Tag Archives: cancer

Ronald McDonald House – Another Star Lost

“They never knew how much a broken heart can break the sound and change the seasons. Now the leaves are falling faster, I believe in ever after. You gave me hope through your endeavors, now you will live forever.”

Yesterday was great, spending the day with friends. But then it all comes crashing down when I read the message on my phone this morning, and saw the posts. Now my heart spills out in an agony of tears. One bright star, smiling through the impossible cancer she faced. The star has moved on, but her light would not fade.

This is the second playmate that we have lost in the last year. My daughter, young as she is, won’t remember, and it doesn’t impact her life in any way.

But I remember.

I remember being at the Ronald McDonald House during our time in Seattle, talking with the other moms and sharing treatment stories, hardships, the progress we’d made – sharing in the collective burden of having a child with serious medical needs.

I remember coming together for the communal dinners supplied by volunteer groups, joining in the activities that were always provided. We shared about which group’s cooking we liked better, and about the difficulties in getting our kids to eat. I remember that as we got further into our own chemo treatment, my little girl would only eat chicken nuggets and, toward the end, nothing at all.

We rejoiced when one of our group got the okay to go home, whether it was just for a few days’ leave or they were done with treatment and leaving for good. There was one family who’d spent two years at Ronald McDonald, never even going home once for a visit. They finally got clearance to go home permanently, and we all cried. They were the longest running visitors at the Ron Don house.

There was a park nearby, where I sometimes took my little girl. Technically, because of her immune system, she wasn’t supposed to go to public places like that, but sometimes the little bit of joy it brought her was worth it. She loved the swings. Sometimes, a Ron Don family would join us. A few times, it was a dear little girl, six years old, who was Lanae’s friend.

That same little girl passed away last year – went home after treatment, and was back in Seattle in a month.

We’ve lost others, as well. And with the news of each one, I am reminded of the ferocity of the beast called cancer, and I feel a stir of fury and heartbreak, and I can’t help but feel the burden of the world. I look at my daughter, so strong and healthy, and I feel sad that she won’t remember these friends that she so loved to play with.

But I remember. I remember the laughter they shared, the shared struggles we faced. And I’ll keep that memory in my heart, along with so many others.

Izzy, you were a bright spot in a dark world. I’ll never forget it.

 

Into the world of special needs

Special needs. It’s a little world all in its own. Half in the “normal” world, half in the world of doctors, hospitals, and therapists. It’s a world where the smallest actions have ripples – a single step is progress, a low fever is worry.

It’s been a year since my daughter became “special needs.” Before that, we were the average family just trying to make it by. Then everything changed. And I learned that when you’re special needs, things change so drastically.

These are just a few of the things that come to mind for me. Maybe you can add a few of your own?

You become familiar with medical terms, hospitals, and doctor’s offices. You might have your hospital’s number on speed dial, but more likely, you have it memorized. You know the layout of three different hospitals, but one is more familiar (and more loved) than the rest. You know about medications, diagnoses, clinical terms like “hemiparesis.”

You have a love-hate relationships with therapists. New ones especially. And once you find one you like, you don’t want to move, because you know it’s soooo hard to find one who connects so well. The therapist may know her stuff, but if there’s no connection, nothing’s happening, right? And it’s so hard to watch your little ones struggle so hard to do a simple task.

Therapists have a love-hate relationship with you. New ones especially. You’re so used to accommodating for your child, that inevitably spills over into therapy time. After all, you can’t just flip a switch and be done. You spend your time translating, adapting for language or physical difficulties, knowing your child’s needs and wants and capabilities, that anyone else doing the same is difficult to take.

You’re your child’s own therapist. Therapy doesn’t happen as often as you’d like. There’s insurance, and schedules, and all that goes into it. So inevitably, you find yourself working with her at home, or going places just to challenge her facilities. Most parents take their kids to the park to play; you take yours to the park so she can practice walking up those steps.

You’re a barrier between your child, and the rest of the world. You’re right there when she has difficulty walking across the uneven ground while other kids race by. You’re the interpreter when she wants to go up and say hi to a stranger, or give them an energetic hi-five. You’re the wall between her unsteady balance and the adults rushing past who don’t see the child who has trouble walking.

You become far more anal than you ever were. You never used to care about kids climbing, running, playing on their own. Now, you can’t stand to be more than two feet away. What if she falls? She has that speech impediment – what if the other kids can’t understand her?

You’re not sad about starting preschool, because you’re just happy that she gets to be around other kids. Points if they happen to be kids with difficulties like her own.

You take extra time planning events around your child’s needs. Like birthday parties. The park – too open, and she wouldn’t be able to keep up with the other kids or run around with them. Is there an indoor place where they can all have fun together?

