A very rough night for Jace with the chest pain rapidly increasing.
Pain meds at 5am were of no use to him.
Neither ambulance or hospital can get a line into him for the morphine.
A huge thanks to his mum who rushed to ours to look after kids
Today we get to pick uo Jace from Hospice at 2:30 and heading back to North Shore Hospital for a respiratory and lung function test.
I called them yesterday to know about the Costochondritis and Tietze as the test can be auite physical and i dont believe Jace will be able to do it. We will still go and see though.
After that we are heading back to Jaces folks where we pick up the already packed camper and head south to spend the night with Amanda Ross and our gorgeous nieces and Jace cant wait !!
On friday we then continue south to visit Jaces uncle Dave , aunty Raewyn and his great cousins Dylan Rick and Ricks great wife Jolene and their kids and Jace is sooooo excited.
On Monday we head back home but this is also Jaces bday and so i believe the plan is to stop in Taupo for a great lunch.
Hospice have REALLY helped to put Jace in a positive place despite his very horrible start to this week and his increased daily pain. ( thanks heaps Hospice team we love ya soooo much ??)
A huge thanks to those who have been able to donate into www.givealittle.co.nz/cause/helpthebarretts (and /or share the site )lately as this has helped us to be able to do this and those who have been able to visit Jace and those who have been able to offer their emotional support. I know ive said it already this week but damn ya keep us going and we love you all for it ????
Have a happy Easter everyone xxx
So Jaces dad and i picked Jace up and took him to his pain management appt. 300 questions answered by us gave them an idea of what Jace has been and continues to go through.
They will be calling us back mid next week to book a follow up appt where a plan will be put in place. They seem to be more about a psychological quality of life more than medication thing. They admit can take 12 months or more of very hard work but well worth it.
The Costochondritis and Tietze's Syndrome has now been confirmed by a hospice specialist as the cause for Jaces chest pain. It may be strapped up by Hospice Physio tomorrow but they not sure yet.
But now sitting here chatting to his dad with a smile on his face is a joy to see.
Huge hugs to the amazing Ngaire who came to visit Jace this morning too bringing in some lovely treats for Jace and lecturing him not to touch the lovely coke zero she brought in as a pressie for me ?? ya chiccy thank you.
Tomorrow Bruce and i will be heading in early so i can help Jace shower before we head into akl city hospital to meet with his haematologist. It will be quite a mission but we will manage
Costochondritis and Tietze's Syndrome
Jace woke at hospice today in a lot of pain again and called his lovely nurse for some pain relief meds. Kate came back in with someone Jace hadnt met before (he says possibly doc, possibly a physio)
Who did a lot of breathing and pressure testing/tapping on sternum and she believes he has Costochondritis and Tietze's Syndrome.
The symptoms etc all sound spot on to what Jace.is currently going through. Often it just has to run its course but in severe cases may require surgery or regular hydrocourtisone injections
we honestly find it quite comical that a possible disgnosis and tests were done by Hospice staff and not by staff in the acute diagnosis unit at the hospital.
Jace is feeling much more confident today in knowing we have a possible answer.
His wonderful dad Bruce is picking me up at 1:30 today so we can go pick Jace up from Hospice and back to North Shore Hospital to see the pain team and sit through that with him and take him back to Hospice.
His wonderful mum may need to loook after kids for an hour or so depending how long the appt takes.
Some info on the possible diagnosis for those interested is below
Again and always huge thanks to those who emotionally (online and in real life) support us. Your comments give us that strength to keep smiles on our faces and mean so much to us all.??
Please remember that sharing of the givealittle page helps us heaps to as every dollar helps us to keep doing things for kids, pay for the medications that are expensive and so on. With my epilepsy it also helps to pay for transport on those days where our amazing in real life friends are busy with their own lives
Heart bloods results back tell docs it isnt cardiac which is good news of course.
We are being moved from A&E and into ADU now but have stopped at radiology for chest xray.
Taken off the gas for the movement and shot up with fentanyl which has helped but not removed the pain and does only have a short duration.
Still unsure if we will be here for the night or moved to akl city motutapu ward of back to hospice.
At NorthShore A&E
They believe not cardiac arrest but also cannot help reduce the pain
The sub cut morphine given at hospice doesnt seemed to helped . The gas does but the minute he stops though the pain is back and worse
We may be kept here for night or possibly moved to Akl City APU or Akl City Motutapu ward.
