Walking In Faith

In terms of 'support agencies',, at this stage Mana Whaikaha  have actually declined funding his needs. WINZ have also declined financial support, and the Ministry of Health have 'indicated' (whatever that means) that that they will not approve modifications based on his current condition, as there are still changes taking place. Unfortunately we are sitting in a bit of a holding loop because they cant determine the reason for his paralysis, and therefore, the treatment options they are trying might work, or they might not.  So basically we are stuck in this loop of no diagnosis, treatment trials, and and change in his movement levels, dependent on his reaction to the current drug treatments... All of which so far have been short term....  None of which have given him any significant mobility. His condition has continued to worsen over the entire 5 months he has been in hospital. However with each new treatment we still cling on to hope. For example the day after his fi

Wednesday 23 March The Prime Minister announced changes to NZ's Covid restrictions. We are waiting to hear if this will change the visiting policies at the Palmerston North Hospital. Currently there is ONLY NOMINATED ONE VISITOR ALLOWED. This is the Mahi Tahi scheme they run in the PN Hospital, to assist with care duties for each patient. Currently, this person is Tipapa (Dee's Mum), now that she has been cleared of Covid. I (his Wife) am at work, have the kids, and am near the end of writing up my Masters project report. It's hard not being able to be a family... the kids miss him terribly too! However, I look around the world, and really can not complain! I thank God for the blessings of the video technology we have to connect with each other daily. 

Our Occupational Therapist & Social Worker from PN Hospital have been in contact to discuss our next steps & options. We have to make some very difficult decisions with regards to home modifications and equipment needs if we want to get Dee home.  WINZ, Mana Whaikaha, and MOH have all currently declined his case for funding. This is mainly due to the lack of diagnosis and that treatment trials mean his condition is constantly changing. Because he has more movement some days and none others, they are not willing to fund equipment and modifications that may not be needed in the long term. After discussions around Dee potentially coming home soon, it seems the only current option is for him to remain in hospital until we can fund these things ourselves, or the situation changes again.  Many people will be shocked to hear that the NZ health system is not financially supporting Dee to come home. Instead the costs for him to live in hospital are absorbed. Doesn't seem to make muc

 A loan powered wheelchair arrived today, while Dee waits for his own measured-up power chair. He immediately took it for a spin around the block... like literally the entire hospital block!  Its an old chair so it doesn't have many functions and is pretty simple to use. He really enjoyed getting out in the fresh air... even in the rain... having a change of scenery!  His phone was flat so he left it charging when he went out trail-blazing and who knows if the nurses would have even known where to find him if he had gotten into trouble! When he hit his first dip, he thought he might be thrown completely out of the chair! He was thinking he would have to just lie there waiting for help!  (This actually happened to one of the boys Dee met at Burwood Spinal when he was learning to use his chair). Dee experienced the small hill going up to the main entrance of the PN Hospital and felt wonderful just getting out and about!  Freedom at last!  So great that can get out into the sunshine a

Monday 21 March - Dee was told that there was not enough staff, due to the Covid outbreak, he wouldn't be able to get his Cyclophosphamide chemo treatment for at least a month! After finally deciding to take the leap of faith with this new line of treatment, this was disappointing to hear. It's like you phych yourself up to do it, then boom... disappointment! Anyway, Monday is the day he gets his weekly dose of steroids, so at least he had that to look forward to. It gives him a boost in his movement, just a little bit, enough for hope.  This always keeps him awake for hours, especially when they give it to him in the afternoon!! (3pm this week!)  Tuesday morning rolls around, after being awake all night due to the steroid insomnia, and a nurse randomly announces he is going to the Oncology ward for his new treatment!   Praise God! So Tuesday afternoon he had 3 hours of infusion. I asked him how he felt... he said it made him feel... bored! 🤣 Tuesday night he had observations

It's the only time Jairus has ever beaten his dad in an arm wrestle! "I'm not even trying" he exclaimed, shocked that his Dad's arm was so easy to push over! Jairus thought he was waiting for Dee to start! Of course Dee was trying really hard, but was using his right arm, the one that has been most affected. His right arm is now showing huge signs of muscle wastage and spasticity.  Here is a photo of his hand. He is trying to grip the handle bar on the standing hoist. As you can see, he is unable to do this unassisted. His fingers need to be wrapped around the handle for him now. 

