Friday, September 30, 2011

HOUSTON..... WE HAVE TRANSPLANT!!!!

With half of Hamilton and Auckland praying for Logan... it had to happen! Logan's tumours have begun to disintegrate. Hooray! (the chemo and steroids may have helped but its a debatable point!). The oncologist was jumping around the room, she was so happy.  I don't think she expected to be telling us good news, as after our appointment we had to wait another 15minutes for her to do the paperwork for Logan to sign, and then listen to another speech about transplants. Unfortunately, during the wait, Logan had a call from Evan to say that his cat was having to be put to sleep as he is in kidney failure... that punched us in the stomach somewhat!

Below are some photos from his radiation therapy today

I will try to get Logan to post later, but his sister and Dan just arrived from Hamilton and took off walking with him!  I'm about the have a massage (courtesy of someone here) at 5pm, then we are all off to see a musical (tickets donated by someone) at 7pm.

Logan hops on the bed and gets into a comfy position (sort of)

The technicians are good a putting him a ease



The mask the technician is holding is made to the exact fit of Logan's head shape

It fits over his head and is screwed to the table

Logan can breather, blink, and move his lips a little, but that's it

The parent in me is fantasising about other uses for this mask!

The table is raised and Logan is positioned with his skull in the centre, using laser beams! (go Queen)

Sorry about the blurry pic... tried to capture laser with no flash!

The machine is rotated and opens up on either side of his head

Logan, as I see him before I leave him on his own... we then go outside and watch him on a screen.  I was going to video this for you, but the whole thing only takes 4 minutes and I wasn't quick enough!  Will be longer and more stressful next week.  Will post again soon... or make Logan
Love to you all and thanks for your love and prayer

Logan's Mum

Wednesday, September 28, 2011

Ronald McPost

Howdy all.
Logan is back baby.
So its aparently my turn to post.
Well most of the information has been supplied by mum in the previous posts.
But to update what happened today. We had an appointment with our transplant doctor at 9:30 which became a 11 appointment. And a appointment with a diabetes doc because of my medication induced diabetes. In the end we saw the diabetes doctor first, unfortunately I cant remember her name at this point in time. Anyway, she got me sorted with the whole diabetes talk, explaining why it happens and what insulin does. Anyway, the main overview is that when you have diabetes your cells are less sensitive to insulin which allows glucose into the cells where its used. So now I have 2 insulin pens. 1 long acting one that I take 8 units (0.08 mls) ever 12 hours. And a quick acting one that I take what the docs tell me to every time my blood sugar is above 10.
But back to my appointment with the transplant doctor. When we eventually got to talking to her, we remembered why we hate these appointments. Anyway, basically the nodes in my mouth (most likely disease) have grown. The steroids are obviously not controlling the growth (or atleast they're slowing them down). We asked the doc why we couldn't be on a higher dose of steroids and she informed us that they increase the risk of a fungus infection during transplant. So the very fact that im getting steroids now is out of character, and they wouldn't risk giving me any more.
She also informed us that if the steroids failed to arrest the growth by friday we have to look at either postponing the trasplant for more chemo or simply dropping the transplant entirely (please god no). But basically transplant is all we have. It combines heaviest of all treatments, Radiation, Chemo and my sisters marrow/immunity. We really need to find a better way to get this information because mum and nearly me always end up in tears.
So our current plan for the next couple of days is radiation at 8:30 in the morning tomorrow, then nothing for the rest of the day. And friday we have an appointment with the doc again at 12 to see how things are going and to decide what to do next. And a 2:30 Radiation blast. Atleast we have the weekend off, which we plan to spend with the family, who will be arriving on friday and saturday. Then we have 1 last dose of radiation on monday, which afterwards we are hopeing, that if we need more chemo then we are going to be able to sneak back to the waikato for it. Because I'm certain that Michael can manage chemo.
Well I think that will do for the evening.
So as always, Be good and stay healthy.
Logan.