Play time becomes therapy time. You know more about how to make average toys into therapy games than most people even know how to play basic kid’s games.

Clothes shopping becomes a different story for you. It’s not just about finding the right size, it’s finding the right fit. You’d almost rather other people not shop, because it’s difficult finding the right one. You specifically note on Christmas wish lists to please not get certain items like shoes or even slippers.

Your wish list changes in other ways, too. No longer does it include basic interest and likes. You have this insane desire to put together a comprehensive, detailed list of the exact activities and toys that would be “great for therapy work.”

Other parents teach their kids to greet someone with a “hi” and small talk conversation. Your coaching on teaching your child to greet someone includes focusing on specific words or movements.

You love talking about it. When you find that rare person who knows what it’s like (such as the one other special needs mom at the park), you can easily spend hours discussing the topic. You have no problem informing others what you have to deal with, or about the progress she’s making. You love talking about her history, about where you’ve been and where you’re headed.

At the same time, part of you longs for normal. You appreciate those few who treat your difficulties as though it’s totally normal, who simply accept it as is, without even a comment. Not that they ignore it, pretend it isn’t there, but that it’s accepted as normal, as part of life.

Your world certainly changes when you enter the “special needs” arena. Everything revolves around the needs of your child, the difficulties she faces. You don’t avoid life, but when possible, you try to plan for something that will allow for her handicaps. And above all, you love and treat your child the same as any other parent.

One Year Exactly – Scanxiety

One year.cpt

One year to the date since little girl got sick.

One year since “everything” began.

Since our life was turned upside down.

Since we were told that our almost-two-year-old had a 50% chance to live, that our baby, our little girl… might not make it.

That she had a massive, massive tumor in her brain. One that needed immediate operation – there could be no delay. Literally – the tumor was discovered on Saturday, and she was prepped for surgery on Tuesday.

Chemo started the very next week.

It’s been a year since all of this. And there are things that make me nervous.

Like knowing how quickly a cancer like this relapses.

Like knowing that if it does relapse, there’s very little road left.

Knowing that she has a genetic diagnosis that makes it almost certain that it will relapse.

And then there’s the illnesses. Random fevers, the most concerning, once or twice a month since at least last September – way more frequent than any healthy person. Doctors say her immune system should have rebounded by now, that it wouldn’t be causing these fevers.

And this nasty bug. This lingering, debilitating illness that hovers, sticks around, refuses to leave. Comforting is the fact that we’ve both had it – hubby for two weeks, myself for two days.

She’s had it for a week. Nothing like cancer to put an otherwise calm, laid-back mother on instant guard.

And the walking… that’s the scary one. Illness, one so nasty as this, can definitely cause trouble walking while one recovers, especially if that person has trouble in the first place. That is true.

All the same… it was the walking that triggered warning that something was wrong, that first time – exactly one year ago.

Just like this time.

She got sick. It was a nasty bug, a lingering, debilitating illness that hovered, stuck around, refused to leave. It left her wobbly, having trouble walking – and that led to the MRI that discovered the tumor.

History repeats itself.

“God’s got this,” You say. And so He does. But Him “having this” does not make it all right for me. He’s always got this – and yet, kids are still called to heaven. And if that’s His plan, so be it, I’ll still trust Him. But it doesn’t make it any easier.

“She’ll be fine – the scans will be clear.” Tell me, by what law in this wide universe can you make that claim? Because it’s not promised. There’s nothing that says she will be fine. She may be – but she may not be. We came through it once just fine – but so have others. It doesn’t mean we won’t have a second time around.

And there lies the rub, as the saying goes. It’s uncertainty that creates worry, that causes one’s heart to pound, the chest to tighten as breathing stops. Visions and memories crash through my head, images of a grapefruit-sized tumor, of my daughter lying unmoving in bed, not even responding to her parent’s playful gestures.

Her MRI is next week, the consult with the doctors the week after. We’ll wait one week before getting results – eerily similar to last year’s events.Surgery

History repeats itself, they say.

