Back to page

Help for Huntar Sammons and his Family

  • Final Givealittle update!

      30 January 2017
    Main image

    Our Givealittle page closes tomorrow! But before it does, Huntar and family would like to say:

    "A big thank you to each and everyone one of you that has sent messages, donated or even just took the time to send positive thoughts our way. Everything and anything was and is truly appreciated! Words will never be enough to express our gratitude to everyone on Facebook, GiveALittle, YouTube that followed us on our journey.

    Huntar is getting stronger and stronger and has so much determination in him.

    He can stand for 10 seconds and take small steps aided. We have started Physio now and Huntar is returning to school for a couple hours a day, this week. Slowly doing normal things.

    On the Oncology side of things, we are still having monthly check ups and blood work done and scans/ultrasounds every few months. These will then be done at 6, and then 12 months. So far everything has come back ok. Huntar has an MRI on the 14th February for his head and body. We keep our thoughts on this coming back clear and no sign of cancer.

    Our Journey still is happening, and we would love for all of you to keep following on Facebook group "Help for Huntar":

    From the bottom of our hearts; Thank you all!!"

    While you're here, take a minute to look through the givealittle photos and check our Huntar's journey and how far he's come!

    You should also totally check out the latest Woman's Day magazine featuring Huntar and his story!!

    Many many thanks everyone!!

      0 comments  |  Login to leave a comment
  • Finally home....and in time for Christmas

      22 December 2016

    Settling in home, things are not perfect, but its nicer being in my own home.

    Huntars Physio and OT here seem to be good.

    Had our ACC case manager come round today for a visit, she seems lovely.

    Huntar seems so much happier too.

    We have noticed, and been told, with spinal injuries, you lose the capacity to regulate your body temperature.

    Huntar definitely suffers from this, he has a fan on him to sleep and then ice-packs on his neck to cool him down.

    We are off to Wellington hospital tomorrow morning, for Full bloods to check levels, as last time one was quite high.

    These times are a struggle, the mind can play awful tricks on you and make you think horrible thoughts.

    We are due for a MRI in January.

    Due to the type of Cancer Huntar had and how aggressive it was, they keep a close eye on him.

    So fingers crossed tomorrow is just another day of good news and we can carry on. <3

      0 comments  |  Login to leave a comment
  • A weekend at last!!!

      24 November 2016
    Main image

    Just finishing packing, then heading to Auckland airport to start our journey home, to Upper Hutt, for the weekend.

    It's been a total of 7.5months since Huntar last was at home and able to sleep in his own bed. He is super excited!

      0 comments  |  Login to leave a comment
  • Urgent Plea for further help!

      7 November 2016

    Hi everyone

    It’s been another blow today, with Huntar’s Dad, Rick, being informed that he will be made redundant from his job, situated in Lower Hutt. His last day will be the 16th December (right before Christmas!)

    After many setbacks faced by this family, this could not have come at a worse time with Michelle already having given up work to be close to Huntar during all his, chemotherapy and rehabilitation and Rick needing to travel between home and Christchurch and now to Auckland to give Michelle a break on the weekends and see his son.

    Financially, this is going to be another battle for them until Rick can find a new job. Please spread the word to help this family out – we know they will make it through, but they need our help to make it through this time.

    There are several ways you can help:

    • Share this page on your social media site – just copy this link into your status bar.

    • Contribute a donation (large or small) via this givealittle page and leave the family a message.

    • If you know anyone in the Automotive Panel and Paint business, in Wellington, that may be looking to hire an experienced spray painter, please reach out and find out if they have any openings. See Rick’s page at and contact him directly if you know of anyone that may be able to help!

    Remember: “The smallest act of kindness is worth more than the grandest intention.” –Oscar Wilde

    Thanks for your continued support!

      0 comments  |  Login to leave a comment
  • Update on Huntar from Wilson Home for Children with Disabilities - Auckland

      31 October 2016
    Main image

    Huntar is doing amazing at physio and his head space is good.

    We will be practicing toilet transfers soon, as well as bath transfers.

    Michelle and an Occupational therapist will be heading home for a day in November, to check their current house, and see if it can be temporarily made liveable for Huntar, until a more suitable home is found. They will also be paying Huntar's school a visit to see what might be needed before he heads back in 2017.

