A new month in Maui

ALOHA
Hooray, Hooray its the 1st of May!

And we are still in paradise, (and never want to leave here)

Once again I sit here in complete contentment listening to the waves crash on the shoreline that is about 6 meters from the balcony where we sit.

This place is stunning…beautiful hardwood floors, huge windows that open out to the warm air, a gourmet kitchen…marble and granite…views that would knock your socks off…it is gorgeous!

And to top it off we are here with the most amazing people ever…We are having a great time.

Logan is having her ups and downs but overall she is eating MUCH better. She is good at knowing her own pace. She eats slow and takes breaks.

She is can only handle staying in the sun for a short time and then comes in to seek shade, well that and so her and Auntie Diane can kick Reid and Jared’s ass in sequence. Sequence is a great game and it is is going to be a new addiction in our house and the clinic. It has provided hours of entertainment on this trip.

Logan went boogie boarding with me yesterday. Who knows what her counts are- who cares.

The swells were huge and after she got over the worry of sharks eating her we headed out.


It was a blast! We laughed so hard, and we got pummeled by so many waves that both of us had so much sand in our WOOHOO’s. We had to strip out of our bathing suits off in the ocean and rinse them out.  It was fun. So much fun. Fun like we haven’t had in a very long time and although I knew it probably wasn’t the smartest thing (one week post radiation- low platelets) I didn’t let the worry consume because the fun was worth any risk that we had to take.

Belly laughter- the kind of can’t catch your breathe laughter doesn’t happen much around our house anymore but yesterday Loggie and I laughed so hard that our stomachs hurt.  She was so weak from laughing that as the waves continued to crash her into the sand and she couldn’t stand up she just laughed even more.

Seeing her happy, alive and here, was worth every worry- every crappy radiation treatment, all the sleepless nights, surgery and medication it took to get here.

Brody has also tried to boogie board, and loves the ocean. He is content, not ‘bratty’ as we call him at home and relaxed.

Jared and Reid have taken to afternoon football on the beach- cold coronas close by.

Auntie Diane is keeping us all well fed (love her) by puttering in the kitchen and making trips to the local fresh market to get ingredients for all her amazing meals. Me, I loving laying in the sun reading my book. I wish these days would never end.

We are off to the Aquarium in a few hours and then on to pick up Chris at the airport. Logan chose the aquarium as the one thing she wanted to do on this trip and she is thrilled to be going.

It will be another great day in paradise.

I introduced the crew to mojitos yesterday…(a hit!) So we have a new drink. Things couldn’t be better.

We are so very aware that this trip is a gift and we are trying our best to seize every moment. It almost feels a bit like borrowed time- we know and appreciate that we could NOT have been able to do this. We know that so many people worked really hard to make this come together for us and we want you to know we are not taking any of it for granted.

Thank you.

We so needed this.

I am trying so hard to take in every moment, to smell every smell, to feel the warm breeze and to etch this carefree feeling into my mind so I can remember and strength from it when we get home and the year of chemo starts.

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Aloha!

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ALOHA!

I write to you all today from the beautiful, tropical, paradise that we are in.

WE MADE IT!!!

It is absolutely stunning here and as I type these words to you I can hear the waves crashing on shore and the view I have is ocean and palm trees for as far as I can see. We are staying at the Sands of Kahana. Perfect Location, bottom floor- corner unit. PERFECT!

It is very surreal to be here.

I have had to pinch myself more than a few times.

After the last few months of hell it seems impossible that I am sitting here right now in Maui looking out at the beach writing this to you. Maui is beautiful. Everything is very lush and green. The water is very clear for being the Pacific Ocean and already we are easing into the pace of island life.

Loggie is much better here than she was home. She still isn’t feeling perfect but she is loving the warm healing weather. She is taking it very slow and doing a lot of relaxing. Yesterday was the first day she attempted to come down to the beach, and although she didn’t last long she loved lying in the warm sand and having the sun on her face. 

She is taking the time she needs adjust and recuperate. It makes me happy to see her getting stronger each day. Right now, as I type, she is just getting ready to go for a walk to the market with Auntie Diane.

Shopping – always makes her feel better.
Jared and Reid are golfing and I am happy and content to be sitting here quietly  with my boy enjoying the beautiful surroundings.

Life- is all over the map. But today it is pretty darn good.