I can only pray…

Vaccines: The Other Side of the Coin

This quote showed up in my newsfeed on Facebook. This topic is one I’ve been wanting to comment on for a while, as I’ve been given a different perspective on things after my daughter’s cancer ordeal. The quote –
“Whether you’re pro-vaccine, anti-vaccine, or fall somewhere in the middle, the questions you need to ask yourselves are as follows:
Do you want to live in a world, where you cannot freely refuse a medical procedure that carries risk of injury or death? I’m not questioning your comfort level with today’s vaccine schedule, because today’s vaccine schedule will change. New vaccines and additional doses are added all the time. children today receive as many as 49 doses of 14 vaccines before they reach age six, which is roughly 12 times higher than the number of vaccines administered to children back in 1940. With more than 220 new vaccines in the developmental pipeline for children and adults…and no end in sight..the question you must ask yourself is ARE YOU CERTAIN you will be 100% comfortable with vaccines that are added to the mandated list in the future? If you say that yes, you’re comfortable, then you’re either a) not expecting to be a parent or grandparent, b) don’t have to worry about it because your kids are grown and out of the house, or c) lying to prove a point. No critical thinker, no honest person, would ever sign off on the sight-unseen vaccine schedule of the future. And yet that’s what you’re doing when you condemn the people who are fighting for your right to refuse. YOU have the right to refuse, should you ever choose to use it, because the very “anti-vaccine” people you demonize have been fighting for us all. 
Right now, the burden of “herd immunity” falls on small children, but that is changing. Vaccine manufacturers see an untapped market in adult vaccines and are coming for you next. What will you do if your state, your employer, or your insurance company forces you to get a vaccine that you simply don’t want? It hasn’t happened to you yet, but if the right to refuse is eroded, it will happen to you sooner than you might think. Who then will you turn to? Your legislators who get campaign donations from pharmaceutical companies? The CDC that has former pharma executives sitting on the board? Who will you turn to if you ever want to say no? There will be no one. 
Once we enter the slippery slope of removing and individual’s right to refuse medical procedures that carry a risk of injury or death, once we remove an individual’s right to speak for him/herself and his/her children, we open ourselves up to an insidious new era, where other drugs and other procedures can be mandated. I heard (on NPR, interestingly enough) that there are people who want to test for a gene marker that’s been found in mass shooters in the hopes that they can put the carriers of that gene on medications in early childhood. Sounds great, right? But many of us carry genes that will never be expressed. You could be a carrier of that gene. Or your child could be a carrier. So if we follow the “for the greater good” mentality behind vaccines (or the Nazi’s “for the greater good” mentality behind eugenics (breeding out illness), we are looking at forcing people who may never express a sociopathic gene to take antipsychotics, just in case. Because that’s what forced vaccination does. It asks children who may never come into contact with a particular virus to accept a vaccine just in case. And that’s what eugenics was all about. It sterilizes people who can pass on a genetic disease just in case. Forced vaccination is a human rights violation, and to support it when you know that the government’s own Vaccine Adverse Events Reporting System exists and lists people who have died as a result of vaccines is unethical at best, sociopathic at worst.
The ethical thing to do is to allow people their right to refuse and leave it up to doctors and big pharma (who have marketing budgets larger than the GDP of some countries) to do a better job of convincing parents that vaccines are safe. We can start by reversing the law that grants vaccine manufacturers total immunity from vaccine injury lawsuits. Because as it stands, you can’t sue a vaccine manufacturer if your child is injured or killed by a vaccine, even in cases where they could’ve made a safer vaccine and chose not to or when they failed to recall a contaminated lot# in a timely manner. Think about that. You can’t sue the manufacturer. That immunity from liability does more to shake parents’ confidence in vaccines than anything else out there.
— Magnolia Crawford”
I disagree. A year ago, and I might have agreed. But – I spent a year dealing with Lanae’s cancer and the after effects. A year getting to know other families who are going through similar trials. And they often post their perspective as well, which have given me room for thought – not to change my mind, but simply to adjust my stance.
The kids I’ve gotten to know – they have no immune system. And their parents have stayed with them, through one treatment after another, in a world that has gone chaotically upside down. They find themselves trying to keep up with changing medications and a non-functional immune system. I’ve seen it. Lanae’s gotten sick at least once a month, sometimes more, since we finished treatment. And that’s just a cold – so seeing how easily their kids fall to a basic virus, imagine the parents terror at imagining something more severe, like whooping cough. Anyone who says “it’s not all that bad” (sadly, a common argument with anti-vaxxers) don’t have a child who struggles against a cold. I’ve seen kids end up in the ICU from just the common cold, never mind more serious diseases.
These parents would whole-heartedly agree to an unseen schedule. Without a doubt. And they do. And they are still critical thinkers, and honest, contrary to this person’s statement. But they also see their children in front of them, limping along without an immune system, and it’s heartrending. No critical thinker, no honest person, wants to see that child end up in ICU – to turn around this lady’s quote. But yet, that’s what happens.
And so they agree to vaccines, now and forever. And yes, they get it for themselves. Or if they can’t, they do literally huddle inside their homes, afraid of the germy world outside. And it’s because of a few simple reasons – fear, not the average, every day fear of what could happen, but what (for many) is almost inevitable to happen. They fear for their own children, who can’t get the shots and are susceptible to these viruses that go around. So they trust the word of the doctors that recommend it. And it’s more than a trust that most parents have, of taking their child to an annual checkup or when there’s a basic childhood illness. It’s a day-to-day trust, one they have to rely on, because there’s nothing else. Every day, they get up and put their trust in the hands of the doctors who’ve read the medical textbooks, because this parent doesn’t have the time to sit down and read through all the medical jargon. Their child’s life depends on those doctors, through surgeries, medications, lab draws and blood counts. They have no choice but to trust that the doctors really do know best. And because of this trust, they have to trust that the doctors know what they are doing when they recommend vaccines, no matter how many is added.
Trusting vaccines is not about just “knowing the facts.” It’s knowing them, and then weighing them, evaluating the risks. And when a parent is already expending so much energy just to keep their child alive, they are not going to chance it on something that could so easily come in and take that life.
It’s not just rights to refuse medical procedures. As much as you have the right to refuse a medical procedure for the sake of your child, so these parents also have the right to determine what is best for their own child. Sometimes, that means looking and seeing what can be done as a society. Because in reality, what one side does will inevitably affect the other, either in perception or actuality. And that’s a big responsibility to take on, whichever side you’re on.

