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.

Random Notes – aka CliffsBlog

After today, Jack has three lumbar punctures left before the end of treatment (March 2015). That makes me happy. I’m trying to focus on that and not the fact that yesterday, I noticed Jack has tiny scars on his lower back from all the lumbar punctures over the last couple of years.

I’m 24 weeks pregnant and I’ve gained 3 lbs total. I don’t know what to think about that! (When I was pregnant with Jack, I’d gained 20 lbs by this point.) The baby is clearly growing, though, so my doctor says it’s fine.

We haven’t decided on a name for the baby yet. I am (irrationally) worried this baby will never have a name. It’s not that there are a lack of names out there but nothing seems to be “the one.” It feels weird to not know what this baby’s name will be.

Make-a-Wish is coming out to our house on May 22nd to start the interior design phase of Jack’s room makeover! Yay!!!

So far, Jack is physically doing okay with the increase to his chemotherapy dose. Mentally, things aren’t so great and his anxiety has ramped up along with homework (math) difficulties. We found out at his appointment today that the chemotherapy dose is being increased yet again (that makes increases 3 weeks in a row) because he grew a bit since he was last in. And his ANC came back SUPER high, which really made me nervous at first but the nurse case manager said that it’s likely just a sign that he has finally gotten over whatever hit him so hard last August. So yay for that!

We are very much looking forward to the end of the school year in FIVE WEEKS.

Jack is wearing new shoes! He actually has two new pairs! He hasn’t put those freaking fur-lined boots on in over a week. Instead he’s trading off between Crocs and a pair of New Balance sandals. He wears them both with socks, but hey! I’ll take it!!!

This weekend we’re going to Camp Okizu (a free camp for families dealing with cancer). That will be a nice break for us and allow us some time to connect with other families in the cancer community. We’ve heard a lot about how people meet other families at the hospital/clinic but that hasn’t been the case for us. Generally the patients don’t mingle at Kaiser. We’re rarely in the waiting room with other families and the clinic booths are separated by curtains. So anyway, it’s nice to be able to chat with other families at camp who’re going through the same things as us.

Lastly, I had a wonderful Mother’s Day. David brought me fresh Starbucks, a donut, and made me breakfast in bed. He pulled some poppies from our backyard and put them in a vase for me, as well. I got to nap a bunch and then I took Jack to Build-a-Bear. We finished the day off by having Japanese delivery for dinner and watching Game of Thrones. I am cherishing the relaxing day because next year will likely be more chaotic with the baby in the house!

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…

No IEP For Jack

David and I met with a team of teachers and specialists at Jack’s school on Tuesday to go over my request for IEP assessments for him. Even with the 504 accommodations in place, he has had increasing difficulty completing schoolwork, gets very frustrated and can’t seem to stay on track with homework, and he fights fatigue and physical discomfort constantly. From day to day, and sometimes even moment to moment, Jack can’t remember what he is supposed to be doing or how he is supposed to be doing it. This is particularly a problem in math and it often takes him an hour to do 2-3 math problems for homework, if he hasn’t been reduced to tears and stormed away from the table.

In preparation for the meeting, I printed out loads of information on learning disabilities and the effects of cancer treatment on students, including information on dyscalculia. I also had a one page write-up about Jack’s strengths and the challenges we’ve noticed. I did end up sharing the strengths/challenges page, but never got around to the other stuff because, essentially, none of it matters – Jack is doing too well in school (between 90-100% in all areas) and would be very unlikely to qualify for any special education services.

To put it more plainly, Jack’s loss of abilities/skills won’t qualify him for additional educational services unless/until he starts failing in school. He can go from being an A student to a C student and still not qualify. In fact, he needs to be 1.5-2 grade levels behind his peers in order to qualify for services under IDEA.

Furthermore, at this point in time Jack is still missing so much school that the specialists who would do the assessments would be unable to say that the issues he does have are related to learning disabilities (brought on by a health impairment) and not just due to his lack of attendance.

That’s a bit backward, if you ask me. Part of the reason he has low attendance is that he struggles so much in school already and wears himself out. If he attended school even on days he’s clearly exhausted and not up for anything, he would likely fail in his schoolwork more noticeably and thus qualify for services…but at the cost of his health.

