Thursday, 3rd December

A special day for a blog update....

Jimmy, as we celebrate our 10th Anniversary I look back on an amazing 12 years together.  We have travelled many awesome roads, the last two having been a detour that we never chose but I thank you from the bottom of my heart for never giving up.  I love you more than words could say.

Jimmy had been booked off till the 6th but our wonderful news is that he went back to work yesterday.  I expected him to be absolutely bushed but he was fine and didn't even fall asleep in front of the television last night.  It's been full steam ahead here as Jimmy has been working from home and increasing his laps in the driveway twice a day from 12 to 20, which has really helped to build his strength up.

Jimmy popped into the chemo clinic on his way home yesterday to have his bloods done and these are holding out nicely.  His white blood cell count is up to 6.2 (normal 4-10), haemoglobin and red blood cell counts still a little low at 11.7 (normal 13-18) and 3.60 (normal 4.5-6.5) respectively and his platelets have dropped slightly to 49 (normal 150 to 400) but still a way off the dangerous 30.  He needs to go in for the day next Wednesday to have another Polygam infusion, double the dose this time, which will take about 7 to 8 hours to run through and will then receive this on a monthly basis.  Prof and the medical aid are still busy with the motivation for Nplate so he will continue on the cortisone dose of 7 tablets a day to try and maintain his platelet count.  We pray this doesn't affect his immune system in the meantime and continue to take his temperature twice a day to prevent any surprise infections.  Jimmy passed Prof Wilcox, the pulmonary specialist who attended to Jimmy in ICU, in the passage yesterday.  Prof stopped him to congratulate him on how well he is looking and added "our haematology patients who come in with pneumonia and septicaemia usually die".  Quite blunt but it brings home the truth of how blessed we are once again.

And so life goes on.  We have had to do a bit of reshuffling with regards to holiday plans as we had booked to take the caravan up to the Kruger National Park and spend some time travelling up through the park and then 3 nights in the Limpopo National park as we worked our way over to Mozambique for a 7 night stay at Cumbini.    Unfortunately due to the Malaria risk and Jimmy not being able to take prophylactics we have put this all on hold now until 2018.  We have decided to go up the Garden Route and camp at Keurbooms and George.  We'll leave our caravan up there and bring the kids back on the 23rd and then we'll go back up and camp in  Tsitsikamma where we will hook up with Stan and Michelle till just after New Years.  We have also made arrangements for Jimmy to have his bloods done once a week while we are away.  I'm looking forward to some relaxed family time with the kids as I think this will also be the last December camping holiday that we all spend together barring Megan.  With only Emma left in school the older ones are spreading their wings and making their own plans arrangements these days. 

I had a lovely chat with Megan yesterday and caught up on all her news.  Her and Cosmin are very tired and feeling the stress of a 74 hour week at the moment.  The only day they get to go ashore is on a Monday when they are in Cozumel, Mexico as the other 2 ports are charter ports and they have work.  But they have found a lovely resort which they visit each week and spend some special time together away from the hustle and bustle of ship life.

I have one more week of work left so I've been very busy with the books, getting ready for my staff's year end bonuses, doing the VAT return ahead of time which is due at the end of the month etc.  I have also spent 6 hours this week working through medical aid claims that have been rejected due to a hundred reasons, like incorrect ICD 10 codes, and all beyond my control.

I'm not sure if I'll update again before Christmas as we go on holiday next Friday but in case I don't.....

Thank you to each and everyone of you for all your support, encouragement, prayers and help during what has been another difficult year.  From my side this is what has gotten me through some very dark days and made me stronger so that I could be there for Jimmy.  I have truly counted my blessings this year. We are both feeling very positive about next year and it's nice to know that we not starting the year off with a daunting stem cell transplant as was the case this year. 

Jimmy and I would like to wish you a Merry Christmas, happy holidays and safe travels if you are going away.

 

Wednesday, 25th November

It's a week since Jimmy was discharged from hospital and as he gets stronger everyday I realise just how much he has been through in the last month.

Since Sunday he has not been breathless anymore when he talks.  Up until 2 days ago he was even too weak to open a juice bottle.  He has been very good about going for a walk each day.  We have far too many steep hills in our neighbourhood so he has been doing 10 laps of the driveway twice a day and since yesterday he upped this to 12.  He has also been working from home this week.

We had our follow up appointment with Prof Novitzky this evening and he is extremely happy with Jimmy's progress.  He was originally booked off until the 5th of December but Prof has said if he feels up to it he can go back to work during next week with instructions to listen to his body.  We now, as a matter of routine, take Jimmy's temperature morning and evenings so that nothing like this can spring on us again.  Jimmy had the second half of his Polygam infusion today which took 4 hours.  He will continue to have this on a monthly basis but at double the dose so we looking at about 7 hours a time and he can't drive afterwards so I guess I'll be getting quite far with my new crochet blanket I am making.

Prof has decreased Jimmy's cortisone dose down to 7 a day and stressed again that Jimmy needs to get off cortisone as soon as possible.  His platelet count is 60 at the moment.  Prof says he is not too concerned about the numbers at this stage as this is common with Thrombocytopenia (low platelet count).  His big concern is that Jimmy doesn't get any of the side effects of Thrombocytepenia which is bleeding etc.  He will have to continue to have his bloods done once a week so he can keep an eye on this as Jimmy's platelet count cannot go lower than 30.  We spoke again about the Splenectomy and although Prof says we are assured a 85 to 95 % success rate of an increased platelet count, it worries him that Jimmy will not have a spleen when he comes out of remission.

