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.

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!

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!)

18 radiation treatments down- 13 left to go.

We are officially on the countdown to the end- and then the beginning.

Our oncologist gave us a start date today for Logan’s chemotherapy. June 8th. Exactly 2 months from today.

 Five weeks after she finishes radiation. We will be going a head with the regimen from the study I found out of Italy. We won’t be participating in the study, but we will be using the same dosage.

The main drug is Cisplatin.  It is a fairly ‘kick ass’ chemo but unfortunately we have heard it also kicks the ass of the patient receiving it.

We have a few tests we will need to do before we can begin this next step of treatment. Loggie will have an MRI to make sure the tumor has not progressed any further during radiation (our hope would be to see shrinkage) but as Dr. Hukin explained we might not be able to determine much. Apparently right after radiation is a hard time to distinguish tumor growth from swollen tissue.

I assume the MRI will serve more as a starting point for chemo, and they just want to make sure the tumors aren’t obviously bigger, because then there would really be no point in making Loggie sicker with the kick ass chemo.

She also needs a GFR (kidney function test) and an audiology test to measure where her hearing is after radiation and before chemo.

Cranial Spinal radiation can cause damage to hearing and unfortunately one of cisplatin’s main side effects is hearing loss. They tell us that some hearing loss is going to inevitable. Our hope is that it will only be minor.

Loggie continues to be very tired, and the redness and swelling in the back of her head is getting worse as the treatments continue although her complaints are minimal. I can tell she is frustrated and exhausted and usually by the end of the day she is very cranky.

Maui is only 2.5 weeks away and we really feel like we need this vacation.

At our meeting today we talked about getting ready for the trip. Our oncologist is not thrilled with us taking Logan out of the country so quickly after radiation but understands our desire to escape for a little while before chemo starts.

Today she told us there may never be a good time to go, so we had to take our opportunities. She said they will  load us up with narcotics, teach me how to give IV fluids if she ends up needing them and we will make sure to top her up with blood before she goes. God forbid something happens over there (we are totally uninsured) I am to call, give her a shot of whatever drug they advise and get her on the first plane home.

Listening to Dr. Hukin talking I couldn’t help but think ceasing the moment is really kind of scary.

Diane was a nurse at one time, and I know that traveling with her will give us comfort. She will be helpful and although I am apprehensive about going I am sure everything will be fine.

 In Logan’s words “The way I see it, I am going to be sick either way. I can either lay around at home on the couch for the next couple of weeks or I can go and lay under a palm tree on the beach. What would you choose?”

Good point- I love that kid. She has such an incredible ability to be optimistic.

 Before I sign off I just want to remind you about BALDING FOR DOLLARS. You can find the home page by googling it or by visiting the link on Loggies webpage. If you are BRAVE ENOUGH TO SHAVE you can join or team or support Loggie by entering her name under the sponsor a participant “Logan Johnson-Lay” or to join the team it is “logan is our angel”

Our team is amazing and we’ve already raised about $4000.00

Balding for dollars is such a great organization and we want to give back in any way we can.

They provide basic necessities such as food, clothing and shelter as well as help pay for medications for oncology families. They also coordinate events for the kids and siblings, such as camps, sailing trips, sleepovers…the list of things they do goes on and on. Without balding we would really struggle to pay for Logan’s feeding tube supplies and nutrition. We appreciate all they do and are honored to be able to give back.

Logan went on air today to support the event. On Saturday her commercial will be played all day on  JACK FM.

She did a great job!!!

“Don’t forget bald is beautiful”  she said in her quiet cute little voice. 

The foundation loved it and are now thinking of printing Logan’s slogan on hats that they will sell or give to the girls who shave their heads. 

I LOVE IT. I am proud of her. I wish I was brave enough to shave!!!! (but I’m not)