Is his name really Dr. Fryer?

Mar 17, 2008 9:43pm
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!

A better day

Mar 14, 2008 11:10pm

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.

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!

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.

Let’s Do this- Radiation Day 1

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!

Dr. Butt Plug

By Jennifer Montgomery — Mar 6, 2008 7:38pm

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.

Lottery win

By Jennifer Montgomery — Mar 3, 2008 7:36pm

March 3rd

It has been a couple days since my last post so I thought it is time for an update. Log seems to be getting a bit stronger each day. Today was better than yesterday. We are happy for the small steps forward. She woke up with some pain and a headache and nausea but by mid day she felt better.

We are mastering the feeding tube and it doesn’t seem to be such a big deal anymore. Only a cancer mom might think feeding your child through a tube isn’t a big deal, but really it isn’t. It is kind of like having a newborn baby. The worst part is getting up every 4 hours to change the bag. The feeding tube has actually been a blessing. It has alleviated a lot of stress around eating. If Logan doesn’t feel up to eating a full meal, now it is not a big issue. I know she is getting her nutrition in other ways and she can take the time she needs to for her appetite to come back. I can relax. It is all good.

Loggie had a busy weekend with lots of visitors. It made her happy to have people around. Today, I drove her to school so she could see her friends. Everyone was excited and welcoming and I couldn’t hold back the tears. The school loves and misses her and her friends truly are her best medicine. They treated her like just like a normal friend who had been away on a vacation or something. Oh, how I wish that was the case.

In talking to the teachers at the school who don’t teach her, it dawned on me. Logan has connected so many people though this site and you haven’t even met her. Most of you don’t know anything about Logan other than the fact she is an 10 year old girl with a brain tumor.

Logan is so much more her disease. She is super smart and has always done exceptionally well in school. She is really, really funny and witty in a “too wise for her age” kinda way. She always will be the first to say what everyone else is thinking. She is an “old soul” and has knowledge that most of us spend a lifetime acquiring. She has a peaceful presence and is loving and trusting of those around her. She has the most beautiful smile, it lights her up. Everyone says she has a sparkle.

That being said, she is still is only a 10 year old girl. She thinks most boys are gross. She loves her best friends and has a new one almost every week. She is artistic and creative and spends hours doing arts and crafts. She fights with her brother all the time. LOVES playing skip bo and family game night on the wii. She loves babies. If you have one, she loves you too.

Logan is also a bit high maintenance (don’t have any idea where she gets that from???). She cares about how she looks and what she wears. At only 10 years old almost all of her money to go towards her wardrobe.

She is a fish, or at least she was in a previous life. If she could she would swim everyday she would. One the worst things about cancer for Logan is that having low counts means not being able to go to the swimming pool. Because of this she takes at least 4 baths a day- not even joking.

In a nutshell Logan is just pretty awesome and as such she attracts awesome people into her life, like all of you.

We are back at the hospital Thursday and Friday for some blood work and meetings with the doctors and then it is official-

Radiation begins on Monday.
Instead of going on again about how I am feeling about starting radiation, I will leave you all with this story from the ICU the day after Logan’s surgery.

It was early morning and Dr. Steinbok was doing rounds. He approached Logan’s bedside and was greeted by Patty, the ICU doctor that runs the ward.

Patty is the best. She a short, lovely asian lady with a funny personality. She makes you feel so comfortable and at ease that sometimes you forget that you are in probably one of the worst places in the world, the ICU.

Dr. Steinbok exchanged greetings with Patty and he asked her how she was.

“Tired Paul, (that is his first name) I wish I could win the lottery”

Dr. Steinbok looked puzzled so he asked “Why on earth would you like to win the lottery Patty?”

She rolled her eyes “Ummm, so, I wouldn’t have to work”

At that moment Dr. Steinbok took Logan’s hand and began examining her. “If I won the lottery I’d still work you know, because I love what I do…”

I piped up “Actually, because you work, so many people do win the lottery, Dr. Steinbok”

Logan opened her eyes weak and tired she raised her head from the bed so she could look directly into her doctors eyes. “Yes, like me, I guess I have won the lottery a 3 times now.”

We all started laughing. We love witty, sarcastic Logan. Head cut open, shiny stitches running down her neck, tubes hanging all over and her heart rate machine beeping like crazy. She looked at us one last time before she laid back down.

“Maybe we should stop buying tickets”

Italy for life

By Jennifer Montgomery — Mar 1, 2008 7:35pm

It is 1 am on the first day of a new month and here I am blogging to you all. I should be tucked in my warm bed but sleep doesn’t come easily anymore and I hate just lying there awake. My mind doesn’t know how shut off anymore. It is only an hour until the next feed and round of medications are due so instead of dozing off just to wake up, I’ll just sit at my computer and write.

