Major Update

So it's been a fairly long time since I've updated this blog. The reason for that has been that John has been perfectly capable of disseminating the news to everyone himself, and therefore my services have not been needed. But now that he is back in Cape Town, I thought I'd update y'all....

Firstly, John and AJ were home for Christmas! John has been looking surprisingly good, under the circumstances. His friends (Chris, Ryan, Josh 'n Shan) have been visiting him virtually constantly. I sometimes wonder when he finds the time to sleep! He's been in good spirits. Christmas was nice, with the family gathered around a gold spray painted fake tree (don't ask). We have pictures somewhere, but I'm not sure where...

Then John had to go in for his next block of The Orange Bag Of Poison. It took a while to get authorisation from the medical aid, but it finally came through and he could have it. They did blood tests before, and it turned out that his WBC was in the region of 7. This was great news as normal is considered to be 7-11. Having the chemo was a bit of a change though, as he went to the Border Oncology Unit at St Dom's. He had it through a needle in his hand. He had it for three days. He had to chill at home to recover, which is not a difficult task considering he has Midgard and uncapped wireless....

AJ and John had to go back to Cape Town for more tests. We took them to the airport on Sunday, and they are flying back today. They're staying with the Bailey's. The news wasn't as good as we hoped. John started feeling very tired on Friday, and we had notched it up to nerves about the test results. But the doctors in Cape Town picked it up, and it turns out he has an infection, from an abscess(sp?) in his mouth. So AJ phoned Granny, who made a dentist appointment for John on Wednesday morning.

The blood counts were significantly lower. His WBC has dropped to 1.7... The doctor said this was expected though. Basically, when John has chemo his blood counts drop drastically, and then build up slowly. They then spike. I think they must have taken the 7 count as it was spiking... I think it was a bit of a shock, as John had been talking about how he had had leukemia, but was now over it. He's definitely still in the process of getting over it. It turns out that the process could be quite long... The doctor has tentatively said that he will be having chemo on and off for two years, which is quite a bit longer than expected.

John then went to have the bone marrow biopsy(sp?) done. They gave him the option of having it in the chest or spine, and he chose the chest. Apparently it's less uncomfortable. They gave him a local anaesthetic and put up a curtain so he couldn't see what was happening. When he got back to the Bailey's yesterday he crashed out on the bed. The doctors will phone in a week's time with the results of the bone marrow.

:))))))

I'm back!!!!!!!!!!!!! Ok, well it's only enough for a single post, but I guess it's better than nothing. So much has happened since my last post.....

Firstly, John finished the block of the Orange Bag Of Poison and it went much better than the previous time around.

Laura and her digsmates went to visit John. As far as I can tell, it was Lau, James, Mutsa and Minoshni. I apologise to those I misspelt. John didn't know that his digsmates were coming, so it was a big surprise and apparently he was really really happy to see them. They did it quite nicely, giving him time to sleep and recover from the chemo, but also being there and hanging out. They also helped AJ, and pretty much made supper and provided dessert for them all on the first day they were there. Lau stayed with AJ & J, while the others booked into Timour Hall, which is apparently quite huge. In between visiting John, they went to the V&A, a wine farm etc. They also took AJ shopping. And they took John for a long drive all the way to Camps Bay, and drove him around the UCT campus. It was the first time he's been out for a while, and hadn't seen anything of Cape Town, so he really enjoyed it. Lau stayed on, and I'm sure she's been a great addition...

Lynne from the library arrived on Sunday at around noon. AJ said it was so nice to be able to go out and chat with her and Janet Bailey :)

Then, the tests on Tuesday went well. They had been waiting for his WBC to drop, and it had, and nicely, not too low. It was around 3.7 :) They were a bit concerned about his liver function, but it should sort itself out by Monday. And the best news of all, he's going home! It's official! He's able to fly, so we went and booked tickets on SAA for all three of them. IIRC, they're landing in EL at about 6:30 on Monday :)))))) I was thinking it might be nice for everyone who wants to see them to meet them at the airport. The thing is, he's probably gonna be quite kished from the flying and the j-line removal op that morning, so being there to greet and then letting them go home and rest, unpack etc on their own might be the best way to do it. The family are planning on going in two cars. I'm pondering whether I can get helium balloons into the car with whichever family members I will be transporting....

One of John's other professors visited him yesterday afternoon. As always, visitors are great entertainment :) Yesterday evening the j-line came loose. Again. So they trotted off to the hospital (John made it all the way!) and got it fixed. The nurses gave AJ extra dressings for it, so if it happens again she can fix it herself. They've also had tons of medicine to get in preparation for going home :)

They're going to be here for quite a while. John's going to have a block of the Orange Bag Of Poison here, and then they'll go back to Cape Town to be there for the 30th of January. The doctors are going to do another lumbar puncture (test of the spinal fluid, they did one when he first arrived), and cytogenetics. From what I understand, the spinal fluid test is quite important, as it determines whether there are any Dread Disease cells lurking in the central nervous system or the brain. Apparently cytogenetics is harvesting healthy bone marrow, so it will be available if there is a relapse. But I'm not too sure if I have that right. Here's a link about genetics and the Dread Disease. I have no idea how long this will take at this stage, but I'm sure we'll find out. They're home for Xmas!!!!!!!!!!!!!! Yay!!!!!!!!!!!!!!!!!

