multiple sclerosis

The taxi gamble

I’ve mentioned in another post that getting a taxi in Singapore with a wheelchair can stress me out. It might seem logical that this would be the easiest form of transport for us, especially as they’re so cheap here. But it’s more of a hit or miss. The first gamble is the drivers: Some are wonderful. Though because the taxis are rented out, some are super precious about looking after their hire aka not scratching it. Others are in a huge rush and create a compulsory head jerking rave because of the incessant braking. Pass. The second gamble is a combination of the heat and the multiple sclerosis. For anyone who doesn’t know, heat can be paralysing for sufferers of multiple sclerosis. This means that sometimes the MS will stop Becks’ body from working halfway through our mastered taxi transfer ritual. Ummm really not fun. Her response in this situation is to laugh. My reaction tends not to be so amused. There are times in life that playing it safe is wise. The MRT can be a mission, but at least it’s a predictable one. 

Side note: There are 30,000 taxis in Singapore. Singapore is the size of Lake Taupo. Can we just think about that for a second? Mindblown.

Up in the gym, just working on my fitness…

5 May

I need to stop labelling posts with song lyrics.

Life lesson of the day friends: absolutely everything you learn is transferable. Never in my teenage years would it have crossed my mind that ballet would be helpful ten years on to help my sister with physiotherapy. But there you go, haha. Becks’ physio sessions as an outpatient have me culminating everything I have learned from my dance training, dance teaching, pilates, and general interest in fitness. New challenge!

As well as the leg exercises prescribed by the hospital’s physiotherapist, we’ve also been working on Becks’ upper body strength, core, and posture, to help build her overall strength.

For rehab sake and as a marker, here’s the progress we made in two weeks (post harvest/pre-transplant). It’s probably good to note that each session was largely dependent on how tired Becks was, and whether we did physio in the morning or afternoon (mornings being a lot better).

Day 1

Stretches:

  • Lying down and bending knee, 10x each leg
  • Inner thigh stretch (lying down), 10x each leg
  • Calf muscle stretch (lying down), 10x each leg

Leg exercises:

  • Sit to stand (assisted manoeuvre from sitting down to standing up straight), 5-10x

Arms:

  • Reaching arms straight up and down, 20x
  • Reaching arms forward and pulling back, 20x

Day 14

Stretches:

  • Same as above

Core:

  • Pilates hundred, 10 deep breaths
  • Upper body lifts from lying down, 30x
  • Upper body lift and reaching side to side, 20x

Leg exercises:

  • Sit to stand using one arm only (assisted manoeuvre from sitting to standing up straight), 10x each side
  • Marches (transferring weight between legs), 20x

Arms:

  • Reaching arms up and down with 1kg weights, 20x
  • Reaching arms forward and back, 20x
  • Bicep curls with 1kg weights, 10x each arm
  • Co-ordination (reaching one arm up and the other hand to the nose), 40x
  • Arm circles, 10x forward, 10x back

Super happy with the progress! It was the first time in a long time for Becks working out her core and arms (not as affected by the MS as her legs) so we were able to up the anti fairly quickly. With the sit-to-stands I wasn’t as confident in responding to the MS’ own little personality, but her core strengthening still made a difference in her technique and posture. Becks was able to wheel herself around on outings for short bursts of time too. Winning all round.

Also, just wanted to say thanks to my own physiotherapist Paul Steele from Cross Physiotherapy and Pilates, who kindly donated some exercise bands to help my sister with her rehab. Thank you! 

Team Gains.

Medical Update

21 May

(For anyone following the rest of the blog, I have a backlog of posts I will catch up on! Just wanted to update people on the current situation for now. Also, as a medical novice, I'll add more details as I become more certain of facts/terms etc)

The last 36 hours have been a reminder of how rough this treatment is. It was expected this would be the hard part for Becks, but it’s still a fight to stay calm when it becomes a reality. The staff and nurses at the hospital however are pretty amazing, and we are confident with Becks in their care.