I have had to start the feeding tube again for Loggie since we have been here. Her appetite is still not great but the new drugs she is on seemed to have eased the headaches. Dexamethazone has proved to be the ticket to eliminating most of the other symptoms she was experiencing so I think we can safely assume there was some tumor pressure or inflammation.

There is so much I want to do with her and I’d love to get out and explore the island but I have to keep in mind that she is only 3 days post radiation.

THREE DAYS….so much can change in three days….it is amazing that we are here but she is obviously still feeling the effects of the treatment and I have to give her time.

The skin on and inside her ears is blistering and bleeding and her head is quite sore and tender to the touch, not fun trying to put a sun hat on her.

I have a tiny inclination of how she might be feeling as I got fried on my bald head and on the top of my ears yesterday. Oh Ya no hair to protect. I did wear 30 sunscreen and a hat for most of the day but the weather is very deceiving here. The trade winds are always blowing and you can’t feel the heat. It is humid and beautiful.

Reid and Diane have been the most incredible hosts so far. Diane has prepared beautiful meals and have made us feel very comfortable, welcomed and content. I am glad to be with them and on this holiday

I was so worried about coming here and that we are here, there are very few worries in our world. Cancer, although it is lurking in the background it feels inexplicably far away.

The regimen of drugs, injections and feeds doesn’t seem to be nearly stressful as they are at home. Must be the blue Hawaiian blender drinks Uncle Reid is whipping up from his book of tropical drinks.

Another thing to be grateful for, people who help you with your children and feed you booze.

Speaking of stressful, I want to share a little story about that happened on our way here. Logan started vomiting after she got her blood at the hospital on our way to the hospital. She started crying that she had pain in her stomach and didn’t feel well.

OH great. We turned around and took her back to the hospital- the verdict was constipation- so we gave her a laxative and made our way to the terminal. (We also fought about who got to sit with her on the plane)

We cleared customs with no problems or questions about our medication/needles/or liquids we had on hand. No one asked to see our letter from the hospital, and we assumed that the wheel chair and the bald kid helped with the expedited process.

I asked Jared if he thought the custom officer was confused about what one of us had cancer. Now that we are all bald maybe people think we are all sick. Jared laughed. “Honey, if anything we look like skin heads, if it wasn’t for the lime green color of Logan skin and the feeding tube, we probably would have been strip searched.”

Stupid me. I looked around- people were staring.

Just as we lined up to board to the plane a man walked up to me. We made awkward eye contact. “How do I know you” I asked

“Dr. Prevost” he replied, “Pediatric oncologist” He seemed surprised I forgot who he was.

“I have treated your daughter Logan a few times”

“Oh GOD YES!!!” I replied feeling like a total asshole and likely the worst mother on the planet. I was surprised he recognized me with my new look- although I guess he’s used to bald.

“I do remember you now” I said, “but I don’t see you often at the clinic anymore”

He explained that he had moved to the Surrey pediatric oncology clinic and only worked at Children’s when necessary.

He asked how Logan was. I explained her situation and told him she just finished radiation days before.

“Where are you headed?” he probed.

I shared with him the details of the Maui trip and conflict whether to be taking this trip with Logan’s uncertain condition. I told him about the lack of medical coverage and Logan’s latest treatments, test results and symptoms.

He smiled. “Don’t worry one bit, I am on your flight to Maui” 

He gave his address and phone number and told me if we needed anything to call him. He could be at our condo in less than 30 minutes. He is also gave us the details of his return flight. We fly home together.

Apparently there is only 8 pediatric doctors on the island and he knows them all. He assured us that he would be able to get us help if we need and despite lack of medical insurance, we’d be stable enough to make it home.

NOW IF THAT IS NOT THE BIGGEST FRICKIN’ SIGN EVER THAT WE WE WERE MEANT TO TAKE THIS TRIP…I DON’T KNOW WHAT IS!!!!

We arrived safely, the flight was comfortable and Logan slept the whole way. We dropped our bags, looked at the clock on the wall, and the time said 11:11.

It is going to be a great trip.

 

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Radiation complete- Bald is beautiful!

Loggies camera March 2nd 2008 422Loggies camera March 2nd 2008 108

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What an incredible day! and a roller coaster of a week. RADIATION IS DONE!!!!!

We have had so many ups and downs that it is hard to explain my emotion or remember all of the moments of impact.

All I know is that we made it though the week. It is Saturday night, I spent an amazing day with all my friends and my amazing family and despite everything we have been through the last couple of months I am happy and content.

