Tuesday, November 30, 2010

Hickman Line

Logan and Nurse Carolyn after surgery.  She keeps him smiling!
As I type this Logan is in recovery.  He has been in surgery having a Hickman line inserted into the vein by his heart.  This should come out of the right side of his chest and prevent him from having any more needles in the near future.  It will just look like two tubes sticking out.  The guy down the corridor showed me his and it's no big deal.  We were both a bit scared before he went down, but with Dad at his side, he made the journey.  Always the comic, all he could think about was that we couldn't have any breakfast!

Monday, November 29, 2010

Hospital Time

Hiya Everyone, Logan here.
Writing today from a hospital bed, with fluids being pumped in.
We arrived yesterday (Sunday afternoon) to a quiet ward.
With most people disappearing over the weekend and reappearing on Monday, making for a mad rush if you arrive then.
It was a rather painful Sunday, they blew out 2 veins trying to secure a lure line, which is basically where the needle goes in on side of the vein and then out the other side. Meaning they needed to stick 3 needles into my arm to secure a line to begin my chemo.
Thanks to these blow outs I had even more trouble when it came to taking blood, as they need to regularly, for as they tightened the tourniquet on my arm, my vein practically shot out of my arm, making drawing blood impossible. The other arm was out because of my new lure line, yet even more fun when they applied the tourniquet.

At the moment they're pumping in chemo, while i wait for lunch, I'm sooooooooo hungry.
That's all i have to say for now, so goodbye for now, enjoy your day, and stay healthy.

Saturday, November 27, 2010

photo's of our trip to the States

Taking in the sights - if you look carefully, the White House is in the background!

Dad and I at the space museum... WOW!

The Children's Inn - an amazing place to stay... luxury!!!

Wednesday, November 24, 2010

And so it begins..

Hey Logan watchers,
today logan began his treatment (although he would probably have preferred being on the lake!) Our day got started at 6am (that's in the morning for you teenagers!) with truckloads of fluids.  Apparently this toxic stuff is such heavy duty S### that it can make you go into kidney failure as the meany cancer cells collapse at a great rate of knots and clog them up! So between you and me (and the rest of the world) the boy has been peeing like a trouper! Anyhow, he had chemo at about 10am (a low dose to  get him used to it) and then at 11.30 came the fun lumber puncture... if you are an adrenaline junkie you should try this cause it's bloody scary!! Even had to bring in the backup (Daddy) for moral support. Then  guess what happened? My amazing boy got this equally amazing doctor who was so gentle that he only had a small amount of pain.  Spinal fluid is totally freaky to look at.  His was clear (apparently that's good!). They also inserted a couple of shots of chemo (of something I couldn't pronounce or spell).  That took us up to about 11.45 and as Logan would say... a totally uneventful day really. Then Logan took it all in his stride and spent the rest of the day sleeping.  He woke for his meals and then dozed again.  All in all, a great first day.

Tuesday, November 23, 2010

READ THIS!!!!!!!

If Logan were writing this he would say something interesting and exciting and still get his message across.  Maybe it is this that makes people want to help him... or his kind heart.. (I cant feel him saying SHUT UP MUM!).  Anyway... Whatever you believe in, you cannot underestimate the inate urge in people to help others...

Thanks to the lovely people who dumped a pile of wood in my garage to make a ramp with

Thanks to Andrew (the builder) who came and made the ramp on Saturday

Thanks to my fabulous friends at Knighton Normal School (the best in the country) who have been cooking us the most amazing meals so that we have at least one proper meal a day

Thanks to Paul who ripped all the walls out of the old laundry so that we could start building our new bathroom

Thanks to Greg and Phil who spent the day plumbing the room so that it will best suit Logan and his needs

Thanks to Ross and my brother Dean who spent an entire day at my house building bits on the new bathroom in preparation for the new wet room

Thanks to my sister Carolyn who has been coming down from Auckland for days at a time to attempt to keep me sane - an exercise that was doomed to fail!!!!!

And thanks to ALL of our lovely friends and family for ALL you have done... the cleaning, washing, cooking, baking, phone calls, texts, love, prayers and positive thinking means so much to us. Our faith in people has never been so strong...

To people who have been generous in other ways... thank you... words cannot express our gratitude...