Thursday's News

Yay! The taking of the Orange Bag Of Poison is over for now! Recovery is next on the list. They spoke to the doctor, and he said he was very happy with the counts. He said that they need to wait for the white blood cell count to drop, and then rise again next. John has to go in for a batch of tests again on Tuesday, and depending on the results will be able to come home probably at the end of the week! W00000000000T! I'm so happy! :))))) If the WBC hasn't done the necessary, they'll probably stay on for a week, but after that it will defininitely be home, in time for Christmas :))))

Lau is travelling down for the weekend (AFAIK, she might stay longer). My mom phoned Helen and Gary to check that they would be ok for transporting John & AJ, and they said that the timing actually works out well for them as they both finish work on Thursday next week, and will therefore be free to go and get 'em as soon as AJ calls :)

John will have to go back to Cape Town for a bone marrow test towards the end of January. This means that they'll have about a month in EL (I'm not telling Mariette this!). They'll have to go down to check if they have got the Dread Disease into remission. Then he'll have another block of the Orange Bag of Poison, down there. I'm actually quite glad about this. Although I'd love John to be in EL, the haematology dept at Constantiaberg Medi-Clinic is internationally renowned and St Dom's just can't compete. I'm so glad he'll be getting the best possible care. I think AJ is going to keep the flat on in the meantime, as we don't know the details of their being in Cape Town later. John may be an outpatient again, and we don't know for sure how long they'll be there. But it's good to know that they'll possibly be able to leave some of their stuff there (like all the cleaning things etc), and that they'll have a super-clean and quiet place to stay in while they're there.

Just a note on John being in EL.

We have to be smart about this. Although I'm sure everyone wants to see him, it would be better to have one or possibly two visitors at a time, rather than 10 or 15. AFAIK it's a bad idea to have smoke around him. And no-one who is sick should get anywhere near him! His immune system is lower than "normal" and won't be able to fight back as effectively as before.

The house has to be super-clean, and I know that Granny has been working her butt off to get it into shape. She's disinfected, washed, and scrubbed everything, and packed those things she couldn't clean into plastic boxes that can be cleaned easily. She's shampooed the carpets. No-one has forced her to do this - it's been a labour of love for her. Like everyone, she wants to help and there isn't a lot she can do. But she could get the place in order, and so she's ploughed her love into doing that. Hopefully AJ will get the maid to come more often to keep the house as spotless as possible. It's a big house, and with five people in it....

*sniff*

I've just realised that tomorrow is my last day at work. Which means that I shalt no longer have ein internet connection. Which means that I shalt no longer be able to blog :(((((

I'll have to come up with a cunning plan. Perhaps I should Build A Machine.... Perhaps Lau can take over the blogging while she's in Cape Town....

In the meantime, I'll cheer myself up by playing with FluoresStar, my Acara.

New Pics

My mom received a batch of new pics from AJ yesterday. She should be forwarding them on to Prof Wells soon, and they'll be up on 38/johenius (link is thataway <------- ) shortly.

Also, my brother is flying back from Cape Town to holiday in EL. He left making arrangements so late that he was unable to get a plane ticket to EL, but did get one for PE. So my mom and I will be going down to fetch him on Wednesday, and then on the way back we'll stop at the flat in Grahamstown and collect the last of John's things. Midgard will be ready and waiting when John gets back to EL :)))

Wednesday's News

So the third Orange Bag Of Poison was sent into the system yesterday. John walked both to and from the hospital! I think this is amazing. I'm so proud. They took it slowly and stopped for rests along the way, and he made it all the way home on his own steam :))) He was pretty tired after that (as can be expected!), and went to sleep when they got home. AJ woke him for lunch and supper. Another thing that has improved this time around is his eating - he's eating a lot more, and this I'm sure makes him feel better and gives him more energy :) The anti-nausea medication also seems to be working better - he's felt queasy but hasn't been getting sick :) So tomorrow's the last of this block, and then we're into recovery time. I'm not too sure when the next batch of tests will be, but it will probably be either tomorrow or on Monday.

His hair has kind of come out in clumps. So in some areas he's been bald, and in others he has still had his hair. But there has been some regrowth, and AJ says his new hair is black! So I guess he's looking all piratey and blackbearded :) Maybe I should send down an eyepatch for him..... LOL! Lau, John & I have been pirate fans ever since we started playing The Secret Of Monkey Island together a billion years ago. In fact, if you check out John's blog you'll notice that his second last entry was about International Talk Like A Pirate Day :)

Back in EL, we've been preparing a parcel for Lynne Woods to take down. I'm getting some movies and games together, and John requested codecs as he didn't have any and hadn't been able to watch the anime Dom had sent down. I'm just sticking everything I think would help into a spindle. I'm not sure how his eyes will be, but even if they get bad they will improve again and it will give him something to do. And even if he can't do it, maybe it will amuse Laura. I've also written a CD full of mp3's, and am sending down my collection of Queen for AJ.