For what ever reason, we are no longer feeling stressed about Hawaii, we are all excited. We can’t wait to see Reid and Diane and I especially can’t wait to take a break with my kids and my husband having some fun.

Loggie is doing remarkably well, thanks to all her ‘top ups’ today she shaved about 20 heads at balding for dollars.

Mine being one of them.

Yes I did it, I am bald!!!!

And with being bald comes the release of every bit of vanity I have. I have a weird head.

I am happy I did it. I never had any intention to do it.  I went up to the stage to ask a question and all of the sudden every started cheering. I knew I had to shave my head, plus Loggie looked at me with her little grin and pointed to the chair. I had no way out.

It was emotional and I was nervous. It is only hair, yes but shaving it off represents so much more than that. I know that it doesn’t matter what I look like, that everyone still loves me (although Brody is a bit freaked out) but this was about making Logan proud of me.  Showing her I could walk the walk and not just talk the talk.

So I let go every bit ego I had today, and now I am officially bald and so is Jared and so is Brody.  Oh the money we are going to save on shampoo!

Cancer strips a family of everything they have anyhow. It leaves you naked. It leaves you vulnerable and so it doesn’t actually feel that much different without hair. I am used to feeling like I’ve lost something. Now I just don’t have anything to hide behind, well at least for the next six months or so.

Loggie had tough week leading up to the weekend, but then something remarkable happened.

Its like in the last 24 hours she made up her mind.

It was time to feel good. Radiation is over, Maui here we come.

So she did a handstand in the swimming pool after getting a pedicure, shaved 20 heads, drank a bottle of pedia-lite and decided that she was ready to go on this holiday.

There are few moments in my life that I have felt more proud of my family and friends than I did today. The ones who shaved and the ones who came out and supported us through this last few months of hell.

Thank you.

Our flight leave at 6pm tomorrow night. HAWAII HERE WE COME!

 

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A plan to paradise

I am extremely exhausted but couldn’t bring myself to fall asleep until I sent out a message to you all.

Tomorrow marks the FINAL day of radiation treatment for Logan. This day comes not only with relief but also a small victory for her. So far, radiation is the only cancer treatment/protocol she has completed in the last 3 years since she was diagnosed. Every other treatment she started, she had to stop because the her tumor relapsing before she could finish.

So HOORAY Loggie!

SHE IS FINISHED radiation tomorrow!!!!! Thank goodness!

After our final treatment we will be off to see our oncologist for a slew of last minute tests to prepare us for our Maui trip.

I have so much to share will you all, it has been a really rough week but in the last 24 hours we have had so much amazing support coming our way and I can’t wait to share all of the stories with you.

Tonight however I just  need to sleep. So desperately I need to rest, we all do.

We need our energy for tomorrow.  Tomorrow we a make plan to get to paradise..

Hallejulah!

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No wine

 

NO wine for the mama!

We are in back in the hospital. We were admitted last night. After fighting the dreadful headache most of the day, medication stopped working and, the headache won.

We gave the maximum doses of pain medication recommended by the freaky pain doctors and it didn’t seem to touch her pain so we spent most the night in the ER being infused with morphine and waiting for a room on the ward.

We are all a bit groggy today.

She also spiked a fever of 38.8 so at about 10:30 Jay and I made the call to and were instructed she would be having a sleep over.

We have had the full work over- They have taken cultures, started antibiotics, and she has had a few pints of blood and some IV fluids.

Today her pain today is much better and her fever has come down- but still no wine for the mom.

I tried to convince the doctors to let us go home but it was a no go. We did however negotiate a ‘pass’. Basically it is like being moved into a half way house. We are allowed out on a day trip- well a dinner trip but then we need to come back and sleep here. Fair enough. Day pass it is. We will take what we can get.

She will get an antibiotic infusion every 6 hours until her cultures come back- likely 48 hours form now. A fever could indicate bacterial infection which is risky in a kid with no immune system so doctors always take precautions but trust me her cultures will be negative.

She has a stuffy nose, she has something viral- don’t they know I am a doctor too now?

 The headaches and the numbness in her legs, and the ‘I can’t see’ ya that is worry some but a little fever, and stuffy nose, well that is just normal kid stuff.

