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.

Three Years

Jack was diagnosed with Leukemia three years ago.

It’s been three years since I heard, “This is the best kind of cancer to have.”

Jack - first day of Kindergarten, before cancer.

Jack – first day of Kindergarten, before cancer.

Three years of worrying that he could die from a cold or infection or even just a side effect of treatment.

Three years of worrying what damage the same treatment that would cure him would cause. Heart damage? PTSD? Learning disabilities? More cancer?

He’s had 12 or so lumbar punctures in the last three years.
Plus Four surgeries – two Broviac catheters placed and one removed, and the placement of a PICC line.
Three infections – one likely viral, one due to a rare bacteria, one due to a common bacteria.
Four hospitalizations.
Countless toxic drugs, blood draws, dressing changes, line flushes, doctor appointments…

Jack has lived with monthly “Roid Rage,” as well as daily headaches, stomach aches, fatigue, trouble walking, numbness in his extremities, bone pain, skin sensitivity… His appearance has gone through drastic changes thanks to weight gain, weight loss, and hair loss. He’s dealt with acidosis and pseudotumor cerebri for much of the time. His personality has changed – I no longer describe him as carefree.

He has missed so much school in the last three years – half of kindergarten, at least a third each of first and second grade. We’ve had 504 and IEP meetings – and it’s only now, three years into this, that he is getting the proper assessments.

He has developed food aversions to the things we used to try to administer pills. He won’t touch applesauce or peanut butter anymore. He avoids yogurt and nutella.

It’s been over three years since he’s gone swimming. He will do anything to avoid an extra dressing change!

It’s been grueling for all of us. We are beyond tired, beyond shell shocked. We are different than we used to be. Cancer is a part of our life now. When treatment ends, it won’t go away.

Still, we are looking forward to the end of treatment - March 20, 2015. Maybe we will breathe more easily then.

Three years is too long to hold our breath.

Jack, age 8 - Christmas 2014

Jack, age 8 – Christmas 2014

So Many Experts, So Few Explanations

We’ve seen quite a few doctors over the last week to address Jack’s recent paralysis incident and an increase in headaches that don’t want to go away. Two pediatrician visits, one neurology visit, and lots of phone calls have occured. We have one more appointment Friday with the eye doctor just to make sure things are okay.

None of the doctors had answers for us. No one knows what caused the paralysis and the headaches seem to be tension headaches. Everything looks benign and so we will do nothing for now and hope it goes away (and the paralysis incident doesn’t recur). Perhaps being out of school will help.

Jack’s pediatrician has been great during all of this. He is really good at following up on what is going on with Jack even when we don’t reach out to him directly (usually we call the oncology clinic because we tend to assume whatever is happening is probably due to chemo). He took me aside after the appointment yesterday to talk with me privately, away from Jack. He wanted to know how I was doing and let me know that that we could come to him anytime – that he would figure out what is going on so that we don’t have to. He even went so far as to say he’d noticed that the oncology clinic seems to feel that I’m a worry wart since the things I report that are happening seem to differ from what his dad’s household reports. He doesn’t seem to share this opinion with them, and understands that kids are unreliable when reporting illness – and this is especially true with Jack.

To give an example, if I reported to the docs that “Jack was feeling weak” – it would be because Jack told me that he felt like a chicken filled with whipped cream instead of bones. Jack’s dad would usually not think anything of that kind of statement coming from Jack, other than that Jack is a bit goofy and unique in the way he describes himself. If Jack reports that he got a weird shivery feeling (but he doesn’t feel cold) – I would check his temperature (more often than not he’d have a temp, even if it was slight, or it would be an early sign he was coming down with a cold). Jack’s dad would just assume he was chilly.

I don’t know if this occurs because Jack spends more time with me or just that he tells me more about his feelings or maybe I am some kind of master decipherer! But unfortunately the differences in what is reported between households has the oncologist questioning ME instead of his dad. And I guess maybe they prefer to hear that Jack is doing fine on chemo.

This is partly why David is taking Jack to more appointments these days – to show that it’s not just me (and also to spare me the stress of dealing with these jerks). But it seems that a lot of the damage has been done in the oncology office’s eyes, so we just deal.

In any case, the talk with the pediatrician yesterday was both reassuring (that we have SOMEONE who understands what is going on and who will take the lead on monitoring Jack’s care from a holistic perspective) and frustrating. It’s pretty upsetting to feel that I am not being respected by my son’s oncologist, someone I have to rely on to cure and keep my son alive, and it seems the pregnancy hormones have me a bit more sensitive when it comes to feeling judged negatively as a parent. I’m having a hard time shaking it now that I’ve been reminded.

