1 night left

Hiya guys. Just a quick, evening post.
We are hoping to get out of here tomorrow afternoon, and plan to be back in hamilton by tea time.
We also have a schedule for transplant. So we will give you a full update in the next couple of days, so watch this space.
Logan.

Two more sleeps to go...

Hey cherubs,
Today was as spectacularly uneventful as yesterday really.  We have a couple of things to share, but nothing earth shattering.

Firstly, we went and got a script for a glucose test script today and Logan has begun to test his own blood sugar levels every four hours. He is very brave... though I still give him his insulin when it is needed. He draws the line at needles. He did it once to prove he could, and that was that!

Another thing, was that Logan gained 2kg today, meaning that he was retaining fluid. So they gave him a jab to make him pee... lots of fun, I know. Poor boy was going every ten minutes... Had an awesome nurse today though, and she made all the extra procedures worth while for Logan I think.

Oh... I forgot... Every Tuesday evening, Canteen provides pizza for its members, so Logan had a supreme with chilli and some garlic bread, whilst I had his hospital dinner.  It was ok... chicken drumsticks... but the smell of gravy didnt make Logan a happy boy, so I had to eat all alone in the kitchen.

Tomorrow, we meet with the transplant team. Logan and I are hoping that we will discuss the transplant, finally, as they have not said too much to date. Apparently they deal it out peacemeal, but that is not very helpful to Evan and I as he is only up here for short periods.  Speaking of the man, he has been home sick for two days, and is trying desperately to get better before we get there, as we cannot expose Logan to anything - viral or bacterial. We might have to send Evan home to his Mum and Dad if he is not going to obey the rules!

The kind people from Canteen also came today to set up a laptop for Logan in our room so that he could use the internet, as we have no playstation, but we then found out that we have the only room that has no internet access!!! Poor Logan... we had our chemo started late, the play station was off getting fixed, and then no internet access... good thing he is a cup-half-full kind of guy!

Sorry that we still have no photos for you... we have collected so many now, and still are unable to put them on here... they will come...

Love to you all...

dont let your fears define you, but rather let them strengthen your character

Tracy and Logan

Monday night and still pink and breathing...

Hey y'all
Whats new? nothing much. last night logan and I had very little sleep as he has once again got diabetes due to the steroids... why he cant just get muscles, I dont know! he also has to put eye drops in through the night. So, between me getting up to give him insulin every 4 hours and him needing to put eyedrops in, neither of us are in very good humour today. Sounds like they will be giving him a testing kit to take home this time.

To top it all off, Logan still has no playstation as it is away being repaired.  We have been told that he will be moving rooms tomorrow or the next day as a patient is coming into the transplant suite, which is where we are now. So consequently, poor logan has been somewhat bored.

I apologise to my school colleagues who will be looking at this post and thinking my grammar has gone to sh**. Frankly, I'm too tired to care... but at least logan and I have each other.

Brad and I have been planning his 21st in October, knowing that it will be smack in the middle of Logans transplant time.  hopefully we can do that justice.  He has been busy trying to get some business backing for his trip.  Please can you ask anyone you know in business if they can sponsor him, as I only have about two weeks when I get out of here to help him to fundraise! We are looking at maybe having a huge garage sale as well... Lords knows!

anyway, the eyelids are drooping and I know its gonna be another late one, so love you all and take care of yourselves.

P.s. Thanks to all our visitors yesterday... Daddy, Aunty Sue and Uncle Paul, Helen and Brent, Uncle Dean, and counsin Chloe. We had non-stop visitors for about 3hours and  it was awesome!

p.p.s. sorry about still having no photos up. we only have access to a t-stick and the photos will eat up all the usage, so we will have to wait till something better comes up.

love y'all

Tracy and Logan

Sunday morning and all is well... mostly

Hey all,
Logans chemo is progressing well. Evan came up to stay with us yesterday, but predictably, my brother stole him and he took off over there in the evening to watch the rugby and share an indulgence or two.

Logan and I slept the usual hospital sleep with Evan catching us still in bed when he arrived this morning. Logan has already gone diabetic, which is not surprising considering they gave him sucrose in his fluids for the first 24hrs.  Tried to tell them, but I am only his mother!

Blood sugar was 13 before breakfast. Still waiting to hear back from the endocrinologist.

Have loads of photos to post, but not much money on the t-stick so waiting for Monday when I am hoping that we can use either the hospital school, or Canteens computer.

Expecting visitors today... YAY!

Evan looks bored already and its only 10am ;)

Talk again soon people....

Love ya's

Tracy, Evan and Logan

TGIF

Well, Logan didn't get his wish today... he wanted his bloods to be too low for treatment, so that he could go home for the weekend and spend some time with his mates... it was not to be. Anyhow, I got my wish (for his bloods to be good) so that is all that matters... remember, its all about me!

A brief recap...

7am - up and downstairs for breakfast

8am - head to the hospital - get a carpark right outside on a wheelchair space (YAY).

8.30am - In early to the 'mask' appointment. Fits well...

9am - CT with the mask on. So quick, I didn't even get to do my puzzle!

