Thursday, July 28, 2011

Swing once........ Swing twice...... HOMERUN!!!

Guess who everybody. LOGAN'S BACK BABY!!!
I'll start the post with the usual, sorry I haven't posted in ages. But to be truthful, I haven't exactly had much material, what with mum, Charlotte and dad posting all the time. But I have some news this time, and since I'm here, I might as well do a quick re-cap of recent events.

OK, so after all the make-a-wish, and besides the broken leg, my chemo was going great. The tumors were showing signs of shrinking, and I was more then happy to go for a couple of years on this drug.
until..... three and a half weeks ago I developed a headache. I'm no stranger to random headaches, so at first it was a case of, drink plenty of fluids (in case it is dehydration) and a couple of panadol (because why not). The next day it came back, still more annoying then painful. But by Monday it was getting serious, and I had woken up that morning vomiting and light-sensitive, this set alarm bells ringing. So off to emergency, where we spent the rest of that day, getting nowhere with the medical system, and generally feeling like shite. Eventually at around 6 they finally moved me to the now familiar ward 25, where I was met by a lovely lady doctor with a large needle (not a euphemism) which she then proceeded to shove into my spine. I must admit that it wasn't as bad as I had expected, and they she was very competent. Still it's not the sort of thing you feel like after a long day, and for some reason I didn't have much of an appetite afterwards (if I had known what was to come, I would have forced myself to eat then). And so for the next 7 days, we sat, mostly in the dark, I ate very little, and what I did manage to get down, often came back up a few hours later. We also got very little sleep, partly attributed to midnight pain meds, and the subsequent vomiting. partly the fact that neither me nor mum could manage to sleep even when we had the opportunity, leaving us both tired in the morning. Other then another spinal tap on the Friday, the days were fairly uniform, we would wait in the dark for results. And the doctors to figure out what was wrong, give me a pill, and send me home. That was until Wednesday, when I took a turn for the worst, having what appeared at first glance to be a stroke. I had been headed for the bathroom across the corridor, when I lost feeling in the right side of my body. This scared the daylights out of my family, with dad, Brad and Charlotte all rushing up to the hospital from their various works. This was a weird day for me, and despite all expectations I remember it all vividly. I can't say I felt scared during it all, more confused, and frustrated that my limbs were rebelling against me. The next day however, I felt fine, thanks to a HUGE dose of steroids. In fact, all my earlier symptoms (headaches, vomiting, light-sensitivity) had all gone as well. This last episode, and the results of the second spinal tap, which finally arrived, allowed the fabulous (although we did doubt his brilliance for a little while during that long stay) Dr Jameson to finally diagnose me with Lymphomatous Meningitis, Which is basically meningitis caused by lymphoma cells. Meaning the lymphoma is in the fluid around my brain and in my spine (pretty certain its the same fluid, but cant be sure). And unfortunately, the drug I was on (Vinblastine) doesn't go that deep. So off that! But that left us without an obvious plan, because, with the cells in the spine, it becomes a whole different ball game. So off go emails to the states and Auckland, to see if they have any ideas. But while that was happening, we had no need to be in hospital, so on Thursday evening we finally escaped, after 11 days of hospital. We were expecting a full week, until next Friday, and other then a headache the day after we get out (which Micheal sorted with a large 10 pills of steroids (we were supposed to be on 2 a day)) we were looking forward to it. But not two days in on the Saturday, we get an call saying we were going to have to come back in on the Monday for a dose of Methotrixate (one of my original chemo drugs) and the subsequent days of the antidote, folinic acid. All up this takes about 4-5 days, so effectively taking up our free week. Everything went as planned, although when we arrived on the Monday, we were scheduled for a CT scan, which no one had thought to tell us the time of. luckily we arrived in the car-park just as I was supposed to drink my first contrast, meaning we were only a little bit late, and I easily caught up with the drinks. I was also supposed to have a bone-marrow biopsy, where they drill into my bone and take some marrow, but I refused unless they knocked me out. Micheal was all for it, but was unable to organise an anesthetist and a theater room together, in-time, so he just decided to do without. With massive skill, we managed to get my Methotrexate

I even managed to get out and have an adventure day yesterday, out at a place called Off road NZ, where me, mum, dad, and rosemary went on a bus safari, did some archery, and shot clay pigeons. We had the best of time.
Mum and Rose going through "roll me over"
The crazy drop know as "The Luge (parachutes for hire)" 

  We spent the evening watching movies till we were all to tired to stay awake much longer, before we crashed and I had the best nights sleep in a long time.