We got shitty news today. We are re-starting the angry steroid med. Dexemethazone infusions began this afternoon. The hope is that the Dex will again bring any swelling down if there is any around the tumors from radiation that may be causing pressure. We hate this drug and this plan but we don’t have any other options.

Still no word on the MRI, but my guess is that they will try this medication first. They have pushed the MRI for so long now and we almost done radiation, it would be a shame not to wait (or at least I am imagining them saying this)

Her blood work indicated that her counts were so extremely low, so now we need to come up with another plan to get them up so we can get to Maui.

I will learn how to give fluids through the IV. They will give us a bag of narcotics for pain to take with us. We will start GCSF shots to try to stimulate her bone marrow and give her a few white blood cells. And we are going to get blood as many times as we can before we go.  We will likely pop in on Sunday morning for one last top up before we fly out.

I am a bit freaked (o.k. alot freaked out) but being the momcologist means you’ve got to wear a lot of hats. Nurse is just one of them. I can do this.

And our doctors are being encouraging. They too think I can do this. They think we should go on this trip. They aren’t thrilled that we have no medical coverage but reminded us why we are doing all of this treatment…..

To live.

“Go live” they said. 

What they didn’t add is “in case you don’t get the chance.”

But it is OK. They didn’t have to say it. We know it. It is why we take these trips. No regrets.

In the meantime, we have the luxury of to stay at this ‘hotel’ until Thursday. I think I will call for some room service. (and still no wine!)

 

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Six days to Maui

 

FINALLY!!!! TODAY marks the beginning of the last week of radiation- or so we thought.

 It is not off to a great start and we can’t wait for this bloody treatment to be over.

Loggie has had a crappy weekend and despite the good preliminary results from the bone scan, her pain is not getting any better, it is getting worse.

Today, the radiation tech’s couldn’t get her lined up. They couldn’t get her spine straight.

They took some x-rays and then called me in to ask a few questions about her pain. It is clear on the x-ray that where her pain is, her spine is veering to the left with a curve.

I asked point blank if they thought the spine actually looked curved or if they thought there was tumor on the spine.

“I don’t know” they responded. They called the doctor. Unfortunately Dr.Goddard wasn’t available so it was a different oncologist who came to weigh in. He had no answers so the tech cancelled Logan’s treatment until she can discuss with Dr. Goddard about getting an MRI.

Just as we were about to leave the cancer agency when suddenly Logan’s legs again went numb and she couldn’t walk. This time it lasted almost 5 minutes.

The tech stayed with us just to be sure we were alright. When Logan felt she was strong enough we got up and started to make our way to the elevator. All of the sudden she collapsed. Luckily,there was a stretcher in the hall of the clinic and we laid her down.

“I can’t see” she screamed

“What????” I started screaming as well. The tech came running

“I can’t see” Logan said and she had a few tears in her eyes. “I can hear you but I can’t see anything.”

I started shaking, another tech came and wrapped both Logan an I in warm blankets.

We laid on the stretcher for a few more minutes and it suddenly Logan told us she could start to see blurry images again.

FUCK that was scary.

“Sorry for freaking out” I said to Loggie, “you really scared me” I felt so bad for my reaction.

“Scared you?” she replied rather calm and collected considering what had just happened. “Try going blind- It is freaky.”

We got in the car and immediately drove to Children’s. Brenda (our nurse) calmed us down and ordered blood work. Our oncologist wasn’t available so we were checked out by a resident we’ve never met and sent home. We go back tomorrow.

By the time we got home Logan had developed another terrible headache. Another call to the hospital and 45mg of codeine later her pain is under control. She is sitting beside me as I type with  a hot cloth on her head. All these symptoms are getting worse it seem, she has at least one bad headache every day now.

Again all  I want is a glass of damn wine. However we are on high alert. After what happened at the agency today if we can’t get the pain under control in the next 2 hours we have to bring to stay the night at the hospital. They will transport her to radiation form there in the morning if need be

Sometimes I wonder if it would just be better to be admitted, all this back and forth is really difficult. We live about an hour and a half from the hospital, no trips in are quick trips. 

 

UGGG! I am so stressed out today.

I could hardly breath after I got home today. The ‘I can’t see’ episode and the inability to do radiation today has increased my anxiety by a zillion percent.  

On a positive note my house is now spotless. STRESS + ANXIETY in JENNY= CLEAN HOUSE.