Tuesday, September 27, 2011

Day 2 in Auckland

Today was full of sunshine... literally. A beautiful warm sun shone down, leaving the wind in the bay, rather than up here.
After breakfast this morning, and blood sugar levels, we headed to the hospital for Logan's 2nd day of radiation therapy. It went smoothly, though the walk up the hill was quite tiring for the boy.
Our day was basically spent doing washing, eating, playing on our computers, and more eating... 
Tonight, the Kiwani, along with Mt Roskill Grammar, cooked us a fabulous meal. We enjoyed a first course of lasagne, salad and bread, followed by ice-cream, apple crumble, and custard.  They were so nice... And there are leftovers so we might even be able to have some for lunch tomorrow :) We do miss our friends and family though... but thanks to everyone who has phoned to say hi, it makes Logan's day... he is ready to trade me in for a pizza!
This evening, we chatted with our friends on line, and watched t.v. in bed after early showers.
Sorry life is so terribly boring for us... it makes for totally mundane reading...


So instead I will leave you with pictures of the view from our window at 5pm this evening... So lovely that I almost forgot where I was and why....



hugs
Tracy and Logan

Monday, September 26, 2011

And so it begins...

Hey all....
I have put this in bigger print, as some of my YOUNG friends are having trouble reading it if they can't find their glasses!
Well, we arrived in New Zealand's largest city last night... I'd like to say I know it's Maori name but I don't.... not even sure if it has one... The lovely staff checked us in to Ronald McDonald (RMcD) house and told us they had given us a large room down a quiet corridor.  GREAT!!!! The corridor is indeed quiet... thank goodness... but after our luxurious accommodation at Grafton Mews (the other RMcD house) our room is exceptionally tiny. Logan's and my bed are exactly one bed space apart... under his bed is a pull-out bed should another person stay... they either have to be very thin (so they slide under the bed) or we squish them sideways against the wall... not much room anywhere else!
Last night, neither of us slept. Logan unfortunately had a very sore jaw/tooth and his gums were swollen in two places.  I had taken him to the dentist on Monday.  They took x-rays, but could see nothing but slow growing wisdom teeth.  Consequently Logan was awake most of the night in pain... and I was awake listening to him being awake! He is not a quiet awake person. 
This morning we got up early at popped up to see the doc at 9am.  His mouth was unbearably sore. She took one look and said it looked as though the disease was back!
She popped out for a bit to get him a script (she said) but whilst out, Logan's pain became severe and he became dizzy with it - that combined with the walk up the hill from RMcD house was all a bit much for him.  I quickly popped him on the bed and raced out to get some milk for him to take his pain killers with.  Whilst out, I spied the doc.  She was having a chat with the other cancer doc's about Logan... so much the script.
When she came back in, she checked him over and then told us the following:
- She is putting him back on dexamethazone twice daily (the steroid) to see if that will reduce the tumours
- With the disease coming back, she had had to choose one of the following three choices for Logan: 1 - to continue as planned for the next two months but adding dex for the above reasons; 2 - delay the bone marrow transplant and put Logan through another series of chemo the same as he has just already had in the hope of eradication the disease; or 3 - cancel the bone marrow transplant (when she said this my jaw dropped and I felt profoundly sick). Luckily she said she had decided on option 1 and that everything was going to go ahead. But she also said two other things: firstly, literature (little as there is) says that there is still a chance that the bone marrow will be effective even if he still has some disease at transplant time, and secondly, that unfortunately, the return of his disease has decreased his odds of total remission again....
- She will review him on Wednesday


11am saw us at the Radiation clinic. I must admit, both Logan and I were a bit apprehensive about the treatment... tears formed in my eyes as they clamped him to the table... and we made our exit. The staff are so kind, they let me watch him on the monitor. The entire treatment took approximately 4 minutes... it took longer to set him up and clip him in! Afterwards, Logan said the mask was very tight... and when he turned and looked the other way I could see what he meant... where his head had been resting, there were bright red blotches!  They gave him 4 beads afterwards... one for being brave during his first session, one for the radiation itself (it glows in the dark), one for the x-ray that they took at the beginning, and the forth for dressing changes which actually applies to the cream that he is going to have to apply to his head twice a day to stop it getting irritated... I'm such a proud mummy :)


A quick visit back to clinic after the radiation, and we are told to come back at 3pm to have Logan meet with the diabetes nurse... blooming heck!  Come 3pm... Logan is sound asleep, and when I suggest he wakes and comes up to the hospital, he says things to me that aren't very nice (or was that a song I heard), anyway.. I went to his appt without him.  The nurse was a lovely lady... who provided me with another kit (as I had not brought our one, not thinking we would need it), and sent me on my way... Logan not needed after all...  Also asked for them to organise a wheelchair for him as the hill up to the radiation is more likely to be the end of him than the disease at this rate!  They are getting back to me on that one. . . 


