Month: November 2015

Another week

 

Well, we made it through another week.

Ironically we ended this week by completing Logan’s 11th radiation treatment. Another 11- our number.

She seems to be feeling better and we had a few people say she looked brighter. Less lime green and more glow in the dark I guess.

 Hoping it is the extra “boost” of reiki that she is getting and not the extra boost of radiaton.

Doctors have started to ween a few of her meds. Thank god. Taking  Dex is never good and Loggie has been on a high dose too long. She is quite puffy and it has given her a round face,  She is SO CRABBY, nervous,  and agitated. She cries all the time for no reason, and she is starving all day long, which means she is gaining weight like crazy (o.k. maybe that isn’t so bad).

So it is time. We will try to lower dose and hope the drugs will still work and the side effects will be less.

Her blood pressure is much better with the higher dose of medication. Today she was close to normal, probably one of the reasons she is feeling so much better, Try functioning with a BP of 50/30.

It has been a long haul and we are aren’t even half way through this treatment yet.

I don’t even think we truly realize how “stressed” we are.  A friend gave me a bit of shoulder rub the other day and I almost collapsed from the pain coming from the knots in my shoulder blades- apparently I found where I am storing my extra anxiety.

 Having said that I have developed some coping skills. Basically I just clean everything.  So far I have thrown out 3/4 of my closet,  donated 9 boxes of useless junk, and I today I started cleaning the grout around our window sills with vim and a toothbrush.

We all deal with things in our own way I guess. Jared builds things- this week he has started an outdoor kitchen project, in the freezing cold and snow. Optimistic guy.

And Brody, well he has thrown about 57 temper tantrums in the last 24 hours. We have no idea why he is so upset but in all fairness I am pretty sure he doesn’t know either.  So he just throws himself on the ground and screams.

We are all coping, and luckily we are allowing each other to do so however they need to- renovations, tantrums and wine, we will get through this.


I put over 900 km’s on my car this week. So much driving to and from treatment. I sure would be nice if we lived closer, or just a bit farther away so we could qualify to stay at the Ronald McDonald house when we have to be downtown so often. The Mega boost is done and next week we will so that means we will only have 20 treatments left to complete- I’ll have to remember to book an oil change.At our meeting yesterday we decided that the Italy chemo (as we call it) will begin  on June 12th.  Five weeks after radiation is done and after we have had a nice holiday in Maui. Hopefully she will be rested and ready to begin the final leg of this race to the cure.

Her  blood counts are really good (surprisingly) and that meant we didn’t have to stay in clinic today to get a transfusion blood. Loggie was mildly disappointed. She is becoming a vampire and looks forward to her infusions.  She hoped for a little recreational top up for the weekend but instead she was told to go home and rest- I like that plan. We could use a little down time

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Little signs

 

Today marked radiation treatment number 8 out of 31 treatments. She is back to feeling awful and it is daunting to not even be half way through. What a roller coaster. Radiation seems to be a far tougher treatment  for her than any of the chemotherapy she has had. She is always so tired and nauseated and staying ahead of the cycle of symptoms seems impossible.

Tomorrow is a big day of appointments. Radiation first thing in the morning, then a meeting with the radiation oncologist, and a session with her ‘feelings doctor’. After that we over to Children’s for another appointment with our own oncologist. We will have some blood work to make sure her hemoglobin hasn’t dropped any more and she can continue with radiation. If there is any change  she may need some blood which means we will spend about 6 hours getting the infusion.

I am secretly hoping she needs blood. Because getting blood is like magic. She is like a hungry vampire and as soon as it starts flowing through her veins her she perks up.

Friday will be a double dose of radiation before the weekend. I am anticipating a tired girl.

Thank you for all the kind messages and good vibes you are sending us. Despite the setbacks, we are feeling positive and reconnected. We are getting so many signs that things are going to be OK.
I am not sure if all believe in ‘sign’ or if maybe you just think we are grasping at straws (and maybe we are) but we like to think that these little coincidences mean that things are going to be OK.
One of our ‘signs’ is that we always seem to look at the clock at 11:11.
Jared and I have always said 11 was ‘our’ number. Ever since we met we’ve had some connection to this number, so much so that chose to get married on November 11th (11:11). 

It was my Auntie Darlene who told us that this number was special and to watch for it. Whenever we saw it, it meant someone was watching out for you and you were free to make a wish. We see it all the time.

This Aunt of mine, who I admired so deeply passed away from cancer just 8 weeks after Logan was diagnosed. She had battled breast cancer for a number of years, and just a few weeks before Logan was diagnosed we found out that it had spread to her brain. When we got the news about Logan, my aunt was devastated. She told me that Logan wouldn’t die because she was going to watch over her from heaven and she was going help her beat it. My Aunt was bossy and always got things done so I had no doubt she would help us from the other side. Now we see that number where- and every time we do I sort of feel like it is Auntie Darlene letting us know that she is working angles for us and that we are on the right track.

 

Also another sign we notice is Lady bugs. Ever since Logan’s friend Makoda passed away her parents have seen lady bugs every where and this makes them think of their beautiful daughter. Logan wanted to buy Makoda’s mom and dad a ladybug toy to give to them for Makoda’s birthday. We finally delivered it to them on Easter Sunday  Later that night when she was in the bath tub, out of no where a lady bug landed on her.

Weird coincidence? or is there truly something bigger than we know going on?