So today we discussed a medicine called Nplate.   Nplate injections are used on a monthly basis to treat Thrombocytopenia and help prevent bleeding in patients with a blood disorder called chronic immune thrombocytopenia (ITP). This medicine is used when other medicines, such as steroids or immunoglobulins, have not worked well enough. (The Polygam that Jimmy is having monthly is an immunoglobulin).  Nplate works by stimulating the bone marrow to produce more platelets.  Prof is going to do a motivation for the medical aid and try get them to authorise it although he said we shouldn't get too excited as these injections are R60 000.00 a shot. Authorisation takes between 5 and 6 weeks. And speaking of dollars, we got Jimmy's ICU account today...R270 000.00.

There is much excitement at home this evening as Loren wrote her last matric exam today.  Another chapter of my life finished....I can't believe I have another baby spreading her wings.  We have been very busy with applications, references, medical tests etc as Loren is going to take a gap year and go and au pair in the states next year.  Emma writes her last exam tomorrow and then it's count down to the end of the school year.

My other news is that with all this stuff going on Megan finished her 16 day cross over from Europe to the USA and arrived safely in Houston on the 14th.  She does a 7 day cruise every 7 days leaving Houston on a Saturday afternoon and stopping at Cozumel Mexico, Belize City and Roatan and then back to Houston.  It's a bit more difficult to talk to her now as she is always 7 or 8 hours behind us.  I had a lovely telephone call with her a few days ago at 1am and it was good to hear from her and she isn't sounding as tired as she was when we saw her in Europe. Of course Megan is very happy to hear that Jimmy is so much better....it has been really tough on her not being here and worrying about him.  Thank goodness for technology with Skype and Face Time where we can see each other.

Wednesday, 18th November

 

 

 

 

The fantastic news is Jimmy was discharged this morning.

 

He is still very weak and was exhausted after the trip home but looking comfortable in his lazyboy catching up on all the protest action at universities and the terrorist attacks in Paris.  It's hard to believe everything that has happened in what tomorrow would have been 3 weeks that he spent in hospital with six days, where he was in a medically induced coma and on a ventilator, which will be lost to him forever.

 

Jimmy will see Prof on Wednesday for a follow up appointment, have bloods taken to check all his counts as well as a Polygam infusion which will take about 3 hours to run in. Polygam S/D intravenous is a sterilized solution made from human plasma. It contains the antibodies to help your body protect itself against infection.  He is also back on 9 Cortisone tablets a day as well as some other new meds.

 

We have also been given strict instructions that he cannot go to the mall etc. or be in contact with anyone who has a cold, tummy bug, sore throat etc, or anyone who has been around anyone that is sick.

 

We are both very happy that he is home and look forward to a good recovery now.



Monday, 16th November

Apologies for the lack up blog updates since last Thursday but I haven't had much to report on.  I'm sure you all gathered that Jimmy did not come home on Saturday morning as we were hoping.  He continues to improve and is looking much better.  He is getting out of bed to shower now and physio also have him up twice a day walking the length of high care after which he is quite exhausted.

I was relieved to hear from Dr Du Toit that the raspy throat he developed on Friday afternoon is as a result of the ventilator tube and not another infection.  His blood pressure dropped a bit on Friday evening so he is on a drip to increase his fluid intake and it has already come up a little again.  Hopefully by the time I see him today it will be near to where it was at the end of last week.  He has also been put back on oxygen, not permanently but rather a couple of times a day.

He had chest x-rays done on Friday which were not as good as we were expecting and this is the reason he wasn't discharged.  They took some more at 6am this morning and Prof Novitzky saw Jimmy just after 7am and said that Jimmy will be in hospital for a few more days.

On a sad note Ewen leaves today to go back home to the UK....  the past 10 days went so quickly.  But as he says he arrived to a Jimmy that was better than he thought he would be thanks to a good turn the evening before and he leaves knowing Jimmy is so much stronger, out of danger and positively heading towards a full recover.

Thanks for all your love and support Ewen and the hours you spent keeping Jimmy company.  Safe travels today xx

Thursday, 12th November

One more step closer to recovery.....Jimmy was taken off oxygen today and we hoping that yesterday's blood transfusion is also the last.  Perhaps tomorrow he will be strong enough to get up and have a shower as I am sure he would welcome this instead of the bed baths.

I can't believe today is 2 weeks that he has been in hospital already.  Funny how it feels like he has been away a few days on a business trip when I think of his absence at home but it feels like I have been travelling to and from the hospital for 3 months already.

Tuesday, 10 November

Jimmy is coming on in leaps and bounds.  Mentally he is much more positive and although he keeps asking everyone when he can come home he understands that this will happen when he is medically fit. 

His various numbers are all coming up nicely and he is still having physio twice a day.  He had a blood transfusion today and they have also removed his catheter.  He is still a bit breathless when he talks so they have him on oxygen but this is also getting better.  Before the level would be around 95 on oxygen and now it's about 96 off oxygen and staying around 108 whilst on oxygen.

