Our second week at RM House went just as quickly as the first week. Logan had to go to the hospital every second day for a check up and blood tests.
His appetite is still very small, but he manages to eat small amounts. One of the drugs he is on affects the appetite. So he still gets fed via his NG tube, but only over night now.
Tuesday the 27th september we go back to see the specialist, Logan said he cant wait to see her so she can tell us to go home. Tuesday morning took quite a long time to pass, Logan was looking at the clock every 15minutes, our appointment wasnt untill 1 oclock.
His blood tests the day before were all good, his physical exam was also good so we were told we could go home. Logan couldnt stop smiling.
The first flight we could get was the next morning. WE ARE NOW HOME!!!!!!
We can see an improvement in him over the last couple of days, he is getting colour in his cheeks and his energy levels are improving. Its really good to see him walking around outside with the dog.
Today his appetite has picked up a bit more, twice so far today he has said he is hungry. Tonight we are having his favourite meal, (roast lamb), that will surely get him eating.
Wednesday next week he is due back in Auckland for a check up. Thursday he is going into theatre to have his hickman line taken out. They dont usually take it out for 6 months. With all the questions Logan asked about what he is allowed to do, they decided to take it out so he can start having a lifestyle, they said if he needs anything they will put a temporary line in his hand or arm to give him what he needs. Then we will be home again on friday.
Sunday, 2 October 2011
Sunday, 18 September 2011
At RM House
Our first week here has gone really quickly. Logan has had to go to clinic 3 times during the week and have blood tests done. Friday was our longest visit there, he had to have his weekly IV antibiotic for the BK virus but first you have to have IV fluids for an hour, you also need fluids afterwards.
Saturday was a bit of a drama, his NG tube blocked at 2.30 am, I couldnt unblock it so I unplugged him from his feed and turned it off. At a more normal hour I tried unblocking it again and couldnt, so it was back up to the hospital to see if they could. They tried using coke to flush it, sometimes that works but not this time. So Logan pulled his tube out and they had to put a new one in.
His stomach is still not quite right, but is starting to eat very small amounts now and again.
Tomorrow morning he is due to have more blood tests done, then he will be reviewed to see when we can go home. If its not this week it will be next, but this week is looking very promising. Fingers crossed
Saturday was a bit of a drama, his NG tube blocked at 2.30 am, I couldnt unblock it so I unplugged him from his feed and turned it off. At a more normal hour I tried unblocking it again and couldnt, so it was back up to the hospital to see if they could. They tried using coke to flush it, sometimes that works but not this time. So Logan pulled his tube out and they had to put a new one in.
His stomach is still not quite right, but is starting to eat very small amounts now and again.
Tomorrow morning he is due to have more blood tests done, then he will be reviewed to see when we can go home. If its not this week it will be next, but this week is looking very promising. Fingers crossed
Friday, 9 September 2011
On the move
Things are great. Logan is off TPN and his NG feed is at his ideal rate of 75mls an hour. The move down the other end went well, but he wasnt able to leave his room much because of the catheters. (he wasnt able to wear pants with them).
The first catheter was taken out on monday that was pretty straight forward. Yesterday the catheter that goes through his stomach was due to come out, so the nurse came along with her tools and bottle of laughing gas. What is supposed to happen is you deflate the balloon of its fluid and it should pull out, but this didnt happen, the tube only came out so far then stopped. She tried a couple of times but stopped because she wasnt sure why it wouldnt come out.
The surgeons were called to come and take a look. Five and a half hours later they came. They were told to come back in the morning as it was 9.30 at night. 7am she was back, had a look and decided that she was going to just pull it out. The reason she said it never came out yesterday was because the hole had closed up a bit but a good yank would get it out.
So Logan was given panadol, tramadol and laughing gas. The Doctor got hold of the tube and just pulled the balloon out through his stomach. I couldnt believe it. It hurt him so much that he reached down and grabbed hold of the surgeons hand to get her away from him. He was then given oxynorm, thats a painkiller also.