I like to think the latter- that we are being taken care of and things are out of our hands, but everything is going to be alright.


These little signs give us hope. Maybe they are more than just  mere synchronicities, and it isn’t just a casual occurrence that notice these coincidences.  maybe they are leading us on the path we are supposed to take- maybe we never really lose someone.

Now I am getting all deep but, so I should go to bed, I do have to wonder…but either way,  no matter what they are, these little ‘signs’ make us feel hopeful, and we really  need that so we will take them.

I also wanted to mention to you that doing “balding for dollars” this year. BFD is an organization that supports oncology families at Children’s  hospital with expenses. It also helps pay for group activities for kids and families going through treatment. It is an amazing foundation and they have helped us- we want to give back.

Loggie is actually of the ‘poster’ kids for their main fundraising event this year. Her picture is on the pledge forms and she has been  radio commercials to bring awareness to the event. Listen for her on Jack FM from the 8th of April until the 26th.
I have posted the link for her webpage in case any of you would like to get involved or donate. We have a team of people willing to donate their locks including Logan’s best friend Jessica who is going to shave her head.

I think it will be a really great weekend! I don’t think I am BRAVE ENOUGH TO SHAVE… Jared and Brody are going to. I know, seems petty but I am afraid to shave my head and I have only a few things these days that are keeping me sane. I need to hide behind my hair.

Pretty shallow. I tell Logan all the time how beautiful she is, and how being bald doesn’t matter but now I refuse to sign up for a buzz cut. I am a big fat hippocrate. But she has less wrinkles to worry about.

 
Please join us if you can. Make webpage and raise funds to shave your head or simply make a small donation in support of our team. We’d love to say thank you and give back as much as we can. We are having a Pre-Balding party at our house before the event. Logan is going to dye hair in rainbow colors for those of you shaving it off!
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Poop juice

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Today was Good Friday and it was in fact a good Friday for Loggie. She by far had the best day she has had in a long time.
She is still not herself, and the fabulous, upbeat, and funky little gal we are all used too but today was a big step for her….

Today she got off the couch! HOORAY LOGGIE BEAR!

I can’t believe how hard this treatment has been on her, not a lot of improvements since surgery and radiation is literally wiping her out! She can’t handle the double treatments. So we are only going to do one per week. Hopefully we are still going to finish in time for Maui.

We are trying to concentrate giving her all the time she needs to heal. She is sleeping most of the days, her energy level is very low but I think sleep is what she needs.

We are all wiped. We are coming down off the adrenaline that has been feeding our bodies and now reality of what is happening is  hitting us all-  hard.

Every one of us is tired. You would think after 3 years of this we’d have a routine down pat, but the reality is it just gets tougher as the time goes on. Less Capacity I guess. Physically, and emotionally every one of us is struggling in our own way. Brody is being a little bugger, he won’t eat anything other than peanut butter- Go figure.

We are not coping with much. Even the medication seems to be hard to manage and is becoming an irritation dealing with organizing it 4 times a day. So we bought one of those pill organizers old people use. At least for the next couple of days before the next medication change we can just grab a container.

We realized when organizing all her medications that she is taking  27 pills a day!!!!! My goodness! Can you imagine taking all of those pills and not being able to swallow on your own. That is a lot of chocolate pudding.

Speaking of chocolate pudding, Logan has been given daily laxatives help her poo. Treatment is making her brutally constipated and cranky. We can’t mix it with pudding because it is a liquid  so we have been mixing it with a thick juice or something fizzy because it tastes terrible. We are letting her drink it  (and watching her like a hawk)  because apparently it doesn’t work as well if we put it through the tube. The whole process is such a pain in the ass (pardon the pun), she hates the taste of the laxative and it doesn’t help that the only thing she is allowed to drink is her ‘poop’ juice.

Last night, she was in a foul mood and simply refused to drink it. I couldn’t argue with her about it so I put it in fridge to try at a later time when she might be more responsive.

But then I woke up in the middle of the night in a complete daze to give her, her medication, and  I was so thirsty. I think you know where this is going…

I opened the fridge and saw the ice glass of cold of mountain dew, and eyes half shut, I chugged down the whole bloody glass…..

Two hours later…..HOLY CRAP!

Well at least we know- the poop juice works.

 

 

 


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Finally- a plan

 

Well unfortunately St. Patrick’s day wasn’t lucky for us. No pot of gold, no leprechauns. Just one long night with one really sick kid.

After only a few hours of sleep the morning didn’t get bring anything better so instead of a quick trip in for radiation we ended up at the clinic for 6 hours of  IV fluids and IV anti nausea medication.

We saw our oncologist again today. We literally are becoming regulars and I am kind of sick of seeing her so much. We don’t even book appointments anymore and as soon as the booking clerk hears my voice on the phone, she knows who I am. “Come on over” she always says like I am a neighbor in need of a cup of sugar or something.

The good news is, we got a plan today.
#1-  increase blood pressure medication. Her blood pressure dipped as low as 63/31 today- so basically she’s barely alive and that is a problem.
#2  more angry steroid meds. Apparently the swelling is likely not coming down around the tumor. I hate that drug and so does Loggie. Not only does it make her mean, it makes her have moon face, which is terrible but it is part of the plan so we are going with it.

#3 Bi weekly check up’s  with occupational therapist to assess her risk for chocking. Today we learned how to swallow pills with chocolate pudding. Awesome. I have a feeling Logan will be hating chocolate pudding very soon.