GOOD NEWS:::::::::::
The dex seems to be working as this evening Logan is again pain free... the tumours in his mouth are still visible, but not causing him any pain now.... the dex has (again) begun to make him diabetic, but we are keeping an eye on his sugar levels and will see how it goes during the week.... 


Went grocery shopping this evening with Emma (a childhood friend of our family), who is a 2nd year med student.  At least I know where to go now.... and we have a full pantry, thanks to Aunty Nola, and Deborah.


This evening we are chilling in our room... trying to pretend we are at home... we are grateful to the people who cooked dinner tonight for all the 120 residents in the house tonight.. they are a church group... lovely people. Tomorrow night the Kiwani's are cooking for us... it saves heaps of money, and it is fun to eat with lots of other people around... we are slowly making friends... 


RMcD have kindly allowed me internet access on my laptop to keep up with emails and update the blog... Evan will also be able to use it for work, when he moves here next week.  


MORE GOOD NEWS:
On Saturday we were told that they had found Brad's car.  Details are sketchy, but we think the newspaper article may have done the job (big thanks to Maryanne Twentyman). Will keep you updated on what happens with it... hoping that the insurance company comes to the party and doesn't do him like a dogs dinner... he is with Club Auto, and it appears there is more fine print in their policy than in an Englishman's handwriting! 


OUR CONTACT FOR MAIL:
Logan Roose
C/- Ronald McDonald House Auckland
PO Box 110119
Auckland Hospital 1148


Direct dial to our room: 09 3658300 ext 827 (please leave a message if you miss us, so that we can text you when we are back in the room and you can ring again).


Logan and I will be here till Monday, then Evan takes over the room.


I will post the phone number for Starship in the Bone Marrow Transplant unit next week so I don't confuse y'all.


Keeping Logan smiling is our number one priority now... please phone, text, send cards, letters... anything positive... 


PLEASE KNOW:
As we end our day in readiness for tomorrow, we are grateful for all the friends we have... for the love they show, and for the life we live....


Arohanui everyone... photos coming soon :)


Tracy and Logan

Tuesday, September 20, 2011

Hello Hamiltonians....

And the rest of the world... Sorry about the sabbatical... been seeing to so much stuff lately, forgot about ya'll on the computer.

So much to do, so little time to do it in.... the countdown has begun to the party/leaving day.  My thoughts have decided not to come in any particular order so you will have to sort them as you read... seems fair to me!

Last Friday Evans sister arrived from Nelson with her friend from Wales... Needless to say, we have had a very full 5 days of rugby and beer, as is the culture in Wales... Evans friend took pity on Evan, who has no money to buy beer and proceeded to make sure he didnt dehydrate... how kind of him... which resulted in me making sure he didnt drown! Main highlight from the weekend... WATCHING IRELAND BEAT AUSSIE!!!!! oh... and seeing Lynette, Kate and Lee... (snigger).

No further progress so far on Brad's car, so I got proactive (oh god... I hear my nearest and dearest say), and emailed the Waikato Times (specifically the lady who likes Logan), telling her about everything thats happened since we last chatted, and Brad's car etc... Consequently (oh god... they say again)... she came round this morning with a photographer and took his story... It should be in tomorrow mornings paper... If I DO get hold of the bugger who took Brad's car he will live to regret it (and yes I know I said he... but thats just the odds.. sorry blokes out there).

Logan (who this blog is really about), went in for chemo yesterday with his Aunty Lynette.  It is his final one before the conditioning, just to hold him in remission... rather important really.  Afterwards, Auntie took him to the pub to collect Lee, who offered him a beer (as only a Welshman would), which he smartly refused...

Not sure if I mentioned before (and I cant be bothered checking), Logans scans all came back clear the other day when we were in Auckland... which was awesome... including his spinal fluid and bone marrow... YAY!

Evan and I took Jazz and Jamie to say goodbye to their Grandma in Rotorua yesterday, who passed away last week. Our love and thoughts go to Alex, Norrie and their family... your tributes to Linda showed just how much she was loved and valued in her lifetime... she made so much difference to the world...