To recap and expand on where we are in the treatment: Becks is currently in isolation for the second part of the process (the actual transplant), followed by a recovery period. With transplant day labelled as ‘Day 0’, here’s the outline of this stay:

Day -6: Admission, line inserted ready for chemotherapy
Day -5: to Day -2: Four days of chemo to wipe out the immune system
Day -1: Rest Day
Day 0: Transplant day to insert new stem cells (and Dad arrived, woo!)
Day 0-10/12: High risk period due to having a low blood count and no immune system, all precautions taken to avoid risk of infection. Expected that side effects hit from day 3 or 4. Body expected to strengthen from second week
Day 7-14: One in ten chance of an MS flare up for a week
Day 14-21: Discharge expected within this time depending on recovery

We have just started Day 7.
Becks has had the expected side effects - intermittent fever, nausea, vomiting, diarrhea, and mouth sores. This has meant a lot of lying with a few ice packs on her body and a paper bag always by her side. She has been given lots of medication to help subside the effects, and sedatives also. For a couple of days she couldn’t hold any food or liquid down, so would suck ice cubes when she could. She has started back on soft, bland foods since though.

The unexpected bumps - two nights ago she was running a fever and as part of this experienced convulsions. Then yesterday she was given a platelet transfusion (because her bloods were too low), but unfortunately had a reaction and experienced shortness of breath. From what we understand Becks had also contracted an infection of some sort (we’re still waiting for clarification around this), but they caught it early and put her on antibiotics and oxygen straight away. As I mentioned before, she’s being well looked after and closely monitored.

So, all in all, a predicted storm. However, we know that we’re supported by so many family and friends back home and around the world, as well as friends and the church we are connected to here in Singapore. Most of all we know we are in the hands of an almighty God, and he will not fail us.

Thank you for your continued love and support, it means so much to us!

Navigation: Halfway

If all goes to plan then we’re already halfway through our Singapore journey. Disbelief when I think about all the ins and outs of everything so far. Strange satisfaction. The emotional rollercoaster hasn’t been fun - lessons in the past two weeks have been particularly steep (for me anyway), though I do appreciate the learnings with every turn and curve. Really great character building heh heh.

To help break it down a bit, perhaps a super succinct preface of myself might help: I am a Generation Y, single, fledging design academic… Tell me in which part of that caregiving experience comes in. Not a thing. The extent of my caregiving qualification is dates with my eleven year old niece, which are beautifully romanticised bubbles of two way adoration (hi Mia I miss you). I love helping people, so much. Life purpose status. But until now it’s always been in a way I’m familiar with, in my schedule.

Enter, Becks as an outpatient. You already know what’s coming haha. The first two days were a full blown shock to the system, for both of us (in our own ways). Looking out for my sister in the ways required on this trip are not natural for me. Had to switch up love languages real quick. Navigation seems to be the best term for what has unravelled since, and because I love lists that’s how I’ve tried to organise the chaos. What rest period?

  • Physical navigation - working out which ways the apartment does/doesn’t work for Becks (height/spacing of things etc), everyday tasks without nurses and learning and accepting where and when I’m needed, tackling the train and weaving our way between elevators and platforms, physio sessions, trying (and mostly failing) to get enough rest to be the support I’m here to be,
  • Social navigation - agreeing how to spend our days when our recharge strategies are on opposite ends of the scale: Becks a full blown extrovert feeding off contact with others and being out and about, myself a happy hermit when there is lots going on and needing time alone to be a nice human (more on this one in another post, it’s been a biggie),
  • Emotional navigation - supporting Becks in her emotional preparation for 21 days in isolation, helping her feel at home in a foreign country during a time of vulnerability, adjusting to the sudden change of lifestyle, cutting myself some slack when I feel like I’m in over my head,
  • Spiritual navigation - trusting God in all the challenges and frustrations and thanking him for everything through good and bad, remembering that he paved the way for us to get here and will see us through, knowing the opportunity this is to grow deeper in our relationship with him.