9.30am - outpatients oncology - for an appt we didnt have... come back later!

10am - back in the room - chilling

10.30am - Logan receives a package which I ran downstair to get for him... very exciting... dont usually get ANY mail... turns out to be an autographed backpack from Daniel Carter, and a scarf and drink bottle... all authentic All Blacks stuff!!!! WOW!!!! Apparently organised by Dai Henwood and a lady called Sara, bless their cotton socks

11am - back to outpatients to have Logan 'admitted' NOT ' committed', although the later is a serious possibility

1pm - back to the house again, to collect sanity... Logan craving Indian... off again to look for restaurant

1.30pm - find a little place in St Helliers (cant remember the name). Great, tasty meal, but rather mild on the heat for medium. Plenty tho.

2.30pm - Drove Logan up Queen St - which has become quite imposing since we last drove through it. Consequently Logan wanted out quite quickly and we headed back to Ronald McDonald house.

We will be leaving here at 7pm to head up to the ward for his next round of chemo which will begin in the morning. His fluid starts tonight.

If you dont have a google account, please sign up (its free), so that you can reply to Logan.  He doesnt think anyone is reading this, so doesnt see the need to write....

Getting closer to T day now (thats transplant day). Possibly around 4 weeks... they are still co-ordinating dates and departments and stuff!!!!!

keep smiling all

Tracy

In a hurry so just a quickie tonight... (he he he)

Hey all,
Such a busy day. Logan was lights out by 9pm tonight and I am just down at the computer suite in Ronald McDonald House doing this for all of you!

Up at 7am, and shot off to the hospital to his appt with the Radiation people at 8am. Took forever to get a park, but we eventually made it. They were soooooo nice. To cut a long story short (we will elaborate later), they made a mask out of plaster cast of his head.  Today they were to convert it to a clear plastic mould which they will use to hold his head in place during the cranial radiation.  It took longer to get the carpark, than to do the mask!

Afterwards I took Logan to the Wintergarden (which have nothing on our Hamilton Garden's greenhouse), and then back the RMcD. At 11am, we took off to the North Shore and had a surprise visit with my sister Carolyn, folllowed by lunch with my Mum.  Stayed there for a couple or three hours, before heading back to chill before we cooked up dinner.

A quiet relaxing evening was had by all! I ended it by watching a man on t.v. give birth (I know....).

Anyhow, blessings to everyone, and to all a good night

luv Tracy

p.s. photos are to follow.... tried to upload them at Nana's today but her computer didn't like Logan.....

Just another day in paradise....

Here we are... another day in paradise. Evan, Charlee and I woke early this morning and headed down to breakfast, leaving Logan to sleep in (as he usually does). We have two swipe cards that we shared between us, making co-ordination important when moving around the building... come down without one, and you cant get into the dining/lounge area, go up without one, and you cant get any further than the outside of the lift on our floor! Anyhow, back to today. This morning was a hectic rush of appointments for both Charlee and Logan. Charlee had to meet with the transplant team at 9am, then after meeting a few friends at med school, had another appointment at 12.30 with the vein people. (She has beautiful veins). Meanwhile, Logan and I had to race up the hill for a 10.30 appointment (luckily we met Evan part way and he pushed Logan, (cause he weighs a ton now). We waited for an hour, whilst listening to the fire alarm blast, until we got in to see the transplant lady, to find out that our bloods weren't through, and that we needed to go away and come back later. If they were good he would be admitted tonight. If not, we would wait and see. Having only an hour till the next appt (and not enough time to make a return trip to the house with the wheelchair), we treated ourselves to lunch. Won't do that again! $22.40 later, for a bap and a quiche, and a coffee! AHHHHHHHHHHHHH!

Off to Radiation therapy from there... where Evan caught up with us. Charlee was allowed to drop him at the hospital and drive his car back to RMcD house. We met a wonderful doctor who explained all about the radiation Logan is to have. And true to form, most of it went over my head. But it was reassuring at the time... sorry I cant explain it in detail! This is what I can remember. Logan needs the radiation because the cancer hides in special safe places (that I wont name) and cant be reached by chemo. Consequently, it comes back when we think he is cured. The chemo into the spine helps to reduce this, and the radiation will KILL OFF all his bone barrow and eveerything in there. This becomes a point of no return. The regimen will begin with 6 days of radiation to his head, each session taking about 15 minutes.  He will be an out patient for this and we will stay at RMcD house. After this we will move into the hospital and he will have total body irradiation (TBI) twice a day  for five days (I think). Then they will give him her bone marrow. Somewhere in amongst all of this he will also be having heavy duty chemo (for good measure). It takes about 40 days for the graft to take.

Correct me if I am wrong (Charlee), but I think she has decided to go with the bone marrow transplant and this may have a fraction less chance of host vs graft than the stem cells. This is not performed much these day (the ratio is about (1:100). But we are just grateful that she is offering.  It is a huge thing, and no-one would have thought any worse if she had chosen not to.

