Monday, April 11, 2011


Friday's blog post was admittedly vague giving us a chance to process the information locally and for you to be let down gently, not least if this is your only source. Unlike previous scans, the images were not showing a clear lump, but it was clear that part of the brain is swollen, which is what has been causing Pads pain. The white patches were described as forming a dusting over the surface of the brain. The consultant was sure this is recurrence, coupled with Pads' symptoms of mild neck pain, vomiting and lethargy. No further curative treatment is available. It may be that oral chemo could improve his quality of and extend life, but it may do the opposite... The key thing will be to keep on top of his pain, and we're assured they have a near infinite range and depth of options for that. The purpose of the 'spec' scan would be to confirm the diagnosis and point the way forward. There is also a multi-disciplinary team meeting today which may shed more light.
Pads received the news remarkably well: his first words were about how he'd get to be with Aunty Wendy, whose funeral we'd attended earlier on that day. Then we got onto talking about some of the things he'd like to do while he's able. Although this was fairly cheerful, he, and his sister for that matter, would still rather not talk about it - except on their terms. We've had a fairly awkward weekend of relaying the 'bad news' more exactly.
On Saturday we'd planned a quiet morning for Pads to reserve energy for the rest of the day. Then we remembered he'd wanted to attend the LATCH Brain Tumour Support Group (which had already started across town!). Ally and the rest headed off to Caerphilly for a service at a nursing home. Pads and I went in the opposite direction: Willow's High School, to join 4 others and the redoubtable social workers, Dan and Kay. It was a cookery session: pizza and muffins. Pads wasn't eating anything but he enjoys the company. I got to tell Dan. While he was there I visited a friend and told him. Meanwhile, Ally was receiving her brother and his family who are emigrating to Australia in 2 weeks, and breaking the news to them. We had a calm afternoon with them and then it was time to dine out for cousin Llyr's 18th birthday - at our favorite Mexican, El Paso's. It was another happy time. Sunday was busy, as usual. There were lots of people to talk to. Everyone has been rooting for us and so many pray for us and Pads in particular every day. Given the remarkable series of serious events that have struck our Church members (illness, accidents, etc.) it would have been understandable for the pastor to opt for soothing messages, but we instead have a new series on 'Bible challenges'. He brought a sermon from Genesis, where God asks the newly fallen Adam, 'Where art thou?'. And where are we? Are we hiding from God in the darkness or actively seeking fellowship with Him, in spite of our sin which so appalls His infinite holiness? For He has made a way back to communion with God through his blessed Son, who died, once and for all, to take away our sins, blot out our transgressions and purge our consciences. It is in this 'good news' we glory, and trace the goodness of God through our tragic circumstances. After all, wasn't the greatest good (our salvation) won through the most horrible act (Christ's crucifixion)?
It's the evenings that Pads finds tricky. His mind starts to race before he can settle to sleep. Last night he was writing some of his worries down and Ally was able to address a few of them which helped. Something which worries him is whether he'll be seeing various people who are close to him in heaven (how about you, for example?).
We're working through what can and can't be done with however long we may have left and informing more people who need to know. Moli's school teachers now know, and so does Pads' tutor, who was expecting to come this morning. Instead of that Pads has been cheerfully composing his 'bucket list' (of things he really wants to do/see). Some of them read like as if he's just trying to wind his siblings up ('watch Jaws with Moli', 'get Ash/Bo to have a skin-head') and may require re-interpretation.
We do not stop believing that God can heal Him if it His will to be glorified in this way and are sure that many of you believers are with us in our prayers to this end.


Anonymous said...

Hi Mike, I thought that your post last week may have alluded to this. I don't know you or your family but have been reading for about a year and am sorry to hear of your most recent news. I hope that you are able to do everything you can with Pads, LATCH sound fantastic and there are so many other wishes charities out there. I don't know if you've come across them but there is a charity called REACT who are also fantastic.

Mike Johnson said...

Bryher - thank you for your interest. The recent Florida trip was a more than adequate 'wish come true'. It cost a fortune in health insurance alone! The timing was spot on. We originally planned to wait until May, but with the recent scan result we'd be unable to leave the country. LATCH was instrumental in that: Kay wrote to endless charities on our behalf and we ended up with a very healthy sum.

Charlotte said...

Mike, blessing and privilege to speak to you and Pads briefly in Chippenham. We have followed your news prayerfully for so long and continue to do so now with each day that goes by. Am sure real biblical truths have taken on ever deeper meaning and provided greater strength than ever before for you and the family. You are much upheld in prayer by the Lord's people in many places. Our greetings to you all. Oliver and Charlotte