I will update on that as we go.
Huge thank you for the lovely messages of support xxxxxxxx
Not sure if i advised but hubby in hospice respite care for a week since last thursday.
With his bday coming up on 28th his goal was to be up and doing well for a few days before and after his bday.
However today has woken in lots of pain thst even high doses of pain relief hourly isnt solving.
Docs being called in now to see him as his pain level is at a 8 or 9 easily and feels like chest being ripped apart :(
He also has the new ongoing wrist pain. Increased non stop headache which has me begging hospital.for an mri for him etc.
He is so pale and god i just want to hug the man i love the most in this world
When jace cant eat or drink he cant take.the meds as they then just come hurling back up :(.
Also means no pain killers etc too and is so horrible for him.
Please consider passing around our www.givealittle.co.nz/cause/helpthebarretts
as even a $1 donation will help us out heaps towards his transport (as i now cant drive) , medication (as now in new pharmaeutical year)
So in addition to all our problems re Jaces illness i now have epilepsy.
On meds now which knock me out hard and officially cannot drive car for 6 to 12 months min.
So now i have to rely even more on my local friends to taxi is to Jaces many appts and then to drive kids about too.
I feel like im failing Jace aye.
What a day
Am stressed to the max... jace has barely woken today. Not been able to take meds etc. Try wake him every hour for just a moan and then he is out to it again. Bout to go and take his temp i think.
As for me.. well yesterday called neurology to find out what the deal is as ive now had my EEG and CT scans but been given no answers.
Neuroligy scheduler told me i was booked in again for april 25th which i clearly told her isnt good enough as im hubbys no 1 support carer and need to know if im able to care for him . She said neurologist has sent letter to GP and so i asked her what letter said abd she said she cant tell me.
Said neurologist MUST send me letter too or call me to discuss and i must see him asap.
She called me back yesterday to say i have appt at 4pm tomorrow at akl city hosp. Then today got letter stating my EEG shows that i have Complex Focal Seizures on left side of brain.
After lots of google reading ive seen that insomnia, stress and diabetes are all big causes for this and i suffer all three. It is also operational i read but will find out more tomorrow i guess.
Soo here i sit stressed bout Jace and me today.
On Thurs just gone Jace came into Hospice for his week of respite. They have helped him soooooo much already and intend to try and help us more by getting Jace a hospital bed for home and possible AC as well as both help his breathing a lot!.
The staff and environment , the food , rooms and more are allll amazing.
Im staying here tonight with him so i can walk to north shore hospital in morning for my brain CT scan. Hopefully it will help Neurologist decide what is messing me up and get me sorted so can drive a car again. ( a HUGE thankyou to the amazing friends i have who have beem driving me/us places lately.???)
Also staying tomorrow night with Jace here so we can meet with the Hospice Social Worker to discuss the bed etc.
Seeing Jace the last couple of days be well enough to walk around. Even now at 10:45pm sitting on his room balcony with a milo and enjoying some time out is sooooo great tooo !
So a lil late in updating but this week i went for my EEG brain wave test to help my neurologist decide if i had epilepsy.
The technician said she could see something but couldnt say what to me. Tomorrow i now have a CT scan to help neurologist decide what is causing my mental blackouts etc.
We had a great xmas with Jason enjoying his family time and the help we had from charities and our local community also.
A very quiet new years with kids at friends and Jace and i quiet at home and 2 fabulous days together talking about our new vege garden and our application for an assistance dog for him.
The last 3 days however have been horrible pain , unable to eat or drink, unable to hold down meds or pain relief without intense vomitting.
Today we are at the hospital for his respiratory testing as docs think GVHD has moved into his lungs.
However not sure if testing can be done as yet as Jason has vomitted in waiting room and is now on bed in consultation room waiting on specialist to come back in after reading the mountain of the notes on Jason.
Its so hard seeing him in so much pain and i wish i could make it better for him somehow.
I love him to pieces
Also hoping to find out cost of assistance dog rhis week and if Jace is eligible for one.
Please think about donating a dollar or so to Jace towards our home costs , his medical costs, kids school costs for this upcoming term and possibility of assistance dog.
Please also consider passing this on to others as well.