Maui is also only 6 days away!!! And Loggie assures me she is going to pull through- I can’t see how. Most people getting ready to go on a trip like this would be super excited, packing, planning. Me I am just sitting here paralyzed with worry. I can’t even believe we are actually planning on going.

I don’t want to take it way from her. The hope of this trip is the only reason she is coping at this point. She has something looking forward to- to work towards. But 6 days away, we still have 5 days of radiation and today she couldn’t see—–I just can’t picture us making it.

Loggie keeps telling me to close my eyes and picture the sand and the palm tree’s and feel the sun on my face. She says that is what she does every time she is in the radiation tube bolted down with her head in her cast.

I can’t… just thinking of it all….I cry.

So instead I try to be funny. I have a sick sense of humor, so I told her that her visualization must be working because every time she comes out of the machine she is a little bit more sun burned.

She doesn’t think it is as funny as I do.

What is funny though, is Brody. My patience with him has been very limited lately and last night was the final straw. He wouldn’t eat dinner. I sent him to his room. After a few moments he came down stairs and I asked him if he’d like to talk about his behavior. I started to tell him that he was not being a very good boy and that I was angry and frustrated with him. I told him he was grounded from guitar hero (which he loves) and asked him if there was anything he wanted for himself.

I thought he was going to say he was sorry.

Instead he replied ” I welcome to hear what you have to say about me”

WHAT???? Both Jared and I nearly fell off our chairs!

What a lesson. Imagine if every time someone was unhappy with us we responded with “I welcome to hear what you say about me” instead responding in anger.

How profound our little Brody is.

I wonder where on earth he came up with that? God only knows Jared and I don’t communicate that effectively….we use a lot more four letter words.

So I pose the question If you ask for courage to continue on do you think God just hands over courage?

No- he doesn’t but I think he presents the opportunity to be courageous. Kind of in the same sort of way that Brody says “I welcome to hear to what you have to say about me”

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NO CANCER IN THE BONES

I know so many of you have been anxiously waiting to hear how the bone scan went yesterday.

Today we got preliminary results.

NO CANCER IN THE BONES!!!!

or at least nothing overly obvious that is lighting up. Which is good.

The doctor told not to get excited quite yet that she would have to read and compare the scan to her other x rays but she is optimistic.

WE WILL TAKE IT!

She did say that because this only looks at the bone she recommends we look at the soft tissue again on another MRI. It kind of scared me- but heck, we already know she has cancer in the soft tissue. We will take our victory- NO CANCER IN THE BONES- thank you very much!!

 We left and met with our radiation oncologist who obviously got the call on the bone scan and suggested the same thing about the MRI. So, maybe there isn’t any cancer in the vertebrae of her spine but we can’t rule out the possibility of cancer in the spinal tissue or fluid.

I guess now we wait and see if they do an MRI or not.

Wait and see…..always wait and see.

Logan’s legs went numb again today, which didn’t allow us to be excited about the bone scan results for long. She is also feeling well still. Her fever is hovering around 38 so we got to go home. If her temperature goes up by half a degree though, we are back in.

Our holiday is coming up soon, and Logan thinks it is kind of funny how she always ends up in hospital before we go on vacation out of the country. She clearly doesn’t understand insurance- but I guess there isn’t really much to understand. We don’t have any. Period.

She told her oncologist everything needs to be taken care of  before she “heads out” to Maui. She is really looking forward to this trop.

Today, was long and emotional.

It was one hell of a roller coaster ride of fear and relief and then fear again. Stress is so hard on the body and I can literally feel the tension running through my veins. The rushes of adrenaline leave you exhausted and all I want to do is climb into a warm bath, pour a LARGE glass of wine and just relax…

However I can’t, have wine. I am waiting to see if we end up at the “Hilton” tonight and no one appreciates a drunk oncology mom at the hospital.

Damn.

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Living on the edge

My day started early today with a ringing phone. It was Children’s hospital. Between our oncologist and the radiation oncologist it has been decided that a bone scan is indeed needed. Apparently they are both concerned and they don’t want to wait to have it done. They made an appointment for tomorrow.

Needless to say, I spent most of today trying not to think about tomorrow.

In the cancer world any day that you are destined to get news (good or bad) is a nightmare day.

The mind can be a terrible thing and the worry and fear that controls your mind can almost make you crazy. Or at least that is how I am feeling tonight. Crazy.

As I sit here sipping my wine, I am thinking of the serenity prayer- ironic…..isn’t it an AA thing?

