Last lap? To T+113
Is there anybody out there? Couldn't blame you if you had given up on us after so long without an entry, but as several have mentioned, no news tends to be good news and that has been the case with us.
We are at the point now where Saffy's last immunosuppressant drug (Cyclosporin, aka Neoral) is being eliminated by stages. We are down to 0.3 ml twice a day, from a high of 0.55. This drug suppresses any GvHD, so we can expect to see some sign of it as the dose comes down. So far, all we have seen is the intermittent rash we saw in hospital, which appears and disappears after a few minutes. If we can get away with nothing more than that, it will be a miracle, but then, everything has been a bit miraculous so far.
The issues we have been contending with so far have been different to those we were expecting, as Saff has been so well. With me going back to work, Sonja has been pretty much stuck in the house as Saff is not able to be around groups of people. For someone who has been used to working full time, that is a hard transition to make and it has taken quite some getting used to. For my part, I have been working full time for quite a while and taking over on duty from Sonja at weekends. The practical result of all of this is that it takes quite a bit of planning to do anything outside the usual routines and time out of the house for Sonja and me together, or for us to take Reuben out. Don't get me wrong, we still thank our lucky stars each day, it's just that we are not living what you could call an everyday life yet. Between Reuben's diabetic care and Saff's medication there are around 8 entries in our daily medical diary, when they are both at home, so it is a bit of a stop-start existence.
It has been a great help to us all that friends and family are really putting themselves out for us and the messages we continue to get from friends through ISMRD and GOSH reminds us that we're all getting through with each other's support.
Have to go now - it's bathtime and I've got some Hickman lines to wrap in clingfilm....
All the best
Martin
We are at the point now where Saffy's last immunosuppressant drug (Cyclosporin, aka Neoral) is being eliminated by stages. We are down to 0.3 ml twice a day, from a high of 0.55. This drug suppresses any GvHD, so we can expect to see some sign of it as the dose comes down. So far, all we have seen is the intermittent rash we saw in hospital, which appears and disappears after a few minutes. If we can get away with nothing more than that, it will be a miracle, but then, everything has been a bit miraculous so far.
The issues we have been contending with so far have been different to those we were expecting, as Saff has been so well. With me going back to work, Sonja has been pretty much stuck in the house as Saff is not able to be around groups of people. For someone who has been used to working full time, that is a hard transition to make and it has taken quite some getting used to. For my part, I have been working full time for quite a while and taking over on duty from Sonja at weekends. The practical result of all of this is that it takes quite a bit of planning to do anything outside the usual routines and time out of the house for Sonja and me together, or for us to take Reuben out. Don't get me wrong, we still thank our lucky stars each day, it's just that we are not living what you could call an everyday life yet. Between Reuben's diabetic care and Saff's medication there are around 8 entries in our daily medical diary, when they are both at home, so it is a bit of a stop-start existence.
It has been a great help to us all that friends and family are really putting themselves out for us and the messages we continue to get from friends through ISMRD and GOSH reminds us that we're all getting through with each other's support.
Have to go now - it's bathtime and I've got some Hickman lines to wrap in clingfilm....
All the best
Martin
posted by Saffron Woolley @ 6:19 PM
5 Comments:
At 10:33 AM,
Anonymous said…
Hello Martin and family,
Yes, we're still here. Have checked the blogg for most of the past 29 days, but fully understand the lack of posts as things have been going so well.
We are all so pleased for Saffy and the rest of you. There was the potential for some very rough times in the past few months, and it is good to see that is has been relatively plain sailing for you all. Best wishes from Enzed.
John, Judith, Timothy and Hollie.
At 1:02 PM,
Anonymous said…
Team Saffy,
It is great to hear that there's nothing to report - that was the goal, wasn't it? What a difference a year makes, too! Thanks for sharing this journey with everyone, which will provide a guide to those who come after you. I'll keep in touch, of course, and hope you will too.
Say hi to Saffy and Reuben from Taryn and I.
Your friend,
Paul
At 2:10 AM,
Anonymous said…
Hi Sonja & Martin,
I have thought many times of how Saffy was making out, if you had found a match for her and if she had started treatment. This is the first time I've sat down on the computer in months and decided to log onto "our family" site. I see that Saffy is past the worst part and seems to be doing well, what the doc's consider well but as a parent it is hard to go through this and think any of it is good or well. I hope you are all hanging in there and I know that you still have a long, and secluded, road ahead. Keep your chins up and keep positive, there is a light at the end of this tunnel but with some bumps along the way. Kids are amazing and very strong and somehow find ways to smile through these difficult times maybe not during line dressing changes or all the meds she has to take but hopefully soon after.
Some good to mention, despite my Sarah's many road-bumps through this, she is 100% engrafted and her hearing loss in both ears has disappeared and she no longer needs hearing aids!! To look at her now, you couldn't imagine she has gone through all she has.
So look to the future, it will get better in time. If you need a shoulder or someone to talk to, please give me a call or email.
Best wishes,
Danielle Forsman
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