That’s just not worth it.

So, right now, Jack won’t get an IEP. He still gets the 504 accommodations, thankfully. Some new accommodations were added, such as visual prompts to keep him on task, a tutor 2 hours a week, and inclusion in adapted PE (which isn’t limited to IEP students) once a week. He is to work on homework for no longer than 40 minutes each day regardless of how much he finishes (unless he feels like doing more).

I am conflicted about the success of the meeting. It’s hard to feel positive when it feels like things won’t improve much (if at all) as far as school goes. The struggle will still be there; we’ve just been given the OK not to fight so much.

On one hand, I’m proud of Jack for finding ways to keep up in school. He is fighting hard to be a good student and keep on learning. He has come up with creative ways to do those things. I’m in awe of him for how he is handling all the challenges he faces.

I also understand that there is limited availability for special education services. There are many other kids who need those services more than Jack does. We are very lucky that Jack isn’t struggling more than he is.

On the other hand, I wish he didn’t have to fight so hard in school when he also going through so much healthwise. I wish that the emotional impact of the extra effort he puts forth in school was taken into account. It would be nice if his personal potential was a little more important than just teaching him the bare minimum necessary to get to the next grade.

We are set to meet with the 504 team again in April to see how the accommodations are working for Jack. If things get worse, we can always ask for the IEP assessments again and maybe at that time attendance won’t play into it. There will also be different curriculum being taught at that point in time, so Jack’s academic performance may be different (especially as his chemotherapy dosages are increased again – he is currently on about 40% of what he’s supposed to be taking).

I’m still hoping to get Jack help in other ways. I’ve got an application in with our county’s Children’s Services department because Jack may qualify for occupational therapy through them. I am also getting him set up with a pediatric therapist next week, which may be helpful in reducing his stress and anxiety over school.

And, well, who knows – this could all become a non-issue in 13.5 months when Jack finishes treatment. One can hope, right?

Frustration With Kaiser Oncology

Jack’s health has (thus far) improved since he received vancomycin for the latest bout of c.diff. He was noticeably more energetic and all around happier within days of starting the antibiotics. It had been quite some time since I’d seen him run his mouth a mile a minute and run and jump all over the place. It was refreshing (and, yes, a little exhausting).

Jack’s ANC numbers, which climbed immediately upon his treatment being suspended, are still very high – the highest they’ve been in the last two years. They have remained high due to the fact that he is taking very, very small doses of maintenance chemotherapy since his hospitalization in August last year. In fact, the oncology team has expressed more than once that they are concerned about the low dose. The worry is that it’s not enough to keep the cancer at bay. But since August, every time the dose of 6mp and methotrexate are increased, his white blood cell counts plummet so the increases have to be made very conservatively.

Frankly, the oncology team seems frustrated. Jack tolerated much greater amounts of chemo for almost two years and they really don’t know why it’s suddenly a problem. And it sounds to me like they aren’t fond of the fact that they don’t have an explanation for what is going on (the test for 6mp sensitivity comes back normal, but he has symptoms of sensitivity to it anyway). The commentary from the oncology team is confusing and, often, seems to deflect the blame toward my kid or me…

“We think labs are being drawn too often.” – to which I replied that I am drawing them when they ask me to…

“We think this is school avoidance.” – so you’re saying that a psychological issue can wipe out white blood cells? Are we just ignoring the two c.diff infections now? Are you saying he caught it on purpose in order to get out of school? And we’re manufacturing the fevers somehow?

“The majority of kids on these medications do not have these problems.” – okaaaay…but my son DOES so what do we do now?

“We really don’t think this is related to any sort of relapse.” – I asked the question ONCE but you keep feeding me that line out of nowhere, so it kinda has me thinking that’s EXACTLY what you’re worried it is related to…

On Tuesday Jack was feeling unwell – he had pain in his stomach, his chest, his head and eyes(???), his hands and feet – all of which were unrelieved by Tums and Tylenol. It was two days post-6mp-increase and the day after an increased dose of methotrexate. I emailed our case manager to let her know how it was going – a warning in case this is the sign of another downhill slide of white blood cell counts – as it seemed pretty clear to me that the pain was related to the increase. I asked for nothing – I just wanted to keep her posted on his condition.