“God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference”

In theory it is such a powerful affirmation. In theory, if one could put it to practice life would be quite freeing but in reality this prayer seems almost impossible to me.

The “accept” part is especially tough. How do you accept this? I simply can’t

 Log had her dose of radiation today, we swung by our friend Simone’s house to pick up some soup and then raced home just in time to get in a big fight with the owner of the development we live in. It was kind of perfect for me- I got to be angry for good reason.

Our home is sinking and we are living in a swamp right now. We  have some serious drainage issues and the water running off from the land above us is insane. We have been back and forth with the developers trying to find a solution.

Today, Jeff, one of the owners of Portrait Homes (our builder) decided to pay me a visit. He surveyed the damage and then very smugly told me that if I wanted a use able flat 10,000 square foot lot than maybe I should have bought a house in Surrey instead of here in Silver ridge.

Douche bag!

He had no idea what was about to come next. My nerves are already shot so his comment pushed me right over the edge.

My whole body started to tremble and out of no where I had a total Ally McBeal moment. You know the kind of moment you can imagine yourself doing something really really bad? Yep that was it.

I literally stood in one spot shaking, but saw myself coming across the lawn in pure madness, claws clenched and mouth frothing about to shit kick Jeff. And I actually felt like in that moment I could take him.

Suddenly I was pulled back to reality. “Did you hear me, there is not much we are going to be able to do about this….”   and suddenly I was totally calm and rational.

“Don’t let him take my energy, Don’t give it to him Jenny….IF you do you won’t pull yourself out of this….” It was like I had an angel and a devil on either shoulder.

I couldn’t stand Jeff, he was an arrogant prick (to be kind) but his biggest problem of theday was freaking water issue in Lot 8.

Mine radiation and a bone scan to check for cancer on my 10 year old daughter.

We were in two different ball parks, on two completely different planets. There was no way our conversation was going anywhere. I had to walk away. My fight wasn’t done but I certainly wasn’t going to give Jeff the satisfaction of seeing me completely lose my shit.

 I walked inside my house, and I fell apart. I no longer have the tolerance or capacity to handle the things  I once did.

Things that were once so urgent and imperative, simply aren’t anymore. People I used to try so hard to impress aren’t even on my radar anymore. I want less conflict in my life and I can understand now what it means when people say “you need to take care of yourself”. Some times you have to walk away.

I made a speech at the fundraiser that was arranged for us this weekend. I felt weird, accepting people’s money and I didn’t really want my brother to put this event on. I felt guilty, like someone else could use it more than us or that we weren’t worthy of the attention.

I don’t know- I just felt too proud. I wasn’t humble enough to be able to accept the gifts that people were offering us.

And I learned something, being proud does nothing for you. It doesn’t make you better than anyone and it is as important to be able to accept as graciously as you give.

Very few people can do this.

People want to help in any way they can and I am really grateful for that.  The only ‘benefit’ that comes from having a sick child or being in our situation is being able to identify the gifts. And one of those gifts is the ability to learn how to let go of the stupid shit in life like the owner of portrait homes, who is mad because he did a poor job with your yard and you want him to fix it.

Small stuff.

  The big stuff is chicken noodle soup on the way home from radiation, the phone calls just to ‘check in’, the days taken off work to babysit your son, the people who shave their heads, book you holiday, write you a song, organize an event for you, drag you out on a walk outside.

Yes those are the ones that matter.

The ones that make you feel good.

The ones that make you forget the hell you are living 99% of the time.

The rest, it just doesn’t matter. What people think or the useless, unnecessary, thoughts we think we are all too hard on ourselves.

We are all doing the best we can with what we have.

‘If you knew better, you would do better?’ Seems like a small question, but today I answered yes.

On that note, back to hell. Logan has spiked a fever and we have called the oncologist. The bad news, we are off for a sleep over and our favorite suite is already booked on 2B. The good news, at least we won’t have to fight traffic all the way to radiation and the bone scan tomorrow morning.

 

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15 minutes

April 15th.

The fundraiser in Edmonton was incredible. The whole evening was full positive energy and support for our family and I want to personally thank all of you who came out to show your love!

I was so grateful for brother and his great group of friends for organizing this event for us.

The bands that played were both fantastic. James Reid (a childhood friend) began the night by playing “lean on me” Loggies favorite song and ending with a song that he wrote for our family called 15minutes.