Today was our first full day at home and Loggie did pretty well. Her energy level is still very low and she is having trouble with the zillion stairs we have in our house. Her bedroom is upstairs it is exhausting for her to go up and down. We suggested making a bed for her on the main floor but she feels comforted in her room and I think she likes the privacy. She spent most today enjoying the new crafts that our friends brought over to entertain her and she painted some really beautiful things. Logan is artistically talented. She is creative and it is nice to see her relax and enjoy an activity.

Today she drew a picture of our family. It was simply titled ‘The Lays’. We were all smiling and even our little dog looked happy. I couldn’t help wonder if she this picture is her way of telling us she hopes for those happy smiles to return to all of our faces soon.

I ventured outside of the house and in to the world today. Well, I went to Safeway if that counts. It felt so foreign and strange to do something as simple and normal as grocery shopping. I couldn’t help but stare at the other families. I am pretty bad for staring at people at the best of times but today it was different. I was in awe and amazed that life could be carrying so normally for so many people.

I wondered if any of them knew the same depth fear and sadness that I know and I wondered if they did, how they carried on. I wondered the aisles and in the end left with nothing. We ordered take out.

I cried a lot today. Not uncontrollably or in front of Logan but I did cry. I guess I have moved through the angry stage into sadness. Denial came and went a long time ago, or maybe is last 3 years have been. I don’t know. I am hoping for acceptance but I just don’t know how it will ever be possible to accept this reality. It all seems so unfair

I was stronger with her diagnosis and her previous relapse than I am now. Logan was too. She seems a different to me these days. Exhausted- frustrated and absent. I know we have to get through this and find strength. Its only about to get harder. Treatment hasn’t even begun. These days in between are agonizing. We are just waiting, worrying, giving so many medications and caring for Logan’s every need around the clock. Basically, the days just never seem to end.

I am working on having patience, trying to remain optimistic and am watching for signs (from anywhere) that we are on the right path.

Who knows if we are,but I can’t seem to get this little sign out of my head or the warm fuzzy feeling that comes every time I think of it.

Last week, when we were still in the hospital I had a conversation with my mom.

I have doing a lot of research on Logan’s tumor- mainly treating it with the chemotherapy agent cisplatin . Logan received carboplatin as her initial chemotherapy as was diagnosed and she responded well – the tumor was stable for almost 2 years. The last round of chemotherapy that she has a completely different family of drugs- and obviously that didn’t work.

Cisplatin is Carboplatin’s big sister and basically she is kick ass. They are from the same family but Cisplatin is much stronger than Carbo. My gut has been telling me for some time that if Logan responded well to Carbo then it would only make sense that she would respond to the stronger version. The only problem is that although cisplatin could be more effective, much more toxic and comes with a lot more side effects. My oncologist agreed that it may be worth a try but any information we could find was very limited and the results inconclusive. She told me that we needed to find at least a phase two study from a reputable source to support us making the decision. So like a dog with a bone, I have been relentless in searching. Staying up all night reading studies and racking my brain trying on where to look for these trials. A few nights ago, as I was frantically reading online I found ‘the study’ I was looking for.

The trial I came across using Cisplatin was not only a phase 2 trial, it also highlighted a case of an 8 year old girl with similar metastasis and pathology as Logan’s tumor. It met all the criteria, published journal of clinical oncology (reputable) and the research came out of the National tumor institute in Milan Italy. BINGO.

ANYWAYS back to the conversation with my mom. She started chanting that she wished we could get a ‘sign’ so we would know that this chemo was in fact the right protocol for Logan.

Irritated and exhausted I angrily shot down her need for a universal manifestation of the answer. “Enough” I replied to her “We/ I have to figure this out on my own- there is no ‘sign’ that is going to come falling from the sky telling us that things will work out. OBVIOUSLY, if that was going to happen, it would have already”

I could tell I hurt her feelings and that she was upset with me, but I didn’t care. I had too much to think about already.

I left the room. I needed to gather my composure and take a bit of break. We were being moved down to the oncology ward in a few hours and I needed to prepare myself to enter the ‘cancer world’ again.

Fast forward a few hours and it was time to make the move to our new home. The porter was called and I was surprised that when she arrived she was an old lady, very petite, late 60’s with bobbed gray hair and a thick accent.

Somewhat annoyed with her inability to navigate the bed, I offered to help. She welcomed my offer and as we weaved the bed down the hall she said this to me.

” Gosh, Sometimes these hallways remind of the narrow streets in the town I grew up in, in Italy”

I almost fell over.

“What did you say?” I said to her.

“Italy, dear- where I grew up, Have you ever been- you should go one day, it is beautiful?”

Baffled I couldn’t even answer- It had to have been a simple coincidence. This wasn’t a ‘sign’. It couldn’t be.