Have come home to an amazing delivery on our doorstep from Riverside Orchards in Ashurst.
Called them but so far unable to tell me who it is from.
Please know if you have arranged this it has brought a huge smile to my face and i will be telling Jace when he wakes up next.
THANK YOU SO MUCH
Hosp trip pics today.
Just got asked by one of our fave daystay nurses (Anne) how im doing.
Told her about my blackouts etc. Got a big hug from her and nearly busrt into tears but holding it together best i can.
Also got a great hug from Donna (another nurse). Love these ladies to pieces for all they have done for us .
Three fails for IV for Jace today wasnt nice but will be keeping this line in till fri done
Registrar appt today for Jace with Haematology.
She is quite worried about his increased gvhd and chest infection and lethargy it is causing. Stepped out to talk to jaces haematologist and couldnt find her. Ran into Haematologist Dr Darcy and talked to him where i heard his reply being "oh Jason , we all know him"
Will be driving back here daily now for IV antibiotics and if no improvement by fri will likely be put on ward.
A brief update about both Jace and I.
Jace currently has a chest infectiom and off to doc tomorrow after hospice nursing coming to see him today.
Hospice are hoping GP will.increase his pain relief intake as well.
As for me. I havnt said much but for months ive been worrying Jace and Jayde by having blackouts. Some start with crazy laugh , others without, and then i dont know what is going on, cant talk properlg during and so on. My GP.is hoping it is stress related.or epilepsy but am into akl.city hosp.in 1.5 weeks time for a brain scan of some sort.
This is literally the last thing my family needs as it may mean can no longer be Jaces proper carer ??
A weekend of more pain that had Jace having no sleep and often having insane pain behind his dead right eye.
Saw his opthamologist finally today who says gp's incorrect and no infection behind the eye. That is great news but now we are left waiting on his lung test , his teeth referral to go through AND to see his haematologist to look into this pain.
He is very worried and stressed, i'm a stressed mess and all our $ going towards medical transport , parking and general costs instead of kids xmas time.
I know this time of year is hard for most families but If anyone can help with some small donations it would be a huge help !
Over the last few days Jace has had many teeth shatter , another ongoing problem from his radiation treatment and long term steroid medications.
We have been given 2 options today for him :
1) to have 3 toot canals done, a few teeth pulled and some filled also . All for approx $5k
2) to have alll damaged or getting damaged terth pulled and a plate with required falses . All for aporox $5k as well.
I have meeting tomorrow with WINZ to discuss what help they can provide and it wont be a huge amount unfortunately.
If there is ANYWAY you can help please consider donations to www.givealittle.co.nz/cause/helpthebarretts
Donation of any size , even tiny , add up to help. IF you do or cant donate not then please also consider sharing this post as everyone share out does help us in some important way.
And thank you for all your help it means so very much to us
Xxxxxxxxx
on the 14th Jace who had been withdrawing over a couple of weeks hit a low.
he decided he was very sick of the hosp saying one thing ad doing another, he was sick of the pain , he was sick of the life in bed and he stopped taking his meds.
being super low he didnt want to continue and it scared the hell out of me and the kids. he went for a walk which made me worry as he cannot walk far and i had to call the police who found him on the side of the road collapsed.
I am however very happy to say that this week that low has allowed Jason to return to more of himself. Laughing and playing cards with the kids.
small daily walks to try and increase his strength and back on all medication thank goodness.
Human Metapneumo Virus (hMPV)
Not a horrible thing to you and me but potentially a nasty problem to under 5's , elderly and the immuno compromised like Jason.
Jason is now in a respiratory isolation room, mainly for the safety of other patients here in Motutapu haematology ward.
We were told this by his evening nurse and so havnt discussed with doc as yet. That will be tomorrow morning. But our lovely nurse Elizabeth believes he may still be able to come home tomorrow. We will see.
To whoever passed this virus on to Jace we actually THANK YOU. We dont want him getting this often of course, but it may just help us to get more answers !
This diagnosis tells Jace and I a few things with regards to his current breathing issues and will hopefully lean towards some answers being discovered by docs. It has given Jace a reason to smile as it means its not just another thing we go home after with "i dont knows" and shoulder shrugs from medical staff.