If all goes to plan he will more than likely be discharged on Monday.

Jimmy and his favourite visitor Ewen
 

Sunday, 8th November

It's lovely to see Jimmy improving more with each day.  He was much more talkative this afternoon and evening and has started his home coming planning...he recons he doesn't need to go to high care and is going to discuss this with Prof Novitzky tomorrow morning and nothing I could say about waiting until he is well enough to come home so there are no relapses would help.  Eish!! I'm just glad I can trust Prof.

He had a temperature spike this morning at 6am but this came down again and then stayed down for the remainder of the day.  His platelets have dropped a little further so he had a platelet transfusion this evening and what a palava as he has no veins left.  Prof Wilcox arrived for his check-up and offered to put the line in and the only place he could do it was in Jimmy's ankle.  He mentioned that he is going to discuss with Prof Novitzky that he thinks Jimmy should have a port put in and there was a lot of mumbling and grumbling coming from Jimmy about this.  Once the platelet transfusion was done they used the same line for a bag of potassium which burned Jimmy like hell.  So they stopped it and put up a bottle of Perfalgan and waited for this to run through.  It was nice and quick acting and he was more comfortable within 5 minutes and then he went back to getting the potassium.  He will also be on Neupogen injections for a few days now to boost his white blood cell count.

I had a lovely breakfast this morning with Ewen and the folks and then got stuck in around the house seeing to all the things that have not been done during the last 10 days.  I'm not sure if I actually slept well in between all the stupid nightmares or whether my body is finally adapting to the stress levels and hospital visits but I felt much better today and feel like I can definitely face the week head on.

We are now half way through matric finals with three weeks to go and  Emma starts her final exams on Tuesday so wishing her all the best. Go girls!!

Saturday, 7th November

Jimmy is going from strength to strength.

Prof Novitzky came to see him this morning and said he still has some inflammation in both his lungs.  His white blood cell count has dropped down again to 2.4 but he says these fluctuation are to be expected.  The pneumonia actually started in one lung and then to the other.  He says that this is probably as a result of the side effects that taking high doses of cortisone long term have on the body.  He feels that we have unsuccessfully tried what we can in the form of medication to get Jimmy's platelets up and he thinks the next step is for Jimmy to have his spleen removed.  So the goal for now is for Jimmy to recover and get strong in preparation for the Splenectomy.

Prof Wilcox also saw Jimmy today and he is happy with his breathing and oxygen levels.  Physio managed to get him out of bed and do 50 on-the-spot steps which he was also impressed about.  He said that Jimmy can be moved to high care on Monday.

And then our exciting, top secret news is that young Ewen arrived from the UK today.  Ewen and Isabel collected him from the airport at 4:30pm and brought him straight to the hospital.  It was so special to see the two of them together.  It has been very hard on Ewen over the last 18 months, while Jimmy has been going through all this hell, living so far away and I believe it will do them both the world of good spending some time together.  I'm just so glad that Jimmy was out of sedation by the time Ewen arrived.

Jimmy had his first proper meal today and watched quite a bit of the cricket.  You know what I always say......he is feeling better if the sports channel is on.



Friday, 6th November

After being so disappointed last night that they had to sedate Jimmy again I was expecting another day like yesterday, today.

I phoned ICU to check up on him before I went through this morning and they told me that they had turned off the sedation in the early hours of this morning.  Once he was out of sedation they tested his breathing which was fine and he had been extubated.  I couldn't get done quick enough and the drive through took forever to say the least.

When I walked in I stopped and smiled at him but he couldn't really make out who it was.  Physio were busy with him so I just stepped a bit closer and then he waved at me.  Oh my word...what a huge relief to have him awake.

He was still very groggy but this got better as the day went by.  At first he complained that it was hard to breath but this improved.  He is also extremely weak and very emotional.  I talked to him on and off during the day to tell him what he had been through.  He doesn't remember at all being transferred from high care to ICU or being told that they were going to sedate him and intubate him.  As the day went on he started asking me questions like how long had he been there and when I told him that today was his 9th day and that he had been in a medically induced coma and on a ventilator because he couldn't breath by himself for 6 days he started crying.  Later he asked me if I had been coming to see him and I explained that I had been with him each day, as had his folks and the kids had also been to see him he got upset again.

Physio came to see him again later in the afternoon.  His Hickman line has been removed and because his left hand was so swollen they also removed that line today; this one was for taking bloods.  Already a lot of the swelling in his fingers, face and neck has come down.  Jimmy still has an oxygen mask he has to wear as this has to stay above 95.  He is coughing quite a bit and takes the mask off when he does and the oxygen levels drop quite quickly.  I'm hoping that they will change the mask for one of those prong type thingies that go up each nostril as this will be much more comfortable for him.

I had to laugh this afternoon.  He definitely has a phobia about sleeping in hospital!  He started moaning at the sister, telling her that he can't sleep and he hasn't slept for days.  She told him that he has been dozing on and off all day and that he will have a good night's sleep tonight but if he can't sleep they will give him a sleeping tablet.  And with that he went back to sleep again.

Jimmy on Thursday morning still on the ventilator.