Today we had another appointment With Micheal Jameson, that had been planned for many weeks, even before I got sick. We had a X-ray scheduled for 2:15, which the hospital system managed to lose, putting us a little behind schedule for our 2:45 appointment. But the wait was worth it, Because the X-ray showed reduction of the few nodules they had noted in my lungs. Also we got some good news, a few weeks ago, me and my sister Charlotte had blood taken for a tissue typing, which checks to see, that if i need a transplant (which I do), whether Charlotte could be a donor. The brilliant thing is that she offered, before they asked. I love my sister. But anyway we got the first yes a few days ago, so she was half way there. And today when we were talking with Dr Jameson he mentioned that he had got an email from the guy doing the test. Drum roll please............ AND WE ARE A MATCH!!!!!! So as far as I can tell, my sister will be donating the stem-cells that have the best chance to be accepted, since she is only full blooded sibling. So fingers crossed that when I do finally go for a transplant, all will go according to plan. Speaking of plans, our plan for the next couple of days is the same as it has been for most of the week, relax, rest and make the most of being home. We head up to Auckland on Monday to meet the people at Star-ship to get all the details about transplants and that sort of thing. To tell the truth I think it's simply a meet and greet.

But I think that brings us completely up to date. Can't think of anything else so guess I'll wrap things up. Feel free to visit if you want, visitors are always welcome.
Finally, as always, Be good and stay healthy.

Friday, July 22, 2011

We have lift off... at Starship

Hey all,
Michael phoned again today. He had heard from Auckland.  They have decided to go with an allogenaeic transplant... I probably spelt that wrong. We have half of Charlee's results back. The first result is a match.  If the second is also a match, we are away. Michael has said that Logan will not have any more chemo before we go to see Starship on August 1. He doesn't want to mess with anything that they may want to do. The methotrexate seems to have done some good, so he will rely on that to keep Logan in a holding pattern.  Should things change in the next week, we will give him another huge dose of steroids.

He can't be feeling too bad, cause he is out this evening at a movie night with Rosie and friends - leaving Evan and I (and Paul) to have a quiet evening together... there is something to be said for this empty nest thing!

So there will probably not be much news in the next week, but I will post if something else happens.  Logan, Brad, Charlee, and Evan and I, are all planning to head to Starship for the meeting, so that we know, as a family, what is coming up.

Take care all,

And we are home again...

Yay! we got out last night! Michael sent word that Logan's levels were low enough for us to make a break for it.  He knows that home is where the heart is.  Logan is still having to take meds every six hours for another day until his levels are totally non toxic. As Michael says... he poisons Logan and then gives him the antidote...

The brains are having a meeting today at Starship, in Auckland. We will be phoned or emailed to let us know which of the options they are going to run with.

Thankyou to all of the people who have visited Logan, especially over the last few weeks. Logan has been showered with gifts, cards and baking. We have had card games and movie sessions. Logan found a new comedian that he liked (thanks Nell), and I learnt to crochet again (thanks to Nell and Carol).

Will keep you all posted.  Hope you younger people are not driving your parents nuts already... and parents... enjoy the moment....

Quote of the day:

Life is not measured by the breaths that you take, but rather by the moments that take your breath away

Tuesday, July 19, 2011

Back into hospital

Logan starts chemo again today.

He & tracy are on Ward 25, room 19 for those wanting to visit - everyone is welcome.

Sunday, July 17, 2011

It's a good day...

Today is wonderful.  Logan had a bit of a bad day yesterday, so I gave him a huge dose of steroids, and it put him right.  Lots of visitors today and yesterday have kept us all busy.  Thanks also to the lovely people who continue to bring us dinner.  You are so kind. Tomorrow we go in for CT, Xray, blood tests and bone marrow biopsy. Logan is refusing to have the bone marrow biopsy unless they knock him out.  And I cant blame him... so much pain would wear anyone down. We will be checked into the Chateau Waikato tomorrow and the chemo is due to start Tuesday.

The sun is shining and the birds are singing... (or they were before the sun went down). We will have to wait another two weeks to get the results back of the cell match.  If not a match, I will be putting out the call for all people willing to be tested to be donors...

keep smiling and stay healthy

Tracy and Evan

Friday, July 15, 2011

And the plans change again...

Hey Everybody,
We had a phone call from Michael this afternoon.  There has been a change in plans (yes again).  He has been having dicussions with Auckland, Australia and the States and they have decided Logan will be best treated here.  We think so too... home is where the heart is, and we have all of you... that has to be good for his healing.