She’s still not allowed to drink liquids (anyone mentions the slurpees and they are in big trouble). It is a serious pain in the ass to crush all her medications, dissolve them and put them down the nose hose- to be honest I get confused half way through sometimes at what I’ve given. Also, some medications are also not as effective when you do it this way  but we have a problem since we fear she could choke on the pills. Pudding seems to be the answer, as long was we watch her like a hawk while she is eating it.  Apparently pudding can cause pneumonia (well not exactly but the way she is swallowing liquid and food it is possible it could go into her lung). I didn’t even know it was possible to confuse your stomach with your lung. The things you learn in the cancer world.

#4- See the ophthalmologist (eye doctor) and audiologist (hearing) by the end of the week. Her vision seems worse- (I think they are secretly roping a second opinion in from the eye doctor check for tumor pressure). Did you know that a big majority of brain tumors can be seen during a routine eye exam? Me either- another cancer learning- get your eyes checked.  The audiologist  is just for a baseline measurement before we give any more radiation to her head. Apparently a fairly common side effect of radiation is hearing loss-or so we also learned today.

So that is ‘The Plan’. We are going to do all of the above and “hold off” on the MRI for now.

God only knows they don’t want to confuse the doctors anymore. In all fairness, they must know what they are doing. They fear is the MRI won’t give them any more info and might sway them to stop treatment. We are best to give the treatment a bit more time to do its job. Sounds fair.

They explained Logan’s brain and her tumor  as a “dog’s breakfast” again today. I am not sure I like the description. I’ve seen a dogs breakfast and it’s gross.

But despite the gross explanation of her brain- we have a plan to help fix it and a plan is good. I am a type A personality – I can’t stand being in limbo so I feel better knowing we have a few steps in place that we are going to try.

I also want to be clear, that despite my sad blogs of late, I am staying positive, WE…I should say…are all staying positive.

Sometimes positive just doesn’t look the way you all think it should. I have received numerous concerned messages from you all , and I want you to know- we are OK. Really we are.

 These are just some major bumps in the road. We are fearful, and grieving and less enthusiastic this time around. We also all have a little bit of a ‘poor me’ syndrome that comes and goes. I am pretty sure it is natural- or at least that is what my therapist tells me.

And the way I see it, if I was walking around all  ‘Polly-Anna Positive’  with my head up my ass- you’d have a lot more to be worried about. I fully understand the magnitude of our situation, and sometimes it hits me like a ton of bricks.

I will however, make a promise to you all here and now.

I may be sad for short periods of times, I may rant and I may cry and that might stress you out because you won’t know what to say or do- but I won’t stay in this mind set long.

I do know negative energy doesn’t serve us well right now- but it is part of this process and I’m going to honor that I need to feel all the feelings instead of letting them eat me up inside.

I am only human. 

Loggie bear is only human as well and she is also sad these days. She is tired and fed up and angry.She is sick and tired of being sick and tired. This is our 3rd go round with this tumor- nearly 3 years of treatment already and this is just a lot for one little girl and one family to handle. Period.
But with that said, we are not giving up.

We are moving on- from leprechauns and pots of gold and crappy sad posts to a plan.

  We are moving on to spring and celebrating Easter.  It is what we need- a little rebirth, resurrection of sorts to rise above this difficult time- or maybe what we need is just a little chocolate…wine and flowers.

Always wine.

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Is his name really Dr. Fryer?

 
It has been a crummy few days since my last post which was a good day. Pretty much how it goes.


Loggie- bear has been feeling really nauseous and VERY tired. She did not have radiation today as they were doing that system upgrade at the cancer agency today but she is scheduled to have 2 treatments tomorrow. I am not quite sure how she is going to handle it.

In between treatments we are going to BCCH to meet with Dr. Fryer. He was a pediatric radiation oncologist for a number of years and have given  radiation to the brain many times. He knows what to look for so he is going to assess Logan and give us a second opinion about the symptoms she is having.

A radiation oncologist with the name Fryer, MY GOD. Imagine all the people that must have been freaked out over the years when they heard his name on the first day of treatment.

“Mrs. Lay, Dr. Fryer is ready to radiate your daughter’s brain now…” ummmm  NO THANKS-

He can assess her, but really, he should change his name.

The doctors are toying with doing another MRI to see if the tumor is progressing but they think another radiation oncologist should look at her first. Believe it or not but they are worried about getting false information on the MRI. If they believe the tumor is growing they may think radiation is not working or worth it, when in fact it may only be swelling, or inflamed tissue as an initial response to radiation.They only want to do the MRI if they are certain they might be missing something.

I don’t know. It seems kind of messed up to me. I think what they are saying is that they don’t really know what the hell to do and are afraid that they don’t really know what they hell they are looking at. Not very comforting.

I  don’t care what they decide- either way. I just want a plan for her to feel better.

I have this terrible pit in my stomach and I don’t have much confidence in anything right now. It is terrible to let fear creep in and feel hopeless it is very sad and upsetting when she is sick like this.

 I try very hard not to cry in front of her. It doesn’t seem fair for me to be the one crying, but sometimes I feel like I am being tortured as well. 

To top it off Jared has a man cold- (you’d think he is the one with brain cancer)  and now poor Brody seems to have it coming on. 

It has been a LONG weekend taking care of everyone and the week of double dose radiation is just beginning.