Anyway, enough soppy stuff!!!! My men will be home shortly and I have got stuff to do!!! (Like I have been sitting on my butt for the last week).  Speak to ya soon!


He's nearly home...

Morning Logan watchers...
Logan and Evan are exiting duty free as I type this, then heading home.  I spoke with the oncologist yesterday (hey Dr J) who told me the following:

- called anaplastic large cell lymphoma
- a form of Non-hodgkins
- rare and aggressive
- systemic
- ALK+
- hits toddlers to teens
- stage IV - advanced
- approx 4mths chemo
- substantial reduction in tumour size within a week
- BFM regimen (name of chemo)

Logan will come home and then after a short rest, head straight to the hospital.  He will be on Ward 25 for about 3 or 4 days.  If you would like to visit, please text immediately beforehand.  This is new to us, and we are not sure what to expect.  Each person copes differently.  Love to you all for your prayers and support...


Sunday, November 21, 2010

A Fun Day

Hiya guys, Logan here!
Today we did in fact get into DC, it is an amazing place: Tall buildings, massive monuments, and a great atmosphere. Dad and I had a great day!

To start with we had a half hour ride on the metro, which is was rather confusing to get into, as the main entrances are large escalators. It took about 10 min and dad a trip down the escalators and back before we figured it out. They have elevators! But not in the obvious place right by the escalators, they were tucked away a 150 metres from the escalators. And  I say when these were elevators, i mean they were a box, just big enough for my chair and this is with us having lowered the long leg as I can bend my knee a bit more.

Well enough about the elevators, metro is actually quite a simple place to be, as long as you not at central, where we were headed. Getting on was simple, we waited in the station for 5 min before our chariot arrived, and other then the loud rattling it makes as it zooms along, it is quite a way to travel!

On arrival at metro central, the confusion started, we had to go down a lift, walk to another then find a third to get out, doing this in the dusk-ish lighting was great fun, but we managed, as we always do.

Out we stumbled into the light to the brisk morning of DC, cars zooming and people walking on their own private missions. At this point we were forced to consult the map, because the streets in DC are winding and we had no idea which direction we needed to travel in. But we solved the problem and off me walked/rolled to our destinations, starting with the washington monument. We made it down 12th street and found what we were looking for, the National Mall (the area all the smithsonions, the washington monument and government buildings occupy -for those who don't know). Of course the first thing that catches your eye is the washington monument, that huge obelisk (which belongs in Egypt I might add), that stands for all to see.
So we wandered towards it in a rather unrushed manner, we didn't even bother getting too close as it was on a rise and surrounded by people, but we got pictures, that is the important part.

Our next destination was the National Natural History Meuseum, a popular spot and a good choice in our day of fun. Since where we were when we headed for the museum was equal distance from the main entrance and the secondary door (still a major door) we thought we would head for the main entrance that was on the Mall side of the building, so we could look around as we walk. As we approched a sign pointed out that the museum we were heading towards was in fact the building we were looking for, we continued eagerly. unfortunately our bubble was popped when a sign at the STAIRS, points out that the wheel chair access was on the other side of the building, this wouldn't have been such a big issue if the building wasn't so HUGE. So we headed back in the direction we had just come from to reach the other side. As we passed the sign I noticed what it had failed to mention on the other side, "Access other side of building" (not the exact words of course, i fail to remember what the street was called), something that would have been useful on the OTHER SIDE!

Eventually we reached the enterance and it was amazing, although the effect was delayed slightly by the fact that we arrived on the floor below the main muesum, mostly filled with cafes and  gift shops. upon taking the lift however we were greeted by the famous African Bush Elephant, on display since 1959. Now I won't bore you all by describing each and every exibit, but they were magical. They had a T-Rex Skeleton,  massive whale skulls, extremely large crystals, a live butterfly house, and soo many more I couldn't name them all if i wanted to. But if you ever in the DC area, and have some free time, stop in, admission's free and there there is soo much to see.

