Never forgetting how far we’ve come I’ve posted the above photo today showing Hamada when he first come home from Nottingham City Hospital after his Stem Cell Transplant. This was in late 2007 and there have been a good few battles along the way since then. With his courage, good medicine and management of this difficult disease, Hamada has beaten many odds and now once again is fighting his way forward, this time just having received his 10th infusion of Velcade. A few stops and starts along the way with lowering of Platelets and Neutrophils, a nasty chest infection, some needed G-CSF injections and the wonderful skills of the phlebotomist at Lincoln County Haematology department, who’s gentle care on extremely over used veins ( twice weekly, showing how delicate this whole regime is ) just constantly amazes me. Particular thanks goes to Jill who kindly uses paediatric phials for Hamada, these little things help ease the way, and with such gentle care, praise indeed.
We do not have the current Para protein M-Spike reading but are forever hopeful it has fallen again from the last 14.4 marker.
Bloods are holding: HB at 9.3 Neutrophils at 1.66 WC 3.1 and platelets at a great(for H)47! Kidney function is now 18%.
The journeys are tiring at least twice a week and sometimes four if other clinics need attending and on Chemo days, the wait is long between blood taken and the results but it is a tiny price to pay for any lowering of the myeloma burden and we feel joyful on the return from Oncology when success is had.
Although it is early days with the Velcade, Hamada is having no other side effects and seems brighter and with what I call his Dex face – looks better than he has for some time.
So never forgetting how far we’ve come, we forge forward with hope that Hamada will reach his 50% reduction target after the next six infusions and so be able to continue according to the NICE UK Ruling.
Addendum:
Hamada completed his 11th Velcade on Thursday but platelets dropped from 47 to 28 in two days, I spoke too soon! He received platelets again on Friday and feels much better once again. A weeks rest then check-up next Thursday and hopefully continue the Velcade the following Monday. Onwards to success DV.
Supporting www.myeloma.org.uk
A wonderful reminder to celebrate how far we’ve come. Thank you, Susie. It’s very easy to get caught up in the day-to-day issues that confront us… awaking at 3:30am to take pills and prepare to go to dialysis; a new pain – is it something to fret about?; fatigue (for both of us). Your thoughtful post reminds me to look back to May 2006 when Vern was first diagnosed and recognize just how far we’ve come. He’s here! Two years longer than any of his docs ‘predicted’. He’s walking with a walker now, not in a wheelchair. He’s home, not in the hospital. These are indeed reasons to celebrate. I wish both you and Hamada continued success with his Velcade treatments. I’m here cheering you on from ‘across the pond’. ♥
Hear hear, Susie! I will keep my fingers crossed for that 50% (at least!) reduction, too…All the best to both of you…:-)
I think I’m going to need to buy some more pillows for after my SCT! The other thing I noticed is that whilst H and you are both smiling – yours is a little sad (this is the only word I can come up with but it’s not quite right) – I must remember to be extra nice to my husband during this time too – but not too nice or he might think I’ve done something to the car!