They have given us this weekend to chill out and relax.  On Monday we will go back in.  Logan will have blood tests, a CT scan, xrays, and a bone marrow biopsy.  He will be heavily sedated for the latter.

Tuesday morning he will have fluids, followed by Methatrexate.  Then over the next few days he will receive the usual antidote to get the levels down again.  He will also continue to receive the steroids he is currently on. 

The doctors had originally thought that the steroids would tide him over for several weeks, and that we would make a decision within the week and get organised.  They have changed their minds (I know... shocking), and want to keep Logan safe by giving him a short dose of chemo that will also get into the spinal fluid and the meninges.

The plan after this, is in the very near future, to put Logan on high dose chemo.  This will either be at Waikato or Starship (rather than the adult Haematology in Auckland Hosp) by the sounds of things. This will not last as long as his first regimen of chemo.  After it is completed and he is in complete remission, he will have full body radiation and then receive a stem cell transplant. It sounds as tho they prefer to give him another persons rather than his own.  Having said this, they will spend the next week or two nailing down the fine details.

In Logan's words... we will never stop fighting!!!!

Our boy is such an inspiration... I often wonder how I have been blessed with such a loving, humble child. His inner strength often makes me look like a muppet!!! 

So come Monday... send texts and phone.  Let him know that you care.  He loves getting your texts... especially on his phone rather than mine. You can also ring the ward. Waikato hospital number is 07 839 8899 and just ask for ward 25.  Visits are always awesome. Especially you young people! Come and give him shit! Charlotte and Dan came up the other day. They brought bubbles and glow sticks.  Along with Rosemary (who was already visiting) they put him in his wheelchair and raced around the ward blowing bubbles at the doctors, nurses and patients, and handing out glowsticks to nurses they liked!  He had the best day. Keep coming up young people... he needs you.

Keep smiling and stay well
Live for today... it is beautiful
Tracy and Evan....

Thursday, July 14, 2011

We are home

Friends and family are welcome to visit.  Logan is feeling good and would enjoy the company.

And so we have it...

We spoke with Michael this afternoon. He has confirmed that they are almost 100% certain that the lymphoma has progressed to the fluid around the brain. This is known as Lymphoma meningitis (or something similar). It caused the swelling around the brain, which in turn caused the episode that Logan had yesterday afternoon.  There appears to have been little or no permanent damage done thank God. And he has returned to normal.

Basically we are down to two options (which is better than one!).

There is a trial over in the States which Logan may be elligible for... we are waiting on information (involves taking a pill).  But this would see me travelling to the States with Logan and staying there for several months without support from family or friends... neither Logan or I are too keen on this idea, but will consider it.  It also has financial implications.

The other option is high dose chemo followed by a cell transplant.  This would be done in Auckland. For this we will need a donor (Charlee has already been tested for compatability - we are waiting for the results).  Michael said there are pro's and cons to this.  A bonus being that the donor's cells can also help fight the lymphoma. A concern is that the recipient can end up with host vs donor and reject, creating even bigger problems.

Michael is talking to people in the States, Australia, and around NZ to look for help and ideas.  We will have to make a decision in the next week or so, but the steroids that they are using to bring down the inflamation also kills the cancer short term... buying us some time.

Logan is a fighter and said as much.  I guess we will all be taking this new information on board over the next few days.  Thanks for your support.

Tracy, Evan and Family

We have improvement Houston!!!

This morning Logan is showing vast improvement. He has been on high doses of Dexamethasone, which is a steroid.  They are sending him for a MRI this morning.  He has been assigned an awesome nurse who is at his beck and call, and will go down with him for the scan.  He has had a milo this morning, and is talking about eating. He remembers most of what happened last night, but and said it was scary.  Everything is almost back to normal, with the exception of his right eye which is now dilated (it used to be his left).

Will keep in touch
Tracy and Evan

Wednesday, July 13, 2011

And it all came crashing down....

At around 3.30pm today, Logan suffered something like a stroke.  It appears it was caused by the lymphoma, which also appears to have infiltrated his spinal fluid... the bastard!!!

Logan was perfectly fine one minute, then gradually, over a few minutes, lost feeling in his right arm, and also lost the ability to form words and thoughts easily.  We were on the way to the bathroom at the time, so did an about face and headed back to bed where he was accosted by several nurses, followed by several doctors. It was then discovered that he had lost all feeling in his right leg as well.  His smile looked as tho a dentist had been let loose on him.

Once Michael Jameson arrived he was given Dexamethasone, followed by another, larger dose, of another steroid.  They are hoping these will reverse the effect on the brain.