Jimmy today while he couldn't sleep hehe

Thursday, 5th November

Jimmy was sedated again yesterday evening after I left as he keeps fighting those restraints although this is a lighter sedation.  This morning at 7am they turned the adrenaline down from 1 to 0.5 and his blood pressure is a wonderful 119/79.  Then at 10am they stopped sedating him again and turned the adrenaline off completely.

He has spent the whole day coming out of sedation and doing everything he can to try and pull the pipes out his mouth.  He struggles for about 10 minutes and then gets so tired that he falls asleep but doesn't sleep for very long before he is at it again.  By 5pm this evening he was opening his eyes very briefly and turning his head towards me when I spoke to him.  I tried to distract him from fighting too and would tell him to just hold my hand.  I would then take his hand and he would squeeze mine. The more he was coming to, the more frustrated he was becoming and at times a tear would roll down the side of his face.  They had to keep suctioning fluid/mucous from him and also used another suction to remove mucous/saliva from his mouth and at times he even bit the pipe so the sister couldn't move it around.  I noticed he has some horrible sores in his mouth again so they have ordered some meds for this. Jimmy had physio today again which exhausted him.  He slept for about an hour afterwards. 

His white blood cell counts have come up to 4.2, haemoglobin is 8.2, his platelets are 42 and his temperature is 36.5.  He did not have any transfusions today nor a Neupogen injection and Dr Du Toit (haematologist) is over the moon with Jimmy's improvement since yesterday.

Prof Wilcox (pulmonary) said that he is very happy with Jimmy's progress and that if they do not have to sedate him tonight they will turn the ventilator onto oxygen only at 10am tomorrow morning to test his breathing on his own.  He is expecting it to be fine in which case they will extubate (remove the ventilator).

Today was very exhausting as I spent the whole day trying to calm him down an re-assure him.  Jimmy is also exhausted from all the fighting and this makes him cough too, which he can't do with the pipes in his mouth but his body still makes the motion of coughing.

Let's hope that he comes further out of sedation in the next while so that he can understand that his arms are tied down and he has a pipes down his throat and hopefully he will be more relaxed.

PS.  8:46pm - I just phoned to check up on him and they have had to sedate him again as he is just getting too tired.  So......round 2 tomorrow.  The sister says he should come out of sedation at about 5pm tomorrow evening and then they will have to see how it goes overnight again before they can consider doing the breathing test on Saturday morning.

Wednesday, 4th November

MY HEART IS OVERFLOWING WITH HAPPINESS....

The first lot of good news was this morning when the sister told me that Jimmy's temperature had dropped overnight to 36,5.  And there I was praying that he had turned the corner.

And turn the corner he has!  They turned off his sedation this morning at 10am.  Because he has been so heavily sedated since Sunday they expected him to come out of sedation late tonight or early tomorrow morning.  They also turned the adrenaline down from 3 to 1 and his blood pressure is holding.  Not perfect yet but acceptable for his condition which is wonderful news.

Just before 5pm I went and stood next to him and held his hand and told him I was there and that I love him so much and he has to be strong and then he moved and tried to open his eyes.  He lifted his other arm out from under the sheet and let go of my hand and tried to straight away pull his pipes out.  The machines around him all started beeping and I nearly had a hard attack but I couldn't stop smiling.  The sister told me to hold down his arms.  She said he isn't completely out of sedation yet but he is reacting to my voice and can feel that there is something down his throat.  Jimmy started to cough but he can't cough with the pipe down his throat so they had to suction everything out his mouth that was coming up with the pressure of his body trying to cough.  Sister Thandi asked me not to talk so that she could try and relax him.  She asked me to go call another sister and then they explained that they would need to tie him down in order to stop him pulling out the pipes.  I didn't want to see him tied down and struggling so I told her I would leave and see her in the morning. As I walked out I could hear her telling him "You like to fight me Mr Smith...you need to relax....and in the morning your wife will be back.  Your family love you."

So....at the moment we are still not out of the woods but I am just so relieved that he has come out of sedation.  They will sedate him again now but it will not be as heavily as before.  Each morning at 6am they will stop the sedation for an hour and then the ventilator will be changed from breathing for him to just oxygen and they will ascertain whether or not he can breath properly on his own.  If he can't then they will sedate him again and carry on trying each morning until he can breath on his own.

He is also not over the pneumonia yet nor the septicaemia but a good sign is that his blood pressure and temperature are coming back to normal.  His white blood cell count, haemoglobin and platelets have also starting coming up now, I will have to confirm these numbers in tomorrow's update.

Even if he needs to be sedated for another day or two we know now his body is getting stronger and as this happens he will improve everyday.

As I sit here and type I feel myself going from total euphoria to getting very emotional about this all but I must say it does feel better to be crying from happiness rather than shear desperation.

As you all know we lost a dear friend to this exact same diagnoses in ICU earlier this year.  I have forced myself to be strong again but it has been hell inside my heart.  I was terrified that Jimmy wouldn't wake up.  I love this man so much and he must know that he can never give up on me.

Wednesday, 4th November

I thought that Jimmy somehow looked different yesterday, more at peace as his face seemed to be more relaxed.  And then I doubt myself and think maybe it's because I am getting used to seeing him they way he is.

There were still no further changes yesterday and his temperature stayed up during the day.  My thoughts were that maybe we need to see the positive in this, in that it was day 6 and Jimmy had not got any worse......he is doing a sterling job of hanging in there.

