You’ve Gotta Go There to Come Back

Last week I went to the Type A conference in Alexandria, Virginia. It was my first time away from my whole family for longer than a night in over 3 years! I was so excited to get some time to myself, see friends and family (my sister lives in Maryland), and sleep in a comfy hotel bed without a toddler threatening to wake me in the wee hours of the morning. Like all things worth doing, it wasn’t easy to accomplish, though!

A little over 24 hours before I was due to head out, Dez came down with a fever. I packed my suitcase while his temperature surged to 105. I worried, as I always do now when fevers strike (thanks, cancer!). Naturally, I had trouble settling down to sleep that night. And then Dave woke me up around 3am because he could feel Dez’s heart pounding in his chest and the dose of Motrin we’d given him that evening hadn’t done anything to budge the fever. I called the Kaiser advice nurse, a thing that is old hat now after all the health worries we went through with Jack, but nerve-wracking nonetheless.

sick toddler laying on a couch

I was given the usual precautions: keep him hydrated, remove extraneous clothing, try Tylenol, and take him to the ER in if his temp goes over 106. We gave Dez some Tylenol and all went back to sleep (“He’ll be fine. He’ll be fine. He’ll be fine.” repeating in my head).

I had a nightmare about missing my flight, so naturally I woke up feeling even more frantic! I made it to the airport just fine, though.

Dez was miserable while I was gone. David took him to the doctor after 72 hours of fever, whereupon he was diagnosed with an infected tonsil thanks to a random virus. There was nothing to do but let it run its course.

While that was going on, David was also working with Jack to get him caught up on math and science homework. The middle school workload is turning out to be difficult to keep up with, and we got a (surprise!) progress report recently showing that Jack’s grades were looking grim. I made a deal with him before I left that if he got caught up while I was away, he could order two books from the book fair at school (side note: Jack is super easy to bribe! It takes so little!). He had to stay up late a couple of nights and got help and coaching from David, but he did it. His grades have improved drastically already.

I had so much guilt while I was away, but I swallowed it. That’s what we have to do as moms, right? We have to step away for a bit of personal renewal and trust that our families will manage without us. And mine totally did! David took charge with doctor appointments and nursing Dez back to health and helping Jack get caught up on his homework and ensuring that his teacher recorded the late assignments. I got home and everyone was healthy and the house was even clean! Everyone had missed me, but they managed quite well without me. That felt good.

The conference itself wasn’t great, but I am glad I went even if just to let my family show me how strong and capable they are. It was worth it just for that.

What the ACA Means to Average Americans

Last week I posted something to Facebook about how upsetting it was that the GOP is taking actions to dismantle the ACA. That post ended up in the trending topics on Facebook, and I had to turn it to friends only as a number of strangers and trolls decided to chime in. I was headed out of the house for the Women’s March and couldn’t address the ugliness entering my feed, so I put it on lock down.

I thought I would take the time here on my blog to post in more detail, though, and address some of the rhetoric I’m hearing out there. I can offer some additional insight into the issues since I’ve worked in the healthcare field (to be specific, I worked in the Administration and Finance department dealing with contracts, physician payments, and Board meetings). Others in the healthcare may have a different take, I suppose, but here is mine.

First, a note: There has been a lot of spin about what the Affordable Care Act (a.k.a. Obamacare) is and why people want it. Republicans have lobbied hard against the ACA for years. Many people have forgotten that the original iteration of the ACA was torn apart by Republicans and what we were left with is just a shadow of what President Obama intended–literally, the bare minimum he could get through Congress. There are a lot of things wrong with the ACA, of course, and that is in large part because of the refusal of Republican lawmakers to work with Democrats during that time (and since). Some states were able to develop their own ACA-related programs to address the holes in the law, and some were not. So in many areas around the country, insurance companies have hiked rates because there is little or no consequence to them.

Ewokmama.com: Why we Need the ACA

Logistics of implementation aside, I want to make it clear that my support of the ACA is not about wanting free healthcare for my family. In fact, we don’t have insurance through the ACA programs. We have an employer-sponsored plan because we are lucky enough to be in good health and able to work. The unemployment rate is pretty low at the moment and my husband and I have pretty secure jobs (as secure as any job is these days).

With that said, the tenants of the ACA impact ALL healthcare plans. See this article for more on that.