Right side of Jaces diaphragm has increased and they are not sure why. But as registrar says can be possibly due to the GVHD as GVHD causes many problems.
They are using this to try and speed up the new assessment of his lungs by specialist
Been a tough tough day for Jason
Ambulanced to akl city.
Breathing is terrible. Muscles not working. Cant stand cant walk. Heaps of pain :(.
Kids staying with friends and ill be with jace next few days.
24/9 2:30am
Shit !!!
Scared Jace coming down with pnuemonia again. He is coughing terrible and his chest rattle is very noisy.
It scares the crap outta me as we were moments from losinv Jace in Nov last year due to pnuemonia and we are still waiting in a queue for his lungs to bs re examined for the GVHD that his haematologist and i agree is there :(
Pic taken earlier today when he was able to sleep.
A huge thank you to all who have made any size $ donations . Last few months have gotten us through Jakobs bday, Jaydes bday and bills.
Also a massive thank you to Leukaemia and Blood Cancer NZ who had a previous mans wife donate this exercise bike and who believe will do the world good for Jaces muscle problems (and mine haha)
We werent expecting it but gosh are soooooo grateful !
Xxxxx
Ive not updated for a while as had Jaces last haematology appt.on Jaydes bday and then her party as well.
His haematologist has told me a week prior that results from Jaces kung function test say no GVHD in lungs.
On 3rd Sept however we mentioned to her that based on online research Jace has all the symptoms of it. She agreed with that and has referred Jace to a lung specialist as also firmly agrees that it is working into his lungs :(
She is keeping him on the antibiotic they use for GVHD in lungs 3 days a week. Says the other 2 meds noted online are of no use and that any new meds the specialist may provide may be of no assistance as well.
Not sure how long wait will be so just waiting to find out at this point.
I hate doing it but please consider spreading our givealittle page. Even donations of $1 help us so much each month.
With huge thanks to an amazing friend Leash and to a man called Michael from Tommy's NZ promoters who made the night amazing by allowing Jace (and i ) to meet Tommy.
Even more thanks to Tommy who during the meet told us he would be sending out healing vibes to Jace and then twinkled his fingers to us. Then when finishing playing "somewhere over a rainbow" he twinkled his fingers over audience and after show signed the album Leash purchased for Jace and while we were leaving waved a goodbye to us with a huge smile and twinkled again.
The man had me in tears of joy a lot during the night from his music of course but also from seeing Jason smile the biggest smiles ive seen on him for years!.
Leash and Michael i will Never be able to thank you enough !
I didnt get much of a chance to post yesterday but oh gosh Jaces appt at NZ Blind was amazing !
Anya was so great in helping Jace with determining which shade and colour lenses best blocked glare and make his light filled times (in and out of the house) less painful. She also gave us a tutorial in guiding and bejng guided which was a huge help to both Jace and I.
Was amazing when the best suited colour lense was used to see Jaces face light up !
A huge thanks to Jaces folks too for paying for the two pairs of glasses over the phone so that Jace could leave with the new comfort
ECG done . Lung function test postponed till sometime next week.
Respiratory registrar has confirmed breathing problems and chest pain issues is not.due to an infection which again leads us closer to the gvhd being close to lungs :(. She will let Jaces haematologist know
12/8/15
Oh god what a day so far.
Opthamology at greenlane to.check Jaces left eye.
Dr Batman has gone back to UK and we are now renaming a new Dr on his fellowship from London who actually spoke in our terms because he knows what GVHD is !
He confirmed all of Jaces eyes problems are from GVHD and many other things.
Then still at greelane over to respiratory for his lung function test.
Due to him being short of breath they tested his oxygen stats which decreased suddenly. So they checked his heartrate and stationary it was at over 128 ??
So now off for emergency ECG then back to respiratory again .
His skin is all clammy and strange and something is just not right :(
Jace is heading downhill again :(
He struggled all day today with pain and coughing and trying to stay awake
Now in his sleep he is talking about his lack of life. His hurt and ow. His hate of it all
I touch him to try and calm him but it semi wakes him and makes him cough so now im letting him chatter and groan.
I sooooooo wish i could take it alllll away for him. Could make it all better for him
Sooo 12:45 am
got home this afternoon after picking up new medication scripts from the amazing team at our local pharmacy, unpacked hosp bags, sorted dinner and then soent approx 2 hrs re sorting 2 drawers of medications , doing up a meds list anddd sorting out 10 alarms per day in my cell for Jaces time based meds.