Last week (Thursday I think), Logan went to Northern Health School to say hi and catch up. They had a quick game of cards together in their break before I collected him again. I could hear them laughing before I even entered the room... they are a great bunch of people who really care about each other. Logan has talked with them using the camera and a program like skpye, from Starship a couple of times and it really brightens his long (dare I say lonely) days.  This time he plans to take his computer that he was given by Make a Wish so I am not sure that they will get many calls, as Zombie Killing seems to take priority over just about everything these days.

Apart from all this... Logan is doing well.  I am not looking forward to packing for our time away... the seasons will be changing cause we will be away so long! Logan is tossing over which day to leave... he kinda wants to be here Sunday evening, but doesnt want to get up too early Monday morning... Typical teen.  We will be spending at least a week in Ronald McDonald House. Not sure which one yet, but will post when we know. Then when we head into Starship, Evan will move into our place at Ronald McDonald house and stay there for several weeks working from Fonterra in Auckland so that he can be close to us.

Lots of people have said they want to help but dont know how... and another friend said I should make a list... so I have come up with a couple of things... If someone asks you.. just send them to the list... cause very soon I think I might be so flat out that thinking wont be on the top of my list.
- check on Brad and Charlee while we are away
- drop off meals for Brad and Charlee
- if you are in Auckland, stop into starship for half an hour so I can go out for a break
- check the kids are feeding my animals (2 cats and fish) (donot feed the fish to the cats!)
- make sure the kids are bringing in the mail
- remind the kids to mow the lawns
- tidy the gardens
- check the chooks still alive (should be 4) I will sort someone to feed them and collect the eggs
- drop by the house if the kids know you and make sure they havent trashed the place... if they dont know you they wont let you in! See if it needs cleaning and let me know... I will text them a bomb to put under themselves
- groceries are welcome at both Auckland and Hamilton... Evan will be cutting his hours to help me with Logan and he is our bread winner, so all assistance now gratefully accepted... (man are we gonna have a long list of people to have over for dinner when this is all over...)
- the week of the transplant... please take care of Brad... the rest of us will be in Auckland... unless he changes his mind and comes up as well, but it is not expected

Okay... as I'm sick of writing this, you must be bored of reading it... know that we love you all and are so grateful for all of your support... Again the journey is about to begin... Unless something monumental happens, this will be my last post till we arrive in Auckland...

Thanks for being you

Tracy, Logan and Family

Sunday, September 18, 2011

ENOUGH IS ENOUGH!!!!!!

Do you ever have days when you have just had enough?

Well that is today for me!

Got up this morning and Logan's cold has gotten worse... wet chest sounds and such... probably going to have to take him up to the hospital or doc again today... cant have him sick for his transplant.

Then look out the window... Brads car is gone... didnt even hear him leave this morning... noisy car and all that!

His door is still shut, so I peak in side and hes in bed... hmm.... back outside and look around... no car...

Back inside... Brad... where is your car?... on the sand.... no its not!

SOMEONE HAS STOLEN BRADS CAR!

When does it end... That car was $3500 towards his trip to Canada! He even had a buyer who only came around yesterday.  And yes... we are now suspicious of that chap... have left it in police hands...

PLEASE LOOK OUT FOR BRADS CAR:

TOYOTA STARLET - KI8801
MATT BLACK
INSIDE PAINTED VIBRANT BLUE ON THE METAL
DEEP DISH BRUSHED METAL WHEELS
FLARED WHEEL GUARDS
LOWERED
CUSTOM FRONT BUMPER

If you see it anywhere... please contact the police *555 from your mobile and tell them where it is... Please dont touch the car as the police may want to finger print it... If you see if being driven, please follow it whilst calling *555.  It is the only matt black starlet we have seen in the disctrict, and the flared wheel guards make it quite distinctive. We need this car back... it is insured, but the excess of $1000 will severely chop into his Canada money...

Please pass this onto all your friends... Brad has some items in the car that belong to other people and are of huge sentimental value, they are irreplaceable... please keep you eyes open. 

Thanks
Tracy, Evan and Brad.... will update you further on Logan soon. 

Tuesday, September 13, 2011

A post from Mummy...