Here’s the reply I received:

“I’ve reviewed your concerns with Dr. Goodman and we are reluctant to validate the increased chemotherapy is the cause since the dose is still extremely low.

Looking back, from October 2012 to August 2013 he was taking approximately 3 times his current dose without any of these similar issues. I do not feel we can attribute his complaints of transient pain to an increased oral chemotherapy dose.

If you think nausea is playing into this, you should try Zofran once at night with his oral chemotherapy and again in the morning to see if this alleviates some of his complaints.

I would also like to emphasize that the overwhelming majority of kids tolerate full doses of these medications without complaints. The most common complaint is nausea on days (usually the morning after) when kids take their oral Methotrexate, but even that is not very common.

Ellie didn’t bring in Jack’s pain diary at the last visit. I recommend you and Joseph commit to keeping a pain diary (you can use a simple google calendar – it doesn’t have to be complicated!) for Jack’s pain and bring this into his next visit.

Please feel free to call if you have any concerns or questions about this email.”

I still have yet to respond. I don’t know how. I am trying (and failing) to not feel offended by the tone of the message.

My son’s care is in the hands of this oncology team and yet they are so dismissive of his experience. Not only that, but they don’t seem to know what they are talking about – I’ve done enough reading to know that others DO have these issues with 6mp and methotrexate (it was easy enough to find parents talking about the same thing going on with their kids when I did a google search) – or they are just straight up lying to me. I don’t understand why they would do that, though.

I’m hopeful that Jack remains fairly stable (he has felt much better since Tuesday) and glad he’s been doing much better overall. Still, I wish our oncology team was better at instilling confidence in the treatments they’re using. I wish they didn’t alienate us like this and instead tried to offer some support or even a little sympathy!

Perhaps Kaiser’s relatively low premiums don’t pay for things like concern for quality of life, though.

Two Years Behind Us

Two years ago I woke up to confusing blood test results that Google told me could be very scary. A call to the pediatrician didn’t relieve my fears, especially when he gave me his direct line and said he’d be following Jack’s case very closely. We headed to the hospital where Jack was admitted and more tests were run. On January 8, 2012, it was confirmed that Jack had Leukemia.

Jack was in Kindergarten. David and I had been married just a little over a year and were gearing up to add to our little blended family. That plan was immediately set on the back burner as our lives started to morph before our eyes. Jack was taken out of school and wouldn’t return for ten months.

The last 24 months of cancer treatment have been difficult. Even when life was carrying on and Jack was able to attend school and feeling decently well, the worry was there. Cancer treatment is unpredictable and, frankly, can be as dangerous as the disease itself. When we didn’t worry about cancer, we worried about heart failure or infection or a myriad of other side and/or late effects.

We still worry about those things, but being over the ‘hump’ of the three-year treatment has given us some degree of relief and confidence. Fourteen months from now – next year – Jack’s chemotherapy treatment will be complete. The road ahead no longer seems unfathomably long, even though I’m sure that cancer will always be part of our lives.

For now I am focusing on that last milestone – that final day of chemotherapy. We’ve made it this far and our boy is still with us. We can keep it up for another fourteen months – we can do this.

 

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.

School, Special Needs and Sugarcoating Childhood Cancer

Yesterday I met with Jack’s principal and the district nurse to update our 504 plan. We are getting access to a home educator three hours per week to work with Jack when he can’t make it to school. I have to give HUGE props to Jack’s teacher – she has really stepped up to get us support and arranged this meeting in the first place. I can’t even express my overwhelming gratitude toward her! I’ve been much too occupied with trying to get Jack’s health stabilized and was just going to wait on the school issue (especially since he was keeping up anyway). But it was done for me! People can be really amazing!