Textile Victims

I actually wrote this a few weeks ago, but as we didn’t have Internet at the time, I wasn’t able to post it. So I’m putting this up here now.

Almost done with unpacking, getting settled in after our move earlier this week. This apartment is starting to look more like a home – little girl’s room is beautiful. I love the decorations, the fact that she finally has her own room, a space that is wholly her own.

There is a pile of boxes in the corner of the living room, that I am slowly knocking out one by one. A few boxes in particular stood out to me today. Boxes of little girl clothing, all from before her diagnosis, before the surgeries and treatments. Like everything else in the house, they had been packed without me, while I was in Seattle with little girl.

There were dresses, outfits, pants and shirts. Adorable clothes, many of them fresh, almost brand new. Some she had only worn once or twice.

boots-resize1And shoes. A pair of boots, thick snow boots in anticipation of winter. They were still in mint condition. I think she only wore them twice, if that. They may have been too big for her yet, a year ago. They’d fit her now, I’m sure. Size six, about what she wears now – or would, without her brace.

But instead, they are going in a box, along with all those clothes. They will be passed on to a friend, a little girl who will wear them well. Her mom will go through the clothes, to see if some might fit the younger girl’s frame.

Clothes that were barely worn. Many of them looking like they’d just come from the store – like I brought them home from Walmart yesterday. Nine months in storage did nothing to dim their newness. Clothes that are now three or even four sizes too small.

She’s had several growth spurts this past year, all back to back. She shot up in weight and height, jumping from wearing 18-24 month clothing, to now wearing 3-4T.

There’s something a little sad in these clothes, these garments so untouched. The boots fresh from the store – I almost feel as though I could turn them over and I’d find the tag, announcing $12.99 for a pair of girl’s size six winter boots. There is no wearing on the sole, the pink rubber is just as bright as it ever was, not even shadowed by a step into the dirt.

She’ll never wear them. Her brace, as any special needs parent knows, makes that impossible. For one thing, with the brace only on one leg, she needs two different shoes – one regular, and one two sizes up to fit over the brace. And any parent with experience in AFO’s will tell you that getting a brace into thick, stiff winter boots is a nightmare that isn’t even worth the attempt.

Two boxes, at least – more as I go through the rest of the boxes. Clothes that were lovingly purchased for her, only to have them languish in storage while she battled for her life one hundred fifty miles away. And now that we’re home and we have unpacked the boxes, she’s outgrown the clothing. An entire wardrobe – silent textile victims of a battle that raged on many fronts, and one little girl at the center of it all.

How They See Her

I wonder if she is an inspiration. If they look at her, and feel encouraged. Because of what she does. 

Kneeling-resizedIt’s been eight months since the first surgery to remove the tumor. We’re still in intensive therapy – some weeks she has at least one, often multiple, therapy appointments a day. The local pediatrics therapy clinic isn’t intensive enough for what she needs, so we supplement at Regional, who primarily works with adults. She’s the only child I’ve ever seen at that clinic. When we go, the waiting room usually has two or three other patients, all adults, most of them elderly.

I don’t know what brought them here. Boating accidents, casualties of old age, this or that surgery. Different reasons that cause their body to not work the way it used to, the way it’s designed to. Different physical needs requiring therapy, itself a grueling process. There are rough days, days where muscles are sore and limbs don’t move the way they should. Times of remembering how it used to be, jumping out of bed, ready to go, no pain whatsoever. Maybe they were wild in their younger days, going on all sorts of treks and adventures – or maybe it’s something as simple as being on their feet all day at work and coming home with no pain.

It’s always something, and that something is at one point or another a discouragement. Frustration, perhaps even self-pity, wondering why things have to be the way they are.

