the journey

1 4 3

Sometimes God speaks to me in numbers. 

A few months ago it was 11:11. I would look at the time to see it was eleven minutes past eleven - the frequency became kind of ridiculous. 11:11 is believed to mean that you’re coming into a time of transition. Wonder what that could've been about.

More recently it’s been the numbers 143. I would see (and still see) this randomly and all over the place. At first I just took it as the urban slang for ‘I love you’, which I thought was God just being cute, hahaha. But it was happening a bit too much, so being my Generation Y self I took straight to Google. The first and pretty much only hit was Psalm 143. I read it putting myself in the shoes of my sister, and bruh. Feels. I'm filled with a fresh sense of compassion each time.

Lord, hear my prayer,
listen to my cry for mercy;
in your faithfulness and righteousness
come to my relief.
Do not bring your servant into judgment,
for no one living is righteous before you.
The enemy pursues me,
he crushes me to the ground;
he makes me dwell in the darkness
like those long dead.
So my spirit grows faint within me;
my heart within me is dismayed.
I remember the days of long ago;
I meditate on all your works
and consider what your hands have done.
I spread out my hands to you;
I thirst for you like a parched land.
Answer me quickly, Lord;
my spirit fails.
Do not hide your face from me
or I will be like those who go down to the pit.
Let the morning bring me word of your unfailing love,
for I have put my trust in you.
Show me the way I should go,
for to you I entrust my life.
Rescue me from my enemies, Lord,
for I hide myself in you.
Teach me to do your will,
for you are my God;
may your good Spirit
lead me on level ground.
For your name’s sake, Lord, preserve my life;
in your righteousness, bring me out of trouble.
In your unfailing love, silence my enemies;
destroy all my foes,
for I am your servant.
— Psalm 143

Admission Duo

8 May

On the day of Becks' admission, here's the verse from my daily reading:

I see what you’ve done. Now see what I’ve done. I’ve opened a door before you that no one can slam shut. You don’t have much strength, I know that; you used what you had to keep my Word. You didn’t deny me when times were rough.
— Revelation 3:8

Fitting. Comforting. Encouraging.
Lesssss go yo.

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.

Thirty Five

7 May

Becks’ 35th birthday fell the day before she was admitted for her transplant. How’s that for a birthday present - a whole new immune system. The biblical meaning of 35 is also hope. Cute.

With her hospital admission also equating to the start of her neutropenic diet (no raw, fresh, or uncooked foods, everything home-cooked, and a million other rules), we eagerly translated this as a chance to go ham on everything she wouldn’t be allowed as our celebration. The night before her birthday we took a trip to Chinatown food street for dinner, and afterwards met up with VM for dessert at our favourite calorie joint Awfully Chocolate. We finished the night chilling poolside, and opened a care package that had just arrived from our relatives in Melbourne - thank you Aunty Tania, Uncle Phil, and Emily! Have to make a shout out because this gesture was such a beautiful surprise, crazy generous (even colour co-ordinated), and gave all the warm fuzzies at just the right time. Seriously perfect and we felt so loved. Thank you.

The next day on Becks’ birthday we went out for lunch with our friend Gracie who is the pastor contact we have from the church here, along with some visiting pastors from New Zealand (Kapiti Coast of all places, such a small world). Dim sum was on point with amazing service. The wait staff even had ear pieces for communication from their supervisors, all secret service-esque - Singapore efficiency strikes again haha. Comforting talks about mutual friends and many dumplings later we rolled our way back to the apartment to get sister all packed, ready, and rested for admission day. The big part of the journey about to begin, and so starts the year of hope.

A sister, a bestie, and a care package, with a view. One of those moments.

A sister, a bestie, and a care package, with a view. One of those moments.

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!

Like/Dislike

Three things I love about Singapore:

  1. The heat - I would choose this heat over a windy winter at home any day. I don’t get excited thinking about the wind tunnel as soon as I step outside Wellington airport.
  2. The food -Dumplings. Roti. Char kway teow. Asian food in general. Rawr.
  3. The shopping - More people equals more shops and more variety.

Three things I dislike about Singapore:

  1. The heat - I love warm weather but a 33 degree average is slightly above my comfort threshold.
  2. The food - Tasty food over here tends to mean grease, sodium, and carbs. My more health-conscious self has escaped me.
  3. The shopping - No such thing as shopping without spending. A few accidental dents in the bank account.

#WheelchairChronicles 2: The long way with wheels

I am completely sure we are right above the train station for good reason, because Lord knows that I would keep Becks inside the apartment all day due to extensive wheelchair mission otherwise. The other day Becks had a coffee date a simple 3.5km away. Manageable. Sure it was eight different elevator rides, two train rides, and a labyrinth in between just to get there, but nothing we hadn’t done before - our meeting point was just one stop further than our usual (getting a taxi can stress me out, I’ll save that for another post). For the most part, getting around mainstream Singapore via wheelchair is doable so long as you know the places to avoid (aka Chinatown). Orchard Rd being one of the main shopping streets in Singapore should’ve been fine. Ummm no. Closed wheelchair access paths, 150m wheelchair access detours (gah), in combination with Google sending us the wrong way and overheated brain not able to realise it, had me a flustered and furious mess. Late, lost, and wrong. Three pet peeves all in the space of 30mins. Tipping point, I cried. Hahahaha. Poor sister was so patient even though I made her half an hour late, and even bought me cupcakes afterward to cheer me up. What a world what a world, on wheels.

Where's the Podium

To celebrate my personal metaphorical distances traveled, an anecdote about feet.

I’m grateful for these miracles at the end of my legs, they serve me so well. However, I tend to have an issue with human contact. I get weird if people touch my feet, and I don’t really like touching other people’s either. Don’t ask, it’s just one of those things for me. On the first trip here for Beck’s assessment, she needed her feet massaged to reduce swelling. Matttteeeee. For me this was like laying down my life haha. Of course I did it, but not without being hit with mental queasiness and being extremely upset on the inside haha. Fast forward to now and I’m right in there everyday for physio, and also well accustomed to many other things I would previously squirm at. (Obviously nothing odd on sister’s part, I’m just a bit precious haha). I feel like I’ve conquered Everest. The sense of achievement equates to success stories on weight loss programs. I have overcome many adversities and barriers to get to this point. I’ll take my bow now. Thank you.