    They are also aiming to come home for a weekend at the end of November, just to have a little break and be all together.

    Therefore, it is clear that they will not be home until at least December sometime. They have also been advised that if Huntar's progress and mental state of mind continues to improve, they will stay on here in Auckland until the specialists think it is time.

    Huntar started his testing today with the psychologist. He already has a mild intellectual disability, and there was a risk that the Chemo could heighten this, so it will gauge whether his intellectual ability has stayed same or worsened, and a recent finding to compare with later on.

    Their first Oncologist review, since leaving Christchurch, is scheduled for 3rd November. As well that an ultrasound to check his kidneys and bladder. And then on 24th November they will have to see the Endocrinologist to go over what will be needed for the bone that has grown in his muscle in the future.

    There was an option to using electrodes to make Huntar's muscles work in his leg, but upon discussion with doctor, there is a study that showed it could worsen the bone growing in the muscle, so this is not an option for them.

    So this family will be up in Auckland for longer than anticipated, but if it means Huntar gets the best, then that's what they will do.

    The financial impact remains hard on the family and with their extended stay, it is likely to be even harder. If you are able to donate a little or share the givealittle page on facebook or other social media to help them out, it is gratefully appreciated.

    You can also check out the "Help for Huntar" facebook group which has many more updates and photographs and videos of Huntar's progress. :)

    Thank you!

      0 comments  |  Login to leave a comment
  • A great update!!!!!!

      25 August 2016
    Main image

    This morning brought our oncologist to see us.

    She advised looking at the MRI that there was no sign of the disease (cancer)

    This isn't our official meeting but an insight.

    We are very happy about this.

    We have a long way to go and will include a plan for if a relapse, as his options for treatment are limited in future.

    But for now,

    Huntar has kicked Cancers butt!!!

    That's a win!

    With our good news came more news for our Journey.

    We had a Spinal Doctor come who works in the Spinal Unit in Burwood with adults, but trained with pediatrics.

    On his recommendation Huntar is to go to the The Wilson Centre, Child Rehabilitation Service

    This will be for approximately 3 months and up in Auckland.

    As soon as Huntar has his circumcision surgery and is better from this infection, we will be flown to Starship (maybe first) then transferred to the Centre.

    This will be Physio, OT, along with preparing Huntar for wheelchair transferring, bladder and bowel control.

    The Doctor also advised that the infection that presents and where it is, is something that can happen in spinal injuries within the time frame, so his medication might be getting changed as it is a different diagnosis.

    So it seems we won't be returning home soon, our journey continues but now at the other end of New Zealand.

    We are still hopeful Huntar will walk - it is what we have, but preparing him for life in a wheelchair all the same so he can, as the Doctor said "live a fulfilled life"

    We are not sure how the accommodation works, as there is a bedroom for inpatient with shared facilities, but no idea how food situation works or anything else, at the moment we haven't had to worry about food with being at Ronald McDonald.

    Unsure if we will have room at Ronald house in Auckland as it is a 23 min drive from the center.

    Still quite a few things in the air - So support is still greatly needed as Rick will take some time off work unpaid in this new city and new time for us all, as well as, we would like to fly Kane up as much as we can as Huntars face lights up when he sees his brother. <3

    Thanks everyone for messages and support it is all greatly appreciated, especially when in times we need a pick me up, knowing we have you all behind us, makes this all the more bearable. :)

      0 comments  |  Login to leave a comment
  • Update from Michelle:

      6 July 2016
    Main image

    Hi all, I know it has been a while with an update:

    It is full on with physio every day, even though we don't do much, the days go so fast, and before we know it, it is dinner time and bed routine.

    Last week I had a talk with the oncologist, and said that I would like to try B12 injections. The oncologist didn't hesitate at all, and checked with the pharmacist for any reactions and there are none with the Chemo drugs. She also said they will prescribe and give them to him. So this brought me some relief as my gut instincts were telling me we needed to try it. So now Huntar receives x3 B12 injections in his thigh, 3 times a week at 300mgs. This is equivalent to someone who could not absorb any B12.

    The next round of chemo starts tomorrow. They call this round M3. It would usually be known as M1 (Maintenance 1) but as we can no longer have all the drugs it has been renamed.

