Regular updates on Aaron Attacks MS Facebook Community Site
6th January 2016
Follow up Chemotherapy (Mitoxantrone®) is a chance for Aaron to mend the broken dreams HSCT held for him and for us as a family.
Round one down, 12 months of treatment or 3 rounds to go…..
We are now 2 weeks post our 1st visit to Canberra for the ‘Blue Juice’. As predicted by some of his fellow HSCT/Mitox Warriors the chemo hit Aaron like a freight train. He has insomnia and is completely lethargic and fatigued, his symptoms have all flared including loosing more use of his once only active right leg. He is experiencing cramping in his hands making simple tasks frustrating. He is in constant pain and discomfort and increasing medications does little to relieve him. His feet and ankles are extremely swollen and his ‘GP enhanced care plan’ visits for much needed Physio have run out. Through out each day I am encouraging Aaron to hold on to the hope of some respite once he recovers from the harsh side effects of the Chemo. We can only hope he will reap the benefits, or that at the very least the Mitox will slow down the bastard of a disease that has stolen his life.
As hard as it has been and will be, as bad as it has gotten and will get, we continue to face the constant challenges together and head on. What choice do we have but to pick up the pieces and keep trying together to regain some quality of life for Aaron.
10th March 2016
518 days or 17 months + 1 Day post HSCT
Almost a year and a half ago we traveled to Moscow Russia for HSCT. For Aaron, Jacob and me those months have been physically, emotionally & mentally exhausting. We have experienced more stress, frustration, craziness & turbulent times than most will see in a lifetime and we have faced them head on & together. We went into this journey to fight PPMS with HSCT with our eyes wide open, knowing the statistics were against us but ultimately hoping that at the very least the transplant might halt the progression of Aaron’s aggressive disease (or even just slow it down; any improvements no matter how small would have been an unexpected blessing). Sadly Aaron hasn’t had the positive results we had hoped and prayed for, the positive results that so many others have had and continue to have; nor has his disease progression slowed down or stopped. We can almost certainly say now that the initial improvements he had in the early months after returning home were only temporary 😦 We are not where we had hoped we would be 18mths post-transplant and life isn’t how we imagined it would turn out for us. We still have no regrets other than not getting Aaron the treatment earlier. Aaron was and still is willing to try anything to get his life back and/or to help him live a little longer and we will continue to fight on – we are not giving up! We are trying to take each day as a blessing, taking the good, the bad and the ugly that continue to come our way as best we can. It’s not easy and we stumble and fall often but we are also there to pick each other up and get back onto the altered path life has now taken us down.
“A person’s quality of life includes their health and well being across all physical, mental and social aspects.”
On a positive note, we have finally had a breakthrough with Home Modifications. They began demolishing and building here at home a few weeks ago to create a safer environment for Aaron in his wheelchair. Work includes a new disability bathroom, widening of doors inside, meaning his wheelchair will actually fit around inside his own home, a ramp has been constructed at the front door to allow him freedom to come and go without assistance, and we are looking at putting an automatic roll-a-door on the carport to allow him to get back into his beloved shed, again without assistance. These modifications, along with suitable equipment and aids, will assist Aaron in becoming a little more self-sufficient. He will be safer at home, which in turn will increase his quality of life and open up the world of disability options to him; the world that we now live in.
While the modifications are underway Aaron has taken the opportunity to once again check-in to Royal Rehabilitation Hospital in Ryde. Being completely wheelchair bound now (except for briefly standing to stretch or for transfers) can and does cause Aaron frustration and in turn he gets angry with himself, with life and with those close to him. The goal of his stay at RRH this time round is to learn the skills he needs to sustain a better quality of life within our modified home. The awesome Dr’s, Physio, OT, Nurses and support staff are all working closely with Aaron to develop a program designed to suit his diminishing abilities and health. All tests, exercises and activities aim to improve his all-round quality of life. The Physio team, lead by the amazing Elisha, are working closely with him daily to increase his substantially weakened core strength and upper body muscles, while ensuring he isn’t over doing it (Aaron needs to learn quality over quantity!). Learning these new skills and practicing his new exercises will assist him in regaining his confidence. He is working hard at building strength and has been shown methods to transfer safely (something he wasn’t doing at home, meaning he was a high ‘falls risk’ having on average 2-3 falls a week in my care). With the right support he is now standing to stretch as well as doing supported sit to stand exercises. He is learning to get up from the floor should he have a fall he now has the knowledge and skills to get back to his chair without assistance should he want to get down on the floor to do something, a simple thing we don’t think twice about has been a huge challenge and struggle for Aaron. Thanks to Karen, he also had the opportunity to at least try various wheelchair activities and sports including Table Tennis, Fencing & Hand Cycling to name a few. Some are possible for him and sadly some are not, as his body is no longer able to regulate his temperature or raise his blood pressure. Aaron is grateful to be able to attend RRH, not only are the staff extremely friendly and helpful but he is learning new skills and has a different view to look at as well as new people to talk too. He looks forward to return visits in the future to enable him to work with his changing abilities and continue to build the strength he loses through chemo.