I brought a letter with me from our oncology office regarding the need for IEP assessment, as well. Back in the spring when I requested an IEP process be started, I apparently did not do it in the exact right way because the district ignored it and had the school work with us on a 504 plan only. I didn’t fully understand the difference between IEP and 504 at the time, so I didn’t push the issue. Since then, I’ve learned a lot more about supporting kids with cancer in school and seen that even this far out, new side effects can pop up. At Camp Okizu earlier this year it was made clear that IEPs are really important for kids with cancer because even if they aren’t showing any significant issues right now, late-term effects are very common. Baseline testing can be really, really valuable when/if problems pop up later.

So when Jack was hospitalized in August, I brought up the issue with the hospital social worker and she drafted a beautiful letter for us! I’ve been sitting on the letter because Jack has barely been IN school anyway – it could always come later, I thought.

The principal took the letter in stride, but the district nurse was clearly flustered by it. Immediately reasons why she thinks we don’t need an IEP came pouring forth. I don’t completely disagree with her – Jack has to be in school to get services and he’s barely been there at all right now. Plus, the IEP requires a lot of assessments and that can be strenuous.

But then the district nurse said, “Well, treatment has come a LONG way! Most kids don’t have any lasting effects!”

And then I kind of wanted to punch her.

I wanted to tell her about how few new treatments have been approved for use in children and that oncologists are still using the same drugs developed between 1950-1970. In fact, the FDA has only approved ONE new drug exclusively for pediatric patients in the last 20 years – despite the fact that the prevalence of childhood cancer has risen 20% in that same time frame*.

I wanted to tell her that she’s wrong – in fact, two thirds of kids will have long-lasting chronic conditions that are caused by the very treatment saving their lives.

I wanted to point out that while more kids are surviving cancer, side effects from treatment are still a huge challenge. Quality of life for childhood cancer survivors needs a lot of improvement.

I didn’t say those things, but I did tell her that Jack had been screened for sensory issues and further testing was recommended. I informed her that we’ve already seen an impact on his abilities in math and physical education. I told her we need a baseline in case he has complications later.

“Well, we don’t want to push him physically when he is going through treatment,” she said.

Ugh. First, you don’t need to tell ME that. Second, that’s not what this is about, lady! It’s about preventing further decline and ensuring the best possible future for Jack.

The nurse did point out that an IEP does not provide a home educator, which makes the 504 more beneficial at this time. But the home educator was apparently a special benefit anyway and it ends January 7th. Because of that, we agreed to stick with the 504 for now and then meet again to reassess in January (which happens to work anyway – not much to be done about any of this during the holidays).

I came out of the meeting with mixed feelings. I am happy that the school is supporting Jack with the 504 plan and there was absolutely no hesitation as far as that was concerned. I’m a bit concerned about future struggles related to the IEP and assessments, though. I’ve heard a lot of negative things from other parents trying to get IEPs for their kids and based on this interaction, I’m just not confident that this will be easy.

At least I’m getting better at dealing with hard things, right?

Later in the afternoon I picked Jack up from school. One of his classmates came up to ask me if Jack really did have cancer and how he got it. I told her yes, he does, and we don’t know how he got it – sometimes people just get cancer. She seemed like she had more questions, but Jack started pulling on my arm and she walked away.

I hope we didn’t scare her. I wanted to give her a better answer but I didn’t have one. As much as I’d like to deny the reality of what we are living with, sugarcoating it isn’t the right answer.

————–

* Source: Unsung Heroes by the American Childhood Cancer Association, published 2011. (This link opens a PPT file.)

FAQ About Jack’s Leukemia Treatment

Q. How did you guys find out Jack had Leukemia?

A. Starting around Christmas in 2011 when Jack was five and a half years old, he started feeling unwell and had strange symptoms that came and went. One minute he would be running around happy as a clam and the next he would be curled on the couch complaining of aching bones. He also had a low grade fever, fatigue, headaches, unusual emotional outbursts, and I noticed a loss of dexterity when he was playing with Legos. This went on for over a week before we decided it wasn’t a flu, growing pains, or him trying to get out of school. I took him to see a pediatrician, thinking it might be Lyme Disease or Mono. Upon examination he looked fine to the doctor – just a bit pale – and the doc thought he was just anemic. We decided to double check on his iron levels with a blood test. That blood test ended up showing that he had large amounts of unusual white blood cells, which indicated Leukemia, and he started treatment the next day.