So, anyhow, after the meeting with doctor somebody, Logan went and had a CT scan done, to check the density of his body (radiation is done by density, and they make a virtual rectangle to radiate using his body and foamy stuff to even it out). I did a jigsaw while he did this! Next we headed to a radiation room to check it out, and to 'measure' him. Was interesting. They laid him on a table, which was sort of like a chair leaning backwards! They measured him from every angle, and then when we had finished there, it was back off to oncology outpatients (its now 4pm)... have I lost you yet?

Once back there, they said his bloods were still too low (neutraphils are 0.7), so he cannot start chemo tomorrow, but he couldn't anyway as we have an appt with radiology for the next two mornings.

Thursday morning: have a mould made of Logans head for the treatment. I will take phots for you!

Friday morning: fit the mould, and then do a practise CT scan to check they have got the overall density right.

So more early mornings, and this bloody hospital is built on a blood big hill!!!!

The good thing is, while Logan is doing this, I can do the jigsaw that they have laid out for passers by! I love jigsaws... they have said I can borrow one... yippee.... nice nursies!

Well, Evan and Charlee have gone home(6pm) and we have finished our dinner.  I miss them already, and they only left an hour ago. Its lovely here, but as Dorothy said, there's no place like home!

You can call here anytime direct. Just look up Ronald McDonald House Auckland. Make sure you look for the one that says Grafton Mews (there are 2), and ask for, or press room 501. If we arent here leave Logan a message. We cant call you back, but if we are here we love to hear from people. 

They are going to retest his blood again on Friday and if he meets the standards, will be admitted for chemo on the Saturday. If not, they will test him again on Monday. (Apparently Aucklander's dont work weekends).

Love to you all.  I will put up photos as soon as I can find a SD card reader!

Tracy

A comical suprise

Hiya guys.
As mum predicted I am blogging tonight, it was rigged I says.
But more on that later. I've been meaning to blog for a while, but just couldn't find the effort. Why would I blog when I could be watching Simon and Garfunkel's concert in central park (1981), chatting with 3 friends at once and downloading a new steam game? But today has seen the amount of news reach critical mass.
On Saturday, my hair became a problem again, and so me and mum went out on the deck to comb/pull out all the loose stuff. To put a long story short, dad joined in and together they plucked me like a chicken, leaving only a few fuzzy bits on the top and back. So when you see me next when we are out and about, expect a beanie because of the weather or my good old Fedora.
Today saw an early start to the day, as we had to be up here in Auckland by 10am, for Charlotte to attend a meetings required for her to be my Donner. It was a tight run thing with traffic springing up 20 minutes from our turn-off. But we made it with negative time to spare. Charlie made her meetings.
Now, to this mysterious event that I'm sure many of you are dieing to hear about. Do any of you watch "7 Days"? Well hold that in your mind for a second and I'll go from the start. Me and mum had headed down to the dining/lounge area here at the house to play a few hands of cards. After a few minutes she texts charlie (who is in our room) to come down and join us. 10 minutes after she does this, she gets a text of her own, which she says is from my auntie Caroline, saying that she is at reception. No one is there, and it eventually becomes clear that they are at the wrong Ronald McDonald house. So after further discussion and directions, we head up to a second floor deck which has couches to wait for them. Mum goes off to wait forr them outside a gate, and eventually walks off to find them, leaving me and Charlotte to chill. After 5 minutes I see someone that looked like mum, walking with a man. This is what went through my head, "that looks like mum. But shes with a man, and mum was getting Aunty Caroline, so it cant be. No, that is mum, she must have met an old friend. Wait! Is that who I think it is? It cant be. She hasn't! Omg thats Dai Henwood." And yes I was not mistaken. Somehow, mum managed to get in contact with Dai, and convince him to come visit us. So we spent an hour and a half chatting. Moving from the deck because of the sun, to our room, and eventually to the lounge. He's a great guy, a huge laugh, but very down to earth. In his own words he's "just a kiwi, trying to have a good time." He also left me with a CD and DVD of his work, which me and mum watched a little while after he left.
So yea, its been a good day. But like mum said, we're up here for a week, so I have a feeling that the fun will dissipate rather soon.
Thats all for today, photos will be coming soon.
Untill next time children, be good and stay healthy.
Logan

Staying at Ronald McDonald House on Grafton Mews

Hey all,
Today is Tuesday and we are staying at the lovely Grafton Mews... the same place that Charlee and Evan stayed last time.  It is nice to be staying here all together.  We have a lovely room (501) on the first floor which overlooks the carpark and bush.  Today, Charlee went to have her ECG, chest xray, and bloods done. Tomorrow she meets with the transplant team at 9am, and then at half 12, heads to Epsom to meet with the NZ Blood Services for a vein assessment... making sure that whatever they use is big enough to do the job. They have several options: arms, neck, or femural (thigh). Meanwhile, Logan and I, and possibly Evan (he gets split between Charlee and Logan), will attend his Transplant appointment in the morning, and then a meeting with the Radiation team after 1pm.  Busy, busy busy! Then later in the afternoon we will meet again with the oncology outpatients, and if he is well enough, they will admit him again to begin chemo the following day. If his bloods are still too low, I guess it will be delayed.  His neutraphils need to be at least 1.0 I think. But tomorrow is another day. Check back this evening... I have a feeling that something awesome will be happening today.... call it mothers intuition... (some call it medling)...

p.s. thanks to the lovely lady and her daughter, for their gift yesterday.  Thanks also to the other lovely lady for taking me grocery shopping yesterday, and thanks to my wonderful Uncle for your help tooo!!!

love and hugs....