David and I avoided asking Jack how he was feeling this morning and just sent him off to school, fingers crossed that he would last the day. And it seems he has. There are only 7 more days of school left until summer break, so hopefully we can make it through and we will all get a break from the grind.

Try Not To Worry, She Says

I spoke with Jack’s oncology office yesterday and they let me know that his chemotherapy doses are being increased again.

Back when Jack got sick last August, the chemotherapy was stopped altogether until his immune system started to recover somewhat. Then he was restarted at less than half the dose he had been on previously. It has slooooowly been ramping up over the last eight months. He’s now on about 40% of the full dose of Methotrexate and 70ish% of Mercaptopurine.

Well, now he is apparently going from 40% and 70% all the way up to 100%. I was told that a recent test showed Jack’s thioguanine metabolites were low. I have no idea what that means, but apparently it’s indicative that he should be able to handle the chemotherapy increase (at least for the Mercaptopurine – I’m still waiting for additional answers on the Methotrexate).

I’m not so sure he can handle it, though. Jack’s health has been relatively stable over the last few months but with each dosage increase he’s needed an adjustment period even though the increases have been miniscule. But now the dose is basically doubling. For instance, he’s going from taking 4 chemotherapy pills on Monday nights to 8.5. (That’s just chemo – there are the three other medications he’s taking to manage side effects, putting the total number of pills on Monday nights to 13.)

His dose of sodium bicarbonate (which is supposed to help with the acidosis he’s had for months and months) was also increased this week. The acidosis seems to get worse in relation to the increases in chemo, and yet the oncologist says that this new increase in chemo “shouldn’t” result it the acidosis worsening. Considering that history has shown otherwise, I have no idea what to think about this response.

Anyway…I’m scared. I know partly I’m more emotional than usual because of the pregnancy, but also the multiple trips to the ER last year and the crazy amounts of antibiotics and the unexpected hospital stay are all things I absolutely don’t want to repeat. I know Jack doesn’t want to, either. I know this is likely the best way to keep the cancer away, but I also know it increases the risk of other scary problems like infection. Jack’s oncologist is either not good at explaining what the treatment adjustments mean or she’s lying, neither of which inspires confidence. We deal with frequent complaints of stomach pains, difficulty breathing, and other weirdness in Jack’s body, but right now it’s manageable. I’m not confident it will remain manageable after doubling the chemo.

“Try not to worry. Things are going well,” she said.

But I do worry. Even if things are going well right now, that doesn’t mean they will continue to…

Special Needs Life

  • Every 6 weeks Jack has an ophthalmology appointment to check on his optic nerve and make sure it hasn’t been damaged by excess cerebrospinal fluid.
  • Every 4 weeks he goes to the oncology clinic for a check-up and chemotherapy infusion.
  • Every 12 weeks the clinic appointment also involves a trip to the hospital for a spinal tap under anesthesia.
  • Every 4 weeks he goes in for a nebulizer treatment to protect his lungs from pneumonia.
  • He has blood drawn for labs every 2-4 weeks.
  • There are weekly dressing and cap changes.
  • Nightly flushes of the Broviac catheter.
  • Pills three times per day…

There are also the normal appointments with his pediatrician and dentist and optometrist that happen at various intervals.

We need to add occupational and/or physical therapy in there. We need to add therapy for anxiety, too. Oh and we’ve been meaning to get a follow up from the neurologist.

Can’t forget about the random trips to the ER or stays in the hospital.

Add in school and homework. Add in my own appointments, pets, a house and a full time job. There is just not enough time – or energy – for everything.

There is no time to LIVE. And I can’t afford to quit my job or get a nanny. I’ve done the math many, many times. (And, frankly, sometimes my job is a break from all the rest of it.)

For our family, some of this ends when Jack’s cancer treatment does. If we’re lucky, Jack will be completely cured and nearly all of it will go away – cancer will be a distant memory. That’s what we’re hoping for.

But I know there are so many families out there who don’t have an end in sight to the demands of special needs. I don’t know how you do it, day after day and year after year, especially those of you who see this and say, “that’s nothing!” Maybe, like me, you just do it and then marvel at all you accomplished after the fact. Or maybe you don’t even think about it.

In any case, I bow down to all of you out there living with special needs who have gone before us and will keep on living this crazy-making life. I’m in awe of all you do.

 

Hope Versus Belief

It was a bad week. It was somewhat expected – for some reason, bad shit tends to happen surrounding my birthday. Every freaking year (the most famous year being when my brother went to jail and David lost his job). So when I heard on the Friday before my birthday that my brother had physically assaulted my mom, I knew this year would be no different. Still, I hoped it would be and all week I adjusted my birthday plans, trying to counteract the crap being flung at me.