HUGEEEE mission !!!!
Now finally in bed with my amazing hubby snuggled up and comfy for me but mega pains for Jace :(
So today is the lung function test which Jace had prior to his transplant but now they trying to use again to find out why he cant breath very well.
Yes we are still in hospital and days have been getting worse and worse for Jace.
Woke at 6am in terrible pain in headache, severe chest pain, eye ulcer in remaining eye, ulcers on tongue and in mouth and in throat, hands burning with GVHD , joints aching and burning.
Had to go to greenlane hosp for eye check and change of eye meds that are $79 a box ??
then back to Akl City Hosp for areedia and pentamadine meds by IV and inhalation .
Tomorrow he has a breathing test which is going to be extremely painful.
Ive been staying on the spare bed that folds out of cupboard and havnt seen kids.
Cant wait to see them tomorriw evening.!
ANOTHER UPDATE 18/7
During movement from Greenlane hosp back to Akl city hosp Jaces chest pain, post eye looks migraine and now backpain increased by HEAPS.
By time got him back tonward 63 he was grasping at chest and head.
Haematology registrar came in with nurse when i called for assistance.
They examined and confirmed pain meds a MUST ad nurse got them for him.
They then confirmed we are being moved to Motutapu ward (the haematology specialty ward) but would be moved once pain decrease from meds.
Orderly came in to see ifnhe could be moved by wheel chair but in the space of 2 to 3 minutes Jace has fully passed out/fallen asleep. We are hoping from exhaustion only at this point and waitingnfor him to be moved
I will then be racing home to pick up his eye autologus serum which is made from his blood and racing back here to keep eye on what is going on.
UPDATE : 18/7
The last few weeks at home have been hell.. then from tues to today a nightmare..
Please please feel free to share this round as amy help before the 20th of this month will keep us going next month.
Soooo far ct scan of chest is clear YAYYYY!!!!
This is great news as GVHD in lungs would have been the end of my amazing man. His lungs would have concreted basically.
The cardiologist registrar believes not his heart at such YAYYY !!! But more likely some infection surrounding the sac around the heart. Unsure if viral or bacterial.
But haematology not convinced echo cardiogram still required on monday
Still awaiting swab results from the sceptic gvhd skin issues.
This morning Jaces remaining barely working eye has taken a dive and he can barely see. (Someone standing directly in front of him has a face outline but no face)
We are currently now at the grreenlane emergency eye clinic who have done a scan and now waiting for full assessment.
This of course is confusing haematology more.
Already having one exploded and dead eye means this is not just pain but insane frustration for Jace. So a huge thanks to Torelle for bringing our kids in so could give their dad a hug and chat and some laughs with them and Jaden too.
Another big thanks to Hayden and Holly for visiting Jace last night too
And of course to Angela and Clint (wish we cld have seen ya Clint) for popping in too .
This really lifts Jaces (and my) mood after sleepless nights.
If any other mates feel like popping in please txt or msg me and ill see if we avail or drowning in docs and nurses.
Jace has been taken into gp this morn.
He has pnuemonia again .... he nearly died 3 times last nov due to it and yet hosp not taking him in as yet.
He and i are scared shitless to be honest
Jace is still struggling daily.
Called the hospital on fri to ask for suggestion re the severe gvhd sores he is getting.
No call back :(
I wish i could lift his mood but with constant pain it has really got him down too.
The lovely sun is hurting his one remaining eye and so he is stuck in bed so much ??
We had the opportunity to adopt him a mobility assist dog last week which really lifted his mood. But our landlord quickly said yes then no, so that is now off the cards for quite some time.
We have his glare assessment coming up with NZ Blind Assoc soon but the cost for any products to help him is going to be so high.
If you can help in ANY way please do. I hate asking but god we need it.
For.the last week Jace has had a real bad right shoulder pain and all over exhaustion.
He has tossed and turned so much. Cough has increased. Dropping in colour. Wonky on legs ive just noticed tonight too. The lumps in his foot and amount of GVHD sores have grown as has my constant feeling of concern and fear.
We meet with NZ blind next week at least, im hoping maybe it can give us some hope. Maybe lift Jaces spirit a bit (and mine).