    This afternoon Huntar went under a general anesthetic for a catheter, as there are problems with his bladder senses, this is related to the nerve damage and he does not empty his bladder completely. This means that there is residue left, and this is not ideal as, with chemo, they use hydration to flush the body from the chemo so the drugs are not sitting in the kidneys or bladder. So having the catheter will allow an empty bladder and lower risk of bladder infection.

    We are still looking at 2 and half months before coming home.

    Rick, Kane, Huntar and myself all managed to stay together over the past weekend at Ronald McDonald House. It was an awesome feeling to say the least. Last night, however, we had to bring Huntar back to the hospital as his temperature was over 38.5C, so he's back on antibiotics and bloods were taken. These tests have confirmed he has an infection and so is back in isolation.

    Sadly, it was at Ronald house where this infection has come from and this brings to light the importance of being free from illness when anyone is visiting. This is especially important for the Cancer kids staying there as it is terrible for them with little to no immunity.

    For those in the Upper Hutt and Lower Hutt, The Cossie Club Upper Hutt Quiz night fundraiser is approaching, September 3rd, to be exact, and we are hoping local businesses would be willing to donate items or vouchers for service or products for this event as prizes.Your company will be announced by the MC through the night as well as business logo on prize tables.

    For Upper Hutt people, this is my home town and I have supported business myself through the years. Lower Hutt is where I grew up and spent a large portion of my life.

    So if you WORK somewhere in Lower Hutt or Upper Hutt, maybe ask your boss? If you ARE a boss, please think about this. If you are out of the region, think outside the square.

    If you would like a flyer for your business window, that can be done as well, via post, email for you to print or drop off. If you wish to purchase tickets, these are $10.00 each. Please email Caroline Garbutt at the following:

    Your help and support is really appreciated, as this will more than likely be the last fundraiser for us, before we head home to start our new lives of this journey in Upper Hutt.

      0 comments  |  Login to leave a comment
  • More support needed :

      20 June 2016
    Main image

    Hi all; this update is a hard one and I know I took the weekend to process it myself... :(

    Update from Michelle from 16th June:

    "We had an MRI yesterday to search for any other reason for Huntar not standing or walking and problems with bladder control. The oncologists didn't expect to find anything other than the "usual" side effects, ie: they were thinking it was just muscle wastage. Sadly the MRI results found that due to some of the chemotherapy drugs; there has been damage done to Huntar's spinal cord and the nerve/s.

    What this means for Huntar:

    The doctors can not say for sure if the damage will improve and whether he will regain use of his legs again and control of bladder function, or whether he will stay as he is currently, or whether this will get better. The Oncologist is slightly optimistic, that he won't worsen due to fact his condition has not deteriorated in the last 5-6 days. They will no longer use high dose drugs, Methotrexate and Cytrabine, and Vincristine is up in the air.

    There is no known medical process that will be 100% successful in fixing the nerve damage done(however other therapies, vitamins, naturopath, etc. have shown to help some and not others). Huntar can no longer receive IT spinal Chemo. They can not say 100% what drug caused this but looking at the time frames and drugs used in that time, when symptoms appeared, it appears to be the Cytrabine high dose and Methotrexate.

    The nerve pain medicine, Gabapentin he has been receiving since we arrived for his pain in his head, will be weaned off as this could be suppressing nerve signals, also.

    In the medical journals published, there are only 7 known cases of this severe and rare side effect, worldwide, but as Huntar's oncologist said; most published cases are on the extreme end and they are ones they want to talk about. In all these cases they show variations of worsening, improvement and of no change. This why she cannot say what will happen, only time will tell.

    In terms of treatment, Huntar will receive Rituximab, but not in the next cycle. It will be the cycle after that that we will receive it. But the cycle after that is only partial due to the mixture of drugs.

    Will it be enough?

    We have been told that it does lower his chances, but also there is back up plan of other drugs that can be used if the need arises.

    At this stage Rick and I will be doing all we can to stimulate Huntars legs, and signals, as well as looking into nerve healing options. Huntar is currently happy emotionally and mentally, so time will tell how he progresses. Further scans are yet to be decided to see and measure the cancer closer. But so far, so good, with signs that the tumours are shrinking and that scans are not picking up any active cells.

