Welcome Back Scott
Day +10 : Amazing Blood Results!
More good signs today, I’m rejoicing.
Sleep : Brilliant sleep at last. 7 hours deep rest, what a blessing.
Energy : Very calm, peaceful, heart open to God and others, mind in dream/imagine mode often. Over the last days I’ve been emotional, especially around expressions of kindness from God and people – I’ve had proper tears that you need a tissue for!
Blood Results
Amazing Blood Results Today!
The kidneys ALL CLEAR for second day in a row (urea, creatinine and e-GFR all in range…e-GFR 77 🤸♂️). What an answer to prayer!
Red cells UP, Haemoglobin 9.0 up from 8.8 yesterday 🌟 🩸
Platelets going UP – 20 today, from 7 yesterday.
Total White Cells really moving : 0.68 today up from 0.19 yesterday…more than double improvement.
Infection Markers Down
59 today – PHEW! Feel GREAT 🫶🌟❤️
My worst day, wed 30th, I was at 381…as of this morning, back down to 59…en route to base camp at less than 5. Wow, that was a roller coaster! 🎢
Neutrophils … not yet available from the lab…this all comes super-hot off the press 😱🤣. But this is is the key number to watch. It’s a primary immune-strength indicator and is one of the key items they will assess to see how long in need to stay in for. Yesterday was 0.05…needing to get to 2.
This is all going the right way for potential discharge from hosptial if we keep up this momentum.
Physio
I had my second session of physio yesterday doing basic exercises with Resistance Bands…good fun and a sign that they are getting me back ready for the real world🥳
Joel & Kim
Seeing Joel and Kimberley for a brief visit again this afternoon which is also such a huge blessing.
That’s it for now.
In terms of PRAYER, my THANKSGIVING is around the apparent strength with which re-engraftment is taking place. This can’t be taken for granted and seems to be going well for me. I’m SO THANKFUL for this and for growing potential of starting to build momentum forward into new dimensions in what may be ahead.
Prayer and Thanksgiving also for my organs and overall physical, memorial, emotional, spiritual fitness.
Huge love and thanks,
Scott
Day +9 : Big Positives Today
Hopefully my last early morning update as things have normalised so well.
Better sleep, but still the ambient-bright-light hospital sleep that is a bit like shallowly watching a series of half movies on a long planes ride. But I am thankful to still feel rested and the days help with catching sleep too.
Big positives today:-
• it’s Day +9…at some points I wondered if I would actually get here – seems like a big day to me. SO SO THANKFUL.
• feeling NORMAL on arising, overall sense of wellbeing and equilibrium returning
• read, prayed, worshipped in heart – so much more freedom than with infection markers at 381!
• Great blood results
– Infection at 95
– e-GFR holding nice at 75
– creatinine, urea 95 & 6.1
– Engraftment! White Cells 0.19, up again after first sign of turn on Day +8 yesterday…from 0.07 on Wednesday to 0.19 today is 170% increase and real sign that Engraftment is happening. 🌟🥳🌟🥳💫
Red blood cells are holding ok but not rising yet…8.8 on haemoglobin today and record low of Platelets at 7…can’t go much lower!
So, I look forward to assessing it all with the doctor/s and going on to navigate another wonderful day that The Lord has made, albeit in one of those more vulnerable days of my life.
Best highlight of the day coming up, is the plan to see Joel & Kimberley Cunningham today!! Married 10 months now. They have arranged to come down from Bulawayo specifically to link with Claire and me, which gives a feeling that all the codine and morphine combined cannot compete with. I’m sure they have lots to do in jhb, but I’m looking forward to a couple of visiting hours with them SOOO MUCH….and I think Claire may have more time did to the strict visiting regime etc here. Anyway – just 5 minutes will be amazing!
Thants it for now – huge, huge love
Scott
Day +8 : Last of the Mohicans
Slow today with only one hand due to directional sensitivity of peripheral line drip – sorry!