Im also in the process of finally putting in my complaint to the health and disabilities commisioner regarding Jaces right eye. Its going to be a longgggggggg process.
So on friday passed i fell over on our front deck :(
Ive shattered tail bone. Cracked 2 ribs and doc thinks fractured pelvis.
Have had xray today which hurt like hell.
Home again and in and of sleep.
Jason has some flu going on. Poor man spent all of last night sneezing and coughing.
I have to keep an eye on him as may have to drive him to hosp.
As you mostly know by now the firefighters raised over a million dollars for Leukaemia and Blood Cancer NZ . A huge amazing job done by them all!.
A fellow called Clint even wore photos of Jason and as Jace requested a photo of all 4 of us as we all suffer during his illness.
Absolute heroes all of the guys and gals who do this.
Wow a huge thank you to Raychel's workmate who not.only did this amazing sketch but also put heaps of work in to get Peter Jacksons signature and the authenticity letter too!
Please pass this around bigtime
We are at my nieces 3rd bday party which im so glad we could come to but Jason is loding colour fast. Always makes me so worried.
Jace having another very rough day today :(
Can barely stay awake. Coughing heaps. Not able/wanting to eat much. Love him so much, so wish this would all just leave him alone somehow.
Hopefully tomorrow will be a nicer day for him.
Havnt yet heard from that team that i was told would call me today.
Oh but another good note.... started chatting to an amazing caring lady night before last who asked permission to pray for us (of course granted) she then asked if could pass my contact on to a lady who is in her church and who helps the church help.families in need. She came to meet me yesterday and is arranging for some amazing help with mowing and ceiling scrubs etc.
Wow wow wow
Had a ph call today from a monitor of the Kapo Maori trust and she was shocked that the hospital hadnt put jace in contact with them at time of diagnosis.
KapoMaori is the Maori side of the NZ blind foundation. She is putting Taikura Trust, they are a NASC - Needs Assessment Service Coordinators in touch with us tomorrow in a hope to see how they can help Jace become more independant at home which will then increase my ability to get back to work !
Pleaae cross fingers as just hearing from Mere today was a miracle and a half !
He has started the imatinib drug but has still broken out in another gvhd sore and the skin on back of his neck is opening up again plus his left eye is really troubling him site wise and he has a huge headache.
Ive spent some time in bed with him today but still done SOME housework. Now it is kids home time and once both here we are off to chemist to pick up some of his big pain relief. Fingers crossed it actuallly helps. I HATE seeing the man i love in pain :(
please dont forget our upcoming Scentsy/Lizzielove Fashion charity event that is on the 31st of May to raise money for his medication and transport to appointments etc.
Maybe im just getting moody after nearly 3 yrs but haematology today is getting to me.
Last consultant appt they forgot to dress his waitline gvhd sore so have had to ask again today.
nurse was too scared to put IV Canula in today so a 2 hr med to stop jasons brittle bone disease that shld have started at 12:30 didnt go in until 1:25pm.
Have noone to pick up kids from school etc.
Jace also starts his new very scary medication today which is actually a treatment for a very different leukaemia. Fingers crossed.
I need to slow down and breath and remember my stress just makes it harder for Jace.
Gosh the stress on me and the stress and pain on jace....
The car has been running horribly so put it in for a check over and service. repairs needed are going to cost a minimun of $520 that we of course dont have.
In addition Jasons eye is on a downhill again and his biggest gvhd sore has gotten worse as well. Its bruised up and weeping big time And both arw causing him a lot of pain.
I am going to sell my much loved high hèels and some kidstoys etc in an attempt to.get some money but i also need to ask for any assistance anyone can offer.
Even if only a dollar a week or fortnight or month.
Soooo todays optamology appt was the best so far.
Jaces eye is still not good BUT we were told about a new centre being opened that can test and look after his eye more accurately.
It is opening in 2 months time so back to see specialist then.
Jace given some new medication to be applied to his dry GVHD eyelid which also seeps through eyelid into eyeball and will help with eye photophobia. Need to call haematology now to double check he can use it.
And in addition , with us asking, optamologists.are putting jace into blind foundation !!! This means we will.get in home assistance for him etc.
what a wonderful day was had with thanks to Jasons mum and dad who took us all over to waiheke island for a fabulous day.