    We remain positive and the road might be a little longer and tougher, but we will take each day as it comes and deal with what it brings."

    Thank you to everyone who has supported Huntar and his family so far. Given this new situation, Huntar's family will need even more support; financially and emotionally. If you are in a position to offer further help either through donations/fundraising or sharing the give a little page, this would help us take some of the financial burden off this loving family so that they can continue to be near to Huntar as he fights his battle.

      0 comments  |  Login to leave a comment
  • Tough Love - update from Michelle:

      10 June 2016
    Main image

    "Today has been full on again, with setting boundaries and routine for Huntar, with physio exercises 3 times a day. Rick and I made Huntar sit in a chair, and holding his feet apart, and using the walking frame for him to pull himself up. Weight bearing on his feet, we managed 3 times for 1 second, but this is a big thing and really hard for him to do. So we were pleased.

    Tough Love with Huntar and fighting the fight of who gives in first, to tears and "I can't". We won this round as parents, but you certainly don't feel good about yourself having to do it.

    We had a platelet transfusion today as well.

    Still on antibiotics.

    Still in isolation.

    The Oncologist visited this morning, and has advised that his next Chemo drug is Methotrexate. This is just one day and this is still part of Cycle 3, which will go ahead, just maybe a few days later than anticipated.

    As for Cycle 4, which originally was going be the same as cycle 3, this is still in the air, due to the severe side effects from cycle 3 of the drug Cytrabine. The docs are still in discussion of whether to swap the cycles around. This makes us feel little un-easy, but again, it is a double edged sword. You're damned if you do, damned if you don't.

    The weekend will be Rick and I teaming up for physio and making Huntar stand. This will come along with all the tears, words, anger, he throws at us.

    Positive vibes and strength is needed as our patience and strength is and will be tested."

      0 comments  |  Login to leave a comment
  • The effects of chemo cycle 3 - Update from Michelle:

      7 June 2016
    Main image

    "The doctor came in the weekend, and has advised that they have probably let the weakness of Huntar's legs slip off their radar a little, as they were concentrating on infections and temperatures. Right now Huntar can not walk at all, and can only manage to stand for about 20 seconds. He cannot bend his knees by himself and has no muscle around his hips so can not keep upright if sitting with no support. The Doctor advised this will take approximately 3 months of full physio for him to regain strength and ability to stand and even after his treatment he will need more physio as well. So I was definitely glad Rick was here on the weekend, to give me a break, from having to lift Huntar to the toilet and sitting up.

    Huntar's rash is very angry looking, and he scratches it. It is on his head too. We've been told he is on the severe end of the side effects of the latest chemo drug and the weakness is on the severe end as well. They stopped his anti sickness meds as they thought he shouldn't feel sick as last chemo was last Wednesday, but he needed the IV anti nausea last night as it came on heavy and fast.

    We got out a little today and felt good, then we came back to the hospital ward and I was told we have the C-Diff stomach bug again!!! :( which means we are in isolation again.

    We are now receiving platelet transfusion and after this is another blood transfusion.... it's going to be a long night and long day for us.

    This last week really feels like we took more steps back than we did forward. Here's to a hard week of tough love with Huntar because I know the struggle and fight for physio will be hard."

      0 comments  |  Login to leave a comment
  • Cycle 3: Update from Michelle:

      31 May 2016
    Main image

    "Cycle 3 has started and we are on Day 3. It is already apparent that these new drugs do not agree with him. He is on 4 anti-nausea meds and then was given "top shelf" anti nausea as he has just been vomiting anything and everything, that goes in his tummy, back up. His peg fed has been dropped to 10ml per hour. We have fevers once a day, so he is on an antibiotic, as the docs cannot accept fevers as a side effect, but the side effects of these drugs are vomiting and fever like symptoms, as well as diarrhea. He has gotten better with his eye drops every 4 hours though.

    He had a meltdown today. Yelling, crying, throwing things, hitting the wall, saying: "he has had enough!", "hates cancer", "wants to go home!". The poor guy is going through the ringer.

    Day 5: "It's 1.15am and I'm finding myself upset and angry and tired. After an hour of doing eye drops and Huntar not being even able to stand to go toilet to cleaning him the floor and changing bed, and cleaning the chair. I'm trying to hold it together when he is crying and telling me "it's too hard Mum", to settling him again.... I hate this round...then I see him sleeping finally, and I say.. another day down as I count the hours till 6am to do eye drops again..."

