Wednesday, August 10, 2011

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,


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