I am trying to be positive, I mean it is St Patrick’s day today, and I am wearing green, so maybe we will have a stroke of luck and things will turn around.

Speaking of luck and something positive- our friend Kyle is officially done his all of his treatment and his first follow up MRI showed he was in  was in complete remission!!!
His nickname is special K for a reason, he is pretty amazing! He too had a very rare form of brain cancer, and he was diagnosed almost the same time as Logan -2.5 years ago. We are going to miss seeing him in the clinic and hanging out with his awesome family but we are glad to see him go. He’s an inspiration to us and helps us believe our time will soon come as well.

We are so proud of your Kyle…..YOU ARE OUR STAR!

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A better day

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Today was a better day and I  am happy to report this.
Although the “DEX” (angry steroid med) is hard on Logan emotionally, the new higher dose seems doing it’s job and relieving some pressure. I can tell Loggie feels bit better, and for first time in a long time,  I saw her sparkle.
Radiation was quick and we were in and out like pros. It feels like we’ve been at this for a long time. Amazing how quickly something as terrifying as this can quickly become routine. Logan really likes the technicians at the cancer agency. She thinks one of them looks identical to “Cali” from Greys Anatomy. I find myself  hoping Dr. Mc Dreamy will pop in to check on us too.

We will not have radiation on Monday. They are doing a mandatory software upgrade in our department and although it screws with our schedule to finish in time for Maui, I guess it is kind of important that the machine works properly. 

Treatments will resume on Tuesday and then we will do 2 treatments each day next week to finish the “mega boost” to the back of her head. She will rest for the weekend and then start the full brain and spine portion the following Tuesday.

She is very tired. It takes a lot more energy for her to do the normal things she used to be able to do with ease. We have a lot of stairs in our house and sometimes she asks Jared to carry her up them. This treatment is hard on her, we can see she is struggling even though she doesn’t complain much.

She tries really hard to put on a brave face. She doesn’t like to miss out because of feeling sick. 

Today, we really encouraged her to spend the afternoon resting, but she would have none of it. She knew there was a party.

So she mustered up some energy and went to her friends birthday. I thought it was bad idea, that the stimulation of 14 girls would be way too much, but Logan didn’t agree.  She has been laying in a bed for so many days and I think being sick is taking its toll on her emotionally. She wanted to do something normal and fun. She was going no matter what I said.

And of course Logan was right. She knew exactly what she needed and her friends were the best possible medicine she could have taken today. She had a great time.

It was a fashion Diva party. They had a red carpet runway, sparkling apple juice, cameras flashing, and a makeup station. All the girls got ‘glammed’ up and had a photo shoot. It was right up Logan’s alley and I think it made her feel so much better to look better.

 At the party, each girl was given a piece of paper to rate each other on a number of categories- from best catwalk ,to best outfit and best make up.

Without discussion, they each gave Logan 1st prize in every one of the categories. 

Pretty amazing and so grown up for 10 years old. Logan felt so good about herself and my heart was filled with love for these girls. They are the kind of friends that i hope Logan has all her life. The kind who go out of  their way to make you feel special, loved and number one.

Friends are always important, but more so when you are a child. Children just want to play. Being in the real world is hard on them. Especially the cancer world. It is a huge burden and being with her pals today was exactly the healing she needed.

The girls also shared with us that at the school assembly today they honored Logan by singing “LEAN ON ME”. They said the whole school sang (even the boys)  it and that it was only a practice run. As soon as Logan feels better they want her to come to the school, and they will do another assembly so they can all sing it for her.

Seriously, I can’t even handle it. Amazing.

Today, was good. Today, despite cancer, I am very grateful.

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An average day of up’s and downs

March 13th 2008

Today Logan actually made it into the machine for radiation treatment. The whole process took about 40 minutes from start to finish was much quicker than we expected. The radiation machine looks a bit like a giant scanner over top of a table. It took a fair amount of time to get her lined up and bolted down properly before treatment could begin. The technicians were back and forth many times, checking monitors, getting approvals from the doctors and readjusting Logan. She was a champ and didn’t complain at all. She didn’t panic when they secured her to the table and she lied perfectly still.  They promised her it would be much quicker moving forward, for the next 10 treatments of “BOOST” to the posterior fossa, she have her in and out in less than 15 minutes. 

After those are completed, the treatments will be longer and we will radiate her head and spine together.

We couldn’t be in the room with her during treatment. We had to wait outside and watch her on a monitor protected by a thick metal door.  As the green light came on indicating that radiation had started, I couldn’t help but cry. There is no turning back now. I cried because I felt my hope somewhat shattered as I thought about how desperately I wanted to avoid doing this to her and I cried with the hope that this might cure her.

I was also reminded today of Logan’s friend Makoda. Today is her birthday. Makoda passed away almost 2 years ago from AML and Logan cared very deeply about her. Makoda is the first friend that Logan lost to cancer. I couldn’t help but think of how heartbreaking today must be for her family. Their daughter would never get the same chance at life that Logan has been given. I might not like the choice of radiation but thinking of Makoda and her family, I was reminded that I have a lot to be grateful for.

Having Makoda was on our minds today was a blessing and I think a sign. We told Logan as we left the room that Makoda was watching over her and that we were sure that her birthday wish in heaven would be that radiation worked and Logan would get better.  She liked that and it made me feel better too. I thought maybe I was grasping with my thoughts until I got a tap on my shoulder.