    Day 6: "There are no smiles today on Mr Huntar's face. He can't stand for more than 3 seconds. The pain in his feet is too much. His soles of his feet are so sensitive and sore. You can't touch them. And he can't bend his toes back. The doc has come back and said they saw it once in someone else, he is very sensitive to this drug which can cause nerve issues as a side effect. Tonight is last dose of this horrible drug on this cycle, which goes till 8am, thank goodness.

    It has been so hard to see him so weak, and heartbreaking having him collapse on the floor because his legs had no strength left.

    The next cycle is same drugs, so I won't be looking forward to that, but I'll hopefully be more mentally prepared."

    Please take a moment to copy the link from this update to your social media page - please share the givealittle page wherever you can. To help this family continue to be together - especially to enable Rick to come be with his son during these harder weeks, when Huntar needs all the support possible. xx Thank you.

      0 comments  |  Login to leave a comment
  • Strengthing up for next cycle

      26 May 2016
    Main image

    Update from Michelle: "Huntar and I have enjoyed our real time at Ronald McDonald House. His smile, his laugh, his unsteady walk; it all made it so much better.

    We got up at 7am and made our way to our hospital room to start chemo, but were told his Nutraphils have dropped from .74 to .48. This means that we get another night at Ronald McDonald House. This is awesome but is also a double-edged sword - it means that we couldn't start this round of chemo today and I want to get to the next cycle so we can get on with things.

    It has been amazing seeing him return to half of his former self before it will be taken away again once this round of chemo begins. So we have to be back again at the hospital at 7am to get bloods to check Nutraphil levels again. Fingers crossed that they are.

    This has really given Huntar a boost; mentally and emotionally - and some more strength for the next cycle.

      0 comments  |  Login to leave a comment
  • A night way from the hospital!

      25 May 2016
    Main image

    Update from Michelle:

    "This morning started good and ended great ! I've been living in the glorious moments! After 7 days of not physically eating and a rough patch with a stomach bug; Huntar and I are getting a couple nights out at Ronald McDonald House!

    Huntar's Nutraphils are up at .24 (white blood cell count - which is an improvement as he was at 0 several days ago before his platelet transfusion!).

    This morning was busy coming off morphine, off other antibiotics, getting script, getting our own feeding pump, getting syringes...

    Our first night out alone, fending for ourselves; it bought a mix of emotions and nervousness due to having to think about administering medicine and at the right times. Checking his temperature every hour. And all without any nurses or call bells. Happy, excited, overwhelmed, tears; that after a month and a half we can sleep in a real room... not a hospital.

    The dinner tonight here at Ronald McDonald House was lovely and Huntar ate 1/4 of his burger. He fell asleep at 7pm. His body still needs rest and he is still quite wobbly on his feet and he lost some muscle in his legs.

    So enjoy this picture of my favourite moment. I cherish it the most and am so grateful it: Huntar sleeping in a normal bed with just a feed tube and away from the hospital!

      0 comments  |  Login to leave a comment
  • Beads of Courage, Scan and Transfusion:

      21 May 2016
    Main image

    Update from Michelle: "A crappy week and Child Cancer Foundation dropped off Lego for Huntar... put a smile on his dial. We have earned over 80 beads alone this week and it's not over. Had our CT scan today... didn't show any other infections, so that's good. Also showed tumors are less, as well. There is fluid in his tummy, but that is to be expected with he bug he has. Another transfusion today. This was a platelet transfusion, white blood cells so his blood can clot."

      0 comments  |  Login to leave a comment
  • Update from Michelle:

      19 May 2016
    Main image

    All in good form, the nurse checks and asks for Huntars hospital tag with name and DOB.

    Huntar's response: "Awe c'mon guys you should know this by now!"

    Mucasitis is horrible! (Ulcers caused by low immunity) Cream stings.. broken skin.. so no more cream, 2 bolus of morphine, and an increase of morphine to 3ml per he feels ulcers down his throat. But he is strong, it is just the stinging that is causing him pain. Also, finger pricks for glucose testing, to make sure he doesn't get steroid induced diabetes.