Unbelievable.

  The song was so spot on and I couldn’t for the life of me, imagine how he could  possibly understand what we are going through and articulate it so perfectly. As I listened to his song, I cried. He is a great musician but he is going to make an incredible doctor if he understands his patients on this level.

Friends of Otis also amazing. Great music and equally as awesome guys. I felt so blessed to meet them all and honored they would come out and do this concert for us.

The whole night was filled with surprises. People I haven’t seen in years  and didn’t even know lived in Edmonton came out. It was filled  people I never met, but are part of this group. I was in awe  thinking how one little girl and her situation has connected so many people. I had no idea.

We flew home Sunday and our hearts (and pockets- thank you) were full. Logan was in the midst of  a really bad headache and Grandma and Auntie Betty looked frazzled.

So first thing the next morning we headed to Children’s  to have Logan checked out. Dr.Hukin is most concerned about her spine. It is now quite sore even to the touch and the tingling in her legs has progressed to her feet every time she stands up.

An X-ray was ordered and it showed a small change in her C3 vertebrate. They compared the Xray to the previous MRI and there agreed there is some small change but decided not to jump to conclusions because comparing these two types of images are like comparing apples to oranges.

They still don’t want to do an MRI until the end of radiation and because this seems new change seems to be in the bone and not soft tissue they are thinking bone scan.

We also had a ESR test to determine Logan’s inflammation levels. Normal is between 0-20 and Logan’s results came back a 24, or slightly elevated. We have never had that test before so I am not sure exactly if that is ok- or bad.

We asked if increase in ESR levels was from radiation. The told us probably not. It makes no sense to me.

So no answers until after the bone scan I guess.

And I am losing my shit.

 I am taking some comfort in the fact that apparently it is highly unlikely this is tumor in her bones.  However it is possible, and if it is a tumor then it would definitely not be the same type of tumor she already has because her tumor grows in soft tissue not bone. If it is tumor, it is a new tumor and we are basically fucked.

So highly unlikely is what I am going with.

After all they are the doctors which means they are probably right, right?

However highly unlikely has never been a good term for us. In fact highly unlikely always seem to indicate the opposite for Logan.

It has always been highly unlikely that Logan’s somewhat low grade tumor would progress this quickly

 but it has.

It is highly unlikely that it would spread from the brain stem to the rest of her brain

but it has.

it is highly unlikely that it would ever spread to the spine

but it has and now we see another new tumor on the last MRI.

Highly unlikely worries me because it usually means….very likely.

Worry doesn’t help. I know. I get it. I need to be positive. But being positive until we get the results of the bone scan- well that is highly unlikely.

Loggies counts are also dropping. No white blood cells once again ANC.7 and plateletts are 70. Which for cancer people isn’t too bad but last week her ANC was 4.5 and her plateletts were over 300. So the radiation is now taking its effect on her marrow.

Funny enough her hemoglobin is still alright. No blood today, but likely by the end of the week. We will do blood work again on Thursday and see if she needs a top up. The effects of the radiation are about 2 weeks behind (so different then chemo) so we are really only seeing the effect of  her treatments from April 1st.

It is such a roller coaster. One minute flying up the tracks in the right direction and the next minute you are totally upside down with fear.

 It is crazy and all you can do is buckle up and go for the ride. We trying not to look to much behind us or too much in front of us. We need to save our energy, and we need to continue riding the roller coaster. There is refund and we can’t get off yet.

In the words from James song-

“we will get through this as a family, that we will get through this eventually, and in 15 more minutes my whole life could change, and in 15 more minutes it’s all been rearranged but I can’t hold on if you let go………..”

We won’t let go.

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An oil change and a therapy session

 

This morning on our way to radiation it hit me. We had 11 treatments left, and today was the 11th of April.

Another 11:11 and I was grateful for the good sign.

This week has been tough at times. The swelling around Logan’s mega boost is very red and sore to the touch, and she is developing some back pain. At first I wasn’t too worried about it but I mentioned it to our nurse just to find out if I could something stronger than Advil for the pain.

Later that evening our oncologist called me from home. She has NEVER done that before, so now I am nervous.

She asked a series of questions. Is Logan getting any fevers? How is her balance? Headaches? numbness in her hands or feet? is the pain worse at night?

