Tag Archives: childhood 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…

Lanae

*I did not write this poem*

This amazing piece was sent to me by a missionary friend of mine, David Johnson, who has followed my daughter’s story from day one. He continually reminded me that they were praying for us, even from distant China. Then this morning, he sends me this poem that he was inspired to write, about my own little girl. I was blown away by the sweet words he shared, and I wanted to share it with others (with his permission, of course).

Superhero
7 months after the first surgery

 Lanae

Though cancer through your tiny body raged,

Your smiling face filled pictures that were shared,

The war to comfort you your parents waged,

Your face showing no sign that you were scared.

 

The gift you gave to those who prayed for you,Surgery

Was something only later you would know,

Your smile, your laugh, your hope came shining through,

Despair or doubt your face it did not show.

 

Oh blue-eyed babe, as heaven’s perfect gift,

tumor

Your scars and body one day all will heal,

We pray that day will fly on wings so swift,

But slow will fade the way you made us feel.

 

For without knowing you have truly been,

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

A harbinger of hope and faith and light,

Through you the love of God we all have seen,

And by a child have we seen our Lord’s might.

 

When you are grown and looking backwards see,

The road you traveled ‘ere you learned to run,

May God our Lord ever at your side be,

Reminding you the vict’ry you have won.

 

 

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.

Starting in Rehab

Today we checked in in at Seattle Children’s Hospital. I waited in line to receive my Caregiver badge, the identification that would allow me free access to almost any part of the hospital at any given time. The bright orange lanyard would be my key to staying past visiting hours, so I could be with my little girl.

It’s not our first stay here in this place. I remember countless times of being checked in at the hospital, to the point where I stopped returning the Caregiver badge and just hung on to it for the next inevitable round.

This time, though, being here was a good thing. In fact, we had specifically requested it. And I’m looking forward to what the week holds.

Since the first surgery in March, it’s been a long, uphill battle to regain strength. She might have recovered quicker, but for the rounds of chemo that battered her little body, leaving her not up to doing much of anything. She’d made definite progress, but there’s still a long way to go.

Remembering her initial stay in the rehab unit following the surgery, we requested the doctors look into a second stay. She’s been getting therapy at home, but it’s nowhere near as intensive as what she could get here.

At home, we go through Children’s Village, which truly is a wonderful place. We love it there. But it’s not set up for intensive therapy. We were getting once-a-week sessions with the therapists, coming out to just 45 minutes a week for physical therapy. The occupational therapy, we had finally managed to get in for one hour a week. Our first session was last week.

The sessions were great, but I knew she needed something more intensive. So on our last visit with the team, I put it to them to look into a second stay. Less than a week later – quick, by common standards, since it had to be cleared through insurance – we got the go-ahead.

So now here we are. It’s late, and we are settled in bed in our room. She’s tired, but trying her hardest to stay up as long as she can. Mommy indulged and allowed her a second cup of bedtime milk. At the moment, it’s enough to keep her quiet; maybe it will help her relax and fall asleep.

There’s not much else going on. There’s no beeping, no nurses coming in and out for meds and vitals. We’re essentially on our own. Earlier, we went for a walk, and it didn’t matter what time we returned. We went over to the Ronald McDonald House to visit a friend, and stayed for quite a while. When we left, we simply informed the nurse – and that was it.

It’s such a difference. She is happy and energetic, eager to participate. We don’t have to worry about tangling tubes or keeping track of medications. Even her diapers simply get tossed in the trash can, instead of in the bin provided in the bathroom for the nurses to weigh so they can check her output.

No fevers. No throwing up. No sick little girl cuddled in my lap because the chemo upset her tummy and gave her a fever.

She’s eating. Picking and choosing what she likes, wanting her favorite foods. Bananas and cheese are the first to go, and she’ll eat as much of those as we allow.

Sleep is, well – what toddler wants to sleep, anyway?

First day of therapy went well. She was cranky, but that was mostly because she refused to get a good nap in, so she was tired for most of it. Even so, it was still worthwhile. The exciting part was riding the bike in the hallway. The therapist wanted to get her legs moving, so she brought out a special tricycle. The bike had seat straps, so she was secured into the seat. And then we added soft velcro strips to strap her feet to the pedals. With that, we were off!

