Jimmy's Multiple Myeloma Journey: July 2015

2015/07/22

Wednesday, 22nd July

So those little buggers (platelets) are slowly coming up.....

Last Monday, the 13th, when Jimmy went for bloods his platelet count had come up from 68 to 107. This past Monday Jimmy had bloods taken again and we had our follow up appointment with Prof and they are now standing at 121. Prof has decided to give the Cortisone another two weeks to see they if they can continue to work their stuff. If Jimmy's platelets keep improving at the current rate then we are hoping that in two weeks time Prof will start weening Jimmy off the Cortisone over a period of 6 weeks. During this time we will monitor his platelets weekly. If there is no change and they stay up then Jimmy can at long last start the one year of maintenance on Thalidomide. If it however happens that it is only the Cortisone which is serving to keep his platelet count up then he will have to go on to some other medication as he cannot stay on Cortisone long term due to all the side effects and Prof will have a look and the situation and decide on the road forward.

Jimmy's white blood cell count is at 6.5, this being the highest it has been since he was diagnosed, except of course when he was on Neupogen injections to boost his wbc. His red blood cell count is slightly low and his haemoglobin is now in the normal parameters.

The 3rd school term started on Monday so it's back to routine with homework, sport and projects. We look forward to the Bergvliet Derby day on Friday night and Saturday and it's freezing cold and there is rail forecast for Friday night. I can believe that a year has passed. I distinctly remember saying these same words this time last year in my blog. Loren and Shannon have the start of Matric prelims at the beginning of September, Matric dance at the beginning of October and Matric finals start end October. Min dae....

We spent a lovely family day out during the holidays which is rare these days with the kids getting older. Even a family photo is quite a thing to organise! We took ourselves off to Canalwalk and did some clothes shopping for the kids and then enjoyed a lovely Portuguese lunch at the Diaz Tavern in Cape Town. From here we were off to Newlands to watch the Springboks in top form and what an awesome win it was.

Some family photos taken at the Diaz Tavern

A testament as to just how well Jimmy is looking

We missed you Megan

And this photograph was a walk Jimmy and I took just before sunset at our beautiful beach in Fish Hoek.

2015/07/09

Thursday, 9th July

Hello everyone. It feels like months since I last updated the blog. I actually had to do a re-read of my last post and now I'm sitting here trying to memorise everything that we have been up to. It's so wonderful!

We are still in school holidays here in the Western Cape and thankfully the weather has not been too bad, considering how cold it was for weeks a month ago . The kids are all with us which has been lovely. Just yesterday morning I was thinking to myself that I am missing Megan not being here too. And not 3 minutes later my phone rang and it was Megan. I told her I was just thinking about her and she said "but mom, you know we are on the same wave length".

Last time I blogged I mentioned that Jimmy had been very busy with work and done 2 trips. It ended up being 4. At one stage he was spending more nights away from home than he was home so I told him I am back to being his part time lover.

Our dear friend Wayne from Kwazulu Natal was in Cape Town so we had a visit from him. Matthew was also here before this from Johannesburg so it has been really good catching up. Everyone is just so chuffed to see how good Jimmy is looking.

We went up to Langebaan last weekend for the Sunshine Corner annual golf weekend away, spouses included. Last year we missed this so Jimmy was really looking forward to it. He played his first game of golf since February last year on Saturday and then again on Sunday morning. And it was all smiles as the men cheered him off at the first T. Such a special group of friends keeping an eye on him and celebrating Jimmy's happiness.

We visited the West Coast Fossil Park which I can really recommend if you are ever up that way. I had no idea it even existed and was blown away with all the information that Patsy and I walked away with. It's rather difficult to comprehend that 5 millions years ago Langebaan was an island and the area where the fossil park is situated was a tropical rain forest. They discovered 5 species of elephant and a bear from way back then. I could write for hours about it. A real gem of a tourist visit.

So things really are back to normal including the man sneaking up to Clovelly on a Saturday morning....oh hold on...that was me getting muddled up with our arrangements hehe. Jimmy has also started playing Corporate Cup golf again.

Jimmy had his 2 week follow up appointment with Prof on Monday after being on the heavy dose of Cortisone for 2 weeks. His platelet count only came up from 26 to 68. His white blood cell count is coming up nicely but also not much luck with his red blood cell count. Prof assured us that they re-checked the bone marrow biopsy results as well as the m-spike results and there is definitely no evidence of any Multiple Myeloma and that this problem is completely separate from the cancer. Prof is not happy with the results of the Cortisone and says 68 is only a partial response. He reiterated again that Jimmy's body is definitely producing platelets so something is eating them. This low platelet condition is called Thrombocytopenia. There are a possible 4 reasons that could cause platelets to 'deminish' but I won't go into all this now (I'll do a separate page on the blog explaining Thrombocytopenia). Prof Novitzky says that Jimmy has developed an auto-immune disease as a result of the stem cell transplant - his body is recognising the platelets as foreign and destroying them. On the very positive Jimmy has not shown any signs of bruising or bleeding which is something we now have to keep an eye out for. He also has to be very careful that he doesn't bump himself or fall and we are monitoring things like gum and nose bleeds. Prof has decided that he is giving the Cortisone another 2 weeks to see if it will make a difference. Jimmy is on 12 tablets a day and Prof wants him to go in to have full bloods done on Monday (1 week) to see if there is any improvement and then again the following Monday prior to our next appointment (2 weeks).