Please feel free to visit us if you are an Aucklander!!!

BRAD'S GOING TO CANADA

Hey bloggers!

Brad got some good news today.... He has been accepted into a volunteer programme to go to Canada for 9mths and work with youth and disabled people in camps through a proramme called Lattitude (lattitude.org.nz). He will be using all the skills that he has learnt as a member of JuNats (Hamilton Junior Naturalist Club), about bush safety, tramping, first aid, bush craft, kayaking, snorkelling, abseiling and living in a sustainable environment, whilst acting as a role model and leader.


!!!BRAD NEEDS YOUR HELP!!!

Brad needs to get together up to $8500.00, to cover fees, air fares, and insurance for the trip. 

We are hoping to get sponsorship, donations, grants, etc, from private individuals, groups, clubs, organisation and businesses who may be interested in helping.


Brad is willing to promote your company in any way possible, before, during and after the trip, and to give a presentation of what your assistance enabled him to achieve, when he returns.  


Someone reminded me how important it is not to neglect the other children whilst Logan is sick, and although he has not asked for anything, Evan and I need to do everything that we can to help Brad to achieve his goal.


Please show this blog to your bosses, colleagues, friends etc, and see if anyone can help... We will be forever grateful.




sincerely
Tracy and Evan

Its a good day...

Well, today went remarkably well.  We visited Logan's Hamilton oncologist, Michael, and he was impressed with how Logan is doing. I asked him his opinion on which would be the best transplant for Charlee to give.  He said if it was his daughter (and he wasn't pissed off with her!) he would totally suggest that she do the stem cell transplant. If neither has more benefits than the other (which is what Starship has said), then the one with the least impact on her is the stem cell. It will be over and done with in a day, with little or no pain to her. Whereas, a bone marrow transplant will require a general anaethestic, and she will have pain for quite some time after as her body recovers from the many holes that they will have to dig into her bones.  But in the end, the choice is hers, and we will go with it. Logan will be forever grateful that she is giving him this chance.
Logan's bloods are slowly on the rise, but he is still severely neutrapenic and in danger of infection.  Michael has put him on some more oral antibiotics to ensure he stays well.
Visitors are welcome.  Just leave your colds at home. We have masks here to use. Logan loves to play cards and talk so come and keep him company.  If you have any siblings with colds or bugs, keep a wide berth.

The house is very quiet without Emma. I was always tripping over her every night when I got up to check on Logan. She followed me everywhere, all day, everyday. We were so lucky to have her for as long as we did, and blessed to be with her in the end.

Take care
Tracy

Goodbye Emma Jane....

Sadly, today, our family dog Emma Jane, passed away. It was quick and she didn't seem to suffer. We were glad to be with her when her tired body had had enough. She collapsed slowly to the floor and I held her in my arms for several minutes while she slowly slipped away. The boys were with me. It is the end of an era, now that she has gone. The same age as Logan, and only 12 days past her birthday. We laid her to rest in a sunny spot between Logan and Charlotte's room. Tomorrow I will plant daisies where she lays.

On a brighter note, thanks to Nana and Grandad who brought over a couple of groceries (that filled their boot!) and to the lovely lady who brought us dinner. We are always so grateful.

Logan is having his last set of IV antibiotics as I type this. Also, we got his results today. His platelets are UP to 26 (they should be between 150 - 400), and his white count is 0.3.  Needless to say, he has no neutraphils, and no immunity, so we are on the extra alert to keep him bug free. We have another appt with Michael tomorrow afternoon. He wants to give Logan the once over to keep him healthy.  Then its off up to Starship again on Tuesday morning to stay the night at RMD house.

Well, I have taken up facebook WORDS... so addictive, so I am going back to that...