Lengthy post but there ya go. I’ve said this before, but I’d still rather be here than anywhere else. It’s a special time and a privilege to be on this journey with my sister. The ups outweigh the downs any day.

Real love always has a concurrent action, a positive manifestation, and a hopeful outcome
— Kris Vallotton

New homes

FullSizeRender 6.jpg

10 April

Becks' home for a couple of weeks: Ward 72 at Singapore General Hospital. Staff here are lovely and sister being sister is quick to make friends with the nurses. Some have even made the Facebook cut. Lots of adjusting for Becks with glam hospital life but overall coping really well. Core duties for me include making sure all her technology is charged and her mobile wifi working so she can be in touch with everyone back home.  I'm also twice the size of half the nurses here (lolz) so I help with lifting when I can, and I've been sitting in physio sessions so I can help Becks with stretches and exercises when she's up to it.

For the first part of the trip I'm staying with one of my besties Vera, who happens to live in one of the closest apartment complexes to the hospital. You can even see it from Becks' room (it's the building in the sun in the photo). God looking out - the chances of that were crazy.  It's just a 15-20 min walk to the hospital, but don't be fooled. The heat is no joke. Everyday I turn up to the hospital a hot mess (only in the literal sense, nothing attractive about it). I thought you love heat Phoebe, they say. Yes - I do, when I'm tanning next to a pool. There's a big difference.

Logistics and timings

Because I am no medical expert, here is my ABC version of how a stem cell transplant works at Singapore General Hospital. The rationale is to reboot the immune system, with the hope that the new immune system will not attack the way it has with MS. There are two parts to the process:

  1. Harvest (Inpatient, 2-3 weeks)
    During this time, there is one day of chemo to injure the bone marrow. My sister is then given injections to release the stem cells from the bone marrow into the blood stream. After this, there is a stem cell collection (3 million) taken from the blood. The stem cells are then conditioned, and the good stem cells are separated from the bad ones.

    In between: Rest (Outpatient, 2-4 weeks)
     
  2. Transplant (Inpatient, 3-4 weeks)
    This part of the process all happens in isolation. It starts with four days of chemo to wipe out the immune system, then one day of rest before the new stem cells are injected. The time after the transplant is apparently the hardest physically and emotionally (Superman dad is coming to the rescue around then for extra support, yay Papa!).

    After: Rehab, neutropenic diet (diet for low-immune system) for 6 months 

The particular stem cell transplant Becks is having at Singapore General Hospital is nonmyleoablative, so of lower risk than other stem cell transplants available. The biggest risk during the process is contracting any infection, particularly while the blood count is low after chemo, but obviously we'll be doing everything we can to avoid that. A healthy sister with a healthy new immune system is the expected outcome yes yes.

Why this is a really big deal

To keep this brief, being here and sister having this transplant is a huge breakthrough for her and for our family. Three long years coming. During this time there’s been close calls to having a stem cell transplant in Chicago, Tel Aviv, and Sydney, and a great test of faith when each has fallen through. Medical trials. Timing. Costs. Funding. But in the wake of closed doors and disappointment: Singapore. Within two months of it even being mentioned, we’ve been for one trip, she’s been accepted, and now we’re here.

Godspeed.

Why a stem cell transplant

My older sister Rebekah has suffered multiple sclerosis (MS) for the past 17 years. It’s basically a nasty disease where your immune system attacks your own central nervous system. For Becks this started as tingling and numbness, and has escalated to losing a lot of strength in her legs, weakness, fatigue, damaged vision, and getting sick easily. I wouldn’t wish it upon anyone.

Becks has had every treatment available in NZ. A stem cell transplant (using her own stem cells) to reset the immune system is the next best option. This will hopefully stop the MS from getting any worse, and possibly even see some lost functionality gained back again. Stem cell transplants do happen in NZ, but unfortunately not yet for MS. So that brings us here to Singapore. If only the journey were as simple as that last sentence.

If you want to read more about my sister’s journey, she has a blog about her journey with MS at underyourwingblog.com.