The National Air and space Mueseum was our next destination, and we had no trouble locating or entering. Although security was fun, they scan your bags, and walk you through a metal detector like they have at the airport, although for some reason it didn't go off when my chair went through, strange really. But once again instant WOW factor, They have planes and rockets hanging over head, with lander modules and other interesting air flight crafts, and there was always more to see. Their were flight simulator, an air bus cockpit you can explore and IMAX theatres with all sorts of flying related movies showing (we were a bit short on time to explore these unfortunately), real sized rockets, REAL rockets and planes (no longer working of course). It was really intriguing to learn how our flight has evolved and all the mishaps and triumphs that came along with it. Again, get in to see it if you can, good fun for adults and kids.
After all this it was getting late, so home bound on the metro, with no confusion this time (we saw squirrels on the way there). It's been rest and food since then. And i must sign off now, thankyou for bearing with me as I blabbered about my day. It's bed time now, as we have an early morning tomorrow so we can catch our flights home. I'll try and leave a post in my stop over in San Fransisco.
But for now, goodnight, and enjoy your afternoon in New Zealand.

Saturday, November 20, 2010

No more tests - for now

Logan has had an MRI and a PET scan today to confirm the new diagnosis.  Apart from that it's been a quiet day.  We have had our final meeting with the doctors at NIH and we do not have to go back there unless something happens - which it won't.  We have nothing but good things to say about the NIH staff - very friendly, sympathetic, and helpful.
Dr Meikel (NIH) was to discuss Logans new treatment with Dr Jamieson (WDHB) soon after our final meeting so everything should be in place when we get home.

We are flying out of Dulles airport Sunday morning 8:15am(local) to San Francisco arriving there at 11:15am (local).  We don't get onto our flight home until 7:30pm (local) as this is the first flight with business class seats free. Not sure how we will fill the gap yet. We arrive in NZ 5:55amNZ Tuesday morning.

This gives us Saturday to ourselves.  The current plan is to catch the Metro into Washington DC to go to the Smithsonian museums and maybe see the White House. The weather is supposed to be good.


I have just received, by email, confirmation that Logan has ALK+ anaplastic large cell lymphoma.  This is apparently good news.  I am hoping that Evan and Logan will post another update as I have not spoken to them yet.  He will still need intensive treatment, but it will be different to the one planned for Ewings.  Also there are a variety of ways to treat this... just our luck.  I have been told by the hospital that this cancer is another rare one, but it does have a better outcome.  Trust Logan, always one to do things slightly different from others.

Thank you all for your love, support and prayers.

As I speak, a lovely man is building a ramp for logan, and some fabulous plumbers came yesterday to plumb the new bathroom.  Logan is so blessed to be loved and cared for the way he is.

Friday, November 19, 2010

A change in plan

We have just received confirmation (well, 99%) that Logan does not have Ewing's Sarcoma.  He actually has a type of lymphoma (Anaplastic Large Cell Lymphoma I think).  This was determined by the pathologist at Waikato Hospital and will be confirmed here.  This cancer is easier to treat with a much larger chance of a complete cure.  So very good news. It also means that we will not be taking part in the clinical trial so we will not need to stay or come back in 6 months. Tomorrow Logan will have a PET scan and X-ray to complete/confirm the diagnosis.
Flights are being organised as I type to get us on a plane home this weekend.  Logan is hoping that we will be able to work in a trip into Washington DC to visit the Smithsonian but we won't know if that is possible until we know the flight times.

...but just a bit tired

We flew out of Auckland 7:30pm 17th Nov - business class luckily (thanks Waikato DHB).  We got to use their cool new sleeper chairs that during normal use are a chair plus ottoman, but fold-down to a roughly 6ft  bed.  Its a bit cramped but muuuuuch better than sitting up for 12hrs in economy.  Even the food was good. So was the wine :-) 
Logan had one fever on this flight but it wasn't a bad one and panadol sorted it.  Logan managed to get a few hours sleep. I got less but that was still more than I expected.  Great, friendly service by the AirNZ staff.