In just under 2 weeks, we will once again travel down to Canberra for Aaron to receive Chemo/Mitoxantrone® Round 2. This trip will include visits with his Oncologist, his Neurologist and the Infusion Clinic. Aaron handled Round 1 quite well during his 1st infusion but he was wiped out in the days after and was physically exhausted. His comments were that it felt like a bus load of sumo wrestlers had just run over him ; from all reports this is normal and it does pass. We are hoping this next round will be the same…. although we have had reports it hits a little harder with each dose (which is ok if it also starts to have even a small impact on the progression of Aaron’s MS!)
Each day seems to throw us another challenge and each day we are grateful to be here to support and encourage each other ❤ Like I said when we started this crazy, wild and unpredictable fight against MS – ‘it ain’t over till the redhead says it’s over’!
11th April 2016
PPMS; the reality…
Primary-Progressive MS is characterized by “worsening neurological function (accumulation of disability) from the onset of symptoms”. It is truly a heartbreaking condition 😦 Watching someone you love and care about being destroyed mentally and physically as they become a shell of their former self is devastating. Everyone who suffers from PPMS is “losing the fight” as it is a progressive disease with no treatment or cure. 😦
PPMS affects most, if not all aspects of Aaron’s life now (and in turn those around him). Commonly those with PPMS will become unable to walk and or will lose partial (and then typically total) control below the waist (essentially they become MS paraplegic). Disability for Aaron now includes losing control and use of both his legs & feet, loss of bladder control requiring a permanent catheter and ongoing bowel problems as well as sexual dysfunction. He has hand and arm spasms as well as increasing cramping in his fingers, making fine motor skills a real challenge. Numbness, pins and needles and loss of control of his lower body has meant Aaron is confined to his wheelchair or bed and needs assistance for simple everyday tasks. He experiences severe mental changes, including mood swings, depression, and an inability to focus or multitask. Slurred speech, vagueness, memory loss and confusion and cognitive fog can make communication difficult and frustrating. Along with that comes trouble swallowing and digesting food, increasing the risks of choking. Loss of vision is also very common and can be very disconcerting. Indescribable fatigue becomes a part of daily life and simply getting out of bed can be exhausting for him. Then there is the excruciating nerve pain from head to toe that even the strongest of pain killers can’t stop or even take the edge off.
MS is known as ‘a Snowflake disease’ i.e. no two cases are the same and no two people will have the same experience, they may be similar but not the same. In addition to that there are so many different factors that affect the timing and nature of PPMS and its progression making it hard to predict the future. It has a completely different disease course to all other types of MS. With only 10-15% of those with MS diagnosed as Primary Progressive it is impossible to predict exactly how and when any given individual will experience certain aspects of that progression.
Aaron was already a 4.0-4.5 on the Expanded Disability Scale (used to measure MS) when he was diagnosed in late 2012.https://en.wikipedia.org/w…/Expanded_Disability_Status_Scale
22 months later on presentation in Russia for HSCT he had progressed to 5.5-6.0. Regardless of trying common MS treatments and HSCT in the 3.5 short years since diagnosis Aaron has rapidly progressed to a 7.5-8.0. 😦
For us, our hopes and dreams were that HSCT would, at the very least, provide some (if only temporary) relief for Aaron from his aggressively developing and ever increasing symptoms, some of which are described above. To date this has not been the case and although he is fighting back, trying the prescribed follow-up chemo, so far we have seen no positive results as his disease continues its destructive course.
The reality for Aaron is he lives in a daily hell with PPMS, its symptoms and his increasing disabilities. He is in constant pain; frustrated, angry, upset, bored and lonely. Life is not ‘how he dreamed’ nor ‘how he imagined’ it might be. He is only 43, he can’t run or walk, he’s confined to his wheelchair and is restricted by his increasing disabilities from doing everyday tasks that we take for granted. He can’t drive a car or ride a motorbike anymore; he can’t be the husband and dad he wanted to be…. he can’t even just go to the shed and tinker with his toys and tools…. It’s upsetting to watch him lose hope, the spark he once had in his eye for his projects. The passion he had when he talked about his cars and bikes is fading. Without a support system or people around to keep him active, to chat with and motivate him, the desire to fight and his struggle to keep “just trying” is becoming harder for him and I see him giving up. I would give anything to turn back time, to give Aaron a second chance without PPMS – but I can’t do that. All I can do is try my best to help him cope, help him to adjust as the symptoms increase. And try to make him be as comfortable and content as I can (which isn’t very much) for whatever time I can. Truly I would not wish PPMS on my worst enemy.