Harmony is really sick with Covid.  After feeling unwell for about a week, and 2 negative tests, she has finally tested positive with Covid. We have locked her in her room and send notes under the door, communicate through technology and opened every door and window in the house. Desperately trying not to spread the dreaded virus to Dee as he starts his steroid and chemo combo!  He will not be able to do the treatment if he has covid, nor will his body be able to handle it if he gets Covid once he has started the treatment. He is likely to be very sick without adding Covid to the mix! On top of that... we (Jairus and I) have gone into isolation with Harmony, which means Dee is back to having no visitors!  His mum has not been cleared from her Covid yet... Thursday is her test. 

As Dee lies in bed, arms and legs wasting away, doctors are scrambling to find the cause  They can not find anything in the 17 weeks of testing to confirm a diagnosis. Theories and educated guesses are all we have to go on... but for now, that is enough.  Today we decided that Dee will have 6 months of steroid treatment, infused once a week. This will help to reduce inflammation, try to keep permanent damage as low as possible, and dampen down his immune system to try and slow his body's response to whatever is causing the paralysis. The first 3 months will be at high doses to try and stabilise the paralysis progression. Stop it from getting worse. The second 3 months will be to try to gradually lower the dosage of steroid and to maintain the level of paralysis.  He will also have Cyclophosphamide, a chemo drug, once a month for 6 months, starting sometime this week. The doctor thinks this will have limited success, but he must have tried this one (unsuccessfully) to get infliximab

People feel so helpless, but want to be supportive.  I think this is why people like to donate money. Money is always helpful in these types of situations. We need it to make modifications to the house so Dee can come home. Recently people have started to ask for the give-a-little page again. It actually closed months ago.  However, due to a number of people asking for it again, here is a new one. Please don't feel obliged to donate... at all.      A HUGE thank you to our loving supportive family, friends, and church community who have been an incredible blessing to us throughout this journey! It has been challenging to navigate the legislation involved in the NZ health system (particularly without a diagnosis), the paperwork expectations while managing our workload, finances, children, and emotions.

For the first time since November we have heard talk about potentially going home!!  What a prospect, getting Dee home to be with his family again!  WOOP WOOP! Of course, there is SO MUCH to do before that can happen! But the fact that we are actually hearing talk about this, is so hugely hopeful!  Palmy have basically determined that they will not be able to find an official diagnosis for him outlining a cause to the paralysis.  We are going to try a cancer drug treatment, but there are no further ideas about treatment plans after that. Then he returns home to resume life with his new condition.  We have been contacted by Mana Whaikaha to setup a meeting with our 'connector' to discuss our needs and the next steps. We have also been contacted by our social worker to set up a whanau meeting with all the parties involved. This is a big deal as it is the first time this has happened. All the doctors, occupational therapists, physiotherapists, our Mana whaikaha connector, social w

Doctors (Palmy, Christchurch, & Wellington) don't have any idea what is causing Dee's paralysis, so have been reluctant to 'treat' what they can't diagnose. It seems that they don't want to take liability for treatment if things go wrong.   So far, they have tried steroids, which had some immediate effects, but wore off within a few days/weeks. They have also tried plasma transfusions... like, lots! This had no effect at all. A second round of steroids have been tried recently, but with far less effect than the first round of treatment. The benefits of this immediately started to 'wear off' after the medication ceased. They have also tried physio/rehab work which has amounted to nothing. Through all of this, he has continued to get worse.  They have asked us to make a decision for his next steps.  There has been a suggestion to try a cancer drug called cyclophosphamide. This is normally used to treat various types of cancer and autoimmune diseases.

There are no words to describe the rapid change in Dee's body composition.  Photos are the only thing that can help describe it, and even then, it's not the same as seeing it. He quite literally is wasting away.  This has been one of the hardest things for him to deal with. Watching himself deteriorate physically, so quickly. It is so challenging to still have the same mind; a sporting mind, a PE teacher mind, a coaches mind, but physically not being able to hold things, bounce a ball, balance, or move. These are things that have been his 'bread and butter' since... forever!  Even the lack of movement and use of his right hand and arm have resulted in a small skinny forearm that doesn't look like it belongs to him. "I have my 18year old boy arms back" he says.  There are always positives;  it makes it much easier to move his legs around and wash in the smelly bits! 