hugs to all
Tracy

Pain, Infections, nurses, and smiles

Hey all,
Well, after being flat on his back for four (4) days, Logan is finally upright today!!!!!! We'll see how long it lasts, but so far, so good. As I said previously (I think), Logan had a slow leak (kinda like my tyre), from his spinal fluid, making vertical positions painful. However, he has mastered sitting today and is enjoying looking out his window at the chickens and small birds which flutter around our back lawn.  And before you ask... no! we did not see snow yesterday... we had texts from everyone around Hamilton and Te Awamutu filled with excitement, but it missed Hamilton East (we forgot to put our order in).
Anyhow, on Saturday, we went back into hospital again (did I tell you that?) as he had a fever. A phone call on Sunday to us, revealed that he had a staphylococcus infection (and yes I looked up the spelling on the web). So they said he would have to stay... Logan kinda didn't want to curb his free time, so we negotiated a get out of jail free card by suggesting that the DHN come and do antibitoics at home (I'm sure I'm repeating myself!).
To cut a long story short, he was doing great... until a phone call yesterday said that he was very low on platelets (only 10 when they range is 150 - 400!). So I raced him up to outpaients to get a transfusion of them.  His first one. They look kinda like apple and pear sauce.  It was quick tho, only half an hour, and then we were heading back home.
Since then Logan has improved greatly, and as I definitely mentioned, is now sitting up.  We assume the platelets did their hob and plugged the hole!.
I also had a call from Starship today to let us know that Logan will be having a load of appointments on 24/8 so they have pushed his chemo back a couple of days. We will still head up on 23/8 as we cant afford to get stuck in traffic. His first appointment is at 11am with the Haematology and transplant team, followed by a 1.20pm appt with Radiology.  This will be the first time that we hear what the radiation plans are and their protocol, and how it affects Logan. We have had a tentative date of radiation conditioning (stupid word, has nothing to do with making him smoother, stronger or shinier), which is 19 September. From this date, as far as we know, Logan will stay in Auckland until the completion of his treatment. So that would be a good time to start practising your writing skills and send him cards and letters.  It gets severely boring up there.

Ellyn checks to make sure that Logan's heart really is beating... she is not one to take your word for it!

Logan and Ellyn, always joking around. He decided the duck bill mask looked better on top of her head than on her face... 

Sparky, Logans cat... the nurses keep trying to move him, but he stays devout. Of course, it could also be something to do with the fact that Logan has the sunniest room in the house!

Today his Adolescent liason nurse, Ellyn, came to give him some drugs and visit... not necessarily in that order. She always makes him smile. We have been blessed to have her to guide us thru this journey as it has not been easy. She makes everything seem less scary and more normal. She often laughs and sings with Logan. They 'get' each other.
Until we chat again...

stay well and remember... hugs are free, but have so much value, so go give someone you care about a hug... RIGHT NOW!
Tracy

And things heat up!

Well, we didn't want to stay home and watch the rugby anyway!

Logan spiked another fever this evening, and as he is severely neutrapenic, we had to take him back to the hospital A and E. Credit to them, we ring to say we are coming up, and they prepare a room for us to go straight into when we get there. They did bloods again, and cultures (the latter wont be ready for 3 days). We found out that all his blood levels have dropped dangerously low, but in true Logan fashion, we requested a home pass, and they have arranged for the community health nurse to come every 12hrs to put his antibiotics thru a drip.  Poor CHN; I dont imagine they enjoy evening house visits.

So apart from having to get up every three hours during the night to do his obs, we are pleased to be home again. Evan is belatedly watching the rugby, whilst I do this, and Logan sleeps.

Catch ya'll on the flip side.

Tracy

p.s. Thanks to my dear friends who took us out for coffee today and gave us a really awesome break... It was lovely to smile and be silly for a while!

Oops... he's leaking

Had to pop back up to Waikato A & E again yesterday morning by ambulance... the boy wasn't able to sit up without a blinding headache and was experiencing a stiff neck on and off. So we had a fun time catching up with the loyal staff up there... Even the x-ray lady said hello, remembering him by name, and he didn't even have an x-ray!

Anyway, the long and the short of it, according to Michael, is that the lumbar puncture hasn't sealed and he's leaking spinal fluid... a first, even for Logan. Consequently, when he lays flat, he is comfy and the fluid balances and the world is at peace. But when he goes vertical, the fluid becomes unbalanced (as there is less in there) and intense pain hits. So we came home again, with orders to stay horizontal and wait it out. I decided that is what teenages do anyway so it shouldn't be too difficult!

His temp is up a little today, but that's no shocker as he has very few white blood cells to protect him.

Will get him to write soon, but it is hard to type laying down... or so he says! He bought himself a Nintendo DSi from his savings the other day (thanks to Paul and Yvonne who actually did the shopping) and this seems to be what he does all day at the moment... he hasn't complained yet. 

He would love some visitors, but only one or two at a time, and you will have to mask up (and yes we provide them!). He is so over looking at his parents that I wouldn't be surprised to find him escaping out his ranch slider!

Until we catch up,
Stay well and happy

Tracy

Man... is it good to be home or what?

Logan chilling in his new digs at Starship... much flasher than what we are used to.

Just unpacked our stuff... the usual ginger beer for logans stomach and my groceries. The desk came in handy, as did the couch which folded up so that the bed (below) could fold down.

Storage and the large cupboard on the left pulled down to provide a sleepyhead mattress and a comfortable sleep.

Up high we have Logan's flat screen TV with a pin board below, and to the left his bathroom which he shared with a boy next door.

Aluminium doors opened onto the corridor which are brightly decorated with large motifs. Logan was located in the teen section of the ward which included a teen room supplied by Canteen.

Uncle Dean and Aunty Nikki came to bring sanity several times... not to mention yummy food!

Charlee came for the weekend with daddy, and helped to thread Logan's beads, which he is wearing.

The boy and his Dad.

Me and my not so little man!

Visitors for Africa! Paul and Yvonne, Dean and Nikki, and Daddy and Charlee... Here we are camped out in the Canteen room... It is strictly for Canteen members and has a number code on the door.