17th May 2016
In 34 days Aaron will undergo his 3rd round of harsh Chemotherapy. The treatment is 12 months with doses every 3 months. Mitoxantrone is used in MS to moderate the immune system’s attack on the myelin. It acts in MS by suppressing the activity of T cells, B cells, and macrophages that are thought to lead the attack on the myelin sheath. As Aaron is PPMS he does not have the lesion activity as seen in other forms of MS – he just progresses.
Mitoxantrone is not an “approved medication” for PPMS, there are none. It is a last ditch attempt to slow this bastard disease that is stealing Aaron’s life. It is similar to drugs used for acute leukemia and lymphomas and has it’s own serious risks and side effects; it damages the heart and can cause vomiting, hair loss and other such symptoms commonly associated with cancer treatment. Its toxicity means it can’t be used for longer than the 12mth dosage his Haemotologist has him on.
I would really love to have a suitable, comfortable electric bed for Aaron to return home from Chemo too. Each round has been more aggressive and the effects longer lasting and more debilitating.
We are so close to being in a position to order him a bed so that it can be made and delivered in time for his next round of recovery.
22nd June 2016
Aaron is now 20 months Post HSCT and has just completed Round 3 of 4 Mitoxantrone doses. It was not such a great outcome in Canberra this trip and was a tough few days. On top of visits to his Haematologist and Neurologist, Aaron had Mitox and another dose of Methylprednisolone (hello insomnia).
Mitoxantrone is a cytotoxic chemotherapy drug, it is compounding in its dose and is harder on Aaron after each round. Because of the risk of cardiomyopathy, mitoxantrone carries a limit on the cumulative lifetime dose (based on body surface area) in MS patients. After Mitox Aaron’s white and red blood cells and platelets temporarily decrease. This can put him at increased risk for infection, anemia and/or bleeding. The low point is the point in time between chemotherapy cycles in which he experiences the lowest blood counts. Onset: 7 – 10 days, Low point: 10 -14 days, Recovery: 21 days
30th June 2016
Today we had the great pleasure of a visit from our Russian Comrades Natalie, Paul and their kids. Natalie had HSCT alongside Aaron in Russia in October 2014 and Paul was a great support to me (Sam) as a fellow carer and friend during our time there. It’s been 20 months since we have seen Nat & Paul and to say that Natalie is a ‘Poster Girl for HSCT Success’ is an understatement. While they were in Russia together Natalie was struggling with her mobility, her fatigue impeded her day to day activities and she had reached a 5.0 – 5.5 on the expanded disability scale. Two weeks ago Natalie participated in the ‘Brissie To The Bay Ms Cycle Ride’ completing the 25km ride! To quote her she is “Loving Life with MS after HSCT”! We are so thrilled for Natalie and Paul and their whole family that she was able to see such amazing success from HSCT and her time in A A. Maximov in Moscow.
HSCT can and does halt MS, it can also give back so much and is true hope for so many. 70% of of those treated are successful; stories like Natalie – Be Strong, Be Brave, Be You, Kristy – Moving Mountains to defeat MS, Jane – funsizejaney, Kate – Russian to get Katie HSCT, Paul –Fighting For My Girls, Vicki – Kickin’ MS with HSCT, Marielle – To Russia With Love Lauren – Laurens Leap for a Better Life, Sarah – Hello Sunshine: Sarah’s battle with MS, Vanessa – Ness Beats MS, Lucie – LIFE 4 LUCIE are just a few of the hundreds of real life stories that are the proof!! (Sorry to anyone I missed please post your page!!)
HSCT may not have “worked” for Aaron but we know that the proof is there that it can and does work for so many; we truly believe HSCT should be a frontline treatment for MS no matter where you live in the world. Recent studies have shown that the earlier in your disease progression you are treated the better your results are likely to be. Aaron does wish that he could have had HSCT just a few months earlier, but he is and always will be grateful that he had the opportunity to try.
We would also like to send a special call out to Amanda – Rushin’ to beat MS who celebrated her Stem Cell Transplant/Birthday yesterday in Moscow Russia with the amazing Anastasia and Dr F by her side ❤ Amanda will be another success story and we know she has the strength and will within her to get through her coming isolation period before she returns to her family in Australia for recovery at home xx