The only life Dee is offered in the PN hospital is to lie around in bed. The staff here are too busy, overworked, and not set up for spinal patients. Everything is hard work for them when dealing with spinal patients as they don't have enough staff to manage the spinal needs. For example, it takes 2 staff to hoist him into his commode chair, to toilet and then shower him, make his bed while he is out of it, and return hoist him back to his wheelchair.  Then he has to be pushed around if he wants to go anywhere, like the garden to get some sun or fresh air, because he is unable to wheel himself in his inadequate wheelchair.  We asked the OT if Dee could have an electric wheelchair. She laughed really loud. And for a long time.  There is such a wait, funding shortage, and such a crude process at the PN Hospital, that she honestly felt it was not even an option.  At Burwood (I keep saying that!) almost everyone has an electric chair!  Dee was about to get one when he came home. Of cou

Way back in November - December, when Dee had lots more function, we joked about him using these bibs when we saw other patients using them in the general ward. Well, he has finally succumbed to using the bib!  He said he would never use it because it was just for old people! So funny how God has a sense of humour!  Now he just goes with the stuff that works and makes life easy! After a full bed bath wash down, there is no way you can get crumbs and food stuck all over you!

We chose Tipapa to be Dee's one visitor. However, after just one day with Dee she comes home sick. Testing reveals that she has the dreaded Covid! Ed is sick too, so we assume it has not come from the hospital. She feels massive guilt for being around Dee when she has tested positive, thinking that she may have infected him. This would be really significant for him because he can not cough properly due to the paralysis. He struggles to take full deep breaths. He is asthmatic, has sleep apnea, and is severely immune compromised due to his medication at the moment. Dee tests negative. So does Steph and the kids. Tipapa goes into isolation to get better. Steph get's to be the lucky one visitor now!

Dee was sent back to the Palmy Hospital to support his mental health, to be with family and friends. The day he returned, they changed their visiting rules due to Covid restrictions.  Only ONE person could visit per bubble. No dependents. No swapping who your person is. One visit per day. This means that we have to choose the ONE LUCKY PERSON to be his visitor... Wife? Mum? Favourite child? This means that his children are still not allowed to visit their Dad! On Saturday, his first day back in Palmy, we didn't know the rules so I took both the kids up (nice and early) to spend the day with him. We walked in with some random doctor entering the ward. Once getting into his room, we were immediately told that we were not allowed to visit.  I LOST IT! Unfortunately, I wasn't my best self, and the poor inexperienced young nurse got it from me... with 4 months of pent up Covid-visitation emotions! Two Charge-Nurses came in to 'discuss' our situation, after I demanded to see

It's the age old saying; You don't appreciate it until it is gone.  Well, we didn't appreciate Burwood until it was gone! Even though we weren't in the 'official rehabilitation program' at Burwood Spinal Unit, the Burwood daily routine was still better than the PN Hospital. Every patient was up, showered and in their chair by 9am daily... with shoes and socks on! Dee feels like he is the expert teaching the nurses how to manage a spinal patient having to ask for every little thing - shower or wash, to go toilet, getting rolled, empty his catheter bag, etc. It seems all they do is administer his medications. He started back in Palmy in Ward 26... asking to be transferred back to Star 2  (they seem to be a bit better with his needs in Star 2)  Palmy Hospital staff have started talking about options of  Dee going into palliative care - initially this was raised from the Christchurch doctors. They feel that there is not much more to be done here in terms of treatmen

Dee returned to PN Hospital at 2am Saturday morning! After the Christchurch Public hospital decided that Dee should not return to Burwood, they made arrangements for him to be transferred back to PN Hospital, stating that "there is nothing we are doing here that they can't do there". It feels like no one actually wants to 'take him on' ... maybe not wanting to pay the bill?   After being in hospital for so many weeks, these are the things we know;  PN Hospital Mainly deal with older generation, stroke rehab etc Not set up for spinal patients Most nursing staff have never had experience with a sling hoist and need a few attempts to get it right. Communication between departments is disjointed, this means everything seems to take a very long time. Always waiting.  Staff shortages Very dated equipment & facilities Nothing to do all day except lie around all day, except for one 20min physio appointment per day. Dee's catheter seems to always leak in Palmy Hosp

