Accommodations will include shorter assignments, untimed classwork, and the teacher will make sure he understands instructions/repeats them back before left to do the assignments.

Jack previously had time one day per week in the Resource Room (which amounted to 75 minutes per month) along with two other students and no individual help. Now he’ll spend time three days per week in the Resource Room and one of those will be solo with the resource teacher!

It feels like the future is looking brighter! Even if these things don’t work, we’ll know more about whether Jack can learn certain things if taught in a different way or just…not at all.


* Jack has no concept of time – not hour of the day, not day of the week, etc. He can’t tell how long something takes or how much time has passed – whether it is nearing bedtime, whether it’s late or early in the day, or what day tomorrow is. He floats along and has to have everyone around him tell him what to do next. This makes time management impossible! Part of the problem is that he can’t hold onto information about sequences longer than maybe two steps (so even if he does know that today is Monday and tomorrow is Tuesday, he has no clue where those days fall in the sequence of the seven days of the week). Another part of the problem is that he has trouble with assigned meaning of things – i.e. a quarter is worth 25 cents because someone long ago decided that was the case; the value isn’t inherent to circular pieces of metal of that size. He can’t wrap his brain around that. It’s like it’s another language that he can’t comprehend – the language of sequences and numerical meaning.

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.

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.

End of Treatment!

Jack’s been off treatment for over a month! I’ve been terribly remiss in posting about it here. We took a few pictures, though. The first is his last day of chemotherapy in the clinic. The second marks the last day of oral chemotherapy altogether!

We’ve already seen a big difference in Jack. He is full of so much energy now! He has a huge (it seems to us, anyway) appetite! He’s waking up on his own a lot in the mornings rather than needing to be dragged out of bed. It’s AWESOME!

His Broviac catheter has been removed from his chest, as well. That is both good and bad. Good because we don’t have to go to the ER for a fever anymore and we don’t have to worry about dressing changes! Bad because it means now Jack needs to get blood draws with a needle from now on…

And he is deathly afraid of needles.

We tried to get labs drawn this week and it was a miserable failure. We are now looking at finding a therapist who specializes in EMDR (a therapy used for PTSD) in kids to deal with the trauma issues he has developed. We need to get this done soon and quickly! We can also try a finger prick approach, but I am not convinced that will work any better than a needle in the arm. Even if it does, he needs more therapy – his fears and nightmares (and NIGHT TERRORS) are still terrible.

So, that’s where we’re at with that. We are celebrating the end of treatment tomorrow by hosting a party in Tilden Park. Jack has come up with some cancer-themed games he wants to play and we’ll eat, drink, and toast to the fact that we survived the last 3+ years!!

Fuck cancer, y’all.