Daddy chillin out at Ronald McDonald house... very flash digs... at no cost... such kind people.

RMcD shared dining room with graffiti art walls... very cool.

The shared kitchen area of RMcD.

The view from our hospital room... looking over the top of the hospital carpark and out over the city to the sky tower. (Parking there is $20.00 per day, so my bill was $160 when I left... but luckily I heard about parking vouchers and only had to pay $10!)

The left end of the carpark, which also doubles as the helicopter landing pad... very exciting... for a while!

Hey all,

Well, we all made it home in one piece.  There was very little traffic and only a light rain to welcome us back.  A huge thanks to Paul and Yvonne who had dinner waiting for us all when we arrived home... crockpot and all! It was delicious... Thanks also to Carol who arrived shortly after with a truck load of Logan's favourite vegan cookies (the only thing he eats with no dairy or meat!), and a koha to save me from my baked bean diet!  Evan and I are always amazed at how blessed we are to have such wonderful friends.  But I wont forgive you for making me cry!

Getting back to business... The meeting went well with the transplant team. In a nutshell, this is what we found out... Logan will have blood tests every few days until we head back up on 23/8. We going to outpatients then for the standard once over, and then they forward us to inpatients to begin the chemo again.  Logan toleratd the chemo last week exceptionally well, including the intrathecal (into the spine). He is only slightly tender from the bone marrow biopsy.  Charlotte will have a private team that handles the donor side of things.  She will be handled as a totally separate entity to ensure that her needs and rights and met, and that there is no pressure for her to do this... She just laughed and said "yeah right! no pressure... like I wouldn't save his life".

When the second round of chemo ends, he will again have the intrathecal (lumbar puncture chemo), and we will come home for another couple of weeks.  This will probably be the last time that he comes home till after the transplant. The decision over whether to do a bone marrow transplant or a stem cell transplant is totally up to Charlotte. The team feel that neither one is significantly better than the other, so the choice will be hers. She is taking this quite seriously and has been doing lots of research.

At the end of the two weeks, Logan will go back up and will have a scan (CT or PET). If they feel he has achieved remission again, we will launch straight into the radiation therapy (if not we will repeat the chemo again in two - three weeks).  We will stay at Ronald McDonald house while he first has, cranial radiation, to get any nasty cells that are still around the brain, and then daily full bodied radiation (we are to meet with the radiation team soon). Sometime during this, we will move into the ward again. 

Immediately after the radiation, he will move into the transplant area (I think) for the final prep with extra high dose chemo to totally wipe out his entire immue system.  During this time, Charlee will be having daily injections of GCSF to stimulate her stem cells. Immediately after the radiation She will be relieved of a significant amount of stem cells, one way or another, and they will immediately be inserted into Logan through the line in his chest. Apparently they have an automatic homing system and they find their way to where they need to go in the body.  

After about two weeks, his blood tests should show an increase in the cells that he needs.  It is also during this time that his body will begin to fight against the cells as no self respecting boy cells are going to let a bunch of girl cells invade their body (gender irrelevant of course). They will pump him full of immune suppressant drugs to help his body to cope.  Apparently, if we do a blood test on him at about this time, his blood would be female rather than male! LOL! 

There are the usual risks of all transplants, but these are greatly reduced by having his sister as a donor. As the doctor said... he is at greater risk of the lymphoma that the transplant, so we need to keep that in mind and keep all our positive energy flowing into him.

After the transplant takes place, we will remain in isolation for up to six weeks, and then move to Ronald McDonald house and continue to meet with the docs every couple of days for at least two weeks.  So in a nutshell, it will be a long journey, but will be well worth it when we bring our boy home again to the great Waikato.

I can't say enough about the people at Ronald McDonald, and Child Cancer who helped us while we were up there, and the rest of the kind staff who put up with my 20 questions that never ended!

Just so that you know it's not all about me, Logan is still doing well. He is particularly enjoying hot food at the moment... chilli wedges for lunch, and chilli con carne for dinner.  He has turned in for an early night this evening with a bit of a headache, but his temp comtinues to stay low and he has had no nausea or vomiting! YAY! 

Well I'm getting writers cramp, so love to ya'll

see ya soon

p.s. Thanks to my buddies at Knighton who were there for me today, and for your unexpected gift. And if you guys dont stop making me cry... I'll.... think of something when I'm actually awake!

Hugs and wishes for healthy happy families,

Tracy

Quick update

Stayed last night at the Waldorf Apartments. Got lost getting here but the place was comfortable and clean. It's fully self-contained but no food. Catching a taxi back shortly to Ronald McDonald House and will wait there until we have our 12.30 appointment with the transplant team. Wish us luck.
Logan recovered really well from the surgery yesterday and had a foot long subway for dinner.
As I type this, he is still fast asleep (12 hours later).
Keep smiling,
Tracy

And he sleeps...

07.00am - Logan has breakfast

07.30am - Logan begins his fast

01.30pm - Logan is taken downstairs to theatre

02.20pm - Logan goes into theatre with his nurse who is going to stay with him and watch the whole thing (yuck)

03.10pm - I sit and wait for him. I have tidied his room and made the bed, as well as packing up our gear.