 After being back in the Christchurch Public Hospital for MORE testing they have decided the following things;  After 4 months of testing, there are still no conclusive results They keep running out of spinal fluid for the testing and having to keep do more lumbar punctures! Every time he has one of these it gives him a migraine for about 4 days. The only thing that has given him any hint of improvement has been the steroids. Dee has requested another steroid treatment round. The doctors are considering this.  Bloods have been sent to the UK for testing During one of the xRays they saw a shadow on his lung and may have found a cancer there (separate to his paralysis issues).. to be continued. They are running out of tests to do He continues to get worse. He is unable to open his right hand. His breathing is affected. He has lost almost all strength in his core. He is full hoist transfers again.  Every test that Palmy did has been re-tested in Christchurch. Some have shown regression of

Dee always said we would never have pets. After his wee daughter blinked her pretty little eyelids at him... "please, Daddy..."  we currently have 3 dogs and a cat.  Bene, our eldest dog, has had a lump growing on his front left leg for about 6 months. This week we are waiting for surgery to have it cut off. While we were away in Christchurch it changed, started weeping, and is now bleeding constantly.  The vet said it is likely to be superficial, but the initial test came back inconclusive. (Seems to be a theme for us!) Today's distraction was waking up to find dog vomit all down the bed duvet, right beside the covers!!  Typical!  Anyway, Dee is missing home so much that he said he even misses "those stupid dogs!" Can you believe he would ever say such a thing!  Absence makes the heart grow fonder.  BENE's surgery update... (Wednesday 23 February 2022) Surgery went well today! They got the whole lump removed and our wee boy came home at the end of the day,

Dee is feeling pretty low at the moment.  He feels along and that God is not even listening.  He is alone in the Christchurch Public Hospital having more testing done. His Burwood buddies are on the other side of town (improving). His family are back home in Palmerston North.  His new nurses and doctors and excited to 'try out the new hoist' that is fitted in his individual room, having no experience with spinal patients and how to help them effectively.... it's the little things; like not being able to close the door or curtain, reach your phone charger that a nurse moved, or something that has fallen onto the floor. Dee is still finding his voice to ask for the things that he wants and needs. You know how he is... doesn't like a big fuss and doesn't like to be needy and ask for things, just takes it as it comes.  There are a few things that are really bugging him at the moment.  His phone fell onto the floor, still plugged in, and broke his charger.  Somehow while

What a beautiful community we live in!  We have been so blessed! The kids and I arrived back in Palmy to find our home in an immaculate state... Silah had organised a working/cleaning bee that our friends, family, and church members had all helped out with.  They cleaned up all the ugly bits of our yard, the dirty gross stuff in the house that needed attention, water blasted the house and paths, cleaned out the gutters, pruned the trees, removed the massive pile of wood cuttings in the front corner, put in a beautiful new garden along our fence, cleaned out all the kitchen cupboards, put in beautiful smelling reeds, soap and moisturiser, cleaned and potted some new plants, cleaned everything, got rid of truckloads of weeds, and filled the cupboards and fridge with food! It felt and smelt great!  We were totally surprised too! Thank you to everyone who helped with this massive labour of love!  Dee and I really appreciate the way you are all supporting us through this journey! We really

A series of events lead to me losing control of my emotions, publicly.   4am start to clean and pack the house  Our luggage was overweight and needed to be repacked at the check-in counter The kids and I were all well over tired and had not had breakfast The flight to PN was cancelled due to poor weather We had already returned the car and cleaned out our accommodation I had to request a reliever for another day in my classroom - another day without wages God was with us; when rebooking our tickets for the next day I asked the Air NZ lady if we were "allowed to sleep here", meaning at the airport terminal. She booked and paid for us to stay in a motel. We had to pay for transport and food. BLESSING! I used the PN hospital taxi voucher (for the first time) to get us to the motel. The voucher declined.  I tried to follow the instructions on the instruction sheet if it declined, but the taxi manager wouldn't allow this.  It was a Sunday so we were unable to speak to the PN h

 It was hard for everyone. We all had a little cry when we had to drive away from him, sitting in his wheelchair out in the carpark, watching in the rearview mirror, as we leave Daddy alone in Christchurch.  We enjoyed some fun family time, taking photos, having a giggle, talking about what the next bit of our 'normal life' will look like. It is such a weird feeling leaving a loved one alone to face something huge. We are so blessed with the technology we have available to us now, to stay connected, even though we are so far away.  The kids are relieved to be going home to routine, school, their dogs, and their friends. Even though they will miss Daddy. I have my masters project and a bunch of overdue assignments to look forward to! We head back to Pegasus for one last sleep. We have to clean out the beautiful (large) house we have been staying in, pack our belongings from the last month, and leave home at 6:30am to return the car and get to the airport for our flight the follo