We got to San Fransisco at 11am local time (8am NZ).  The next flight was at 12:51 so we thought we had lots of time but by the time we cleared customs, picked up our luggage, and made our way to our next gate we were only waiting 10mins - time for a coffee and a croissant.
Next flight to Washington DC, flying United, was a bit more cramped. We were in business class so there was enough leg-room for Logan. He dozed a bit but no real sleep. Food not so good, but great scenery, and an unexpected bonus - more on that from Logan.
Finally into Dulles International airport at 8:30pm local time (3pm NZ). That's one seriously big airport we had to get onto a subway train to get to customs/baggage claim.  Spent ages at customs.  Picked up our bag and then waited and waited for the wheelchair to arrive at the Oversize area. I eventually went to find some official to help.  Of course as soon as he arrived so did the chair. 
Next step find our ride.  Or not.  There was supposed to be someone waiting with our name on a sign but we waited and waited.  We walked/wheeled up and down the exit area (200m long!) for an hour.  The information booths were closed.  I could not get my phone to dial out.  We were just about to get a taxi when we saw the driver walking by us.
So now it's 10:30pm.  45 min drive to the National Institute of Health with a Redskins fan for a taxi-driver.  Admission, examination, blood extraction.  It's now 2:00am (almost exactly 24hrs now). I rang Tracy to tell her we had arrived OK.  She had some interesting news - more on that later.  Finally we get a lift to the Childrens Inn which is less than 100m away and into a room for a bit of sleep.
Back up again at 6:30am to get back to NIH for a 7:30am appointment.  More poking and prodding.  Back to our room for a snooze, back to NIH to the cafeteria for some lunch, then back to our room for some more rest.

Hiya guys, Logan here. As dad has said, we had a loooong plane ride, business class Air New Zealand was great, comfy chairs, good food (but not really to my liking, but still good), and great service. Unfortunatley I can't really say the same for united, it nearly turned out to be a rather strenuous, boring and uncomfortable, but it wasn't quite as boring as I had expected. For who happened to be sitting directly behind me but Discovery Channel's Mike Rowe, most noteably known for his show "Dirty Jobs".
He was really nice, apparently he was flying to DC because this is the home of Discovery Channel. We talked for a little bit, and when we landed gave me an autographed picture and kindly stood next to me for a couple of quick photos. So that really brightened up a really dull flight.

We landed, and since everything so far had been successful and easy, of course we couldn't find our driver, and what do you do, when you've landed in a forien country, no transport and basically no idea where we are going? Nothing, for what could you do, so we walked up and down that long room, just walking/rolling. eventually we found our driver, we were so relieved, altough we couldn't agree on whether or not he had been standing there waiting for us when we had checked the exit he was waiting by several times. But he was nice, we talked about sport and several other things as we rocketed down the motor-way in our van. finally at 11 o'clock local time, i'm tired and looking foward to bed, but noooooo, they needed to take my vitals, talk to me, take bloods which are not fun when you're having trouble keeping your eyes open. And what should happen when they try to take bloods the first time, it doesn't draw any, here this nurse is wiggling this needle around in my arm, trying to strike the vein and i'm not allowed to move my arm at all.
Eventually we reached the childrens inn, which is lovely might I add. As you enter, a giant pillar with a fireplace at it's base grabs your attention, really the whole thing is simply too hard to explain. But the part I was looking foward to was our bedroom, which we reach for a lovely 4 and a half hours sleep. And that is where I will finish my part of the tale, for today has been fairly uneventful.

Thursday, November 18, 2010

They Arrived Safely!!!!!!

Evan phoned at 6pm (midnight their time) from the hospital to say they had arrived safely.  Logan slept most of the way.  He only spiked fevers on the international flight.  I assume they will do the meet and greet during our night time and by the time we wake up will have the afternoon to themselves to explore... should they have the energy.

Keep sending those prayers....

Miracles can happen....


Well... Logan and Evan should have landed in Washington at approx 3pm our time (9pm Washington time), after leaving NZ last night at 7.30pm.  I imagine Logan is exhausted and hope that they adjust quickly to the time difference.  I know they are staying at The Children's Inn in Bethesda, Maryland. 

If you guys read this, please make some entries so that we know you got there ok. 

We all send our love to you Logan... enjoy the experience and break free whenever they are not chopping you up. 

Love Mum

Tuesday, November 16, 2010

Leaving... on a jet plane....

Evan and Logan fly out of Auckland on Wednesday 17th at 7.30pm... Air New Zealand we think... they will try and continue to post on the blog over there...

Hopefully adding pictures and stuff...

And while they are away... we get onto building a ramp, putting in an underground pipe, and then beginning the new bathroom...