I didn’t say a word to Jared about what happened with the porter. He’s not really into all that’ hocus pocus’ as he calls it and I wasn’t really in the mood to talk. Instead we drove in silence to get some dinner for the crew. He could tell that I was upset and obviously rattled about something but he didn’t ask. Then, just as we were about to turn into the hospital something happened.

It was so blatant that I literally screamed HOLY SHIT!

Jared slammed on the brakes. “What?” thinking we were about to get hit by a car or something. I started to cry and pointed out the window in disbelief. Right there at the corner of Oak and 14th ave in the transit shelter was a giant poster enticing travelers to Europe. It read ITALY FOR LIFE it read.

I couldn’t deny it- it was definitely a sign.

Now our questions are not the choice of chemo- the choice is clear.

Now we wonder should we be holding off on radiation? Should this ‘Italy’ chemo come first? Can she handle chemo right no-she is so weak and fragile?

Will she be the same child she was before after radiation, will I regret it?

What is the right answer and how do I make it? Can I please have some more f**ing signs?

Everyone tries to comfort me by saying that there I can’t make a wrong decision. That because I am making them from the very depth of my soul but as a mom, and faced with this unimaginable choices how can I not second guess yourself.

I look at Loggie, she is so innocent and trusting of me. No question, she believes her mother I has the answers and I will do the right thing for her yet as I sit her and type these words I know, I have no answers at all.

And maybe that is kind of the point. There are no answers and I may never be clear on what the right choice is.

I don’t know, maybe this is what it means to have faith.

Negative Nelly

FEB 28, 2008

Loggie will get to go home for the weekend!!!!! We hope arrive at our place by dinner time- who is cooking for us?

Only one person has a feeding tube after all. Ha ha.

We are a bit stressed about going home and about the “feeds” but we are so looking forward to sleeping in our own beds!!! even if it is for a few days.

Sorry in advance but I am about to get a bit negative. Today was a really tough day! I think today was most negative I have ever been about Logan’s cancer and I have to admit it was ugly. I have said the F**K word well over 300 times. I am going to say it again. FUUUUCCCKKK!!!

I really hate this.

I look at my child lying over in the hospital bed beside me and there is nothing I can do for her. I can’t make any of this better. I feel helpless and weak.

I look at my son who has spent his entire life in this hospital and I feel so sad. He is frustrated and tired of begging for attention from us. He is acting out and misbehaving (we call him bratty Brody) and it is all because we don’t have any energy to give to him. Both Jared and I are so stressed emotionally and physically. But me, I feel angry. I feel angry and I don’t know how to let it go.

I look at my parents who are trying to be solid for us but they too are short fused, tired and sad. They feel helplessness that they can’t help Logan but also because they can’t help us. It all just pisses me off.

I know that I need to stay focused and positive and brave and grounded. I don’t need to be told. I know.

But today just for a moment, just for this moment. I am going to take time to feel mad. To say sometimes things such ass and I am bitter and I wish we didn’t have to deal with this for so long, so many times.

I have searched my mind and tried to ask myself why I am feeling so down. Maybe it’s because exactly one year ago today Logan was in surgery with her 1st relapse and I think about how hopeful you are before a relapse and how different cancer is with each one.

Maybe it isn’t because of anything. Maybe it just because I am bitchy and tired and PMSing.

Either way one thing I know for sure is that this doesn’t get any easier and with each passing day a little more of our innocence gets lost and we get a little less ignorant to what cancer is capable of every single day.

We know more today a few days ago…we are now a member of the “feeding tube” club. I hate this club.

Loggie is no longer a drug virgin. She knows what it is like to be “stoned”. Not from smoking a joint as most normal teenagers might do, but from a synthetic form of THC drug to help her eat and sleep.

I have spent yet another night in this place on a ‘new’ cot and I have learned there isn’t one good parent bed in this place. And as I cleaned Logan’s incision today I realized that not only have her scars gotten bigger- but so have all of ours.

Two day ago I wrote about a little miracle Eden that came into this place with a big problem and left a few days later with a new life.

Tonight a new family moved into her room- They have a 9 month old baby with neuroblastoma. Another family who’s world is now crashing down unlike Baby Eden there is no “easy fix.”

The stories are endless and I am starting to see it as a revolving door of heartache. As grateful as I am for this hospital and how hard everyone is working to help Logan, a secret part of me loathes this place for taking away so much of what we had before we came here.

Please send me some strength. Our path is still long and I am not as sure footed as I once was.

F**K you feeding tube

By Jennifer Montgomery — Feb 27, 2008 7:25pm

The feeding tube is in and she had her first feed last night. UUUGGGG!!! It was a terrible experience for Logan…she hated it! It was a terrible experience for me. I hated it.