Most of my answers were initially no, but then the more I thought about them they turned to ‘I don’t know’. She has had a couple of headaches recently and she has been complaining about numbness in her legs and feet when she stands up. No fevers but her balance hasn’t been that good in such a long time I couldn’t answer whether it was better or worse. Probably just the same.

I asked Dr. Hukin if she was concerned. (knowing full well that a 8pm phone call from her meant that she was)

“Well…I think it would be a good thing for you to come in to see me on Monday. The clinic is closed tomorrow so I think you should see Dr. Goddard at the cancer agency tomorrow. I will call first thing in the morning to make sure that happens. If she develops a fever tonight, bring her into the ER”

There was silence.

I knew I had to ask the obvious question. “Are you concerned because you think it may be possible that more tumor has spread further into her spine?”

There was silence.

“It is possible” she said, “but lets say it is unlikely”.

“hasn’t everything so far been unlikely with Loggie” I asked.

There was silence.

“Have Dr. Goddard see her tomorrow. If you have any more concerns over the weekend, bring her in, if not than I will see you on Monday.”

“Couldn’t it be swelling from the radiation???” I asked.

“Highly unlikely” was her reply.

The conversation ended with her telling me to “Try not to worry too much about it and have a good weekend”

Shit.

Dr. Goddard didn’t say much.

“Hmmmmm. I am so soooorrryyy she is having pain. Maybe it is only because of how you have to lay in your immobilization each day. ” 

Pause, awkward stare.

“I think you should see Dr. Hukin on Monday. I am very sorry.”

So I feel like my nerves are shot. Monday feels so far away and I know they drill. Monday won’t bring any answers either.Without an MRI it is pretty much a guessing game, and unless they are certain things are taking a turn for the worse they are going to be very hesitant to order another MRI at this point during radiation. Remember- ‘dog’s breakfast?’

 Usually my gut instinct is pretty good. I think this is something muscular, and I have been been pretty good predicting in the past but now I don’t know for sure. I am questioning myself. Why are her legs are going numb?

My mind drives me crazy. Worry is not helpful.

So I am going to shift to some of the positive things that have happened in the last couple of days with you.

Yesterday we found another ladybug in our bathtub. This time it was floating in the water, kicking like crazy and struggling to survive.

I couldn’t help but think of the irony, how our little symbol of hope was showing us that he too struggles sometimes to simply keep his head above water.

Logan scooped him up out of the water and gently placed it back outside-

Later in the day went to get an oil change in my car (my poor over driven car). I never feel like I have time for menial tasks so decided to go to one of those quick drive thru places. The man that served us was really polite and gracious.

Our conversation began by him pointing out that the oil in my car was very black and that the air filter was dirty. I explained to him that I hadn’t had time to have my car serviced because I had been driving to and from the Cancer agency for my daughter. Logan was in the car. I was kind of hoping to shut him up- and hoping he wouldn’t try to up sell me on any further maintenance.

Instead, he kindly asked what kind of cancer Logan had and then told me how sorry he was for my hard times. He told me his father also died of cancer and that  he believed medicine can only cure so much but then God must heal everything remaining. 

Pretty powerful stuff. We know there is such a difference between a cure and healing. Curing is physical, but even with a cure so many people are never truly healed.

I couldn’t help but ponder if it is possible to have one without the other.

The oil change man gave me a discount and told me that he would pray for my family. He then asked me to take care of my car. He said it was the vessel I needed to transport my family to the place I was hoping would cure my daughter.

I smiled 50 bucks to have my oil changed and a therapy session. Good deal. Customer for life.

 As we pulled out of bay he stopped us and handed me a CD. “Please” he said “take this and listen, it is very peaceful music.”

I drove away, thanked him for his service and then wondered to myself if he knew that what I meant. I was talking about his kindness not the oil change?

Then I laughed to myself, the wisdom he had- he knew exactly what I meant.

I drove home, thinking about how earlier it felt like such an inconvenience to get an oil change when in fact it was me really me that needed my filters changed. I like efficiency.  My car was now serviced and I had little reminder, healing is one thing, curing is another both need to happen for us, and they are going to, just at different times.

Jared and I are leaving in the morning to go to Edmonton for a fundraiser my brother and his friends have organized for us. I am feeling pretty darn grateful. It will help cover so many costs, medications, fun, and commuting to and from the hospital.

We are leaving Logan home and close to the hospital. Grandma and Auntie Betty are in charge and her dad Paul is coming to visit with her. She will be fine- it all will be.

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