So dont wear new clothes to my place if visiting, cause you might find yourself with a spade or hammer...

Love to all our friends and family

Awesome Update!!!!! - 16 November 2010

Last night Logan's Oncologist called to say that there was a new clinical trial in the states.  It involves taking a sample of Logan's tumour and his blood and making a vaccine to fight the cancer.  Trials so far have proved successful.  So today I have been crazy busy organising everything from test results, to visa's.  Logan will be the first to receive the treatment which will be given to him on completion of his 6mth chemo in a series of fortnightly injections.  The DHB has come to the party and paid for two business class tickets to fly him to the states.  Then the states pick up the bill and pay for all our expenses there, then the DHB flies him back.  Evan will go with him.  This treatment has so far meant that 75% of people who have received it at the end of their chemo have stayed cancer free for 3yrs (the time length of the trial so far).  This could prove awesome for Logan!!!!

We feel blessed that these opportunities are coming our way.  Logan is the only one from NZ to qualify at the moment as one of the protocols is that you cannot have had chemo.  If we had of started last week as suggested, then this would not be available to us either.

That the powers that be, that we have such a wonderful oncologist who is looking constantly for opportunities for his young people.

All hail Dr Jameson!!!!!

Monday, November 15, 2010

15 November 2010 timetable change... and more

Change of timetable... found out today from the oncology nurse that Logan cannot get his portacath until Friday now.  Logan feels that he doesnt want to wait any longer for the chemo so has asked if they can do it by leur on Wednesday.  Everything going well, we will begin the treatment then.  He is required to have a heart tracing first as the treatment is hard on the heart and they want to make sure it doesnt get damaged.  They are hoping to put the portacath in on Friday morning.

Today I shed several tears as I watched my brave boy have his hair chopped off.  He now has a stylish short cut which is taking some getting used to.  Twelve lovely plaits lay in a tissue lined box. Better to do it when he wanted that to find it on his pillow...

Sunday, November 14, 2010


May I please send out an electronic hug and kiss to the family who are organising to have  a ramp built so that Logan can get in and out of the house.  Not only are they sorting a builder, but they are providing the wood as well.  We are truly overwhelmed by your generosity.  You are our angels. Thank you.

Logan's hair

Logan has made the decision to cut off his hair before the chemo takes it.  We respect his choice and have arranged for a hair dresser to come to our house tomorrow (Monday) to do the job at 2pm.  Logan will probably get it cut to an inch all over so that the tumours growing on his head are less obvious.  He hasn't decided whether or not to use the cut hair to make a wig for himself in the future or continue to donate it for another child.  I think he will make this decision once the shock of losing the hair has subsided.


Thanks to so many people.  I wont name you cause I am frightened I will forget someone.  But people have been dropping off dinners and baking, fruit, chocolates, garden flowers, someone took my washing (and even changed our bed), someone else took school work, Charlotte set up this blog, visitors are coming constantly to keep our sanity, someone else has come to check out how we can quickly make another bathroom, another is trying to help us to make our house more wheelchair friendly with ramps and getting over entrance way lips, not to mention all the prayers and love being sent in huge quantities.  We are humbled by your kindness and support. 

Thanks to the kids in my class for the wonderful cards that they sent for Logan, and to everyone who visits and draws a picture for the wall.

The journey is going to be long and hard, but we will travel it with your love and support to guide us.

Thanks so much

Tracy and Evan

Saturday, November 13, 2010

13 November 2010

Hey everyone,
If you didnt already know,  Logan has been diagnosed with Ewing's Sarcoma.  This is a very fast moving cancer which affects kids his age. So far it is in his right knee, hip, pelvis, left femur, stomach muscle, both lungs, one rib, and all over his scalp.  Next week on Tuesday or Wednesday he will have a general anaethestic and have a portacath inserted in his chest which will connect to a vein. All his treatment's will enter through this.  We are at home at present till then.  Visitors are welcome, but please text or phone first.  Logan is due to begin chemo as soon as the portacath is in. Please post comments of love or support for Logan here.  We will update when we can, and try and check it daily.
Thanks to everyone who has delivered meals to our house and done washing, and baking, and all the other millions of things you have helped with.  We are blessed to have such great family and friends.