When I use my family as an example of why we need the ACA, it’s because my family is pretty typical. Our circumstances are subject to change at any time, just as most Americans who don’t have a hoard of cash as a safety net. We are living paycheck to paycheck and have credit card debt and have experienced lay offs in the past. We have a house and cars, but those things could easily be taken from us if we hit hard times–just like so many other Americans.

There are many, many Americans who do not have employer-sponsored plans. Some are unable to work, perhaps due to illness or because they are caregivers. Some are self-employed or work with small companies that do not offer healthcare. Some have lost their jobs–most people I know have experienced a lay off at some point in their lives! The ACA is meant to help all of these people and prevent them from going into catastrophic debt from which they can never recover.

You can easily google “how much does cancer cost” and find out just how financially catastrophic that diagnosis can be.

And then there are those pre-existing conditions clauses. These do directly impact my family. My older son, a cancer survivor, is considered to have a pre-existing condition. That will never go away. He cannot hide it because he will need monitoring for the rest of his life to catch any other issues that cancer treatment causes. I have mild asthma and a history of mental health issues. My younger son has Reactive Airway Disease, which is often a precursor to asthma; he is only two–who knows what else will come up for him.

Prior to the ACA, even employer-sponsored healthcare plans could exclude us from coverage for periods of time. Prior to the ACA, and before I had employer-sponsored healthcare, I was denied private healthcare insurance due to a history of mild asthma and depression. I could not afford to pay for the medications to treat these health issues out of my pocket, so they went untreated.

When people cannot afford to take care of their health, that impacts their ability to work and be fully functioning members of society. Their health problems do not magically go away during that time!

Now let’s talk about hospitals. Did you know that if someone shows up in an Emergency Room, the hospital cannot deny them care even if they can’t pay? Some uninsured patients that show up in ERs are able to qualify for Medicaid (which, I might add, also doesn’t reimburse the hospital 100% for cost of care), but some are not. So many hospitals are taking on the cost of caring for uninsured or “under-insured” patients. If there is a large number of these people who need health services and cannot afford to pay for them, the hospital accrues large amounts of debt. The hospital has to then raise their rates for the rest of us to make up for the gap in operating costs.

And what happens if we refuse to pay those higher hospital bills? Well, in many cases those hospitals get shut down. This was a major issue for the Catholic hospital where I worked in rural northern California. It nearly shut down. Hundreds of people were laid off to keep it operating!

These issues snowball. Rural hospitals and facilities in debt have trouble hiring quality medical staff. The quality of care goes down. More mistakes are made and more lawsuits happen. People die, and costs continue to skyrocket.

This was happening in rural areas all over the country before the ACA. And these rural hospitals are still struggling due to key provisions missing from the ACA.

But if the ACA is repealed, it doesn’t fix any of these problems. We just go back to large numbers of people being uninsured or under-insured!

We need to fix the ACA. We need healthcare reform to hold insurance companies accountable–not a big gaping hole.

Please, call your representatives and demand they either KEEP THE ACA or develop SOME sort of bandaid in the mean time!

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.

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.

So Many Appointments

Jack has so many appointments. ALL THE TIME. Chemotherapy is only part of cancer treatment – there are a lot of extras that come along with it. Bonuses, if you will. (Ha!)

This is a snapshot of Jack’s January appointments – minus the things I’ve pushed off into next month, like the one that checks that his spinal fluid pressure isn’t damaging his optic nerve or the echocardiogram to measure organ damage from 3 years of chemo. It also doesn’t include the learning and psychological assessments he’s had at school this month.

January 2 – Ultrasound to check for damage to veins from Broviac catheter (looks good! whew!)

January 9 – Therapy

January 12 – Pediatrician due to dizziness, fatigue, headaches, nausea (inconclusive!)

January 15 – Lab draw (to hopefully explain dizziness, fatigue, headaches, nausea)

January 16 – Breathing treatment

January 20 – Lumbar puncture, oncologist exam, chemotherapy infusion

January 21 – Eye exam

January 22 – Dental cleaning (if his platelets and white blood cell counts are high enough)

January 23 – Therapy

January 27 – ADHD Assessment

As you can see, the longest stretch we’ve gone without making a trip to Kaiser was 7 days. BUT! Add on Desmond’s well-child check (January 5) and that stretch disappears.

I think we might spend more time at Kaiser than at home.