Good day! Definitely making progress along the bottom of the barrel ☺️🤩🥳 (still hoping to have the energy to show you on graph because so difficult to explain in words alone!)
Slept medium which is not all bad…more importantly, feel MUCH BETTER than the last two days.
Kidneys doing brilliantly at 74, red bloods doing brilliantly holding their own, at this stage, still under fire. White cells successfully completely obliterated, flatlined at 0.10 ( but showing glimmer of hope as improve from 0.07 yesterday…couldn’t get much closer to 0.000!).
I did share some thorough pointers on best advise on how to proceed with funeral logistics with Claire yesterday in case the need arose – laughter and tears. So much love for each person as we imagined it all and the joy & fun, amidst tears, it could be.
But I feel full of INSPIRATION and excitement for 2025 and the years that The Lord may be giving me. I’m writing notes at night and can hardly believe the sense of determination, excitement and willingness I see in myself to do things more intentionally than ever. Seeing the vibrant multiplying churches ever relevant to the poorest in spirit, soul and body. Real Churches with Real Life In Christ bringing Real Change in the World, replicating exponentially, to see Nations being made Disciples. The salt of the earth and the light of the world. What a prospect!
Day +7 and I think I am halfway through the resuscitation phase. I will be proposing a change to the presented expectations of Stem Cell Transplant to include the word – ie not just engraftment, but Engraftment & Resuscitation 12 days. It’s just like nothing I ever faced before…a 12 round fight with the first 6 rounds tight ropes around your hands (but the crowd can thrown some punches for you!), second six rounds slowly loosing off…see how it goes! EEEiiisshhhh!!!
So it’s a HOPEFUL trajectory of
• 6 Days Hyper-Chemo
• 1 Day Rest and/or Dialysis
• 1 Day Infusion
• 12 D Engfaft/Resuscitation
• Discharge mid-Nov for 2 months home recovery avoiding infection
Just seen Dr Jasset – pocket-rocket female Haematologost who works with Dr Dave Brittan (Man’s man who I connect with massively) and they are covering for Ashmoore on leave. Tiny women but POWERHOUSE – I love her style, humility, condfidence, capacity. Muslim background and we are beginning to connect on broader issues which is fun.
She is so happy with infection markers coming down today (188 from probably a high of 250 yesterday) and VERY POSITIVELY the identification that it is probably come from the jugular port being in for an unusually extended length with dialysis risk etc. but wonderfully, appears to be a relatively minor infection identified through speedy growth of the blood cultures highly specialized and efficient labs on side here- wow. So – Dialing down on big guns antibiotics and remarking with more sniper-style tactics which is great. The care and attention has been remarkable.
My appetite is strong, my mind and spirit so alive. Body doing well, needing except use and Physio starts today in practice with Thera bands and all
On the right track and, I think, the first signs of a clear way through over the next 7 days…. Just my gut-feel.
You guys have been more than I could ever have asked for in terms of ‘community support’ – they talk of the importance of at least 3 people to truly hold you at heart through the length of the process. I am so thankful for the wealth of provision on this prayer, care and love group.
Much love and thanks,
Scott
PS:
Last of the Mohicans for a while 🥳🤣
Hair falling out on my hands, face peeling, chest going back to snake belly…but I thought I’d share this last moment of joy before dessert again ☺️😱
Day +7 : New Beginning?
Family & Praying Friends,
Having had moments of despairing of almost life itself yesterday, I’m overjoyed to say that I have woken with new vip and vigour today – not bouncing of the walls or swinging from the lights – but in myself a greater sense of peace, resolve and improving equilibrium, I believe.
Perhaps the beginning of the new beginning ?