    A solider for sure - so brave.

    So much going on physically for him, yet he continues to realise day by day, this is to be expected and with each day he finds it inside to fight and mentally convince himself, it gets better. I tell him this too, yet to be honest, I am convincing myself just as much as I am convincing him.

    He flexes his arm here, well, as well as he can with a heart monitor attached to his finger. Fighting Cancer, you soon realise during treatment, you have to be strong in all aspects, emotionally, mentally and physically.

    Huntar is my solider, my teacher, my baby son.

      0 comments  |  Login to leave a comment
  • Video from Huntar!!

      13 May 2016

    Huntar has his own YouTube channel to keep all his "fans" updated on his progress. He would love to have many subscribers! Please join and follow his journey from his point of view!

      0 comments  |  Login to leave a comment
  • Dark Woods

      12 May 2016
    Main image

    Update from Michelle: "As this chemo cycle is almost done; we head into what they call "dark woods" where Huntar's body resistance levels drop and he becomes a shell of himself. We were granted leave yesterday before it hits, but Huntar got more head pain, throat pain, vomited and was nauseous. So we got an hour at Ronald McDonald House before he wanted to come back to hospital.

    Last night we had morphine increments. The pain team visit us daily as they are waiting for the signal to start his morphine infusion.

    We're allowed out today and night if Huntar manages it. I hope so, but only if he has no pain.

    I have his scripts all ready and empty syringes. I've been taught how to start his feed overnight as he is on 12 hour feeds then off during the day.

    This is worst part of it all, knowing what's coming and seeing him get weak.

    Waiting for the all clear and then we are off to Ronald house... even if it's for a short time."

      0 comments  |  Login to leave a comment
  • Mother's Day 2016

      9 May 2016
    Main image

    Update from Michelle:

    "Of all my years of being a mother, and celebrating Mother's Day, this year I received; a gift bag from Ronald McDonald house and some cards made by my boys. As I sit in the recovery ward watching my baby and waiting for him to wake again from our now 11th anesthetic in the last month, with more hair lost all over his pillow and his skin changing, the best gift I got was knowing his Cancer is treatable... I get to keep him a lil longer.

    I am taught something new everyday.

    I feel so much emotion in one day.

    We have a little boy (2 years old), next door to us in the ward, his cancer isn't curable and is going home to be comfortable but as Huntar clearly put it; "At least he will be happy and can look down from heaven." He learns and sees so much for his age and is growing up fast mentally and emotionally before my very eyes. Never take a day for granted. Your life too could change in just one breath..."

      0 comments  |  Login to leave a comment
  • Awaiting results (from Michelle and Huntar):

      4 May 2016
    Main image

    "Today was a good day. Huntar needed to have a PET scan was so good staying still waiting for the glucose to travel through his body (A PET scan is when they inject a glucose radioactive solution in your vein and you have to lay still for an hour for it to circulate and attach itself to "Active" cells).

    Huntar, then had to go and lay down for the scan itself (the CT/PET scan) which takes 25mins of lying completely still. After we completed this I was so proud of him!

    We arrived back at hospital and the hospital team advised we were nearing our time where we won't be able to get out, so we can have a few hours free. We went to Ronald McDonald House for dinner!!!

    Tomorrow is the day the doctors, of all kinds; have big meeting and discuss the MRI and PET scan and Huntar's case. So results should be tomorrow."

    Huntar has also started his own YouTube channel and would like many subscribers! Please take a minute to listen to this little man bravely explain in his own words what's happening to him.

      0 comments  |  Login to leave a comment
  • A breath of fresh air...

      2 May 2016
    Main image

    Update from Michelle: "Huntar is off all pain relief pumps via IV today, so morphine and ketamine gone, temperature has stayed down, so he had nothing attached for a few hours today. After a little break, he will be back attached to Lipids and TPN, which is basically nutrients you need to survive and feed through his PEG feeding tube.

    His hair is still falling out. It is everywhere, but he is not ready to cut or shave yet.

    Even though immunity levels are low, the health professionals realise the importance of fresh air. So we got 30mins outside to look at the ducks. I can't wait for the gleam to come back when I say we can go outside... He was quiet and little sore, but managed to wave back at the lady who waved to him. "

      0 comments  |  Login to leave a comment
  • Update from Michelle

      30 April 2016
    Main image

    "Still fighting temperature... and no immunity. Still on antibiotics...feeding through peg and nutrients through IV. But we are sleeping lots."