NEWSFLASH

We are not headed home tonight :(

They have made an appt for us in oncology outpatients tomorrow morning so we will stay another night. Evan and Charlee are coming up to join us tonight and we will either stay in Ronald McDonald house, or they will put us up in a hotel... either way, the digs are top notch! It will be nice to be together as a family again. It was lovely to see them on the weekend but we were still in here and they were still down there, so it wasn't the same. We have had an awesome nurse today named Dan... We tried to explain the D-Slice thing, but he just didn't get it... so sad. But Logan likes him. Not sure what time we will leave starship this evening, but will pop up a post when we arrive at our digs for the night.

Take care and keep smiling
Tracy

p.s. don't know if I told you about this before but the have this cool patch they put behind Logan's ear called scoberderm, or scoberderm, or scoobydoo, or something like that... it is used to control nausea and stays there for three days, like a stop smoking patch I guess. Could be the reason that he is doing so well!

p.p.s. Logan's nurse just came in and said he is out of theatre - 3.15pm. Both procedures went well.  Took a little longer than they expected because apparently the spinal fluid dripped really slowly.  Effectively, what they were doing, was taking out a sample to test for cancer cells, which coincidentally, was about the amount the needed to remove so that they could put in the chemo....

OK - going for a walk now.... keep smiling and stay happy

1 down (nearly)

Hiya guys, Logan here.
Things are going good so-far in NZ's biggest city. But I can safely say that I am well over glucose tests, insulin and blooming eye drops. But really I cant complain about the room I'm staying in, what with a fold-down bed, fold-down couch, PS3 and wide-screen TV. Things are definitely different up here from what we're used to in ward 25. For example they put dressings over all Hickman sites, and try to avoid accessing my line when they can avoid it (and when they do take a line off, they instantly hep-lock it). Me and mum are certainly beginning to miss all our friends and the comforts of home, we cant wait to escape tomorrow afternoon or Tuesday morning. But all the nurses are lovely up here, It seems to be something about oncology/haematology wards that attract the best/craziest nursing staff. Currently I'm just chilling in my room, listening to music and playing PS3 when I feel like it (I clocked "Ratchet and Clank: Tools of destruction), I also have a pile of pills, that I'm trying to ignore, but I know that I'm going to have to hack into them in a minute. On the up-side, I'm no-longer attached to any pumps, so we may go for a brief walk off ward at some point in the evening.
Well that seems to be all that's happening up our end. Thanks to all those who have visited us and brought food, its always welcome, especially fresh meat!
Well till next time children, Be good and stay healthy.

Day 3 and all is going great guns

Hey all,
Logan and I are three days into our stay at the Starship Hilton and all is going well.  Two more days of chemo and then we can relax Sunday arvo and Monday morning in prep for the general on Monday arvo.  Charlee and Evan are nearly here for their overnight stay and we are very excited. We have missed them and Brad so much.  Unfortunately Brad couldn't make it, but we will catch up with him when we get home, which will either be on Monday evening or Tuesday morning. Thanks to Emma, David, and Rowena who have also popped in from time to time.

We have had awesome nurses today (especially Nikki) and the doc's make a couple of discoveries. Firstly, that Logan's potassium is way too low, so he is having tablets... he is so overjoyed!!!! Secondly, he has developed steroid related diabetes. His last reading before dinner was 15, so he is having to have insulin shots. He wouldn't mind that so much, but unfortunately it also involves finger pricks before and after every meal, and 1/2 an hr after his shot, and 4hrly during the night. He hates the pricks worse!  On top of all this he is having eye drops 2hrly during the day, and 4hrly between midnight and 8am. The boy is becoming seriously sleep deprived!

But, everything else withstanding, we are doing well. Logan's invalid benefit is paying for his meals, as he does not like the ones here. Dean and Nikki have been bringing us food (thanks guys) to suppliment. We under estimated how much we would need, and also ran out of money. The big C is not cheap, as someone wise once told me.  The meat they brought is a welcome change from baked beans or spaghetti! My home eggs didn't last long but were nice while they did.

It's true that you dont know what you've got till it's gone.  We miss the Waikato immensely... Our friends, and adopted family, even the nurses and doctors.  We look out the window to an unfamiliar landscape of light pollution for as far as the eye can see. Our fast flowing point of reference is missing as is the green belt, and the soft white blanket the we usually wake to.

Till we see you all again, stay safe and healthy and hold each other close

Tracy and Logan

Starship rocks....