They are monitoring him regularly and Evan is staying with us up at the hospital tonight.  We sent Charlee, Dan and Brad home.  Somebody needed to sleep.

As I mentioned before, the unfortunate thing is that it appears (tho it is not 100% confirmed) that the lymphoma has penetrated the spinal fluid.  Tomorrow, when confirmation is received (they want to ensure they get it 100% right), we will discuss treatment options.  The Vinblastine, which is doing a fabulous job on the rest of his body, is unable to get into the spinal fluid.  Michael mentioned several option including a trial drug that we might be able to access from Australia.

But tomorrow is another day, and we just need to get thru this one.  Please pass this information onto others who may know Logan.  Visitors are welcome, but as I said, he is not always able to hold a conversation or even to figure out what we are saying.  It comes and goes.  With any luck, things will have improved tomorrow.

In the morning they are sending him for an MRI to see what, if any, damage has been done to the brain. 

Please remember him in your prayers... he is an angel that belongs on earth... not anywhere else....

Tracy and Evan and family

soooo tired.....

Sleep seprivation... thought it was over when the kids slept thru the night... On the bright side tho, my baby is now sleeping.

After another evil night, I decided to take a more active role in Logan's care plan.  I have stopped his Tramadol, but am continuing on the panadol.  Tramadol can cause vomiting. I have asked for him to be put on a drip, which they are doing as I type this.  And have asked that they consider taking him off the antibiotics.  They are not making any visible sign of improvement.  We have compromised by waiting till the results come thru before deciding on the antibiotics. 

His temp has stayed down over the last 24hrs (yay), but his desperation is revealed in his willingness to drink water, something which he doesnt normally do at all. So far his stomach has stayed in its place since 4am.  (that would be 6hrs torture time).

A new development today... Logan's left leg has started to hurt.  A mummy massage helped to ease the pain enough for him to fall into a doze. His weight has dropped to 68kg...

A welcome surprise came yesterday in the form of his Northern Health School teacher, Sue, who brought a rescue package... labelled LOGANS BOX OF SURPRISES.  Inside, everyone had contribulted to share something with logan from DVD's and CD and even talking books.  He discovered chocolate and baby food (yum) and sweets. The cards inside were mounted proudly on his wall.  Poor Sue tho, walked into his room with me, and said good morning Logan, and he said BLAH into a bowl!  Then he looked up and smiled and said hello, and we all laughed... What can you do.  He got fussed over by 2 Mum's for a while... the things a boy has to do to get attention these days!

Logan is somewhat of a sight to behold when he sleeps.  His Dad bought him a sleep mask, to help cover his eyes and sheild them from the light.  He looks like an underdressed Zorro... The nurses are so kind and even turn off the corridor light in the evening so that it doesnt bother him.

Michael sent word last night that some of the cells had finally been found on the shavings. The were being stained last night and we will have the results today.  Assuming that the cells are not lymphoma as the team are anticipating they are not, we are hoping that they will be able to tell us what the heck they actually are. They have ruled out some rare fungal infections (which are seriously serious), but there are so many other things that we are still waiting on results for.  In the interim, his chemo has been stopped.  Once they know they will restart it or change it accordingly.  They said that minor lumps may begin to appear. We hope not... they are always so depressing.

Logan's broken leg has also been giving him a lot of pain... not unreasonable so. Seeing as it is broken and all. It is also somewhat swollen. Possibly a combination of the tumour growing again and the break complaining.

This morning the nurse came and took bloods for his tissue typing which have been sent to Auckland.  Charlee did hers a few days ago.  She is our first port of call as his only full sibling. We will test further out should she not prove a match.  This is not something that is needed at the moment, but rather a backstop should we need it in the future.

Knowing now, that you are well and truly sick of the sound of my keys, I will finish.

God bless and stay well

Tracy and Evan

Tuesday, July 12, 2011

Mum here...

So what has happened? Not much really... Michael came again this morning.  He said that the pathologists are struggling to find the abnormal cells that were found visually under the microscope.  They have put the spinal fluid through a spinning thing and then stuck the cells in some jelly stuff and are in the process of making cheese type slices of the offending cells (only the slices are microns thin). All the specialist are confused as to why Logan is not responding and also what the actual bug is. Michael has been liasing with microbiologist, pathologist, other oncology consultants, fungal specialists, immunity specialists, and haematologists.... still no answers.  Logan has had a particularly rough 24 hrs. I took him home for a few hours yesterday to see if that would help.  Michael said he might improve. He slept for a few hours, and even ate a small amount of cheese on toast that I made him. But on the way back to the hospital at 6.30pm, his stomach rejected his lunch (my poor car)... then again at 2.30am, then again at 10.30am.  His pain was constant through the night but the temp stayed low thanks to the drugs. Today Michael decided to put him on something to settle his stomach acid, and also a non-steroid anti inflammatory to assist with the pain, by hopefully reducing the swelling around the brain. Logan's neck is stiff and sore. His back hurts.