      0 comments  |  Login to leave a comment
  • Rebuilding :

      28 April 2016
    Main image

    Update from Michelle:

    "We had a social worker and dietician visit today and now with Huntars weight loss and them not wanting him to lose anymore... we are now on Osmolite (nutrition feeds) which will now slowly run over 20 hours through his PEG feeding tube.

    We are on our 9th day and next chemo starts at the earliest on day 16 (which is in 7 days, confusing I know). This is normal as he has been hit with chemo in high doses so his body is now going downhill with losing platelets and other blood as well his immunity reaching low and zero. His body rebuilds itself with some help from transfusions and then we will hit extensive chemo again. Latest they can start next stage chemo is day 21 which is in 14 days. So its gonna be rough as his body goes downhill but fingers crossed he comes back up hard and fast so we can start our next stage at the earliest day 16. Also around day 16 we will be trying to get a PET scan to compare with original CT scans and MRI but this depends on Huntars body and recovery.

      0 comments  |  Login to leave a comment
  • Child Cancer Foundation visit

      23 April 2016
    Main image

    Yesterday the Child Cancer Foundation visited Huntar and his family.

    They gave Huntar a backpack with toilet bag in it and some toys and another beautiful quilt. As well as these things, he received the beginnings of his Beads of Courage necklace.

    This photo shows the beads Huntar has received just over the last couple of weeks.

      0 comments  |  Login to leave a comment
  • Burkitt Non-Hodgkin Lymphoma

      21 April 2016
    Main image

    Huntar has now had a definitive diagnosis of Burkitt Non-Hodgkin Lymphoma.

    It is a fast growing cancer, so intense chemotherapy is needed and administered faster than others who may receive treatment over a year. Side effects are high due to the big doses in a shorter period of time but the success rate is approximately 94%. Due to the intense chemotherapy, Huntar will need to be an inpatient during his treatment.

    Yesterday, Huntar went into theatre for the doctors to insert a tube into a main vein from the heart. This is called a Hickman line, and sits on his chest. It is a long term method of getting in Chemo IV and taking bloods, which is done frequently.

    A feeding tube now comes out from his stomach. This tube is for when Huntar cannot eat properly either due to loss of appetite or he's struggling with medications or from the mouth ulcers that can be caused by the chemotherapy.

    This comment came from Huntar's Dad, Rick, after the surgery:

    "I was strong for so long...but seeing this really hurt; seeing my son like this. I want this day to be over. I know it will get better tomorrow but this will be a long night."

      0 comments  |  Login to leave a comment
  • A new "normal" life...

      17 April 2016

    Update from Michelle:

    "It's been a long couple of days... with pains and more IT chemo, meaning straight into the spine. In just one week my baby has been under anesthetic 4 times. My sleep consists of waking every 2 hours for toileting breaks because of full IV fluids to flush his kidneys. He has folic acid via IV on non chemo days. Next week we start stage 2 of his chemo, and it's more intense and full on and the introduction of a port to administer chemo meds.

    I don't see daylight a lot, so it's so bright outside. I should rest when he does, but when he sleeps he looks so happy without a care in the world. I just want to stare at him. I showed him pictures of his MRI scan of his head other day and told him what was causing his pain. His personality is already beginning to change...but then I see him again with the little quirks he did prior to be admitted. I got my first stand up proper hug yesterday in over a week. God that felt so good. We had moments other night where he asks "why me?" I just told him because your strong and brave and you can do this. Then silently as we watched some TV he says "we'll get through this". we have some good moments too.. I relish in these, these give me strength to go another hour.

    When I walk to and from Ronald McDonald house, my view on life has changed so much, and I find myself looking at people and thinking that you never know what people are going through, and my "NORMAL" life now is far from normal.

    I walk hospital corridors at least 30 times a day with urine bottles, wearing gloves. I make food that only one mouthful is eaten, or before I'm done making it, I need to make something else. I feed my baby 6.5 pills in morning, 1 at lunch and 6.5 pills at night. Even then it can take 40 mins of perseverance to do this.