Q. What kind of Leukemia does he have?

A. Leukemia is a cancer of the blood. Jack’s immune system just happened to go a little wonky and started producing too many immature white blood cells – called lymphoblasts – that crowded out the normal cells and made it impossible for him to fight off illness. This specific type of cancer is called Pre-B Acute Lymphoblastic Leukemia (or ALL for short). ALL is the most common type of Leukemia among children.

Q. What caused Jack’s Leukemia?

A. We don’t know. In some kids this type of cancer can be genetic but this is not the case with Jack. He was never exposed to unusual doses of radiation or other chemicals. Apparently we all make cancer cells at some point, but most of those cells just get flushed out and never get a chance to become a problem. Jack’s cancer cells ended up sticking around and multiplying instead.

Q. Is he done with chemo? How long does treatment last?

A. Treatment for male children with ALL lasts about 3.5 years and it goes in three phases. Jack is currently in the third phase, called Maintenance, where no cancer cells can be measured in his blood but he must stay on lower doses of chemotherapy in order to make sure he doesn’t relapse. If all goes well, he is expected to be done with treatment in March of 2015.

Q. How often does he go into the hospital for treatment?

A. He goes in every month for an infusion of Vincristine, which is one type of chemotherapy administered through an IV that is hooked up to a Broviac catheter (which stays in his chest throughout treatment). Every three months he also gets a lumbar puncture and a chemotherapy drug called Methrotrexate is put into his spine to eliminate any possible cancer cells that could be hiding in his spinal fluid. He recently started going in monthly for a nebulizer treatment that will help protect him from pneumonia and he has an eye exam every six weeks to ensure that his spinal fluid pressure hasn’t damaged his optic nerve.

Q. Does he receive any treatments at home?

A. Yes, he takes anywhere from 2-5 different types of pills on any given day, including chemotherapy, steroids, antibiotics, and antacids. We also have to maintain his Broviac catheter to make sure it stays infection-free and he doesn’t develop a clot that closes the line – this requires daily flush of an anti-clotting medication called Heparin and weekly changes of the dressing. We also draw blood through the catheter at least once a month, and sometimes several times in a week.

Q. Can he go to school?

A. Yes, if his ANC is above 500 and he feels well enough to attend. We have a 504 Plan and an IEP in place to accommodate his unique educational needs.

Q. What is ANC?

A. ANC is a measurement of the immune system’s ability to fight infection. It’s basically a count of how infection-fighting white blood cells are present in a blood sample. Healthy individuals (who are not immune-suppressed) typically have an ANC over 1,500 but it’s a good day if Jack’s ANC is between 500 and 1,000.

If Jack’s ANC goes below 500, he is considered “neutropenic” and has virtually no ability to fight illness. He has to be taken off chemotherapy and isolated from people who might pass on a bug. If he develops a fever while the ANC is under 500, he has to be hospitalized and given antibiotics because it’s assumed he’s developed an infection.

Q. How are you guys coping?

A. That depends on the day. Cancer has definitely changed how we live our life and we are constantly on the watch for any issues that could arise with Jack. He misses school often due to treatment appointments or side effects. We are chronically stressed and tired and worried. But we are getting through it somehow. We do have a lot of people cheering Jack on and that helps.

Q. Do you struggle financially?

A. Yes, although it’s not due to the cost of treatment (which is thankfully mostly covered by insurance). Finances are more challenging because we have increased expenses when we have to board our dog during a hospitalization or order take-out multiple times a week or get away for a weekend to avoid burnout, and it’s also very difficult to manage finances when your brain is on overload. I never forgot to pay a bill until cancer came into our lives.

Q. How is Jack doing?

A. For the most part he is doing better than we are mentally. He doesn’t know enough to be aware that this could all end badly, although he does know that cancer is serious. He has tolerated the chemotherapy treatment very well for the most part and has avoided a lot of the issues other kids have with the treatment regimen. You generally can’t tell by looking at him that he is fighting cancer – he has a full head of hair and a cheerful, quirky personality.

