Tuesday, 26th January

We had our appointment with Prof yesterday evening for a check-up, to monitor side effects of the cortisone and also to discuss the Nplate injections which will start on Friday.  Jimmy's platelets continue to rise and fall so no change here.  Prof was very impressed that Jimmy is back playing golf again and said that he thinks Jimmy has better quality of life than he does.  Always a sense of humour :)

Nplate (Romiplostim) is an injection which he will receive once a week for life.  It is a man-made form of a protein that stimulates the bone barrow to increase the production of platelets (blood-clotting cells) in your body.  As mentioned before, Jimmy has developed Thrombocytopenia as a result of the stem cell transplant.  The immune system malfunctions and begins attacking platelets as if they were foreign substances.  Antibodies produced by your immune system attach themselves to the platelets, marking the platelets for destruction.  The spleen, which helps your body fight infection, recognises the antibodies and removes the platelets from your system.  The result of this case of mistaken identity is a lower number of circulating platelets than is normal.

Nplate is given after other medications like Cortisone have been tried without successful treatment symptoms and it will prevent Jimmy having any bleeding episodes which is caused by the lack of platelets in his blood.  Nplate unfortunately is not a cure for Thrombocytopenia and will not make his platelet counts normal.

Jimmy will continue to have blood tests done on a weekly basis to make sure this medication is helping his condition and not causing harmful effects.  As with most cancer treatments there is a host of dangerous side effects and the risks of taking the medicine must be weighed against the good it will do. There are also long term use effects on the bone marrow and then the fact that other drugs may interact with Nplate including prescription and over-the-counter medicines, vitamins and herbal products.

Once Jimmy starts the injections Prof is going to wean him off his cortisone.  For the first two weeks he will continue to take 7 a day which will then be reduced to 4 a day for 1 week and then 2 a day for 1 week.  We will then see Prof again, this will be in a months time, to discuss blood results etc.  And hopefully our next step will be to get Jimmy on maintenance to extend his remission for as long as possible.

Saturday was the one year anniversary of Jimmy's stem cell transplant.  Perfect timing was going to Billy's 60th birthday party so we had a little toast on the side to celebrate.  I will never forget how excited the doctors and nurses where, congratulating Jimmy and telling him that he can now celebrate 2 birthdays each year.

Jimmy receiving his stem cells one year ago

We are all very excited for Loren.  She has had a host family match and will be leaving for the USA near the end of February.  She joins a family with 2 year old twins in Stephens City, Virginia.  Megan arrives home around the 22nd of February for a holiday and I can't wait.  Very excited I find myself counting the days till her return and then can't help feeling a bit sad because it is getting closer to Loren leaving.  Bitter sweet to say the least but at least but I do look forward to having them together for 1 week.

 

Wednesday, 13th January 2016

Monday was my first day back at work for the new year.  And here I sit, as I have done a number of times since we got back from holiday on the 5th, trying to get my writing brain to kick in. The holiday certainly did us good.

The start of another year and I have to say this was met with many mixed emotions for me.  On the positive side I wanted to put 2015 behind me and start afresh with good, positive thoughts and embrace the new year and any of its challenges.  We are usually camping over new years and not very big on staying up to see the new year in.  We had planned to go to bed but ended up doing a late braai at the campsite, sitting around the fire and before we knew it there wasn't much time left till midnight so we stayed up.  Once I got into bed I felt a bit down and a tear or 2 spilled quietly down my cheek as I lay next to Jimmy wondering just what 2016 will have in store for us.  Will I continue to be strong enough to face the hardships that come with this terrible disease? Am I fooling myself into believing that this will be the year of good things as surely we have faced enough turmoil together?  Cancer, chemotherapy, bone marrow biopsies, waiting for results and the constant believing that this new treatment is going to do the trick are hard enough.  They take their toll but I think the biggest hurdle I have faced to date is Jimmy going into hospital with pneumonia and then into ICU and being ventilated.  It came out of nowhere and nearly took him.  I then wondered how I could be excited about celebrating the start of a new year when we are nearly 2 years down the line and isn't another year just bringing us closer to when he could come out of remission?  But as I lay there thinking I realised that is not a road I can go down. 