Let’s see how that worked out, shall we?

Jack came down with the stomach flu on Monday. We spent 5.5 hours in the ER because Jack got a fever of 102 and became dehydrated from all the vomiting. Our experience in the ER was horrible. Cancer patients are supposed to be isolated from the general population…but that didn’t happen – we were told to sit in the waiting room and then the lady next to us started vomiting immediately. I put a mask on Jack and moved away from her. After an hour and a half, I had to call the oncologist on-call and asked what we should do – perhaps drive to another ER? Fearing we’d face the same kind of wait at the Oakland ER, the oncologist called to complain and we were moved to a gurney in a hallway. I later had to be asked to be relocated because a lady nearby started hitting herself violently and muttering under her breath. And nearly four hours into our visit, I asked David to call the oncologist again because we were STILL waiting for an IV and antibiotics – even though cancer patients presenting with fever should receive antibiotics within an HOUR of arrival. The oncologist chewed the resident ER doc a new one and we were given our own dedicated nurse within five minutes of that call…apparently the clinic is filing a report about the ER, as well.

poorrating

Jack has something to say about the ER visit.

Anyway, Jack started looking better immediately after getting IV fluids and antibiotics. He was doing well enough to go to school for a few hours on my birthday (Wednesday). I was feeling ill that day, so I stayed home and slept. I said it at the time and I’ll say it again – that was a decent way to spend my birthday. Nothing bad happened while I slept.

Thursday Jack woke up feeling ill again. His labs showed that he was neutropenic and we were told (with a sigh of concern) to stop chemotherapy.

Friday morning at 4:30am Jack awoke from a bad dream and started shivering uncontrollably. His temp hovered around 100 degrees. When I went back to bed, I warned David that it would likely rise above the 101.5 threshold (I had a work commitment that I could not miss). Right after Jack woke up for the day his temp spiked. He was on his way to the hospital by 8am. He was admitted and put on antibiotics for the second time that week. He was swabbed for the flu, RSV, and c.diff. The c.diff came back positive (probably acquired during that extended ER visit!) so he was put on a second antibiotic.

Jack’s ANC had somehow skyrocketed overnight, though – from 341 to 4,774. We don’t recall it ever being that high since his diagnosis almost two years ago. One of the oncologists at Kaiser said that was a high ANC for healthy people. His body is working hard to fight these illnesses. We are surprised – and concerned – that he actually has that ability considering that he is supposed to be immunosuppressed. But I guess a night off of chemo was all it took.

A bit of an explanation here: every time Jack’s ANC dips below 500, oral chemotherapy is stopped. When his ANC goes back up and the chemo is restarted, they start it at 50% of the highest tolerated amount before suspension. The dose is ramped up again over time as long as his counts stay over 500. This is at least the third time since August that Jack’s chemo dose has been suspended and restarted due to neutropenia.

Back in early August, pre-hospitalization, he was up to eight chemotherapy pills on Mondays. He is now down to two chemotherapy pills on Mondays. Two days a week, he takes no chemotherapy at all. That is not at all how it’s supposed to be to maintain remission during treatment.

Over the last four months, Jack’s body has become less and less tolerant of the chemotherapy he’s been getting for nearly two years. The doctors cannot seem to explain to me why that is. And it’s worrisome because he can’t consistently stay on high enough amounts of chemotherapy to be sure that any lurking cancer cells are held at bay.

In other words, every time chemotherapy treatment is suspended or doses are reduced, the probable success of the treatment is decreased.  And every time that happens, our worry increases. We worry when there are new symptoms with no apparent cause. We worry that so many of the issues Jack has had over the last four months so closely resemble the symptoms he presented with at diagnosis. We worry every time the oncologists shrug their shoulders.

Oncologists, don’t shrug your shoulders. My son has cancer and you haven’t seen these issues before? Go talk to other oncologists and FIGURE IT OUT.

Ahem.

When I mentioned on Friday to a co-worker that Jack was going back to the hospital, she tried to reassure me – “Jack is going to beat this.”

I hope that is true – I hope with all of my heart. But so much of this cancer journey has not gone as we were advised it would and so many things are left unexplained by our oncology team. So I’ll believe it when I see it.