I couldn’t believe my eyes as I looked up and saw Makoda’s aunt.

 Turns out she works at the BC Cancer Agency, saw us on the schedule and just wanted to swing by and show her support.

We smiled, chatted and as she walked away I thanked God…and of course Makoda.

Maybe things would be alright after all……

We left the Cancer agency feeling uplifted and headed to BCCH for another neurological assessment.

We didn’t get the good news we were hoping for. I guess we should know better than to expect anything different in this world of cancer by now.  One moment of being totally uplifted can be quickly replaced by an unexpected slap of fear. It is like riding a roller coaster, all day, every day.

Logan met with three neurologists. They went over her with a find tooth comb and shared with us that her neurological assessment was poor. Her swallowing, eyesight, tremors and walking are noticeably worse. She couldn’t finish the memory and recall portion of the test because she was too lethargic and nauseated to focus. The doctors weren’t happy with how she looked, still too skinny and dazed.  We weren’t  overly surprised with what they shared with us, we aren’t blind, but we hoped the doctors would have an explanation for her troubles other than the tumor.

They didn’t.

Instead, Dr. Hukin increased Dexamethazone (the angry steroid drug) from 2mg a day to 6mg a day in hopes of reducing some pressure in the brain and she also increased the dose of cyproheptadine. Hopefully giving this new cocktail three times a day will be the ticket to feeling better. I know cocktails usually make me feel better.

If it doesn’t work than it likely means the tumor is growing.  Since Dr. Steinbok couldn’t take much out, that is a problem. There isn’t much space for the tumor to grow before things become dire and we need to a watch her very carefully. If we don’t see improvement in 4 days time- we will do another MRI and take a look.

Sadly for Logan, the worst thing that happened today is that the doctors told her she is no longer allowed to drink any liquids and that her meals must be given through her feeding tube until we reevaluate next week. Her assessment also showed she is in the high risk category for choking and because of where the tumor is, we can’t risk it.

Logan didn’t cry when she was bolted to the table today and blasted with radiation but she did cried when they told her no more slurpee’s and no more spaghetti. Cancer is such a bully. 

We are all emotionally exhausted, and upset.

All we can do is hope that radiation the new cocktail will relieve some pressure and things will turn around soon- 4 days to be exact.

In the meantime, I am going pour myself a glass of wine-which Logan thinks is totally unfair. Apparently I shouldn’t be allowed to drink either but wine is about the only thing keeping me sane these days. Logan doesn’t care about my sanity. She said if I had a feeding tube I’d know how she feels. It got me thinking- It’s not a bad idea. It could be a win win. I could buy cheap wine at the liquor store by the bags. It wouldn’t matter how it tasted, I could hook it up and it would go straight to my belly-

My kid is so smart!

 

 

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Life is a gift- as long as you remember to forget

March 10th, 2008

Another middle of the night blog, I may as well be a hamster.

It is quiet and dark and while most of the world is asleep, my mind won’t shut off. Bedtime used to be my favorite but now I find it is the worst time of the day. I don’t seem to have the ability to rest and it makes me anxious to lay awake thinking. So here I am.

Logan is still struggling with her cycle of nausea and swallowing difficulties. Although her headaches have improved,  she is clearly not feeling well and is exhausted easily. It is  very worry some. I know the doctor’s said a deterioration could be expected but watching her get worse instead of better is not easy.

I am doing my best to be logical. It has only been two weeks since her last surgery, so her brain is probably still very much like a dog’s breakfast, but I am on the edge and any slight change almost pushes me right over.

We started a her on another new drug today (yes another one) in hopes that it will help reduce some of the swelling around the tumor and bring some relief. It is a steroid, and it makes her angry. All the medications have side effects and I can’t help but wonder if any of them are actually helping or just making her feel worse.

It is such a balancing act managing so many medications. One new drug equals 10 new side effects.

Are the side effects worse than the drug? or is the cancer worse than the medications? 

Who knows? And do we really have a choice?

Without the medications or the treatments, it is obvious Logan wouldn’t be alive, but it also can’t be good putting all these toxic substance in one tiny body.

The tremors in both her hands are getting worse and it is making it harder to do the things she loves to do. Art projects are more difficult for her and she is getting very frustrated. I think we have about forty five attempted crafts lying around the house right now.

We got out for a bit today which was nice. We all needed a change of scenery. We went shopping (Logan’s favorite) and then we went for dinner at a fellow oncology families restaurant in West Vancouver (Mangia e Bevi ). We had a great time catching up with our friends Reid and Diane and although the day was simple, it was great. 

We laughed and did a few ‘normal’ things and just for a little while we forgot about brain cancer.

I think we forget to do that sometimes.We forget to just forget.

The whole reason Logan is doing all of these treatments is to live, to forget about cancer and leave it behind. I need to remember that, I need to remember that sometimes its OK to just forget.

It is so easy to get wrapped up in sadness and fear, anxiety and stress and to let those emotions overshadow gratitude and happiness. Overall, our circumstances are not great right now but that doesn’t mean we don’t have a lot of great things and people in our life.

I think I need to make a better effort to focus on what brings us joy rather than putting all my energy into the one big thing that is bringing us so much grief. Cancer shouldn’t have that much power.

It is cliche but ‘Life is a gift’ and it is the simple moments that make it worthwhile. Tonight I watched as Loggie do her best to scarf back a big plate of spaghetti and I was reminded of those simple gifts. Tonight I wouldn’t have to feed her out of a tube.