Hey Y'all,
Well its all busy busy busy... as Logan said.  I might just fill in a couple of the gaps that he left. As he said, he was in a hurry, but that's no reason to ignore his fans!

If I might take you back to last week...

As he said, on Wednesday, early afternoon, be spiked a wee temperature.  This was somewhat bothersome as we had plans to go and see the infamous Ligel Latta (potty mouth that he is). We met Ellyn in the outpatient clinic, and convinced doctors and nurses alike that I could care for Logan well, and that we just needed a dose of IV antibitoics and then we would be on our way.  They rushed us up to the ward, where they gave him both types that he required and we raced/wheeled out the door.  Although he is back walking, it is at a slow pace, and we were in a hurry.
Our evening with Nigel Latta was amazing (as anyone there will tell you). Logan, Evan and I were in stitches. Unfortunately during the evening, and after we arrived home, Logan's temp raced up to 39.6 which is unacceptable for anyone.  We are unable to give him panadol as that can mask other life threatening conditions that can occur whilst he is neutrapenic.
So once again, to the hospital we went, arriving there at around 10.45.  Dears that they are, they rushed him straight thru and then up to the ward. They had done all the blood tests and cultures earlier so there was no point in doing them again.  At midnight we retired to our bed in room 21 (a new room for us).
It is quite strange being on the ward, when Logan doesn't actually feel ill.  As you can imagine, Logan and I got up to quite a bit of mischief over the course of the next few days... however rumours of pillow fights at midnight are probably greatly overrated!
Michael said repeatedly that we could make our great escape when either his temperature broke, or his neutraphils came back to life (they went on holiday). This occured on Saturday, so we headed out and Logan treated his mummy and daddy to lunch down at the lake.
Logan and I had a lovely night at home, before heading to Auckland on Sunday evening (yes again).  We spent the night in the old Ronald McDonald house which is located on the hospital grounds.  It is not quite as new as Grafton Mews, but much bigger. Definitely suitable for younger people, but Logan and I found it quite noisy.
We headed up for his scans on Monday morning (I pushed him up hill!).  He had a cannula inserted into his arm at 9am, followed by a CT scan at half past, then at 10.30 he had an MRI scan in a private facility attached to the hospital.  This was paid for by the hospital, as they had no spaces in their own machine.
During this time, I had a call from the oncology nurse to say that we had an outpatient appointment the following day... to cut a long story short... i explained that that wasn't going to be a happening thing (apparently someone had forget to phone us).  They phoned the doc who, bless his cotton socks, arranged to see us at 3.30pm.  Logan and I then went and had a bite to eat (he had been nil by mouth), then we went down to the CCF down the road.  They have a lovely QUIET family lounge, where we chilled until our appt.  They kindly dropped us up there, so we wouldn't have to get a carpark.  We learnt lots of stuff.  But the doc was really up front with us and respectful of Logan.

As soon as we left there (4.45) we headed to the car and home again!

Thank goodness for Pokeno... their icecreams kept us awake till we got home again!

So that's about everything... Logan is just chilling for the next week and a half, whilst I am busy trying to fundraise for Brad's trip, and plan Brad's 21st.... just another ordinary day!

Love to ya all,
Take care and keep smiling
Tracy

Sunday, September 11, 2011

busy busy busy

Hiya guys.
Very quick post today, when in all honesty it deserves a lot more time then I have to give it. The reason for this rushed-ness is that we are about to head off to Auckland for more scans.

Anyway, lets start at Tuesday last week. We had an appointment with doctor Hardy, the dedicated among you will remember him as the orthopedic consultant/surgeon who saw me on diagnosis. He got an x-ray of my right leg and deemed it healed. So walking again. YAY!!!!!! moving right along.

By this stage in the week I was definitely neutropenic (no immunity) so when I spiked a temp that afternoon we popped in to Waikato hospital to get checked over and grab some antibiotics. We were all sorted to have the district health nurse come in the morning to give me half of the antibiotics and to get the second half in the evening at ward 25 so we escaped to go see Nigel Latta, known for his politically incorrect guide to parenting. And he is hilarious. But unfortunately, after the show, my temp reached 39 so back to hospital we went.

We stayed there till yesterday, when my fever broke and my immunity got back from holiday. So I shouted mum and dad lunch by the lake.