I don’t think ever in my entire life I have heard a kid scream like she did while they were putting in that tube. She freaked. She was hyperventilating, shaking and as red as the ripest tomato on the vine. I swear at some points during the process she wasn’t even breathing. I am not sure how she got through it, but she did. Thank God.

When it was all done, and finally inserted properly (don’t want to feed her lung) Loggie wiped away her tears and apologized to the nurse for screaming so loud into her face. The nurse smiled and Loggie rubbed her hand and told her not to feel bad, that she did a good job.

FRICK!!!! We all cried.

The feeding is stressful and is going to be a big job!~ Right now it is taking us about 30 minutes to prepare for each feed. We need to start getting by getting a sample from her tube. We use a syringe to withdraw stomach acid and we test that stomach fluid for the proper PH levels on a small multi-colored strip. This is to make sure the tube is still in the proper place and hasn’t made its way into an organ other than her stomach. After we are sure everything looks right, we have to syringe the stomach acid back into her belly through the tube. So YUCKY.

Once those steps are complete, it’s time to eat- for her, not us. I am pretty sure we won’t have much of an appetite after that grossness.

At night, the liquid nutrition will be put into bag and we will use a pump similar to an IV so it can be released slowly. These feeds take about 4 hours from start to finish. Once the pump beeps we have to flush her line to make sure it is clean. If all goes well we will aim for 2 feeds a night and 3 feeds a day. Twelve to fourteen hours of feeding, pumping, and very little sleep leaves us feeling a bit like the parents of a new born baby.

We will also be taught how to give bolus of nutrition through out the day…meaning if she is not getting enough through the night than we can basically give her a quick shot of nutrition rather than a full 4 hour feed. She was 64 lbs today so down a bit again.

Hopefully in addition to the tube feeds she will be able to start eating and we can use this process more as a supplement than her total nutrition plan.

A decision was also firmed up today about treatment. Radiation will begin on Monday.

Full brain and spine is the only option. We are very saddened by this.

Today doctors confirmed that the new spot is definitely new tumor since surgery at the top of her spine they also told us tumor is in her spinal cord fluid. Not good.

Radiation will be given over 31 cycles or just over 6 weeks. She will receive a boost in addition to the basic dose to the back of her head where most of the tumors are. After radiation, we are going to give her a 4 to 6 week break to let her bone marrow recover before we start Chemotherapy. The chemotherapy regimen will consist of a cocktail of cisplatin and etoposide. It will take about a year to complete the entire protocol if she can tolerate it.

I guess this is what ‘bringing in the big guns’ looks like in the brain cancer world.

Our doctors have very little information to go on.Dr. Hukin who is our oncologist and is the head of the neuro-oncology department told us in our meeting today that in the 10 years she has been working at Children’s she has only ever had one case with a similar pathology and such much wide disease. I couldn’t help but ask, and no, that child did not survive. The thing about Logan’s tumor is that the pathology says it should be a fairly low grade tumor, however, it is not behaving as a low grade tumor would. It is metastasizing and seems to be spreading quickly. The samples from surgery we have are small because the tumor is in such a difficult mostly inoperable spot. So this is all we can go on. The final report says the tumor is a mixed glioma. We are treating it as it is behaving, high grade.

This a new approach. Usually low grade tumors don’t respond to this type of treatment. But the thought is because of the extent of Logan’s disease and how quickly new spots seem to be popping up we need to think outside of the box and respond to its behaviour and not its pathology.

We trust Logan’s doctors and we agree with the treatment approach. This is the chemotherapy I researched and presented. I hoped we could only do chemotherapy but we have been advised that a combined approach at the point is best. Having to make this decision has been extremely difficult, and one that we hoped we’d never have to make. Talk of radiation has always been on the table since her diagnosis 3 years ago. However I have never felt good about it. Internally, even though I know it has come down to this, I struggle deeply with the choice to subjecting her growing brain and spine to radiation. I am afraid of who she will be after this treatment, I am afraid of the irreversible side effects and the damage that will occur.

But I have to let it go. There truly is no choice so all I can do now is hope that Logan will be OK. That this will save her life and that the side effects will be minimal. I have to accept what will come next- and I am working on that.

Logan is happy that we made the decision to start radiation before chemotherapy and that she will get a break in between. For Christmas, our dear friends (family really) Reid and Diane graciously gave us a trip to Maui. The plan will be to go at the end of April when radiation completes. If the dates line up and Logan tolerates the treatment well she should just be finished radiation 10 days before we leave. She not start chemo for a month after that.

PERFECT timing and something to look forward to and work towards- Sunshine, beach time, relaxing and drinking cocktails out of pineapples seems like a good dream to focus on right about now.

Life- All over the map

A family journey through childhood cancer and around the world