I guess that is how it is, sometimes gifts are small and they come in the form of a bolognese sauce and sometimes they are big like making it through a major surgery. But life is also plain and ordinary so we don’t always see the gifts in the everyday,  like having to do another load stinky laundry (thank god we have clothes) or paying another bill (thank god we have a line of credit…haha).

Experiencing any moment means we are alive and that in itself is a pretty big gift, one almost none of us acknowledge.

Pardon me… for being very deep, but I guess this is what happens when you are faced with life or death. A shitload of contemplation.

‘Life is not measured by the breaths we take but by the moments that take our breath away.’

I am staring at a sign hung on my wall with these words written across it.

So, True.

However, I can’t help but think,  life is also NEVER measured by the things we wished we’d do, it is measured by the things we actually take the time to do. Life is measured by taking chances.

It is measured by the quality of friends you have, and the family you have created for yourself even if they are not your own.

It is measured by finding your own true happiness. Period.

Life is challenging, as hell.

Sadly I have an inclination it will always be this way. There will always be struggles, obstacles and circumstances we will can’t possibly understand. Maybe we just aren’t supposed to.

 I think Logan knows this. She doesn’t question the reasons for what has happen to her. She never asks ‘why?”. She just lives each moment, each day and is happy for the good that comes. She doesn’t dwell on the bad, she can fall asleep at night, find peace, shut her brain off and let go.  I have so much to learn from her.

I hate end this post with such a heavy message, so I will share with you a cute and somewhat embarrassing parenting moment about my other child, Brody. My ‘other’ child- oh crap, that statement is so terrible. Note to self- I need to write more about Brody. So often siblings of childhood cancer get left out- of stories, attention- experience and life. Not fair- I’m going to try to do better.

So about Brody.

Brody is the funniest, coolest 4 year old kid out there (biased mom opinion). His vocabulary does not match his age and he is so sharp and quick witted that he continuously shocks us with the things that come out of his mouth.

 He’s in preschool and he loves it. It is a parent participation preschool and I feel like the shittiest mother on the planet because I haven’t participated once in the last couple of months. Instead I just pay the ‘I’m useless fee’ and someone else picks up my shift. Needless to say, I haven’t made many mom friends.

No one has any idea why I am not involved but I am sure they have made up all kinds of reasons why I am such a slacker. I can feel the negative energy and judgement pointed in my direction every time I show up to his class. It probably doesn’t help that I usually look like I’ve just been hit by a bus. I know they all think I am a total disaster- I guess I kind of am.

 But yesterday instead of avoiding their obvious stares,  I awkwardly approached the group and tried to participate in the conversation. I tried to make an effort, possibly solidify a few play dates for poor Brody.

That didn’t happen.

The ‘perfect’ moms were standing around in their usual pod wearing their brand new lululemons looking polished and chipper. I strolled in on two hours of sleep looking gaunt and disheveled and joined mid conversation. I quickly realized that I didn’t have much to offer. It was more of a competition than an exchanging of words and It was clear someone was vying for the ‘perfect’ mom award, it definitely wasn’t going to me. They talked around what sports their kids were involved in, what toys they allowed them to play with and the seven hundred activities they had participated in that previous weekend- which was why of course ‘they’ all looked totally exhausted- (all eyes directed at me)

As they spoke the kids filtered out.

“I took my kids to see the bee movie”  a perfect mom said proudly.

“Oh I love that movie. My kids have already seen that one four times. I just bought the movie Surfs up” said another one. “It is such a great movie…probably the best one I’ve seen for kids in a long time…” They looked at me.

I nodded politely acknowledging the conversation without contributing. Poor Brody hasn’t seen either of those movies and I had no plans to add watching them to my agenda any time soon. We have radiation and four hours in the car to deal with damn it. There will be wine and bed time when I get home.

I smiled at them, grabbing Brody’s backpack about to walk away just as he made eye contact with them.

He could sense I was uncomfortable and it seemed like he wanted to rescue me. Very seriously he stopped, made eye contact and blurted out  “OH ya- well we watch movies at my house too sometimes, and last night we rented KNOCKED UP, and it is a really good movie”

He winked at me and proud as a peacock- with a ‘take that’ attitude he ran off to the playground.

The perfect mom’s mouths dropped wide open.

PRICELESS (thanks for the gift B-dog)

Of course I could have died right there- and he had no idea what he was saying-  so I should have scrambled to correct him, but he felt proud of himself for shutting them up and that made me proud of him too.

I opened my mouth to back track, and explain to the perfect mom’s that I actually had not let my four year old watch an R rated film the night before but all that came out was laughter. I must of looked like d delirious lunatic, which will only give them more reasons to talk about me.

I sighed.”Poor kid, someone really should take him to see the bee movie. Call me if any of you are going. We could have a play date….”

No one said a word.

No Bee movie for B- but god I love that kid. Bless his little heart- he is so worth the thousands of dollars I am going to have to pay for his therapy one day.

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Let’s Do this- Radiation Day 1

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March 8th,2008 7:39pm

Yesterday was the official start day. Radiation- Day 1. We spent the entire day at the BC Cancer Agency and found it very different than Children’s hospital. For starters, Logan was the only child we saw all day.

The energy is much more clinical and serious at the agency. Other than a 1000 piece puzzle in the waiting room, there is almost no fun factor. It is all business.

