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 -

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.

Let’s Talk About Measles

There is an outbreak in the US. And it’s in California. And, more specifically, measles are in the county I live in. Patients have been treated for measles at the hospital where Jack receives chemotherapy treatment, even.

I’ve been really good about not freaking out, even though I have every right to freak out. I have no explanation for why I am not coming completely unhinged as the news reports more and more measles cases every day.

Both of my kids are in danger. Desmond, at 5 months, is too young for the MMR vaccine and chemotherapy has wiped out Jack’s immune system – including many, if not all, of the immunities he used to have. Jack attends public school and Dez goes to daycare. Jack won’t be able to get the live virus vaccines (MMR & Chickenpox) until a year post-treatment – so, March 2016. Dez will receive his immunizations after his first birthday in September (at least, I think that’s the case – Jack’s health status may delay that!).

Until then, it feels like my kids are sitting ducks.

I know there is a debate right now about keeping unvaccinated (by choice) kids out of schools. I am not convinced we can require everyone to vaccinate, but frankly, I am not arguing against making it mandatory to attend public school – it would certainly make me feel better to know that Jack was that much more protected against a nasty disease that could kill him while going about normal life.

At the same time, I can see the case being made that immuno-suppressed kids be kept out of school, too. I mean, the measles could kill Jack. So why wouldn’t I sequester him?

How can I do that, though? How can I take more away from Jack? He has missed out on so much over the last three years. He has fought so hard to beat cancer and to live as normal a life as possible. He missed half of kindergarten and first grade and so many other days of school, and it has had an impact on his educational performance, as well as his self-esteem. I don’t want to take more away from him!

Further, he’s in danger at places besides school. When I took him to the oncology clinic a couple of weeks ago, we were advised to put a mask on him while in the elevator because there were measles patients being treated at that hospital.

It hadn’t occurred to me that he would be in danger at the oncology office, of all places! And, COME ON! It’s 2015! Measles has no place being on the top 10 list of things I worry about!

In any case, have you ever tried to keep a mask on an 8-year-old? It’s near impossible for longer than 20-30 minutes. And what about a drooling, grabby 5-month-old? That’s just plain crazy-making! (It’s a fun idea for a party game, though.)

So, what I’m saying is…I’m relying pretty heavily on those around me to keep themselves – and us – safe. I’m relying on herd immunity to protect my kids from vaccine-preventable disease because I am powerless at this point.

And, unfortunately, there are many in my community that don’t even think of my kids when they refuse vaccinations. Instead, they think measles is not a big threat to them. They think a vaccine is more dangerous than the disease itself.

All I can think is…is this real life?

Write a Letter to Santa and Help Wish Kids!

Between November 7 – December 24, visit your local Macy’s store or Macy’s Believe online to submit your child’s letter to Santa and help make dreams come true for Make-A-Wish kids around the country. For every letter received through December 24, Macy’s will donate $1 to Make-A-Wish (up to $1,000,000).

Jack LOVES the idea of Santa. In prior years he has written Santa several letters, made him cards, even even built a shrine in his room. At eight years old, it seems that he might be starting to waiver in his devotion and questioning a bit more, but still – he wrote a letter to Santa this year, asking for a haunted house and asking that Santa respond if he got the message. He included his very own “return receipt,” which was a drawing of some toys and dashed lines to indicate where to cut.


Santa dutifully responded and Jack was beyond excited. He just knows Santa will come through for him.

David and I set to work looking for a toy haunted house. We didn’t find much, but we didn’t want Jack to feel let down by Santa, especially on the last year he’s likely to believe in him. So we bought a dollhouse and developed a plan to paint it, sand it, and turn it into something haunted. I was also able to find a “monster bucket” on (post-Halloween) sale so that should help us haunt the place up.

This may seem like a lot of effort, but Santa is just one small thing that adds magic to Jack’s life amid all the hardship he endures due to Leukemia. Make-a-Wish helped in this effort this summer, as well, when Jack was granted his wish for a TARDIS bedroom makeover. Jack is still delighted by his room and with the granting of his wish, we saw a happiness in him that we haven’t seen in a long time.

He's in love.

He’s in love.

This holiday season Macy’s is helping to bring magic to more kids with their Believe Campaign by working with the Make-a-Wish Foundation! This year marks the seventh year of Macy’s Believe campaign, which invites believers of all ages to drop off letters to Santa at any Macy’s store by depositing them in special, designated Santa Mail letterboxes. You may also submit your letter online at

For each letter received by December 24th, Macy’s will donate $1 to Make-A-Wish, up to $1 million, to grant the wishes of children (like Jack!) with life-threatening medical conditions. Last year, Make-A-Wish granted the wishes of more than 14,000 children across the United States. A wish is granted every 38 minutes!