It took her a few rounds to get the hang of it, but by the time we were done, she was doing most of the work herself. It was exciting to watch her go!

We’ll continue working with her. She’ll have three therapies a day: occupational, physical, and speech. The hour-long sessions are usually broken up into half-hour segments and spread throughout the day. Total, she’ll get a full three hours of therapy every day.

Later this week, she’ll have an evaluation, where they will check her progress. Her level of progress will determine whether we stay another week or two. If she seems to continue to be making significant progress, then they will keep her on. In the end, they don’t expect we will be here more than three weeks, if that long.

How amazing it would be for her to come in here for therapy, and end up WALKING out! I know this Mommy would be excited to have that happen.

Lanae’s Genetics Test – TP53, Li-Fraumeni Syndrome, and what it means for cancer

Lanae was diagnosed with choroid plexus carcinoma when she was 21 months old. She underwent immediate surgery and several rounds of chemo.

Choroid plexus carcinoma is a rare childhood cancer, affecting 2-4% of child cancer patients. Because of its rarity, it has been linked to a genetic mutation – the mutation of the TP53 gene, a protein whose job it is to suppress cancer cells. When this gene is not working properly, there is an increased risk of cancers. This is called Li-Fraumeni syndrome.

I knew nothing of this before her diagnosis. After her biopsy results came back positive for cancer, they started discussing treatments and plans – and the possible genetic link.

A blood test was needed to determine if she had Li-Fraumeni syndrome. It would be a long, involved, and expensive process. For the next several months, I juggled treatments, blood counts, and physical therapy. In between, I worked to keep updated on the genetics testing. The doctors assured me that the test had been sent off for, and that it would take up to three months for results to come back.

I settled in to wait.

May saw her third round of chemo treatments, followed by a visit home. We were home for nearly a week, our longest visit yet. We returned in time for her MRI at the end of the month, to check on the brain’s healing from her last surgery, as well as tumor growth.

We also received a call to set up an appointment with the genetics clinic at Seattle Children’s. The appointment was a consult to evaluate the need for a genetics test.

Wait a minute – evaluate? Wasn’t the test sent off already?

We were misinformed. The test hadn’t been sent off yet – it wasn’t even started. In fact, before it could even happen, it had to be cleared with insurance. And before that could happen, we had to meet with a geneticist, who would evaluate to see if it was medically necessary.

The meeting was set for early in June. We met with Dr. Johnson, who questioned us based on Lanae’s medical history, our family medical history, and other pertinent information. After collecting the information she needed, she closed the folder and said that she would get back to us about the test. It was likely, she said, that Lanae would qualify, based on the information we’d given her.

The first step would be to clear it with insurance. It could take a few weeks, she said – up to a month, even. But it would be done, we were assured.

Resting in this assurance, we thought little about it in the next few weeks. Another round of chemo brought new challenges to the plate, making it her worst yet. After almost two weeks, her counts finally started to recover, and with them, her health and temperament. The MRI had showed remained pieces of the original tumor, so a second surgery was scheduled for after her counts had recovered.

The tumor was small, so the surgery was much quicker this time around, as was the recovery. Within a couple of weeks, we were headed home.

A week or two after getting home, we received a letter from our insurance. The test had been denied. Reason: she did not meet the criteria. In order for the insurance to approve the test, she needed to have at least two tumors, or a family history that indicated a need; she had neither. I could not believe it – they wanted my girl to have TWO very aggressive tumors growing in her little brain before they would consent to a test?

I called the genetics clinic to find answers, and to see what would happen next. So ensued almost three months of trying to talk to someone who would know.

I quickly discovered that the genetics clinic operates on a slow timeline. Finding that no one picked up the phone when I called, and no one returned my messages, I called Hem/Onc instead, the oncology clinic where Lanae was seen for her outpatient appointments.

My frustration became their frustration as their own calls went unanswered. Multiple emails were sent off, to no avail. In the process, I was able to learn that Dr. Johnson had (for whatever reason) left Children’s Hospital and would not be coming back. It appeared that we were lost in the shuffle as they tried to find new doctors to take over her cases.