Then this little girl comes in. Two, maybe three years old at the most. They don’t know what’s happened, but it’s obvious she’s not like other children. The brace is the obvious sign – the colorful, psychedelic AFO that supports her right leg, which lags noticeably behind the other. They see that Mom is holding her hand, but as soon as Mom lets go, the girl sits down. If she does keep walking, it’s only to get somewhere, going into Mommy’s arms. It’s clear that she doesn’t walk like everyone else.

Sometimes she falls, tripping over absolutely nothing. A hug from Mom, and she’s up and going again. Often, she sits down and “scoots” across the floor, leading with her left side. The right arm dangles, doing little to assist.

High-fives; that’s her call sign. She has to give everyone in the room a high five, punctuated with her wide grins and cheerful, overly loud, “Hi!” Always both hands – high five with the left, sharp and strong. Then the right hand – elbow crooked, leading with the shoulder. People often mistake her gesture for a fist bump, because she can’t uncurl her fingers.

If they ask what’s wrong, I tell them. I tell them she had cancer, had a surgery to remove the massive tumor in her brain. That she went through treatment, another surgery, did what she had to – and that now she is doing great. Done with treatment, scans are clear, and now she’s doing physical therapy to rebuild her right side, after losing complete use of it due to the surgery.

Yes, she was walking before, climbing up on furniture, active as any almost-two-year-old. She was starting to talk, too. She was running around, doing things that toddlers do. And now – now, she still does that. Just, differently.

Here we are in this room full of injured, hurting people, each with their own ailments. Frustration, discouragement at their own inadequacies, failure to meet their own standards of progress.

And then this little girl comes in. She can’t move like everyone else, but it doesn’t slow her down any. She zooms across the room, bouncy and active as ever, greeting everyone with a cheerful smile that lights up the room. Her laugh is infectious, and it’s hard to take her high-five with a frown.

I wonder if she’s an inspiration to them, an encouragement. If they look at her and see a girl who has a physical handicap, but who isn’t slowed down at all. Who can fall and clearly gets frustrated, but still greets life – and others – with such happiness and cheer.

I can’t help but wonder if that is how they see her…

Rehab Improvements and an MRI

Physical therapy at Children's
Physical therapy at Children’s

We came home from being in rehab at Seattle Children’s two weeks ago. I love the rehab unit there, and love seeing the daily progress and improvements. So much change in so little time! Now, we are working on getting set up with home therapies. Little girl’s schedule is filling up fast! Her therapists from Children’s recommended us getting at-home therapy care for her, up to three times a week for some of the therapies! We are going for the max that insurance allows us.

Therapy time with Katie!
Therapy time with Katie!

Right now, we are getting therapy at Children’s Village, which I love. But it’s not intensive enough. PT is all right, coming in at twice a week, but OT is once a week and Speech is only twice a month! That’s a lot less than what the therapists recommended. To fill in the gaps, they got us set up at Regional, which does rehab therapy. It’s a bit of a different setting, since they usually work with adults, but they sometimes take kids, too. But we’re still waiting on insurance approval, so I’m not even sure if we’ll be able to get much before the move. I’m just looking forward to moving, since the new area will have a lot better availability for what she needs.

Kneeling down to color
Kneeling down to color

She made a huge improvement while in Seattle. She can now do kneeling, whereas before, her right leg would stretch stiffly behind her. She’s more balanced now, and can get into certain positions easier. She’s even been trying to crawl! We’re still working on that one; the right wrist has very little strength, so it tends to flip over so that she is putting her weight on the back of her hand. However, as long as she is on her elbows (one of the exercises the therapists were working on with her), she is able to maintain a good, steady balance.

Her speech is improving, slightly. She is still mostly non-verbal – she makes sounds, but not words – but she is at least attempting to speak. She has picked up a few new words, some of which are adorably amusing to listen to. She is also getting better at discovering pictures in books and remembering familiar ones. She still scores low in understanding and development for her age, but she definitely has the smarts! She may be behind, but I don’t think it will hold her back any. 😉

Walking is still iffy. Some days are good, other days it seems that the leg gets sore – which, of course, is to be expected. The initial injury seems to have cleared up, so she’s walking on it now like she used to, just not as much, but she’s getting better. We’ve even gotten her to do some walking on her own!

Her MRI is this week. We head over to Seattle on Tuesday, and we’ll be there all week. Appointments Tuesday and Wednesday (around 10 appointments!), and then Thanksgiving with the family on Thursday. After this year, there’s definitely a lot to be thankful for!