The haematologist discussed possibly changing or adding another antibiotic today and was going to chat this through with Prof Novitzky so I will hear today what was decided.

The good news this morning is that over night his temperature came down to 36,5.  A true glimmer of hope and let's pray that from here it is only forward.

Thank you again for all your messages.  Apologies that I have not replied to them all but the support means so much and so does all your love and care.

Tuesday, 3rd November

Jimmy is still on the ventilator and in a medically induced coma. Yesterday and 3pm his temperature spiked again and this morning there is no further change.  His temperature is also still up.  The biggest hurdle we face at the moment is that his body needs to fight the pneumonia and septicemia but his white bloods, haemoglobin and platelets are so low they can't.

Jimmy has a whole team of people seeing to him.  Prof Novitzky is treating him on the Myeloma side of things and he has a doctor who is seeing to Jimmy.  Prof Wilcox who is a pulmonary specialist is also part of the team and he also has a doctor looking after Jimmy as well as the ICU doctor.  They have conveyed to me that Jimmy's condition is very serious.

It was wonderful to see the staff from the chemo clinic as well as F4 pop in yesterday to come and see him.  That's Jimmy....wherever he goes he makes friends.

I spent the day with him yesterday holding his hand and talking to him and telling him about all your messages and that he needs to be strong because we are all praying for him.  I don't know if he can hear me and I keep wishing that he will squeeze me hand or his eyelids will flicker but I know that he has to be resting like this to get better.

Thanks so much for all your support
xx

Sunday, 1st November

Jimmy had a better day on Saturday.  His temperature remained constant around 36,2 and 36,5.  There was a slight improvement in his white blood cell count and Prof said that he was looking better.  He was prescribed some Neupogen injections which is what was used to boost his white blood cell production when he was in F4 for his stem cell transplant.  Prof also said he would have a platelet transfusion on Sunday.

As he couldn't sleep the doctor said he would tell the sister to give him a sleeping tablet and Jimmy was looking forward to a good nights sleep.  He has been nil per mouth since he was admitted on    Thursday and extremely thirsty so Prof agreed to him having fluids but still no food.  Jimmy's breathing was very shallow and he was quite breathless too, finding it difficult to string a sentence together.

During the night he took another turn and could not breath properly on his own so they had to intubate him. 

As I stood beside his bed today holding his hand and wishing and hoping that he knew I was there I couldn't help thinking that the one thing he has moaned about since he was admitted is that he is so extremely tired but he can't sleep and now he is in a medically induced coma and the ventilator is doing his breathing for him and at last he can sleep.

I hope his body uses the time to rest and get strong...

Friday, 30th October

And just like that there was a turn for the worst....

So much for Jimmy feeling so much better on Wednesday.  On Thursday morning he woke up saying he was feeling even worse.  I took his temperature and it was 38.  Prior to remission he had to be taken straight to high care if his temperature reached 37 so I wasn't too sure of what to do.  I phoned Sister Olivia at the chemo clinic to ask for her advice and she said she would speak to his Dr (at UCTPAH) and Prof Novitzky and come back to me.

We had to go through to the chemo clinic for a 2:30pm appointment so he could be assessed and advised what to do.  By the time we got to the car park Jimmy was too weak to walk so he went in, in a wheelchair.  His temperature was just under 40 degrees and his blood pressure was 87/50.  They admitted him straight into high care and did chest x-rays and took some bloods.  Prof was going to see him later and his diagnoses was a suspected pneumonia.

By 8:30pm we still didn't have x-ray results back or the blood results but Prof had been to see him.  He was put on a drip as well as antibiotics to bring his temp down which was still high and put on adrenaline to try and bring his blood pressure up which was dangerously low.

This morning at 3am the sister from high care phoned to tell me that they had moved Jimmy to ICU because his temp had gone up further, blood pressure was still dropping and he was having difficulty breathing.  Prof was with him and he saw Jimmy again before 8am this morning and later in the morning again.

I was shocked to see what Jimmy looked like when I got to ICU.  He was not in a good space.  His platelets were 16, white blood cell count was 0,24 and his haemoglobin was 6,5. His temperature was 40 and blood pressure still low.  They ordered two blood transfusions for him and when I left the first bag was going in.  They were still keeping him nil per mouth as he was having difficulty breathing and were standing by to intubate him (put a pipe down his throat to help him breath).  There was a sister assigned to sit next to him all the time to monitor his vitals on the screen and take his temperature every 15 minutes.  They had already put a Hickman line in his neck as his veins are stuffed from all the needles he has had over the last 18months and they had automatic blow up cuffs on his legs for circulation because his blood pressure is so low.  He was absolutely exhausted but could not sleep and talking a lot and asking a lot of questions but not really making sense and mumbling to himself all the time.

At 13:30pm the doctor in charge of ICU came to see me.  He explained that the x-rays had shown up a small dark patch on Jimmy's lung/s and although there was still no actual diagnoses, as they were waiting for blood cultures, they suspect that his bronchitis infection got into his blood and caused Septicemia.  He also said "that there are a couple of things going on here" but I haven't seen Prof myself yet to get a clearer picture.  By this time Jimmy's temperature had come down to 37,2 and at long last he had fallen asleep.  The doctor said that Jimmy is a very sick man and we were by no means out of the woods yet but he was a lot better than he had been at 3am this morning.  His breathing was also holding up on his own but they are still keeping him nil per mouth until they know for 100% he won't need to be intubated.