They took is in the campervan so we could all.go together and Jace could be comfortable and took us on some amazing sites and to some great adventures.
we started with archery at wild on waiheke but sadly due to eyes Jace couldnt participate. He didnt mind though. Seeing and hearing the kids have fun was a big thing for all.of us adults!
The we went to Eco Zip which was nothing short of amazing.!
Jace didnt get to finish the whole course as just not strong enough. he did however get through 2 zips and was helped so brilliantly by all staff involved in getting him back to the top when exhaustion took over.
when next.over on waiheke please think about stopping in to see these great people.!
http://m.ecozipadventures.co.nz/home/
Honestly although Jace is physically exhausted today yesterdays fabulous family fun was so amazingly worth it !
Thank you soo much to my wonderful inlaws ????????
Watching Jace the last few days has been hard. He has lost all energy. Has had a swollen hand (but not swollen today)
His muscles all over hurt.
Its his bday this saturday and theres nothing i can do for it. His folks have offered to take us all to waiheke island for the day which has Jace real excited BUT i dont think he will be able to go.
Was very close to calling the ambulance earlier and to be honest im rather lost. He is booked in to see hosp on Friday but i just dont know if should wait that long.
at the point again when trying to.decide what to do for hubby.
He has woken today with his right hand and arm extremely sore and his left hand extremely swollen.
I so wish he would just be left alone by all this pain and illness. Its not fair on him :(
Last friday we got to go to Awesome seating provided by The Two Robbies from The Breeze Radio Station.
Sadly Jace wasnt well enough to come with us but the kids and I were amazed at how good the show was.
in hindsight the lighting of the storms in the show would have crippled Jason so its good he didnt come but i still had a few moments of really missing him being there.
Well todays appt was a good one. Haematologist applying for some govt funding for jace to be put on a new med to slow or stop the GVHD. Its called imanitib , for google reliant persons (such as myself) i ask you not to google this drug. It is mainly used for symptom treatment of CML (chronic myeloid leukaemia ) and its possible side effect list is long and worrysome if just reading online with no background knowledge.
Also more bloodtests tomorrow for him but just at labtest so nice and fast for him.
Bloods for me tomorrow too so its a joint date ??
Photo from yesterdays Areedia and Pentamadine treatments
On thursday morning i had a very strange text from Aimee stating my phone would ring soon and i had to answer call.
I laid in bed beside Jason getting a bit grumpy cause i didnt know why i had to answer.
Not long later Braydon from The Breeze radio station called saying he had The 2 Robbies from the station wanting to talk to me thanks to an email they received from Aimee.
I had the chat and ended in tears. They talked about all Jason has been through , asked about his prognosis and asjed how the kids are handling things too.
they then went on to say that Aimee knew i had taken kids to Albany mall to see the baby t rex from walking with dinosaurs and was gutted i couldnt afford to take them to the actual show.
and then explained they were sending us 4 to the show !!!
I was in tears, Jason in shock.
they played the discussion on their show on friday morning explaining that Aimee was also gettin 4 tickets too!
We are all so thankful and still in shock!
Aimee you dont think you have done a big thing. Let me tell ya missy this is huge. This is amazig and cannot wait to go to the show with you so you can see the joy in all of our faces !!!!!!
hold in there uncle ;3
Listening to someone you love in pain in their sleep all night is so hard.
The need to take that pain away is huge, the ability to do it so minor :(
Jason's GVHD muscular pain , especially in feet, continues to worsen :(
I wish i could help more than i do.
Bills this week outweigh income sonwe will be turning to Salvation Army for food assistance. They are so very amazing when we need them but gosh i hate asking them as so many others need them too.
If ANYONE is in anyway able to assist with petrol id be very grateful as not a dollar to our name this week and many hospital appointments.
Xxx
i feel sorry for u guys aunty
Appt update.......
Nothing to say really. We saw Leanne who hasnt didnt explain much ans didnt say much to be honest.
Sje prescribed 10 days of augmentin antibiotics only after i mentioned they were going to last week but didnt.
Mentioned jaces teeth are very brittle. Big chip on one last night. She mentioned thats common with GVHD and to.get him to dentist.
Mentioned his constant muscle pain which Leanne said is often GVHD but she believes his GVHD is gettig better ...considering last weeks haematologist believed it was increasing i dont know what to believe anymore.