Well here we are... rocketing through our treatment at starship (I know, bad pun). We arrived here yesterday afternoon. I took Logan for a quick drive around the park before we came into the dreaded hospital.  Having said that, it really isn't that dreadful.  Although looking a little worse for wear, it's an awesome environment for the younger generation. The ground floor, as Logan mentioned is awesome and they even have kids on the inhouse radio in the evening doing Karaoke and chatting. We have met the Northern Health School teacher today and true to form, Logan did his best to stay loyal to Sue in Hamilton by not agreeing to do much whilst here!
Our room is quite modern. Apparently oncology is the only ward here that has been refurbished. Logan has a largish flat screen t.v. mounted on the wall, and a PS3 in his room. I have been allotted a fold-down bed with a sleepyhead mattress. If it wasn't for the machine in our room malfunctioning all night, I would have had a fabulous night sleep! Logan did the usual and peed like a trouper! He is on 1ltr of fluids every 4hrs! Needless to say, he got very little sleep and tried to pretend that the morning had not arrived. They gave us the chemo regimen today for the week... it goes as follows:
Dexamethasone - everyday, three times a day, for five days
Vindesin - just today
Cytarabine - today and tomorrow, 12hrly
Etoposide - Friday, Saturday and Sunday 12hrly
Fluids - 3ltrs a day, everyday
intrathecal injection (into the spinal fluid) - under a general on Monday afternoon

They are also going to do his bone marrow biospy at the same time as the intrathecal so he only has to have one general.

The may release us to Ronald McDonald house on Sunday arvo and then bring us back in for a daystay on Monday to do the surgery. But then again... maybe not!

New rules here... Logan is stuck on the ward and cannot leave if he has a drip attached... no more walks around the lake or park! Also, I dont get fed! But who said you couldn't survive on baked beans and toast?!

Well Logan is happily playing on his PS3, and I might just take a wee kip. If anybody is in the area, we are on ward 27b (7th floor, but you have to use the lifts over the bridge (yes I did say bridge)) and we are in room 3.  Evan and Charlee are hoping to visit Friday night and stay at Ronald McDonald house... The nurse said visiting hours here are open so long as there are no more than 2 or 3 people at a time...

Reminder:::::::::::::::::: please donot bring children onto the ward. They will be asked to leave due to the measles outbreak.

As always
Love and hugs to you all... stay healthy and happy

Tracy and Logan

p.s. have photo's but forgot the cable so you will have to be patient!

Game Plan

Hey guys, Logan again.
We went up to Auckland today to meet our new Oncologist at Starship (his name escapes me at this time, I'll post it at a later date). It was a long drive, and an even longer day. To make things even more fun, as we were driving in on the motor way, we got a call to tell us that my Nana was in North Shore Hospital for unknown reasons. So we quickly dropped Charlotte off at the Ronald McDonald house near Auckland hospital, before rocketing across the harbor bridge to find out what was wrong with Nana. Thankfully it didn't appear to be anything serious, but we spent an hour or so with her chatting (which we had been planning to do anyway at her house), before shooting off to have lunch at a lovely place called the coffee bean. By this point it was time for the whole family to gather back at Ronald McDonald house to see if we could get a tour, which the lovely receptionist provided for us (they even had a Ronald sitting on a bench). Next it was off to Starship to have a look around before our appointment, and I have to say, their bottom floor is brilliant. For those who have never seen it, they have set it up like a forest floor, with floor panels depicting either leaves, grass or water. They had "log" benches and "trees" around the place. Even large 3D "clouds" in the sky, hanging above your head. After a short wait in a canteen lounge we got called by our oncologist Mark Winstanley (I remembered down here) to discuss my treatment. Basically he said that he has a new regime for me, made up of some drugs I've had before, some I've heard of, and some completely new ones (one is intrithecal(goes into my spine(they knock you out at starship))), that are used in relapse patients, that were on my original regime in Britain. This will continue on 3 week cycles (5 in, 16 out) till I'm in complete remission (he doesn't know how many cycles this will require), then they go for full body irradiation. Only after all this do they harvest Charlotte (Mark didn't know if the transplant team wanted stem-cells (gathered from the blood) or bone marrow (you know how they get that)) and prep me for transplant. Apparently they continue the chemo right up to the transplant, even if I'm in remission, to make sure I stay there. I'll have to have all the chemo up at starship, but that doesn't seem too bad, other then the fact that they only provide breakfast for mum (and after we fought so hard for them down here). According to Mark, every room has a PS3, large TV and a fold out bed for mum, other then that I know very little about the facilities. We head up tomorrow afternoon to get admitted for Wednesday chemo. But before the chemo starts I get to have a bone marrow biopsy, Yea boy, its going to be mean fun (sarcasm(not about the biopsy, but the fact that it'll be fun(because it wont be(but at least they will knock me out(apparently that's general practice at starship(which I think is great because I hate pain(well I guess everybody does at that(except the people who like pain(but they're just weird(but who am I to say who is weird and who isn't(I really like brackets)))))))))). Other then that we are just going to roll with this first week, possibly meet up with the transplant team at some point during the treatment. Visitors would be more then welcome by us. Except we cant guarantee that you will be welcomed by the staff, who are apparently trying to limit visitors because of the measles outbreak which would cause untold damage in a ward where many of the patients have little or no immune system.
Well I think that is most of what has been happening, although I may have missed something, But I'm sure mum, dad or Charlotte will fill in any gaps I've left.
Thanks for reading this reasonably long post, and the even longer one last time.
Till next time children. This is Logan signing off, saying Be good and stay healthy.