Seeing him this morning brought back all the horrible memories of when he was fighting for his life in F4 and I have to say walking down the hospital passage and smelling the hospital food being prepared made my stomach turn.  Although not a nice place for me anymore (and I am sure Jimmy too) I do know it's the best place for Jimmy to be and as always he is in very good hands.  The staff at UCTPAH always go beyond the call of duty.

I phoned ICU just after 6pm to see how Jimmy is and his temperature has come down to 36,2. 

A big thank you to you all for all your positive messages and prayers, its amazing how quickly the news spread.  This is just another dirt road trip on our journey and we will overcome this one too.

Wednesday, 28th October

Just a quick update as I have had a few calls from concerned colleagues...

Jimmy has had a chesty cough on and off for the last month and on Monday he went to the doctor.  He has bronchitis and also had chest x-rays done on Tuesday but these are clear so no pneumonia.

He is feeling a little better today after being man down since Sunday evening with no energy and should be back at work tomorrow.  It is good to know that his body is strong enough to fight the onset on pneumonia.

Saturday 24th October

Amazing how this blog was such a part of my daily life for a long while and now I find myself having to re-read the last blog to get the mind ticking. 

So....it's been a month since I last updated.  Jimmy and I went to see Prof Novitzky on the 5th of October for his follow up appointment where we were also getting the results of his latest bone marrow biopsy.  I cannot tell you how nervous I was about these results and of course they were due 2 days before my Mom and I left for Europe.  But the news was good.  Jimmy's cancer burden is still somewhere under 5% which is classed as remission.  Prof was also able to confirm again that Jimmy's body is definitely still producing platelets which was also very good to hear.  We discussed at length the removal of Jimmy's spleen too.  We have decided to sit this procedure out as long as possible until all avenues have been exhausted.  Prof explained that there is 95% success rate when having a Splenectomy.  The spleen is our largest auto-immune organ in our body and once it is removed the bone marrow automatically produces more platelets to make up for the fact that there is no spleen.  Not having a spleen is alright for you and me, it is quite common to have it removed after a eg a motor vehicle accident and the person can live a normal life.  But Prof is concerned that we will have problems when Jimmy comes out of remission without a spleen.  He will be very susceptible to infection and will have to have various vaccines on a yearly basis to help prevent contracting contagious illnesses etc.  So our next step in the process has been to drop the cortisone level further to 6 tablets a day and Jimmy is now also taking Azamun 3 times a day.  Jimmy has his bloods done every 2 weeks to monitor any changes in his platelets and Prof will increase/decrease the various meds accordingly.

Jimmy had his bloods taken on Friday and after 2 weeks of the reduced cortisone and the addition of Azamun his platelets have dropped further.  As we have not heard from Prof with regard to any changes in medication, I am presuming he will discuss this at our next monthly appointment which I think is at the end of this month.  Jimmy's white blood cell count has also dropped slightly and now sitting on the minimum of the normal range.

This is a very long, frustrating road and most of the time the process trial and error and we just have to be patient.  Prof also changed his mind about Jimmy being allowed to travel to Japan on business but we have to keep counting our blessings....Jimmy is well and still in remission.

Matric prelims and dance as well as school holidays have come and gone.  Loren starts writing her final matric examinations on Monday.  Matric dance day was very special and Loren looked so beautiful.... I am such a proud Mom!

Just like a princess

The most dashing young men

And off they go

Dylan and Loren....special friends

Something else that has come and gone far too quickly was our trip to Europe.  My Mom and I left on Wednesday the 7th and spent our first two nights in Venice.  There are no just words to explain the beauty of Venice.  We travelled by Allilaguna (the water taxi) from the mestre (main land) to Venice which was the most beautiful trip right up the Grande Canal...what an introduction to Venice. We stayed near Piazze De San Marco.  We then spend 7 nights on the Norwegian Jade with Megan.  It was fantastic to spend time with her and see where she works and meet your bosses and colleagues and her boyfriend Cosmin.  We visited Dubrovnik - Croatia, Athens - Greece, Kusadasi - Turkey and Split - Croatia.  We visited the Acropolis in Athens and Ephesus in Turkey...I must have taken over a thousand photos.  Once back in Venice we spent another 2 days in the Cannaregio district.

Piazze De San Marco

Our hotel above the shops

Stunning buildings along the Grande Canal



View of Dubrovnik from the top of the cable way

Cosmin and Megan walking through the old town of Dubrovnik

The Norwegian Jade in port at Dubrovnik

The Acropolis in Athens

In the port at Kusadasi, Turkey

Ephesis in Turkey

Shopping and lunch at the markets in Turkey

A market in an old church in Split, Croatia

Murano Island, Venice which we visited and saw how they make glass jewellery

Dinner in the Cannaregio district of Venice

Beautiful Venice

Tuesday, 22nd September

The latest update with Jimmy....

His platelets have continued to drop.  Every now and then they come up a little but Prof Novitzky is looking at the trend and the trend tells him they are dropping.  This is in spite of the fact that he hasn't reduced the Cortisone dose any further.  So today Jimmy had another bone marrow biopsy as Prof wants to rule out that nothing else is causing the low platelets.