P.S. This would be a really good time to send messages of encouragement and support....

Tuesday's News

The taking of the Orange Bag of Poison went quicker yesterday, as they didn't have to get the j-line flushed etc. John walked back from the hospital, but the effects of the Orange Bag of Poison were starting to show, and he was very tired afterwards. He spent most of the afternoon and evening sleeping. He did watch Survivor with AJ, tho. He mentioned that his eyes were starting to get sensitive to the glare again.

They were planning on walking to the hospital this morning, but taking things slowly and resting along the way. Rev Bailey was on standby if they did need a lift, however.

The op to remove the j-line is quite minor. Prof Du Toit will do it, and it only takes about 20 mins. After it's removed the risk of infection will be high again, so that will mean being Careful And Clean.

Lau sent most of John's things down from Grahamstown, and her friend was able to drop them off at the house, which was nice. We're trying to find out where Midgard is though, as I'm sure John will want it (him? her?) when he gets back.

Monday's News

I've heard at least 4 different accounts of what happened yesterday, and they all differ somewhat. I'm trying to piece them together to get a picture of what happened and what the doctor said, but I can't be sure it's accurate. Hopefully John and AJ will be able to correct the account if I get it wrong. Also, chemo shall henceforth be known as "The Orange Bag Of Poison".

They went in for The Orange Bag Of Poison, and got the great test results I posted yesterday. The nurse offered John lunch, and AJ said that he was on a low macrobial diet, but she checked the counts and said that with those high counts he could eat normally :) The counts are going to be knocked down by the The Orange Bag Of Poison though, but then they'll rebuild again as they have. So during this period he's probably sticking to the low macrobial thing... The Orange Bag Of Poison seems to have gone down well (not that it's something you'd ever particularly enjoy, but in relation to the way it could have gone), and John walked home from the hospital :) He phoned me from home at about 13:00, so it was The Orange Bag Of Poison has been absorbed by then. He have a lie-down in the afternoon.

John and AJ did speak to the doctor. AJ asked him what the best case scenario was, and he said that it was that John would be home for Christmas, and that they could continue taking The Orange Bag Of Poison in East London :)))) This is where it gets particularly confusing though, as some accounts have rated this as an almost certainty, and others have rated it as a slight possibility. I don't know. What I do know is that it will depend on how this block of Orange Bag Of Poison taking goes, and what the results from the tests they will take later will be. Some accounts say that if they do continue the Orange Bag Of Poison taking in East London, it will be done orally, and therefore John would have to have an op in Cape Town to remove the J-line before this happens. It is definite though that he will be having more of The Orange Bag Of Poison. When/if they are in East London for The Orange Bag Of Poison, they will have to travel down to Cape Town for checks frequently.

John says he's missing Midgard (his pc!) :)

A Link

This is the best website we've found about acute promyelocytic leukemia. It's quite comprehensive, and is written in user-friendly language. It was authored by a medical institution in the UK, and is meant for those who have just been diagnosed. Also, it is important to note that the stats given are NOT John's specific stats. As the website points out, John's youth and lack of other medical conditions means that his specific stats would be higher. The various websites we've been to seem to have a range of different stats, but for us the most important one is John's specific case....

About blood cells
A significantly more technical site

News of the Weekend and Today

On Friday, when they went to flush the J-line they found that the infection had cleared :) This means that they'll be starting chemo as planned today.

Over the weekend AJ had gone shopping with Janet Bailey, and had found some lovely skirts. John had gone for a walk by himself. And of course they ate well :)

For the chemo today, they're not sure how long it will take. They had to go in at 9, but then they still had to book in, flush the J-line, do tests, and wait for the pharmacy to mix the chemo. Apparently it can't be left, but needs to be used as soon as its made, which means they can't mix it ahead of time.

I got an sms from John with test results.

WBC: 4.71
PLT: 293
Haemoglobin: 11.2
Neutrafills: 71.7%

The white blood cell count has come up nicely :) The platelets are down a little, but still pretty close to "normal". The haemoglobin is now in the normal range, I think. This also means that John is feeling good. The neutrafills are up, and this is really good because it's a measure of the immune system, and means that John is significantly less likely to get sick, and therefore is also able to be an outpatient and to be around people.

But that's *my own* interpretation of the results though, so the doctors and AJ and John will be able to shed more light on the matter. However, the important thing for now is that the counts are high and rising, and that he's in a good position to start chemo and will have fewer and lesser side effects. W00t!

Laura is going down to Grahamstown on Friday, and Lynne from the library is going down around that time too. Visitors do seem to perk them up, so it's a good thing and something to look forward to :)