 As we sat outside on a grey, wet, chilly Christchurch summer's morning, we watched 6 guys unload and erect, 2 trucks full of lockdown fencing. The spinal unit is now completely surrounded by this fencing with 2 little gaps in the fence... just waiting for the final word.  The patients and their family congregated on the inside of the fence, watching as they used the drill to tighten the bolts between each section; one patient commenting that "it is like a prison inside a prison!"  Everyone is feeling it.  There was a letter from the Burwood Spinal Unit Management delivered with the lunch trays, advising us all that the Canterbury DHB is preparing for the next stages of the Covid-19 pandemic to keep patients and staff safe. "The current visiting policy of one adult and one child will be more restrictive with patients unable to have visitors unless in exceptional circumstances. Anyone staying in the Tapper and Milner Units (whanau accommodation) needs to vacate as the

 As predicted, we have gotten used to life in Burwood and it's not so bad here.  We know the routines and expectations now; which nurses to steer clear of, when the doors get locked, and the best places to hang out together.  We have even spent some time exploring some of the local attractions while we have been here!  We have had some surprise visitors down here too! Familiar faces have been such a pick-me-up for everyone and we were all thoroughly surprised! Our new Christchurch friends are awesome! We have loved getting to know you all, even if it has just been through messages online, and we look forward to more encounters and catch-ups with you. We have 4 days left before we return to Palmerston North. It's going to be weird not seeing Dee every day and creating a new routine for ourselves again. I am so glad we all came down with him. It has been a tumultuous few weeks for us all, but it has given us all an understanding of what he is going through and the things he will

We have been so very blessed!  It is hard not to see it everywhere we look.  Today the kids have not coped. They are tired, over the late-weird routine, hate sitting around outside all the time (no seating), sick of having no wifi, missing their friends, really missing their dogs, even missing school! There were lots of tears and tantrums today.  When we had our morning prayer, we talked about looking for the blessings in the everyday things around us and that the things we focus on really influence how we feel. Anyway... when I reflect on the blessings we have encountered throughout this whole ordeal, it is quite overwhelming!  He continues to provide for all the things we need... AND want.  When we came to Christchurch, we had known it was coming for weeks, but actually only got 2 days notice. There was no accommodation available in the onsite Burwood Spinal Unit accommodation, no motels in the area had accommodation available for our consecutive dates (we would have had to hotel cha

It's the simple things that are the hardest... like throwing the ketchup to someone just a few meters away.  Dee has lost the grip in his righthand. His arms continue to weaken. He struggles to hold his eating utensils to eat comfortably or lift his arm to grasp things.  He struggles to control the movement in his right arm and the grip/release of his right hand. He is aware that even a few days of not exercising his muscles (ie; long weekend without physio) results in massive regression in his ability to use his arms. Because of this, he is reluctant to give up his manual wheelchair, in spite of the very real struggle to continue using it. Today he was trying to throw me a packet of ketchup. Well... what a drama!  Watch the videos for a giggle! (There were so many to choose from!)

 True story...  "I feel handicapped when I eat" he says...  "You are handicapped, egg, you're in a wheelchair!" I reply. We both let out our biggest fullest laughs, echoing around his room!  Perception is a weird thing. Some people have commented that 'we are dealing with this well'. I ask you this, what are the options? We can only take one day at a time. No point thinking too far into a very unknown future, or worrying about unknown things (like when the Canterbury DHB will be locking down the unit due to covid!) We simply live in the moment. God is with us in the moment. We feel his presence.  We hear the Tui singing in the tree, feel the sun on our face, and enjoy each others company. Life is good. 

Dee is learning some new tips and tricks in his chair!  He came out today proud as punch showing us all that he could do a wheelie! The physiotherapists are awesome here, giving him some great pointers to make life easier in a chair. These little things are helping him to regain his overall strength and develop the strength needed in specific areas for his new life. Wheelies are great for keeping his core engaged and helping him to get up a curb!  This is super important because his core is mostly paralyzed and it makes it difficult to cough, breathe deeply, sneeze etc. Plus it helps him to do everything! All I can say is... lucky he still has his training wheels on the back, or he would for real have brain damage with all the times he has fallen backwards!