Standing-resizedThe MRI always gives me a little bit of pause. Her genetic diagnosis always sits in the back of my mind, and I can’t help but wonder. We’ve made it this far, but how much further? Will we be facing another tumor, more treatments? What next? This will likely be the last MRI at Children’s. Next month, we’ll be moving to Oregon, and they are already working on getting us set up at the hospitals there. She’ll get her regular scans in Oregon, and later on if something shows up and she needs treatment – we’ll cross that bridge when we get there. But, it will be nice having her hospital so close by – less than half an hour from where we’ll be living. In the meantime, we’ll just keep pressing on!

Genetics, Rehab, and more

It’s been a busy few weeks, and there’s a lot to update!

First, Rehab. She came home a little over a week ago with a nasty cold. It turned out to really be a nasty one, that took her almost a week to get over. By contrast, her Daddy and I were over it within two days.

The original plan was that she would go see her pediatrician, who would order a nasal swab. If the test came back clear, we were good to return to Seattle and finish rehab. But when I called the doctor’s office, they said they didn’t even do nasal swabs – we would have to go into the local hospital. Aside from that, it would take a full two weeks to get results. Definitely not ideal.

So I called Children’s Hospital figure out what to do. It was finally determined that we would return this coming Wednesday – so on Wednesday morning, we’ll be heading back over to finish what we started.

And what is that, exactly? I know I mentioned it before, but here’s a better breakdown:

Occupational therapy – she has been getting better at using her right arm, but it still needs work, especially to build up strength. She has the gross motor skills, but the finer movements of the fingers are more difficult. She does not yet have the ability to consciously flex her fingers, such as to let go or pick up an object.

Physical therapy – Her leg has also been gaining strength. Yesterday, we were playing a game that involved walking back and forth between her Grandpa and I. In the course of the game, she was able to consistently (though of course in small measure) take steps all on her own! I am so proud of her. She is very motivated to walk, loves going places. The brace makes a HUGE difference in her walking. Without it, since her ankle has no strength, her foot slips to the side – she is literally walking with it bent almost completely underneath, so she is walking on the top or side of her foot. The brace helps straighten it and gives it stability. So what if she’s wearing mismatched shoes?

Speech therapy – At first, I was disinclined to receive it. They did recommend it, because she doesn’t ay a lot of words. But she does know them. And at her speech eval, the therapist was asking questions I knew that Lanae knew the answer to (”Where is your belly?”), but Lanae just wasn’t paying any attention at all. She didn’t care one whit what the therapist was trying to do with her. And because she does talk at home, and uses certain words only sometimes (she can say “Mama” but does it only when she wants to, and otherwise calls everyone, including me, “Daddy”), I guessed that it was more personality. At home, she displayed a very high level of understanding, and always communicated well (though not necessarily in words). She also picked up sign language very easily. So on that, I declined the speech therapy.

When they entered us into rehab, they said that we had to do speech in order to get the full therapy program, or insurance wouldn’t cover it. I didn’t see a problem with it, so I agreed. Our therapist was Beth, who I’ve always enjoyed. She works well with Lanae and is great at getting her engaged.

After a few sessions with Beth, she made an observation that she was able to pick up based on her training, but which I had missed. Lanae had speech apraxia. This is a motor speech disorder, in which the brain has difficult planning how to move the muscles to make certain sounds. Lanae knew the words, but couldn’t get her mouth moving right to say them. After Beth pointed it out and explained what it meant, I began to see the same signs. Since then, we have been putting a greater emphasis on specific words and sounds, and seeing great results. She is using her words more and making more of an effort to make certain sounds.

When we go in Wednesday, we will be there at least a week. After that, they will evaluate her and determine her need for a longer stay. I’m hoping for at least two weeks, which was part of the original plan anyway, before she got sick. So here’s hoping! How cool would it be if she were to go in, stay for a week or two, and come out WALKING on her own?? Amazing!

A Move and a Job

There have been some other major things going on, too. Daniel has been working hard at school to keep his grades up. He’s set to finish in December – graduation is December 17, if you’re looking to come! After that, we have just enough time to enjoy the holidays, and then we are moving to OREGON!! That’s right – near Portland. We will be in Hillsboro. My hardworking husband got a job with Intel! We are beyond excited for this new change, and can’t wait to get started. We took a survey trip over the weekend, checking out the area and looking at apartments. After looking at a few on our list, we found one that we both really liked, so hopefully things will work out for that one.

Most of those who have heard of the move have asked about Lanae’s medical care. There are at least two hospitals in the area, one of them a children’s hospital. We aren’t sure yet which one will be going to, but we have spoken with her oncologist in Seattle about the move. She will be able to continue her regular scans there in Oregon; later on, if something shows up – well, it’s a matter of crossing that bridge when we get there. Out of state treatment can be tricky, so we will see what happens.

Genetics Test

Which brings me to my next and final point – will the cancer return? Of course, there is no way to know for certain. However, in a previous post I mentioned about the genetic testing they were doing; the type of cancer she had has a strong genetic link. We put in for the test a few months ago. Last week, we got the results back.