Ive come out of this appt quite angry to be honest. Jace pointed out to me no point in being angry , we cant change the past, and i know he is right. But..... i feel like no effort , or maybe not enough effort, is being put into jaces quality of life.
In addition ive made 5 ph calls to physio who were supposed to contact Jace to finally start his treatment in Jan and we had heard nothing. The last call was me woth a temper and funnily enough 5 mins later received a call and Jace has appt next week.
Oh and received the letter to pass to my employer today too. (For those who dont know im on 12 months leave without pay until June).... the letter is TERRIBLE. In fact its so bad it made me more angry but laugh at same time. It states Jason has CUTE GVHD . SERIOUSLY.... cute ?
1. Jasons GVHD is CHRONIC not acute. It kicked in after day 100 post transplant.
2. Jason , myself and anyone who has seen what he has gone through knows NOTHING about it is CUTE.
Ive spoken with the amazing Rebecca from Leukaemia and Blood Cancer who has calmed me and is going.to.have lunch with us next week before Jaces treatments on wed. (Thanks Bec, you really do rock hun and have been amazing support all this time x)
Anyway thats todays possibly pointless update lol
Ok rant over... sorry lol
Thanks EVERYONE for your well wishes ,checkins , thoughts and prayers andnfor sharing of and donations to the givealittle site. Please continue to share as every single dollar helps sooo much, donations can be made from any country via credit card i believe.
So Jaces main haematologist.is away until Monday. We started seeing a registrar who then called in Lucy , Jaces first pre transplant haematologist, who then called in Richard who is one of the post transplant haematologists.
They advised that Jasons spleen is stuffed so putting him on lifetime supply of penicilan to stop another pnumonia case occuring.
They agree that his GVHD has increasred causing the hand and other sores, the mputh and tongue ulcers getting worse and the skin thickening and discolouring.
They have increased his prednisone steroids by double for a while.
They are also putting him on a 7 day dose of high antibiotics just in case.
Also arranged blood tests but Jaces veins not easy to find.
Jace is doing ok but dizzy on feet which is normally mot a great sign of whats to come.
Due to the fact they stuffed upnregarding Jaces eight eye they hace now sent us as emergency to the optamologists emergency clinic to have eye followed up on as well due to recent pain and eye burning and tye photophobia getting worse.
That is about all i can update at now though
Early last year Jason started getting horrible cramps. His hands would change shape. legs would cease and so on.
The cramping stopped 3/4 through last year but has just started up again now :(
We are off.to hospital tomorrow so fingers crossed they can figure it out there this time......
We have purchased most of our daughters new college uniform second hand and had some helpful people donate items free and help with stationary (a HUGE thank you to those amazing folks!) But for the 5 items i need to purchase new i just got quoted $554 ! Im going to beg WINZ for some assistance with this too.. wish me luck lol
Jace update (perhaps more of an Amy update re doctors)
Today Jace has , is having, two of his treatments.
Aredia to keep strength in his weakening bones and pentamidine inhalation to keep his lungs strong against infection.
We also asked to see a doc as Jaces one working eye has been causing him huge pain and constant discomfort grief with the photophobia coming back too. He is sick of it and sick of the need to reside in a cave and frankly im sick of him being in pain and nothing being done to solve it.
The optamologists last wednesday can see no cause of the pain in the actual eye and therefore believe it is GVHD related.
We talk to the great nurse here about talking to doc. Doc tells her he doesnt think its the haemtology depts job and we should go back to optamology. She comes and tells us. We tell her optamology say its not them. She goes back to doc and comes out saying he will see us but only to provide enough pain relief until his next appt.
This has all been decided without new doc on duty that hasnt read his file, has never met us and not even spoken to us to decide this.
I am frankly making sure i dont blow my lid at this point.
My husband has been in pain for basically 31 months now. its about time some effort was put in to help him
Further update:
Doc came and met Jace. Has prescribed much more sevrodol to carry him out next 10 days.
In next 1 to 5 days he will have a CT done to ensure its not frontal lobe causing issues.
In 10 days time we will meet same doc along with Jaces big haematologist registrar and go from there.
So lots more travel etc BUT hopefully an upcoming help pain wise for my amazibg hubby