We get these results on the 5th of October when we have an appointment to see Prof to discuss the way forward.  Prof again today mentioned removing Jimmy's Spleen as he believes it's the Spleen which is gobbling up the platelets but a final decision will be made on the 5th.  He wants to get Jimmy off Cortisone now as it has been a long time and there are some dreadful side effects of long time use, apart from Jimmy feeling so uncomfortable with the bloating/puffiness in his face.  He says it feels like when you've been to the dentist.  When Jimmy walked into the Chemo clinic today they all said 'we can see you still on Cortisone' as his face is really puffy now.

The Jimmy you all know kicked right into action and the first thing he wanted to know is how long he will be off work.  Prof explained that it will be done with keyhole surgery, Jimmy will be in hospital for 2 days and back at work 4 days later.  To which there was a big sigh of relief.  But as I say, final decisions will be made on the 5th.

We spent a fabulous weekend up in Lutzville on the West Coast for the Komatsu Golf Day.  Jimmy thoroughly enjoyed seeing everyone again and us ladies worked very hard at the watering hole ;)

Some of the Komatsu banners on display

Prize giving

Loren and Shannon have finished writing matric prelims and finals start on the 26th of October.  Emma does her last 3rd term exam tomorrow and in just over a week the schools break up for holidays.  There is great excitement and planning going on for the Matric Dance which is on the 3rd of October.  I'm sure I'll have some beautiful photos to brag with next time I blog.

We're looking forward to a nice relaxing weekend camping in Kommetjie this weekend and the nice part is it's only 20 minutes down the road.  And an added bonus is we're getting a visit from our friends Wayne and Samantha from Kwazulu Natal.

Wednesday, 9th September

 

This very special lady came to visit me today and we were talking about the two of us bumping into her at Valyland. This photo of Sharon and Jimmy was taken that day in December 2014, just a few days before Jimmy's stem cells were harvested for his stem cell transplant.  And to think that we all thought he was looking so good. The second photo is of Jimmy and our ranger at Simbavati Lodge last week.  

 

Remembering and counting my blessings....

Sunday, 6th September

 

 

 

Sunday, 6th September

Well...almost a month since I last updated the blog. The nice thing is that it feels like much longer which means the days are busy.

No great shakes or much to update on Jimmy.  He is still on Cortisone but this has now been reduced over the last month.  Firstly from 12 to 10 a day and then 9 and on Friday when Jimmy had his bloods done the dosage was reduced to 8.  He is still having his bloods done once a week and everything is good except for his platelets which are still low.  I have stopped recording them now as they tend to go up and down all the time, Friday's count was 92 but he is still not displaying any symptoms of a low platelet count.  And the good news is that they have not dropped dramatically as a result of the Cortisone dosage being lowered.

I would say the only side effect that Jimmy is experiencing at the moment is bloating as a result of the Cortisone.  His face especially is very puffy and last night I noticed that the left hand side is more puffy than the right so I will give Olivia a call tomorrow just to check up that this isn't a concern.  Shame, Jimmy keeps saying that he needs to go on a diet but not much is going to help until he is completely weaned off the Cortisone.  I think he really misses his once or twice a week run of squash to keep his fitness levels up but unfortunately he will not be able to play again.  He is thoroughly enjoying playing golf again and plays most Saturdays now.

We are into September already and I can't believe how the year is flying. Loren and Shannon are busy writing mock matric and Emma starts exams next week and then it's school holidays again at the beginning of October.  We have had a glorious few days of weather with temperatures in the high 20's, it really has felt like Spring has sprung.  But as I type the wind has picked up, the temperature has dropped considerably and I can see the cold front coming in off the sea.  For the next few days anyway Winter is back and we're expecting quite a bit of rain.  I really can't wait for Summer to arrive.  A bit unfair that we were teased like this with warm sunny days and no wind.

You might remember that we had planned a trip up to Zimbabwe, Botswana and Chobe last year in October to celebrate Jimmy's 50th birthday, which was in September, but we had to cancel due to his illness.  We had to make use of the airline tickets we had originally booked by the end of September this year as they could not hold them out for us any longer without us losing the money so we decided to go up to the Kruger National Park for a week.  We left last Thursday and got back on Wednesday.  We spent 4 nights at Simbavati Lodge and 2 at Buhala Lodge.  What a treat...

We left a windy, cold 15 degree Cape Town to land at Kruger Mpumalanga Airport in a sweltering 32 degrees.  We had some amazing animal sightings on the game drives and enjoyed beautiful meals on the decks at both places.  Simbavati Lodge overlooks a watering hole in a very dry riverbed and Buhala Lodge is situated on the banks of the Crocodile River.  We are very fortunate to experience the most beautiful sunsets here in Noordhoek overlooking the beach but there is something about a bush sunset.  We were lucky enough to see Leopard 3 times as well as a pack of 16 Wild Dogs.  And a first for us was seeing Honey Badgers in the wild.  We came across a herd of about 400 Buffalo which was amazing to see.  At Simbavati we went on a morning and afternoon game drive each day and at Buhala we arranged a game drive with their ranger.  What a delight.  We were taken by a retired lady ranger called Pam and it was just us on the game vehicle.  She picked us up at 5:30 and we only got back 6 hours later having enjoyed a lovely bush breakfast too.  We also had an amazing ranger, Rex and a tracker called Daniel at Simbavati for the 4 days.  It always amazes me that it doesn't matter how many game drives you have been on or how many times you see a specific animal, you always learn something new from a ranger.