Earlier in the week we thought that he was improving but he has once again gone down hill. Thanks to Charlee and Dan bringing in this wonder T-stick, I can make regular updates for you.

On the positive side, Michael said that he was responding so well to the vinblastine that missing a couple of treatments wont matter too much, but we may notice lumps and bumps beginning to appear soon.  He also said it is rare for lymphoma to move into the spine... but not unheard of. So I suppose that is good.  Unfortunately the vinblastine does not penetrate to the spinal fluid so if lymphoma cells are found there, we will be discussing another avenue of attack on the monster.

Michael also said that this illness is confusing doctors for a particular reason.... it is behaving like both a virus and a bacterial infection.  He is still not 100% certain that the meningitis is viral, for a whole load or reasons that cease to come to mind at present.

As Evan mentioned, we live in the dark up here.  I try to keep my mind busy with Logan's laptop. Logan aims for unconsciousness. We both often fail miserably. Logan's friend Izzy brought up some lovely lights that shone some spots of gentle colour.  We initially put them in front of him, but as the headache worsened, I moved them to above his head where the glow did not affect him.  Unfortunately the batteries have now run out but the were lovely... thanks Izzy

Thanks to Paul and Yvonne who have been bringing me chick flicks and fantasy (the sci-fi kind!) to watch... awesome at 1am when I am too tired to think.

Thanks to everyone who is visiting and texting and phoning... you DO make a difference...

Hopefully tomorrow we will know that his fluid is fine and they will have identified the bug and kill it!!!!

Love to you all,

Tracy and Evan

Monday, July 11, 2011


Dad here.  No significant news unfortunately.  Logan is still light sensitive so the curtains are always drawn in his room (except at night).  He had another temperature spike Sunday morning, however, when I went in last night he was out of bed which is good.

The doctors are trying large doses of intravenous antibiotics to target any bacteria that may be in the meninges (which are the protective membranes covering the brain and spinal cord).

He is in hospital until at least Tuesday which is when tests of the spinal fluid from the last lumbar puncture come back.

Sunday, July 10, 2011

Another lumbar puncture

Hi everyone,
Charlotte again. Logan had another lumbar puncture on Friday. He was very brave =)
Hopefully we will have the results back soon.
He still has light sensitivity so is staying in hospital until they figure out what is wrong with my little bro!
Visitors are more than welcome as he is going crazy!
Love Charlotte

Friday, July 8, 2011

Still there

Evan/Dad reporting today and it's not the good news we had been hoping for. 

Logan is still spiking temperatures and vomited last night.  The doctors are still unsure as to what is going on so they are running more tests today.  Unfortunately for Logan that includes another lumbar puncture.

He is finding it harder and harder to smile as the days add up and the aches don't go away so friendly visitors are very welcome.

Wednesday, July 6, 2011

In hospital again...

Hey everyone,
Charlotte reporting again.
It has been a crazy last 7 days.
Logan started getting bad headaches and slight temperatures towards the end of last week, but we just gave him some drugs (as ya do) and hoped it would go away.
On Saturday it was still there, but Mum and Dad went out for a well deserved evening at a friends, and he joined me in the garage for my birthday gaming night.
On Sunday the headache persisted, so we persisted even more with the drugs.
On Monday he woke up with vomiting and a temperature again, and couldn't stand any light so it was straight up to the hospital!!
They did some blood tests and discovered he had viral meningitis. Don't freak out, this form of meningitis is not the scary one that kills in 24 hours. Meningitis is just the term for when the protective membranes covering the brain and spinal cord, known collectively as the meninges, are inflamed.
Theres a link if you want to read up some more.
He had a Lumbar Puncture earlier this week also and they found some abnormal cells in the spinal fluid. They are not sure if they are inflammation from meningitis or there is a small possibility they are something else. Logan spiked another temp last night but they are managing to keep it mostly under control. The famous Dr Jamieson is back and he said he is not certain it is viral but either way my little bro is fighting it off well.
The headaches are still coming and going but again, they are being controlled with meds.
He is able to tolerate light now for short periods which is a good sign and even ate toast this morning =)
That is all I have for now. I will keep you updated as I hear more.
Love to all,