It was Thursday, and we were right in the middle of the dinner/prepare for church rush when I received a phone call. My father in law took over for me so I could step out to take the call. The test results had come back – they were positive. She had the Li-Fraumeni syndrome. This is a genetic mutation that, long story short, makes you susceptible to cancer. It greatly increases the likelihood of the cancer returning, or her getting a secondary cancer. The chemo she received during the first treatment may have itself caused a cancer, since her body would have no way to fight it off.

At present, this doesn’t mean much for us as far as a plan of action goes. We will continue doing regular scans to monitor for tumor growth. Daniel and I will both need to be tested to see who carries the gene – or it could be just a random mutation that started with her. We also have an appointment in two weeks with the geneticist to work out more solid details, so we will know more then.

At first, the news sunk like a stone in my stomach. But after the initial numbness wore away – I can’t say that it really affected me that much. It doesn’t change much, like I said. And it’s not reall something I can worry about. If the cancer returns, we will deal with it then – but worrying about it won’t make one bit of difference. And at the moment, I have greater things to focus on instead. But, I will be doing even more research on cancer, treatments, options, etc.

And in the end, she is in God’s hands anyway. Only He can say what will happen, and there is comfort in knowing that He has it ordained, and that nothing surprises Him. It’s all up to Him.

Pink versus Gold

BREAST+CANCER+AWARENESS+16X9This month, October, is breast cancer awareness month. We’re not even halfway through the month, and already I’m seeing pink everywhere. There are displays in the stores, commercials running on TV, and I’ve already heard of at least a few events to support it. Some of it started even before the first; halfway through September, I read a news article about a woman who turned the Puget Sound pink. It wasn’t even October yet!

And there’s the struggle. See, September is actually childhood cancer awareness month. And for those of usblogger-image--1565964606 who have faced childhood cancer, it can be a painful time of year. Everyone goes pink in October. It’s everywhere. But in September, who goes gold? How many people even know what that means? You see a pink display in the store, and it doesn’t even have to say “breast cancer” on it, everyone knows what it’s for. But if you put up something gold, it’s just another display. Maybe it’s for a football team.

Now, breast cancer is a horrible thing. Any cancer is, adult or child. If you live, it’s a long and draining recovery. If you don’t survive, it’s a long spiral downward, full of pain and discomfort. It’s a long battle either way, no matter what your age.

I don’t have a problem with those who want to support breast cancer patients. There are so many “causes” out there, take your pick which one you want to support. And some have reason to support them. Actual breast cancer survivors, or those who have been touched by the disease in some way – maybe their mother had it, or they lost a sister or close friend. These are all good reasons to drive awareness and funding.

There’s nothing wrong with that. I do have a problem, however, when it becomes painfully stilted. When our society is so focused on one, but completely ignores the other, as if it didn’t even exist.

Last month was childhood cancer awareness month. I saw a few events. My husband and I ran (read: walked, lol) a 3K in Seattle to support pediatric brain tumors. This is a cause that is near and dear to our hearts, after our own two-year-old daughter was found to have a massive tumor in her brain earlier this year. There were a few other events, posters shared on Facebook, some recognition.

But very little. Even then, most of what appeared in my newsfeed came from friends who themselves have a direct connection with childhood cancer. But now that October is here, pink is everywhere.

Now, as I said, I don’t have a problem with advocates for breast cancer patients. I also don’t get upset because no one shared my “childhood cancer awareness” poster. Everyone has their chosen cause, and you can’t go after them all. I get that.

But what gets me is that society is bent on putting all the focus in one area. Everyone goes pink – but no one goes gold. Stores, corporations, and newspapers refuse requests to “go gold,” but the minute the clock turns to October 1st, everything is suddenly awash in pink. There are a few exceptions, of course – Times Square nobly lit up in an array of gold last month. But then you have cases where places like the Empire State Building will light up their display for trivial things like going green for the release of Teenage Mutant Ninja Turtles in theaters, but completely ignoring any requests to go gold, and even deleting such comments from their Facebook page.

Then there’s the statistics.

  • – 46 kids are diagnosed with cancer every day
  • – Cancer is the highest cause of disease-related death in the US, more deadly than asthma, pediatric AIDS, cystic fibrosis, and diabetes combined
  • – 1 out of every 8 patients succumb to childhood cancer
  • – 60% of survivors face infertility, heart failure, secondary cancers, or other complications later on

 

Those are some pretty staggering numbers, but that’s not the end of them. Our society is woefully ignorant of childhood cancers. Here are just a few more numbers to indicate how much –

 

  • – Approximately 900 cancer drugs are in development for adults. There are none for children.
  • – In twenty years, only two new chemo drugs have been approved for children by the FDA.
  • – 96% of federal funding for research is for adult cancers
  • – There are sixteen major groups, and over 100 subgroups, of childhood cancers – all of whom must split the 4% of federal funding granted by the federal government
  • – Pharmaceutical companies fund 60% of cancer research, but almost none of it goes to childhood cancer

See where I’m going with this? Childhood cancer is far from rare, as I learned when my own daughter received her diagnosis. Yet, it gets almost NO attention. People will choose their own cause, and there’s nothing wrong with that. But it does hurt to see so much pink in October, but a stark absence of gold in September.Superhero

Kids get cancer, too! But society doesn’t want to pay attention.