I missed the golden opportunity of having Steve Oliver and Dave Devenish visit yesterday for +-15mins as they both flew in for some Regions Beyond (Africa) gatherings in Jhb. It was all lined-up with provision of masks, coats social distance and all…until they heard ‘international travel’. With perhaps my literally lowest physical point (Day +6) they were especially reticent at the idea and declined the visit. I tearfully accepted the loss and actually think the emotion release helped a lot. For me, the authenticity to scripture and the authenticity of lived loves together undid me and it was good to cry. On the first : ‘When I was sick you visited me’ (Matt 25.36) – so simple, but so powerful, i think especially for the sick guy!)
And secondly, the authenticity that we are a family, and family of families, on a mission together. To experience the tenderness, the brotherliness, the sincerity for men I love, respect and have received some much for over many years, many years was humbling and made me worship Christ – this is what we are part of. Fathers who are strong, courageous, exemplary, inspirational…but their father lines so often expressed in such brotherly kindness, tenderness, listening, nurturing, empathizing, stopping along their way to pray for sick…and all the while continuing the mission to Regions Beyond! The themes left me crying a wonderful flow which may be made me more tired, and may have contributed to sleep?!
My day nurse has been such a joy to have walk the last excruciating days with. She is a Hero. The nurse who I have in the night also did AMAZINGLY with me last night. Blood lady, incredulously, failed to arrive for routine blood take between 3am and 4am so I have got them moving on the now…but no results yet.
Hopefully Dr. at 10/11 and hopefully some encouraging parting of the clouds for +Day 7.
I think that’s all from me
Thanks and huge love and strength from The LORD for ALL you are facing today.
Much love
Scott
Day +6 : Infection Battle
Much rougher night. Perhaps as a result of the cortisone/steroid administered with the platelets. I was intermittently aware of dazing or dozing for most of time, with eyes closed, but perhaps 1 hour actual sleep.
Intitial blood results show e-GFR down at 61 (60 would be low range, max range >89). Creatinine at 117, slightly above max range of 115, which is not ideal. These kidney measurements tend to be skittish, as has been described to me, and I continue to hope to stay above the realms kf too low there.
There seems to be an infection battle and I think it’s the eye of the storm.
I may send a short update after the doctor has visited – usually 10am or so, which will have more perspective on the and probably other news on platelets, neutrophils etc
Huge love and thanks for your frontline faith
Love
Scott
Day +5 : In the Fight
Woke later than before and I think the sleep was one of the better of the last 2 weeks – what a blessing.
Much encouraged by blood results just in. Gloriously, e-GFR has upticked to 71 which is feel beyond thankful for. Kidneys holding well with good urea and Creatinine levels (7.4 and 103) – what a relief and strength to have navigated to this point on DAY +5.
Feeling like I’m in the fight, from very close to the fire, in the trenches on frontlines. Fragile, vulnerable constitution like my overall energy can change at any time, waves of discomfort in forms of mild issues like toilet run or just needing to weather the sweat or diagphram spasm or whatever. They seem to have me in really good hands and I’ve been so thankful for how I’ve borne up so far.
Platelets 24 today and the faintest sign of uptick in neutrophils is so encouraging. All on track and platelets still on stand-by for emergency infusion if needed.
There we be more discussion about my ‘central line’ – the jugular port – with options of 1) refurbishing and remaining, or 2). being relocated on another part of neck, or 3) taken down to use a ‘peripheral line’ which is less invasive on the arm or somewhere. Pros and cons to all, and I just follow instructions 🤣🌟
I think that’s what I can update now. I’ll probably sleep again now 🫂😱🤗🫶🫶🫶
Huge love and thanks for the standing shoulder-to-shoulder every step
Much love
Scott
Day +4 : Tough Day
Hi Everyone
Claire here …
Scott is doing really well in himself which is a joy to see – especially as it seems today has been the toughest of this batch of 12 days now in hospital.
He has low energy (which he says feels like it comes from deep inside out to his muscles) …. and has had an upset tummy. They are treating the symptoms and say it is very much what is to be expected on Day +4.