He has recently hit a rough patch with his health and we are still trying to navigate that and figure out what is causing it. Our oncology team has been adjusting his medications to try to increase his ANC and running a lot of tests. This is somewhat unusual at this stage in treatment, so it has us all worried.

Q. Do the doctors know if he’s going to be cured?

A. They assume (based on research) that he will be cured because over 90% of children with ALL are cured with this treatment regimen. More specifically, he is a standard-risk patient because he has responded as expected to treatment and has no chromosomal abnormalities, so the chances that he will be cured are between 90-95%.

It’s important to note that “cured” means that there are no signs of the cancer returning for five years after treatment ends; this is referred to as Event-Free Survival (EFS). And while it’s unlikely that he will experience relapse, he has a slightly higher risk of developing other cancers.

Q. Will he have lasting effects?

A. Most likely, yes. Some of his major organs (heart, lungs, liver, kidneys) will probably be negatively impacted long-term by the chemotherapy treatments and Jack will need to be screened annually for the rest of his life because he is now more likely to develop other types of cancer. Kids who are treated with chemotherapy in the spine are particularly at risk for learning disabilities related to memory, processing speed, and multitasking – we’ve already seen these effects in Jack. He may also encounter fertility issues later in life.

Q. What can we do to help?

A. Above all, I urge you to donate money and/or time to finding better treatments for childhood cancer. Childhood cancer only receives 4% of federal funding, even though cancer is the most common non-violent cause of death in children in the United States. That means that 96% of funding relies on charitable organizations and individuals. You can make a huge difference in so many lives by donating to childhood cancer research.

If you are more interested in helping our family specifically, you can check out our Cancer Fighting Wishlist or email me directly at crystal (at) ewokmama [dot] com.

***

Thanks for taking the time to read this and to follow our story. If you have any additional questions, feel free to ask – it’s highly likely I’ve forgotten something here!

Just Write: He’s Okay…Mostly, I Think

“How’s Jack doing?”

I’ve been asked this question at least five times so far today. Each time I give the same answer in the same way, “Yeah…well, eh, mostly. He will be okay, I think. He’s just not feeling well after chemo yesterday.”

He was doing just fine last night. In fact, he was very energetic and LOUD, humming or squawking while playing with his Legos. It was overwhelming to me, as I’d just come home from my trip to Type A in Atlanta. I wanted quiet.

This morning, though, it was too quiet. Jack crawled on the floor from his bedroom to the living room. He laid down on the couch while eating breakfast and I covered him with a blanket while pushing play on iTunes so he could listen to The Postal Service at low volume. He ate his waffle slowly, and afterward he leaned on me to get to the bathroom to halfheartedly brush his teeth. Then I picked him up and carried him back out to the couch.

He talked in hushed tones and complained of stomach pain. I smoothed his hair away from his face as I took his temperature – 98.0 degrees. I asked if he wanted to try to go to school for a bit and see if he felt better. His big brown eyes squinted up at me and he said, “I just don’t have any energy, Mom.”

“Okay, honey. I’ll tell David to come home from work. You just rest,” I replied.

I looked at our finances while I waited for David to come home from work. I wondered if we could somehow make it work on one salary so that I could stay home full time with Jack. I worried this was a pattern that would not go away. I added and subtracted and, with a knot in my stomach, acknowledged that it was impossible – we have too much debt and a large mortgage payment.

I called the clinic to get confirmation of Jack’s ANC. The nurse told me it was sitting at 690, which is fairly decent but not great. She asked how he was doing and then said, “Call us if he isn’t feeling better by the end of the week.”

I called the school and answered the question again. Then I drove to work, where I told a few more people that Jack wasn’t feeling well. I got a call from my sister in the afternoon, and I spoke to one of the care providers at Jack’s after-school program – both asked and I explained in that halting way.

Jack’s okay…mostly. I think. We’ll see.

****

This post was inspired by Heather’s Just Write – an exercise in free writing your ordinary and extraordinary moments.