Finally, one of the doctors in Hem/Onc returned my phone call. Corrie, one of our favorite members on the team, informed me that Genetics ran on their own timeline. Genetics were rarely an immediate medical emergency, so there was little priority on the matter. It could be up to a year before there was any response, and no amount of badgering from Hem/Onc would change that. The two clinics ran on two different timelines. She was apologetic, but powerless. She did say that if this continued, then I was to call the relations department at Children’s and have them take up the case and get things moving.

There was no way I was waiting a year for this test. This would be the test that would determine how likely we were to face this monster once again. It was to show me the odds in the battle we were facing. Not a medical emergency? It was certainly urgent for me, her parent.

We had been discussing the possibility of going over to Seattle for a week to visit a friend, a fellow patient we’d met during our stay. I was getting nowhere with calling genetics, so I decided it was time to show up in person. I made plans to head over to Seattle, with the full intention of showing up at the clinic, sleeping bag in hand, and camping out until I had answers.

A Mommy’s gotta do what a Mommy’s gotta do!

We left Friday night and met our friends at the Ronald McDonald House, where we would be staying with them for the week. Daniel had to leave the next day so he could be back for school on Monday, leaving myself and little girl in Seattle.

Monday rolled around, and our friend Levi had to leave for his appointments. I had considered joining them, and exploring a bit around Seattle while Levi and his Mommy had the appointment. But Lanae said she didn’t want to go anywhere, just wanted to lay down on the couch. To be fair, it was nap time, and she has no problem lying down when she’s tired.

Levi and his Mama left, and little girl and I settled into our positions on the couch. It didn’t take her long before she fell asleep. After about an hour or two, she woke up, and I decided it was time to hit the road. I loaded her in the stroller and we set off.

I had a few other stops to make in addition to the clinic one. By the time we had finished up with those, I was tired and ready to head back. We still had the rest of the week – I would go to genetics later.

That same afternoon, Lanae developed a nasty fever. There were no other signs or symptoms – no coughing, vomiting, etc. Just the fever, and sub-symptoms related to it (i.e., lack of energy, a headache). But, because our friend was a patient and had just had a bone marrow transplant, meaning that his immune system was suppressed, we decided to leave. I made arrangements to stay with family for a few days while Lanae got over whatever bug she’d suddenly come down with. In the end, it was Thursday by the time we returned. You can never be too careful in things like this, so we really wanted to make sure she wouldn’t be carrying a bug.

By the time we got up to the hospital on Thursday, it was later in the afternoon. I went straight to the clinic to try and get in, but by this point, they were closed and no one was in. It was a very discouraging moment. I was wondering if I would need to be staying on for another week, just so I could get things done. This was a low point for me. It seemed that every time I tried to get an answer on this, I ran into yet another dead end. It was six months since Lanae was first diagnosed. We are done with chemo for now, but who’s to say the cancer won’t come back? I needed to know if I needed to prepare myself for that possibility.

We went back to the house and spent the evening hanging out with our friend, who we hadn’t seen all week. The next morning, I went straight to the clinic, fully intending to stay there until someone came out and spoke to me. The last time I’d dropped in on the clinic, a month or two ago, they had simply taken my number and said they would call me back. This time, I was determined not to leave until I’d spoken with someone face to face.

I received the usual stuttering, uncertain response when the desk clerk learned that I did not have an appointment. I braced myself for the run-around as the man said that he would check and see if the team was even in. I knew full well that someone should be there – I had been told just yesterday to come back at this specific time, and they would be open. So here I was – and there they better be.

Finally after several minutes, he returned to say that a nurse would be out to speak with me shortly, and that I was to sit on that bench over there and wait.

I didn’t have to wait for too long. The nurse came out to hear my questions, and I explained to her the problems we’d been having. Nodding, she then disappeared to go look up the status of our case. After a few moments, she returned.

“Your case has been taken up by the other genetics doctor, and she did verify that the test is indeed medically necessary. We did appeal the insurance decision, but they denied it a second time. In that case, the hospital will cover the costs of the test, because the doctor still feels that is necessary.”

She went on to say that though the doctor was not in at the moment, she would be back later in the day, and would be able to sign the order then. The order should be sent off either that day or the following day.

This is a great jump from where we were! I couldn’t be happier. So now we just settle in and wait for the results to come back in, which should be about five weeks. If the test is negative, we’ll get a letter in the mail. If positive, it will be a phone call. Personally, I’m rather hoping for the former. Anyone with me? 😉