I made an observation. Most adults that we came across today have a very heavy feeling about them. I could  literally feel the stress, anxiety and tension around me. No one was speaking to each other and we all stared at the big elephant that sat in the corner. Most people avoided eye contact with us, unable to imagine that a child was in their shoes.

It was a very awkward start to this part of the journey and it made me think of how much more of an impact cancer has on adults than it does on kids. Children are innocent and ignorant to the grown up world and I honestly think this gives them a bit of a hand up in healing.  Children play, and laugh, and the focus on having cancer and the magnitude of what is its, is actually very low.  Treatment is something they don’t enjoy but have to do. When it is over, they don’t dwell on it, they move on, back to the Lego table, back to having fun.

For Adults, when cancer strikes, everything changes. The magnitude of the diagnosis sets in and cancer can’t be an after thought. It becomes them.

 Everyone seemed  very sad, angry and frustrated. There was very little communication between anyone although as the nurses came they would tell each patient the number of treatments they’d already had.  Some people had obviously spent  weeks together, yet there was only an awkward silence.

 

The doctors and nurses seem nice enough. Having a child on their schedule seems to bring them happiness. Happy probably isn’t the right word as no one is happy to be treating a child with cancer, but relieved almost that their patient isn’t so upset and uptight.

Children do always have the ability to “light up” a room. It is a gift we could all learn to try to be better at. Looking around yesterday, I couldn’t help ponder my own self. I thought about my life and how I too was once that child that had that same sparkle. Where did that part of me go? How do I get it back?  Life’s circumstances have weighed me down no doubt, but is there a way for it to have such an impact on me? How can I let things go more easily? Big questions.

Anyways, back to radiation. It is actually a very interesting treatment and we all  learned a lot yesterday.

Logan had her immobilization cast build, and despite what it is going to be used for, it was a pretty cool experience.

She had numerous CT scans to check and double check her tumors. They compared the scans to her body and mapped out the radiation field and tattooed where she needed to be lined up in the machine.

She didn’t like being  tattooed and cried while it was happening but when it was done, in true Loggie style, she sat up and threw out a joke.

“Wow” she said…” I’m not even 11 yet and already I have taken marijuana (her THC medicine) and got a tattoo.”

We all laughed and she again “lightened” the room.

Tumor Humour!

It was a long day and we are glad to finally have the ball rolling. She will begin the actual radiation on Thursday of next week as they need a few more days to “plan” using her CT and MRI scans.

She will begin with the “boost” of radiation to back of her brain (posterior fossa) and then they will begin the cranial spinal (full brain and spine) portion in a week or two. The first 10 sessions of radiation will only be about 45 mins from start to finish but once the spinal portion is added in we will be there for about 2 hours a day.

We made a plan to ensure all of  her treatment will be completed in time for our trip to Maui. This will mean that some days Logan will have 2 radiation treatments six hours apart. We were happy to hear that this could be an option since she has 31 treatments to complete and with closure days, Easter, and our delayed start we wouldn’t have been finished in time for the trip.

Logan doesn’t say much about her treatment schedule but she made it very clear she would not be missing this trip. We tried to explain to her that we’d still go to Maui even if it meant that we couldn’t go with Uncle Reid and Auntie Diane but she would not have anything to do with that plan. She is excited about going with them. She told the doctors she was “setting her intention” that they would work it all out  for her. They left the room, and BINGO a few minutes later they had this plan and promised Logan that no matter what they’d have her done in time to go to Maui.

I told her I was proud of her. Her response also blew me away.

“Mom, I’m doing all this treatment so I can live. I am going on this trip”

 

Speaking of living, we know we need this treatment to start so she can live. She woke up again this morning nauseated with headache. Her symptoms are not getting better and we are worried. I hate the idea of radiation but not as much as I hate the thought of what those tumors are doing to her.

Dr. Goddard, her radiation oncologist, prepared us for what is to come. She explained Logan’s symptoms may get worse before they get better. There will be some swelling of the brain and this may cause us to think the tumors are getting worse. We didn’t like the sounds of that, so Loggie and I  went for a meeting with our psychologist for some tips on how to cope.

 She recorded us something we can use to imagine what treatment is doing. We are visualizing her tumors being blasted (from radiation) and exploding into a million little pieces like something from a Star Wars movie. The particles left over will be absorbed (into the atmosphere of Logan’s body)  by the chemo so they can VANISH for good!

  In the words of Yoda himself “Do or Do not, there is no try.”

So I guess it is time- lets DO this!

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Dr. Butt Plug

By —

March 6th

Today we started the process of radiation. What a process it is.

Logan had blood work and Jared and I  had one final meeting to discuss with her oncologist to discuss the details of treatment. Our minds are boggled. The second opinion she requested from Toronto Sick Kids came back and we talked about what they said. Basically, they agreed with the higher dose of radiation, so that solidifies the final plan. Not going to lie, I am kind of disappointed.

Logan had a full  exam by two neurologists. Dr. Hukin asked to speak with us alone. Speaking alone with Juliette never means good news. She wanted to be clear about the sense of urgency to start radiation. She told us we can’t delay it any longer, it needs to start immediately. She shared with us that Logan’s neurological exam showed that her symptoms are getting worse. Both her left and right hands have tremors and she is having trouble with using them properly. They are much weaker than they used to be, think limp hand shake.