Jack Star, A Poem

This is a poem that one of Jack’s friend’s mom emailed to me one morning. We were dealing with his health problems and she wanted to provide some encouragement. I’m sharing it with her permission:

For Jack (by Anonymous)
Jack you are a bright shining star
I see this star in your eyes
I see this star in your smile
my heart breaks when the star seems dim
when you don’t feel so good inside
But even when it seems dim, hiding temporarily behind a little cloud -
Your star is shining just as bright and is just waiting to burst out again when it gets its first chance
Jack you are simply amazing to me
You shine when you draw your masterpieces
You shine when you tell of your fascinating adventures
You shine when you run fast and when you take your time and walk slowly
You shine when you are quietly reading your books
You shine when you notice the littlest bug on the tip of the leaf
I bet you even shine with your eyes closed when you sleep
So many people love you and are cheering you on-
All these people are saying “we love you Jack – keep on shining!”
Jack I pray blessings for you beyond what you could ever imagine
Thank you for being you – Jack Star -
Thank you for shining so brightly to us all

Twist Me Up And Wring Me Out

It’s only Tuesday? I thought as I stared at the pill organizer. How is that possible?

The anxiety in my chest grew. But that’s what day the organizer told me it was. The next dose of medication was right there. My phone agreed that it was Tuesday, as well. I shook my head and sighed.

I can’t wait until Friday.

Yesterday had involved an insulting call from the social worker at the clinic: “Um….hiiiiii. How are you today? How’s Jack? Um, I’m calling because Gina (the child life specialist) and I thought we should sit down and talk with you on Monday about…umm…Jack’s…school isssssuuuuues.”

My reply was something like, “Right, well, I know Gina thinks it’s school avoidance but I really don’t think that’s the case. Jack is very upset with himself when he can’t make it to school. And this isn’t new – it’s been going on since treatment started – it’s just that we thought it was normal due to the intense treatment. He was missing school then anyway. But treatment is less intense now and he still has these problems and he’s supposed to be able to go to school. In any case, I won’t be there on Monday – his dad is bringing him into the clinic. You can talk to him if you’d like.”

“Oh, well, okaaaay. Well, it’s you we’d like to talk to. So, um…alright. We won’t do that then.”

And then she (absolutely the least helpful professional I’ve ever met) droned on and on. She said some stuff about how special and smart and sensitive Jack is and at some point I just tuned her out. Sure, she WANTS to help…but she is completely inept. I could hear her grasping for the proper words to use when talking about Jack’s ‘issues.’ It was painfully obvious that she was stepping lightly. She was in parenting territory, something that she’s proven before that she knows nothing about, and I hadn’t even asked for her help.

Lady, turn back now. You don’t belong here.

A couple of hours later, I chatted with our nurse case manager about Jack’s lab results. They were good enough that he could the next day’s dental appointment, but the acidosis hadn’t improved at all over the weekend, so they instructed us to increase the sodium bicarbonate from two pills a day to four. And let me know that chemo can’t be taken at the same time as bicarb or anything else…which I hadn’t realized before.

Oops. I’d been screwing up the pill administration for…oh, almost two years now. Great.

Later that evening I took my 13-year-old cat to the vet and walked out of there $120 poorer and with no definite answers. ‘Cause that’s how I like to party.

So today, as I stared at the pill organizer and the bottle of antibiotics sitting next to it, I shook my head and sighed. Really, how could it only be Tuesday?

I gave Jack four horse-sized antibiotic pills. He actually chewed them all up without incident.

I was more than surprised.

I asked Jack to pick out his own DVD to watch at the dentist office (of course he chose Dr. Who) and off we went. It would be okay…I hoped.

The appointment went well, all things considered. He certainly yowled less than he did at his last appointment. His teeth got cleaned and x-rays were taken and that’s what matters, right? Not the stand-offish dental hygienist who clearly thought that the fact that he wouldn’t sit still was a discipline issue. Not the tears all over my kid’s face from being essentially trapped while he was poked and prodded in a sensitive place.

[Take a 7-year-old who isn't a great brusher, add a blood disease and suppressed immune system that makes it dangerous to floss, and what do you get? An uncooperative dental patient.]

Halfway through the appointment, Jack complained of chest pain while laying in the tilted-down chair and it only got worse. We went to the store to grab some tums (I’m not organized enough to carry them with me wherever I go yet) and sit for a bit while I had a warm beverage to calm my rankled nerves. I had to carry Jack through the store and he slumped in his chair when we sat down. After half an hour, the tums still hadn’t helped.

So we followed up that dental appointment with a trip to the ER, where Jack got an EKG and a chest x-ray per his oncologist’s orders. They gave him Maalox and, after a while, his pain had gone from a 5 to a 1. They sent us home.

This morning in between staring at the pill organizer with consternation, giving Jack five spoonfuls of pills in nutella, and attempting to get us both out the door and emotionally prepared for the dentist, I’d forgotten to administer Zantac. I’d given him four antibiotic pills, two sodium bicarbonate pills, and one Diamox pill…but forgot the antacid, which is a liquid.

Ugh.

I bet tomorrow I’ll stare at that pill organizer and shake my head all over again.

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