Here in the Bay Area, Make-A-Wish is working on granting the wish of 4-year-old Joysse, a girl from San Mateo who was diagnosed with Leukemia. For her one true wish, Joysse asked for a princess party complete with purple and pink decorations, a princess dress with a cape and crown, cake and ice cream and more! She is so excited that she asks her mom, Gabriela, about it every day. Her party is scheduled for January, but as a surprise, Macy’s will be helping her prepare for her wish with a very special celebration at the San Francisco Union Square location.

To help kids like Jack and Joysse this year, make a trip to Macy’s or visit them online to submit your child’s letter to Santa. It’s totally free for you and yet you will get the satisfaction of knowing you’ve helped bring some magic back to the life of a child with a life-threatening illness!


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

CA Prop 46 – A Flawed Bill With Negative Impacts On Healthcare

Disclosure: I attended a luncheon hosted by No On 46 in order to learn more about this bill. I was not provided any compensation for this post, and all opinions expressed are my own based on my personal healthcare experiences.

Nearly a month ago, I attended BlogHer ’14 in San Jose. Typically I come home from BlogHer energized and inspired to write, write, write. And I did have some of that, but mostly my mind has been focused on the impending birth of my baby (ANY DAY NOW!).

With that said, I attended a number of healthcare-focused panels during BlogHer. After working* in a hospital in a rural area for several years and then spending an extensive amount of time in hospitals with my son while he’s been fighting Leukemia, I’ve learned a few things about the healthcare system. Still, I didn’t realize how relevant this bill was to me until I learned more about it at BlogHer.

If you’re a California voter, I hope you will take the time to read this post and learn more about this bill (the full text of which can be found here), as it will have impacts on everyone in the state who utilizes the healthcare system. And then, of course, cast your vote in November!


The three main components of California Proposition 46 are:

  • It raises the cap on the “pain and suffering” portion of medical liability rewards from $250,000 to $1.1 million.
  • It requires both random drug and alcohol testing, as well as routine testing of physicians who are involved in any medical procedure that has an associated “adverse event.”
  • It requires practitioners and prescription drug providers to consult a database prior to prescribing controlled substances to patients.

The rationale behind this bill is that it will deter or prevent prescription medication abuse by patients who “doctor shop” in order to get controlled substances prescribed to them, and hold medical care providers accountable for any fallout events that could result from medication and drug abuse (by both physicians and patients). This is supposed to increase patient and public safety by decreasing the number of adverse events associated with healthcare procedures, and thereby decrease the number of lawsuits. The bill was created in response to an incident in which two children were killed by a driver under the influence of alcohol and prescription painkillers. (Please take the time to read that article – it will provide a lot of context for the motivation behind the bill. After reading it, I would ask that you contemplate whether this bill would actually have prevented the death of those children.)

On the surface, the bill sounds like it addresses a number of issues and would save lives. But, as most of us voters know, there are many bills that make it onto the ballot every year that aim to do something good, but fail to deliver due to flaws in practical application. Prop 46 is one of these flawed bills.

I’ll take this point by point and offer my perspective, as both an individual who has worked in the healthcare system and someone who uses that system extensively, on why this bill is significantly flawed and would actually end up doing more harm than good here in California.

1. It raises the cap on the “pain and suffering” portion of medical malpractice rewards from $250,000 to $1million.

If the cap on what can be awarded to those who file a lawsuit against medical practitioners and hospitals is raised, that additional award money has to come from somewhere. Medical malpractice suits WILL happen, and to accommodate the increased amount of funds that will be awarded, providers and hospitals will need to increase their liability insurance coverage. This will cost them more, and they will pass the cost onto patients by increasing the price tag on procedures or insurance premiums.

What I know from processing contracts and facilitating physician recruitment in a rural California hospital is this: many physicians, particularly specialists, end up closing their private practices due to the high overhead of liability insurance. They move to practicing medicine in HMOs or they leave the state. Hospital systems can negotiate better insurance rates for liability insurance due to the bulk amount they require – independent physicians do not have that bargaining power and end up paying more for liability insurance (even if they don’t end up in lawsuits). This is why seeing independent specialists and doctors in private practice costs patients more.

This hits low-cost clinics – like Planned Parenthood – particularly hard. Many clinics (primarily used by low-income individuals, teens, those without insurance, and minorities) are already struggling to keep their doors open and retain physicians to provide services with little or no pay, and offer quality care to patients.