 She is also having trouble swallowing (I’m sure the feeding tube in the back of her throat isn’t helping) but it is a big concern. The tumor sits in an area that controls swallowing and the concern is that it maybe pressing on that area. She will meet with occupational therapy tomorrow to have an assessment done to make sure she isn’t a choking threat.

Tomorrow will also be our first day at the cancer agency, which means we leave the comfort of the children’s hospital to enter the adult cancer world. Radiation is only given at the cancer agency which means all ages of patients go there. It should make for interesting people watching. My hope is that the doctors and nurses will be as compassionate as they are here- we are pretty freaked out about changing who cares for Log.

 Our appointment starts at 8am and the technician to go over the whole process with us one more time. From there, Logan will have a CT scan and body mold will be made to fit her so they can bolt her down  to the table as she receives her treatments.

She will  have some “mapping” done which basically means they will measure the size of the tumors and the correspond that with the size of radiation field.

She will also get her first tattoo.

Logan was hoping for a dragonfly or something cool but apparently they will only be small dots (lucky her, her first tattoo is a blackhead) placed on her back and head to help align her in the machine before each dose.

Tomorrow will be a long day. We are hesitant and nervous to get started. But also grateful. It is time.
With that said, I want to take this moment to be grateful and say thank you to all of you who have sent, gifts, money, food, and messages of support to Logan. You will never know how much it all  means- but honestly we couldn’t do this with out you all. As my friend and fellow cancer mom Tracy Dolling would say “Life is a shit sandwich but you are all the warm glass of milk we wash it down with”

So thank you- each of you- for not letting us choke on our own crap!

I leave you tonight with a funny story.  Humor has been  a gift during this stressful time. We honestly feel like we have two choices at this point, Laugh or cry. We are choosing laugh.  I worry that if we start to cry, we may never stop.

So here it goes, (and keeping in line with tonight’s theme of crap). A couple of weeks ago Logan was admitted to the hospital with a fever. She was neutropenic.  For those of you who don’t know what that means, it is basically when you have no white blood cells to fight infection and your whole world becomes a war on germs. Any fever could indicate infection, and is a big deal. It usually means an unexpected overnight stay and three days of wicked antibiotics.

Anyway, we were put into a room while we waited for an examination and told a new oncologist by the name of Dr. Joel was attending that night. Logan was puzzled because she didn’t know who Dr. Joel was and Logan is pretty much on a first name basis with all the oncologists at Children’s.

It was the middle of the night and both Logan I were in our pajamas. We weren’t in the mood for some new inexperienced on call doctor, we wanted to be admitted and moved upstairs quickly. I had called ahead, I knew the drill. 103 on the thermometer meant we were staying overnight. The charge nurse knew we were coming. There was an empty bed on 2B (similar to an upgrade at a hotel it is the best floor) and we didn’t want someone to check in ahead of us.  We wanted to get the show on the road.

The nurse winked at us, told us that we’d be happy with the new doctor, told Loggie he was pretty cute and super tall and that all the nurses were swooning over him.

He was.

Logan and I both started giggling like school girls and when doctor Joel left the room, Logan and I fluffed our pajamas (I my hair) and we both put on lipstick. I am sure he thought we were totally ridiculous but he didn’t say a word to us and pretended not to notice that we ‘freshened up’ when he left the room. He went about checking over Logan very thoroughly. He ordered blood work and cultures and starting writing the paperwork to have her admitted. 

Yes- cute and efficient and painless. Dr. Joel got a thumbs up.

Then he returned.

“I forgot one thing” he said to Logan who was bashfully fluttering her eye lashes at him, “I need to check your bum”

Logan gasped and immediately turned 50 shades of red.  “WHAT??? WHY???

Dr. Joel explained what a h hemorrhoid was to Logan and all the other disgusting things can happen in that area when a patient is neutropenic. She looked horrified and I swear she could have died right there.

The cute, tall oncologist pulled on a pair of latex gloves, grabbed a flashlight and proceeded to stick his finger up her bum.

Logan closed her eyes and tensed up. She couldn’t bare to watch.

“Just relax Logan, don’t tense up and please don’t mind me” said Dr. Joel

Logan opened her eyes and turned to him.” No offense, but as a new doctor, I think you could use some advice. You shouldn’t say tell your patients to not mind you, because…Umm it is kinda hard to do that when your finger is shoved right up my butt”

He laughed a bit and then left the room. Logan rolled over, lipstick  was smeared all over her pillow and all over her face. That was it. Dr. Joel would never be the cute, tall, new oncologist instead moving forward Logan named him Butt plug.

Not once has a doctor has ever checked Logan’s neutropenic bum before, but every time Logan tells a different oncologist what happened in a ‘Can you believe him’ kinda way they are impressed with Dr. Joel’s thoroughness. I think Logan is secretly trying to get him fired. 

We now laugh every time Dr. Joel walks in the room. It has become a private joke. I pass Logan a tube of lipstick she mumbles his new name under her breath.

When we see him in the clinic going in to examine a child Logan always goes red and says how sorry she feels for the kid behind the curtain. She suggested putting up warning signs about Dr. BP.

You may not find this funny but we do and every time we see him, we bust a gut and that is good medicine.

We have a twisted sense of  humor, and so many private jokes. Logan and I call it tumor humor and we think Dr. Butt Plug is funny.

Laugh or cry.

We choose to  Laugh.

 

 

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