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.

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!

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”

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.

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.