It has been a more emotional day – with moments of choke up for both of us – the joys, the challenges, the unknowns and the realities all mixed together. The isolation and loneliness are hard for anyone but I think for someone as friendly as Scott it’s been even harder. He is remarkable in his strength of character and kindness towards me and others throughout.
Tomorrow is Day +5 and may involve two new dimensions.
1) The changing of his jugular catheter to the other side.(normal practice at 2 weeks).
2) Beginning to inject once a day with Neupegan for stimulating cell production and has worked well for him in the past.
Please can you pray for his tummy to normalize, for those kidneys to keep strong and all indicators to keep pushing in the right direction for healing and strength.
Thank you so much for your love and support.
Lots of love from us both. 🙏
Day +3 : Low Energy
Hi Everyone
Claire here …
Scott is doing well … but it has been more of a low energy day again. He has slept practically the whole time. He is peaceful with just the odd niggling gripe and dull headache. The doctor says this is normal until the stem cells engraft which should be around Day +9 or +10.
Scott has not been able to read or engage as much as he would like.
I am doing well too. Feeling less tired today which is good. Getting lots of reading and crochet done.
We would appreciate prayer for Scott’s kidneys to hold out well without getting into any danger zones – that would be the main specific prayer request at this stage : EGFR above 70 at all times would be great and above 80 would “knock the lights out.”
Sending lots of love from us both. Xx
Day +2 : Feeling Stronger
Whoohhooo! 9 hrs sleep, no headache or vomiting, feeling stronger today.
Now 3 days away from the last chemo and beginning to feel some normalcy returning to overall equilibrium, energy levels etc. (the schedule shows that I’m due in hospital for a couple of intense isolation weeks…and then depending on progress I hope to be able to move out into lesser isolated, but still secluded, situations for some time…maybe until Christmas / New Year. All remains to be seen as they constantly tell me ‘every case in different’.
Yesterday may have been the low point?! Not sure yet.
Platelets were at 40, neutrophils heading to zero. But, amazingly, no blood tests done today. I think (in my non-medical rationale) it’s for three reasons :-
1). We think all his inidicarors are doing what is expected, so give the guy a break for a day.
2). It’s not such fun to see your immune system at zero, so just let it pass today!
3). We will treat him symtpomatically anyway, so we will just make sure he is ok with platelets or anything else he may need in the day on an hour-by-hour basis.
All in all, I’m very thankful to have my taste and appetite in place, drinking lots of water and going regularly, heard the birds outside for the first time this week (!), and hoping that my Stem Cells are finding all the best places for good regeneration throughout.
I’ll probably slow down on updates now as I don’t want to over-bombard….but I do value your PRAYER IMMENSELY – THANK-YOU.
Roy Chimanikire sent me this pic of the Call To Worship Pastors at a meeting at Northside Church recently, and where I was prayed for so caringly – I felt quite overwhelmed as I know and love so many of these amazing people.
My hope and joy continues to be in Jesus, for I am convinced that :
It is better to take refuge in the LORD
then to trust in man (incl machines/medicine/money)
(Ps 118.8)
His refuge is a resting place of enduring provision through the all of the best and the worst that life can through at us…even welling up to eternal life with God in holiness for ever.
I have known this hope and joy not as some ethereal or difficult -to-attain concept, but rather very presently and practically in the peace and joy I have had in the midst of extraordinary pain and challenge. In this refuge I have known the sheer joy and power of physical perseverance, financial re-prioritising and provision, social blessing, practical considerations. Startlingly, i note how easily my primary focus can be move to these things themselves, and then, soon after, I begin to compare and selfishly wish i had even more and even better.
I have found that my delight in Christ through these days has truly earthed me in the joy of His knowledge of what is best for His Greastest Glory, and My Greatest Joy IN HIM. The focus becomes not so much the cytaribine drip, or the kidney function itself, as it does become to overriding joy and confidence in the one who can bear all our Hope and Faith and Joy and Love.
Much love
Scott
