Sunday 13th March

I have been meaning to update the blog for a while now and now that I am I can't believe it's a month and a half since I last did.  By now, as I'm sure you are all aware, no news is good news.

The NPlate injections are going very well.  Jimmy is having them once a week on a Friday and has a full blood count done while he is there.  I don't know what the numbers are for this last Friday as Jimmy was away but the previous Friday's counts showed his platelets at 184 which was brilliant news.  They have with each passing week continued to climb and we are over the moon about this.  Normal range is 150 - 400 which means he is at long last in the normal range.  184 Is the highest they have been to date.  Jimmy also had his monthly appointment with Prof on the 2nd of March, the first one I did not go with him to.  I sent a list of questions which Jimmy was very good about working through.  Prof is happy with the results of the NPlate and has now officially started the motivation to the medical for Jimmy to start maintenance. 

On the 28th of March Loren left for the USA to start her year of Au pairing.  She flew to New York where they stayed in the res at St John's University for 4 nights doing various courses run by the Au Pair agency.  They finished this off with a tour of New York which she thoroughly enjoyed.  Her host mother, Danielle, has been absolutely amazing and gone out of her way to make Loren feel welcome and at home. When Loren arrived at St Johns there was a big hamper waiting for her on her bed full of lovely goodies which Danielle had purchased for her including a flask, a long sleeve T-shirt, a hoody and a carry bag.  As well as some vouchers for Starbucks coffee and she also paid the $50 for Loren's ticket to do the New York tour.  It snowed while she was in New York so we got lots of photos of Loren in the snow as well as a selfie with the Statue of Liberty in the background and Time Square etc.  On the Friday morning she travelled by bus from Oakdale to Stephens City, Virginia where she joined her host family.  I haven't had much contact with her since arriving apart from WhatsApp messages while she has settled in and started working but yesterday we had a 1 hour skype catch up.  It made me very happy to see that everything is going well and she loves the family that she is working for.  The twins that she looks after are 2 years old and really cute, she says they have warmed to her really quickly.  Loren went on to explain how much of her money she is going to send home to save and how much she is going to put aside to spend.  She has applied for her social security number and as soon as she received this she can get her USA driver's licence, a bank account and also join the local gym which she is looking forward to.  I almost feel like she has already grown up in the 2 weeks since she left.  I really miss her as she involved me a lot in her day to day life and when she wasn't here we spoke 2 or 3 times a day.  This has left a bit of an empty hole in my life but knowing she is happy makes me happy and it's not forever.

On the steps at St Johns University

Loren experiencing snow

In the meantime Megan has also arrived home for a 2 month vacation.  Loren and Megan were lucky enough to spend a week together here before Loren left so at least they got to see each other.  Megan is filling that hole that Loren has left to a certain degree at the moment but it is going to be terribly quiet once Megan leaves again.  Both Megan and Cosmin got positions back in CEI on the newest of the Norwegian Cruise Line ships, the Escape, for their next contract at the end of April so Megan is going over to Romania for 3 weeks to join Cosmin and meet his family and then she will be home for 10 days before she leaves for the new contract.

We enjoyed a family meal out on the day Megan arrived home....the only time

we will all be together for the next 2 years.

Megan and Loren.....sisters re-united

Megan and Emma....sisters re-united

We are all very proud of Emma who took part in her first Cape Town Cycle Tour last weekend.  After not being very well for 2 weeks and me worrying that Emma was going to do overdo things by taking part, Emma did very well to finish in 5 and half hours.

Emma stopping for a banana and some Energade where

we were waiting for her in Noordhoek.

I am proud to report that I have started running again.  I was running 5km a day when Jimmy was diagnosed in April 2014 and this all went by the wayside.  When I was eventually able to start again and really felt like it was something that I had to do for myself I felt too bad exercising while Jimmy was so weak, confined to home and couldn't partake in any of the sports he used to play.  It's hard to believe how unfit I have become in the 2 years of doing no exercise but I am now in my 3rd week of running 3 times a week and improving all the time.....and it feels really good.  The stiff muscles are also feeling better :)

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.