Note: current law specifies unlimited awards for a patient’s medical costs, punitive damages against the practitioners, and lost wages/earning potential associated with a medical liability case. The current cap of $250,000 only applies to pain and suffering awards.

2. It requires both random and routine drug and alcohol testing of physicians who are involved in any medical procedure that has an associated “adverse event.”

I’m not against drug testing of medical practitioners – patient safety is absolutely paramount and I certainly don’t want someone under the influence in charge of my health! However, more drug testing equals higher costs – the bill as written requires hospitals to bill physicians for these costs. The costs are there whether the practitioners are testing positive or negative for substances, and again increases the cost to physicians of practicing medicine in California.

Aside from the cost factor, the bill would require that practitioners who are involved in a case that resulted in an adverse event (even if that event turned out to be accidental and not related to physician negligence) be suspended from practicing medicine until positive results are investigated [see Section 2350.30(b)].

So, for example: a patient claims to have suffered extra injury from a surgery but it’s not reported until after the procedure (days or weeks or even years after – a statute of limitations on the discovery of adverse events does not appear to be written into the bill). The medical professionals involved in the surgery are sent for drug testing – after the fact (because time travel hasn’t been invented yet). Perhaps they test positive for Vicodin (an opioid) in their system due to a dental procedure they had that day (the day the drug testing is required, which is who knows how long AFTER the surgery on the patient) and said Vicodin wasn’t prescribed by a third party or it was leftover from a prior procedure. (Or maybe the physician smoked marijuana to relax after a particularly intense day of surgeries and they don’t have a prescription!) Their license is suspended until the courts investigate the practitioner and obtain proof that they were not under the influence during the surgery.

How in the world is anyone to know if the physician was under the influence while practicing medicine if the drug testing occurs after the fact? No one can know that, so the (possibly unintended) result of requiring drug testing is that medical practitioners involved in adverse events are presumed to have been under the influence and punished for being under the influence (due to the temporary license suspension) even if it’s impossible to prove that drugs were not involved in the event.

[Note: Prop 46 defines "drugs" as marijuana, cocaine, amphetamines, opiates, and phencyclidine (PCP).]

3. It requires practitioners and prescription drug providers to consult a government-run database prior to prescribing controlled substances to patients.

This portion of the bill is intended to thwart drug-seekers who abuse medications such as prescription painkillers by visiting multiple doctors in order to obtain multiple prescriptions. Any time a medication from a list of controlled substances is prescribed by a physician or the prescription is filled at a pharmacy, the medical professional must first check the CURES database to see if that medication or something similar has been given to that patient before and how often and by whom.

Patient privacy comes into play here because any physician or pharmacist who logs into the database can see your medical history – not just your primary care doctor. Also, law enforcement has access to the database, regardless of the fact that they do not have pharmaceutical training.

In addition, the database is a government-owned and run program. The technology is not up-to-date; it’s slow and unreliable and cannot currently withstand the additional load to servers that would occur if every physician and pharmacist in the state was required to log in every time a prescription was being written or filled. (In September of 2013, Senate Bill 809 was introduced and passed into law, which required upgrades to the CURES database; however, that process was expected to take two years. If Prop 46 passes this fall, it goes into effect immediately – about a year before the upgrades to the database are due to be completed.)

When a physician or pharmacist cannot log into CURES due to a slow server or a crashing system, patients (including those who are NOT drug seekers) will be denied prescription pain relievers. Once again, this issue would hit rural areas the hardest because technology is notoriously behind the times. Even if rural hospitals and clinics have up-to-date physical hardware, internet speeds are rarely optimal.


One last thing that I feel is important to point out as a strong indicator that Californians should vote no on Prop 46 is the list of supporters (1 senator and 3 organizations) vs. opponents (I’m not actually going to count that gigantic list but it includes officials, doctors and medical groups, medical societies and business groups, labor unions, hospitals and health centers, insurance companies, and other groups such as the ACLU and the Civil Justice Association of California).

* My work in a rural northern California hospital included legal contract tracking and processing and physician recruitment support. I worked with the Business Development, Finance, Risk Management, and Legal departments during my tenure. The hospital’s patient population overwhelmingly consisted of low income people with Medicare coverage and due to the rising costs of healthcare combined with low reimbursement rates from insurance companies, the hospital struggled to stay in operation. Further, it was extremely difficult to recruit quality, experienced physicians to the area due to low compensation compared to the high cost of practicing medicine.