It's Jimmy's 51st birthday next week so I need to sort out a special present for him, not like me to leave things for the last minute!  I also need to collect my mom and my visas tomorrow.....just one month till we leave.  I have a long list from Megan of things she wants me to get and bring over for her.  Loren's matric dance dress is done so we also need to sort out all her accessories.  And next weekend we'll be going up to Lutzville for the Komatsu golf weekend which of course we missed last year so we are looking forward to see everyone again.

I started golf lessons myself 3 weeks ago which I am thoroughly enjoying (I know....but if you can't beat them join them!).  We have a lovely group of ladies and enjoy a good laugh.  I had attempted playing golf about 8 or 9 years ago but found that the girls were still too young and I didn't really have the time.  I can't wait to have a round of golf with Emma and I am very competitive so Jimmy had better watch out.  I was very spoilt last week as Jimmy came home with a new pair of golf shoes and a rescue for me.

I am going to pop a couple of our holiday photos here but will upload them all into the section down the right hand side of the home page called 'Getting away from it all'.

A BIG, BIG thank you to all our friends who put money together for Jimmy's 50th birthday present last year.  We were told to go away somewhere special and that is exactly what this holiday was.  It was a very special time away together and we made unforgettable memories.  We count our blessings each and everyday.



Breakfast on the deck overlooking the watering hole
and Simbavati Lodge



Buhala Lodge

 

 

 

Tuesday, 11th August

The days, weeks and months go by and we have definitely learnt the important step of taking everything in our stride and not getting too disappointed about low results or super excited when there is an improvement in results because just like the days that seem to flow into each other these results drift up and down and there is still no end in sight.  A process of elimination is probably the best way to describe Jimmy's treatment at the moment and I suspect it is going to be like this for some time forward.

We are now in our 8th week of Jimmy being on Cortisone,  taking 12 tablets a day, which is starting to show as he is quite bloated and puffy.  When last I blogged Jimmy's platelets had improved and come up to 121. Prof decided to do another two weeks on Cortisone at that time to see if there would be a further improvement and when Jimmy went for bloods on the 3rd August (last Monday) they had dropped to 113.  The clinic phoned to tell Jimmy that they wanted to do more bloods on Friday to see where his platelets are standing and they had come up very slightly again.  Unfortunately this was done after hours on Friday and I wasn't with Jimmy so we never got a printout and I can't remember what the count was.

Prof will have a look at these results today and then we wait for a decision as to whether he is going to ween Jimmy off the Cortisone over the next 6 weeks or continue taking them for now.  Now you understand what I mean....we are no further along in the treatment as compared with when I last blogged in July and also not any closer to starting the Thalidomide maintenance treatment.  Some very positive news is that Jimmy's white blood cell count is now up to 7.8 which is the highest it has been and sitting nicely in the normal position.  Red blood cell count is a little low and haemoglobin is also sitting in the normal parameters. 

It's actually quite hard to believe that Jimmy is battling with low platelets as he is doing so well and not showing any signs or symptoms of a low platelet count.  He is back to playing golf every Saturday and doing lots of travelling. Out of the last 9 weeks he has travelled during 7 of them. 

Last Sunday we drove up to my parents in Bredasdorp in separate cars, Jimmy visited for the day and then I stayed and spent a few days with them and came home on Wednesday.  It was a nice break to get away from home and the timing worked well too as Jimmy was away.  I thoroughly enjoyed spending some quality time with my Mom and Dad as a weekend is always too short to catch up and when they come to Cape Town they always have a million and one things to do.

I am very excited as my Mother and I will be going to Europe together on holiday in October.  We will spend a few days in Venice and then do a 7 days cruise on the Norwegian Jade which is the ship that Megan works on.  The ship ports at Dubrovnik and Split in Croatia, Piraeus in Greece and Kusadasi in Turkey with the cruise starting and finishing in Venice. Needless to say there is a lot of itinerary planning going on and we are already counting the days.  Who cares about whether supper is cooked when I can sit in front of the computer and dream about a gondola ride up the Grand Canal in Venice.......sigh...

Life as it is has come back to a relative normal.  I find that my days are busy again and I am not as pre-occupied with Cancer as I was in the past.  Make no bones about the fact that it never does actually go away and becomes a piece of your make up.  There is still the dreaded thought that something is not working because maybe the cancer is back or I find myself wondering how long remission will be.  But these are 'short' thoughts and it's good to be able to talk about the future again.  Whether it's this time next year or a camping trip when the weather starts to warm up.  It also took a huge adjustment on my part when Jimmy went back to work and when I think back now it must have been terrible for him.  All he wanted to do was climb back in the saddle and have normal days and here I was being selfish and feeling like I had no worth left.  But this too has passed, I'm not sure when but the realisation did hit me, more than likely when I realised that it is nearly 4 months that Jimmy has been back at work already.  When I think back over the last 16 months of our life it feels like an eternity and I still can't believe that is was so hard and we made it.

Make it we did....and I have so much to be thankful for.

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.