And so on this note I reflected on 2015.  In spite of the many hurdles we've had again with Jimmy's health, the positives still out weigh the bad big time.  21 Months since he was diagnosed and it certainly changes your perspective of life.  In so many ways this has been such a good thing.  As we have gone into 2016 we are thankful for life and we will continue to count our abundance of blessings.  From both of us....a heartfelt thank you to you for all your love and unfailing support.  Our wish for you is that 2016 will be everything you hope it to be.

On the medical side of things Jimmy is relaxed and rested and a number of friends have commented how well he is looking.  We had a full blood count done once a week while we were away just to keep a watchful eye on things and have come to the realisation that his platelets really just do their own thing.  We were super excited that after the 1st week they came up from 40 something to 50 something and in the subsequent 2 weeks right up to 70 something.  The next week they were back down to 50 something.  We got home last Tuesday and on Wednesday he went to UCTPAH to have his bloods done and they were back up in the 70 something.  There has been nothing that we can pinpoint as to how they have varied from week to week.  Jimmy even gave up drinking any alcohol, Becks non alcoholic beer is his new best friend, and this made no difference either.  Our fabulous news is that the authorisation has come through for the NPlate injections at R60 000.00 a pop so he should start with these in the next week or 2.  We not sure yet whether these will be administered weekly or monthly but will find out all the info at our next appointment with Prof.   Hopefully this will do the trick and increase his platelet count.  The next step would then be going onto maintenance therapy to keep the Multiple Myeloma counts from increasing, which he should have started in March last year already. 

We had a fabulous holiday over the festive season.  Our kids joined us for the first 12 days and we did so many fun family things together.  We enjoyed our evenings playing cards or just chatting around the camp fire.  We came home for 3 nights over Christmas to bring the kids home and spend Christmas with Jimmy's folks and then Stan and Michelle met up with us back in the Garden Route.  We spent 22 days in all camping at Keurbooms Lagoon , George and Nature's Valley.  From lovely walks along the beach, kayaking up the Storm's River mouth, Zip lining in Tsitsikamma, walking across the suspension bridge, a ferry boat trip up the Keurbooms River and watching Polo at Kurland to name a few.

Zip Lining at Tsitsikamma Adventure Falls

 

Camping at Keurbooms Lagoon

One of many swims down at Nature's Valley

Having a rest on the scenic walk to the suspension bridge

 

Kayaking up the gorge at Storm's River mouth

 

Camping at Tsitsikamma Sunrise near Nature's Valley

A visit to the Transport Museum in George

 

On the Ferry going up the Keurbooms River

 

A picnic on a little beach up the Keurbooms River


 

The suspension bridge at Storms River mouth

Lunch at Marilyn's 60's Diner at Storms River Village

Camping in George

Visiting the dairy farm

Watching POLO at Kurland

Mezze lunch at Bramon

Camping Jaffles with left overs

A scenic drive up the old Bloukrans Pass which is now closed

We eagerly awaited the 6th of January for Loren and Shannon's matric results and are super proud of them both for achieving a Bachelor's pass (university entrance pass).  Loren passed with an A and a B for 2 of her subjects.  Emma also had a good report and goes to Grade 11 today.  It's hard to believe she is now our last child attending school.  And then a big congratulations to Bradley who finished his first year and did so well.  We are very proud of you all.  Our other exciting news is that Loren has had a host family match and will be leaving on the 29th of February to go and Au Pair in Stephens City, West Virginia, USA for a year.

We missed our Megan more than normal over the Christmas period, her absence was very noticeable during our special family time together.  She is nearing the end of her contract now and will be home around the 22nd of February for a vacation before her and Cosmin return to Norwegian Cruise Line for another contract.

Megan and Cosmin on New Year's Eve on the Jade