Well that's most of it I think. Enjoy whats left of this rainy Sunday afternoon.
Till next time, be good and stay healthy.
Logan
P.S. Go the mighty All Blacks

Friday, September 2, 2011

We have a schedule... sort of...

Conditioning/Preparative Regimen

Charlotte will be harvested on 10 October, after being admitted the day prior. She will probably stay another night and then go and stay at Ronald McDonald till she is well enough to go home again.


Logan has a scan on 12 September.  If he has gone into remission, then things move as follows. If not they will give him further chemo in Hamilton, but the plan will still continue.


On 26 September, Logan will begin 6 days of cranial radiation for 15mins per day.  We will be an out patient for this.  This will be followed by TBI (total body iradiation), for 3 days (twice a day). We will be an inpatient for this - in the bone marrow unit. This will be followed by high dose chemo. Also on admittion, Logan will be required to insert a nose tube as he will develop mucusitis, which sort of means that the lining between the mouth and the other end will come away and he will be in a lot of pain... to much to eat. So he will be feb through the tube when this happens. It also enables them to give him medicines, rather than taking pills. This usually occurs about one week after the transplant though it has nothing to do with it, but rather a reaction of the radiation and chemo.

Day 0, as they call it, is the day of the transplant. This will be Monday 10th October.


The day before the transplant, Logan will begin a drug called cyclosporan, which suppresses the immune system. This will be decreased over time, which will allow his body to begin to fight germs again. But initially, of course, they dont want it to fight Charlee!  This drug helps to prevent nasty graft vs host.  They have assured Logan that they have an arsenal to fight this, so fingers crossed people.


On about day 8, they will begin to give him GCSF, which is a product that he has now, to boost the making of stem cells. His body should be producing neutraphils between 14 and 21 days after the transplant... this is the danger time. We are lucky that Logan has a 6/6 match with his sister, but there are still risks, as with all procedures.


We are home now till our new journey begins (except for our trip to have scans and our outpatient appts), so feel free to visit. You are welcome at any time. If you have any illness, though, please wait till you are well.


Well, that was overwhelming to type, so it must be overwhelming to read... so I will leave it there.


take care
keep smiling
Tracy





















AND STILL MORE PHOTOS...

Sorry about the quality of these ones... I had no camera and had to use my phone....

This photo was taken during the preparation and setup for Logan's total body radiation (TBI).  They need to made sure that Logan's entire body is the same density so that the radiation spreads evenly and he is properly toasted! They measured the widths of his body from the top of his head, to the tip of his toes. They will put buffers next to the parts of his body (like his lungs) that have very little density...

Logan will have to sit (lay) in this position for around 40 minutes, without moving, but he is allowed to take his own music or a DVD. He will have this treatment twice a day for three days as part of his conditioning for the transplant.

The fitting of the mask.... it fits exactly right. It is clipped to the board so that when Logan has his cranial radiation (once a day for 6 days), he will be still and centered. His sessions will last for 15 minutes.They assured Logan that he can sit up if he needs to as the whole board behind his head will lift to.  There will also be a speaker so he can talk to them and visa versa.

Logan's impression of Hannibal Lecter

Every young person in the oncology ward has the choice of having their own door plaque made... each one is unique. Logan chose this personally.

PHOTOS PHOTOS PHOTOS

Logan chillin in his room, with his dolphin swimming above his head...


Logans hair begain to thin, so we decided to just pull out the loose stuff, and ended up plucking him!

Logan with just his baby fluff

Dai Henwood visited us at Ronald McDonald House.... He was so nice... Logan was really excited



 Charlee and Dai had fun trying to get Logan to laugh but he just thought they were nuts.
Logan preparing to have his radiation mask mould made

glad wrapped... to protect his head from sticking to the plaster

The plaster was applied to his head in strips within three minutes and left for two minutes to harden

Waiting for it to harden...

Pull gently... I need my ears

The mould... from this they will make a clear plastic mask for him to wear whilst having his radiation therapy... photos of this to come...

Logan and I visited the Wintergardens after the masking... it was beautiful... but not on a par with Hamilton.  Lovely orchids tho, and we took heaps of photos to show grandad.

Logan and Nana Diane... we went and had fish and chips for lunch with her.  A quick visit turned into several hours and sadly we returned to RMcD house... We dont see you enough Nana...