    My eyes sting from lack of sleep, but the one "I love you mama" that I've received this week makes me go another day. I don't understand why this happened and I get mad but a friend told me to channel it to fighting, so I do.

    My eldest son arrives on Monday, for 4 days. I haven't seen him since I said goodbye at the airport to coming here a week ago. So Huntar is excited about that too.

    Thank you once more for your messages. I take something from each one and take a breath. The support I read and see has completely blown me away. ?"

      0 comments  |  Login to leave a comment
  • Day 1 Chemo Begins

      14 April 2016
    Main image

    Written by Michelle Hailwood (Huntar's mother)

    13 April 2016

    "Day 1 of chemo done. I'm not going to sugarcoat it, it's hard to see all the machines, when they do it via IV line as well as taking a couple pills.

    He vomited twice, first time over me and the floor. As a mothers first instinct you wipe and clean, but due to the chemo meds in him and/or going through him, the nurses do it and you have to wear gloves and sanitise or hot wash because the harsh chemicals in the chemo meds can leave his body via urine or vomit. We are not sure whether that's because of the days goings ons as, it was a lot, with general anesthetic and chemo and biopsy, or just he chemo itself.

    His poor blue bear had to go in a hot wash and dryer within an hour or all hell breaks loose.

    His meds right now are 3 for lowering salt, 1 for pain, 1 to protect stomach lining, and that's even on a non chemo day. On chemo days there are a few more. They will start anti nausea through the IV for him soon. Two 15 mins. stints. He now has his own control of morphine, which we're still adjusting to as it makes him groggy and sleepy, but it beats seeing him in the severe pain he was in.

    We had bloods done earlier, and we're about to have more taken in a couple minutes at 12am then again at 4am, this is done daily to check blood cells and levels.

    Tomorrow we get a little break, but we still have to get bunch of pills in him. We do it all right now to get him to take his meds: crushing, liquids, in food; you name it, we try it and even at stupid hours like 5am. Don't ask how we manage, but we do.

    Tomorrow is another day, and another its time for some rest before bloods at 4am..."

      0 comments  |  Login to leave a comment
  • A message from Huntar's Mum Michelle (13 April 2016)

      13 April 2016
    Main image

    "Today I signed the chemo consent form. I felt sad but relief that the fight starts today. He spoke to his brother today and told him "I know what's wrong with me I have a lump in my head and I have bad blood and there's baddies in there". I choked but he understands what us happening although no child should. He is excited to receive, as he calls them; "care packages". Today the reception lady here brought in a patch quilt made with love by some ladies for him. Today he gets a line in his arm while under to make blood taking and med treatment giving easier on him as well as biopsy. He is also receiving his own button for morphine for a few days as pains can come fast and strong and sometimes can take nurses a while to check and bring and administer it due to it being controlled drug. He is understanding processes more now and how each medicine makes him feel... although I still feel it's unjust, he is calmer with realisation. Here's to getting through this day."

    Thank you to everyone who has donated either money or their time to this cause. Today starts the road to a very long process of chemotherapy and treatments and it will be intense and little Huntar is going to need to fight this with everything in his little body.

    We need some more help to start some more fundraisers - getting businesses support too or bake sales or sausage sizzles. Any ideas to raise money, would be greatly appreciated by this family over the next 6 months while Huntar undergoes treatment. Share this GiveALittle page or join his facebook group "Help for Huntar" and share where you can.

    If you cannot donate money or time, please take a minute to write Huntar a note or a card - let him know he has many people praying and thinking about him every step of the way.


      0 comments  |  Login to leave a comment
  • Latest update from Michelle and Rick

      12 April 2016

    "Were waiting for Huntar to wake from the anesthetic. So the doctor visited us this morning and the radiologist looked at CT scan he has spotted some more growths 1 in pelvis, 1 by spine, 1 at back of abdomen. This is common with lymphoma. And it is safer for biopsy which will more than likely done tomorrow from the one in pelvis. So although sounds bad, the biopsy is safer is actually good as treatable although treatment is intensive. He has gone under for the bone marrow take and spinal fluid taking. They will test bone marrow for lymphoma as sometimes presents itself there. Not always though. There is not a definite diagnosis yet, just indicators.. so far."

      0 comments  |  Login to leave a comment