The Easy Way Out

The Internet has been abuzz the last few days with the story of a woman diagnosed with brain cancer, a story that has gone viral. This woman was diagnosed with a kind of cancer that is unquestionably fatal, with not even a hope of treatment. Her life expectancy dropped from years to literally months. Death was promised to be slow and painful – not anyone’s idea of a happy ending. So in an effort to take control in a life that has spun out of control, the woman has decided to take fate into her own hands. She, not the cancer, will decide her own day to die. On November 1, she will swallow a pill prescribed by her doctor, and she will slip out of this world on her own terms.

It sounds like an amazing story of courage. And I won’t deny that. It’s a courageous thing to take fate into your own hands. Some call her selfish or abhor her decision, but I think she deserves a little more credit. It’s not an easy decision, certainly, and given the option between deciding your own fate versus a slow and undignified death, what is to say you wouldn’t take the same chance?

But I’ll admit that it hasn’t sat well with me since I heard the story. I don’t judge her at all. It’s her choice to make.

But still, it doesn’t sit well with me. And it’s all because of my daughter. Early in March, Lanae was diagnosed with choroid plexus carcinoma. It’s a rare and aggressive cancer – brain cancer, coincidentally. Survival options weren’t that great. But still, we fought. We settled into the next several rounds of chemo and surgeries to combat the cancer. And we pulled through. My little girl is a trooper.

But there was hope, some say. She didn’t have the certainty of death that this woman has. And it’s true. But then I think of Maddie, who has the same cancer that Lanae has, and who has relapsed several times. Each relapse brings with it a near-certain chance of death. But they’re still fighting.

And then there’s the countless others. Some have better chances than others. Some have fought, only to find their fate. Some have had a harder road than others, a slow spiral downward while their family looked on helplessly, doing what they could to comfort one who could not be comforted. Parents are forced to stand by and watch while their child wastes away, shrinking a little more each day until death’s pallor overtakes them.

As I think of this woman who has decided to take charge of her own fate, I can’t help but remember these stories. The “dignified death” is denied to these kids. Of course, any adult would be aghast at the thought of taking a child’s life. Any doctor who prescribed such a pill would have his license revoked; the parents who gave it would be tried and shut in prison.

It’s unthinkable to provide this same kind of out to a child, some who aren’t even old enough to articulate their thoughts on the matter. They have no choice but to continue the fight, up until the end. The parents do their best to make the child comfortable. By the end, most of the time the child is on high doses of medications to control the pain, so that at least they can pass somewhat comfortably. Even then, it’s a rough few days where nothing is quite comfortable, where sleep is lacking, where the child is often delirious, incoherent, or otherwise out of it.

What does it say about these kids, I ask, when an adult takes the easy way out, I wonder? Adults can’t stand to face the indignity and pain of such a lingering death, but kids have no other option. Even if we were to consider giving them such a choice, it would be unthinkable for most parents. For many, those last few days are the most painful, but also the most precious.

You can’t compare stories, that I’ve learned. Each person’s pain is their own, and you can’t compare it. I don’t judge this woman for her decision. Her life, her right, so I believe. And I don’t fault her for it.

But at the same time… as a mother who’s faced this battle before, and who has witnessed other parents face similar battles – and some have lost – I can’t help but think that such a decision somehow seems to demean the battles these kids face. They are facing similar battles, with similar outcomes – but she gets the easy way out, and these kids must continue the fight, despite being weary and worn? For her, there is dignity in choosing her own way out… but for those of us left in the fight, who have no option to quit – what then? I can’t help but feel almost as though it’s a slap in the face.

I don’t think she’s being selfish. She has a right to choose her own way. And she can’t base that choice off of others – it’s a personal decision, and really, her choosing to live just to die that slow death wouldn’t really help or comfort the families of these other kids. It wouldn’t make a difference one way or the other. This is not judging her – but simply articulating my own thoughts on the matter. No matter what she chooses, the parents will face their own level of pain, and she can’t help that. This is an emotional reaction, nothing more – not something to change her mind or to argue her choice. Just the thoughts of one tired Mommy, who feels the pain of the battle.