The transplant coordinator cant believe they did that to him, she said he should have gone into theatre to have it removed. She is going to speak to higher powers.
So now he has another bravery bead.
The best news is today we are moving to Ronald McDonald House. Yesterday we went down to have a look. Its a transplant unit and fully self contained, very nice, and yes it has sky sport.
Logan has had his room decorated with All Black posters and flags amongst other things. This drew the attention of Jo, she is the nurse educator up here, she is also English. She would tease him that one day he would wake up and find pictures of English players in his room. Logan told her that seeing that would make him sicker. One day Logan decided to make a poster for her office door, it said "Jo loves the All Blacks" and it had silver streamers hanging off it. It is really quite large. The next morning she got to work and was on the war path wanting to know who did it. She was told, then came to see Logan and told him it was great but just you wait. It is still on the door, she will keep it there untill the world cup ends.
A couple of days later Jo had made him a poster, on it she had put photos of English players and it said "Logan loves English players", she put this on his door facing inwards. Logan screwed his nose up but had a good laugh about it.
But Logan couldnt leave it at that, as today is our last day here he decided to make another poster. This one is a picture of Johnny Wilkinson he got out of a magazine, he also got a picture of an All Blacks jersey. He glued the All Blacks jersey onto Johnny Wilkinson so it looks like he's wearing it and wrote beside it "English players dream of becoming an All Black", and put this on her office door beside the other one. Jo loves it. I have taken photos so can show you at a later date.
At the moment Logan is having his intragram, and we're waiting to hear if he needs platelets, then we are OUT OF HERE!
The first catheter was taken out on monday that was pretty straight forward. Yesterday the catheter that goes through his stomach was due to come out, so the nurse came along with her tools and bottle of laughing gas. What is supposed to happen is you deflate the balloon of its fluid and it should pull out, but this didnt happen, the tube only came out so far then stopped. She tried a couple of times but stopped because she wasnt sure why it wouldnt come out.
The surgeons were called to come and take a look. Five and a half hours later they came. They were told to come back in the morning as it was 9.30 at night. 7am she was back, had a look and decided that she was going to just pull it out. The reason she said it never came out yesterday was because the hole had closed up a bit but a good yank would get it out.
So Logan was given panadol, tramadol and laughing gas. The Doctor got hold of the tube and just pulled the balloon out through his stomach. I couldnt believe it. It hurt him so much that he reached down and grabbed hold of the surgeons hand to get her away from him. He was then given oxynorm, thats a painkiller also.
The transplant coordinator cant believe they did that to him, she said he should have gone into theatre to have it removed. She is going to speak to higher powers.
So now he has another bravery bead.
The best news is today we are moving to Ronald McDonald House. Yesterday we went down to have a look. Its a transplant unit and fully self contained, very nice, and yes it has sky sport.
Logan has had his room decorated with All Black posters and flags amongst other things. This drew the attention of Jo, she is the nurse educator up here, she is also English. She would tease him that one day he would wake up and find pictures of English players in his room. Logan told her that seeing that would make him sicker. One day Logan decided to make a poster for her office door, it said "Jo loves the All Blacks" and it had silver streamers hanging off it. It is really quite large. The next morning she got to work and was on the war path wanting to know who did it. She was told, then came to see Logan and told him it was great but just you wait. It is still on the door, she will keep it there untill the world cup ends.
A couple of days later Jo had made him a poster, on it she had put photos of English players and it said "Logan loves English players", she put this on his door facing inwards. Logan screwed his nose up but had a good laugh about it.
But Logan couldnt leave it at that, as today is our last day here he decided to make another poster. This one is a picture of Johnny Wilkinson he got out of a magazine, he also got a picture of an All Blacks jersey. He glued the All Blacks jersey onto Johnny Wilkinson so it looks like he's wearing it and wrote beside it "English players dream of becoming an All Black", and put this on her office door beside the other one. Jo loves it. I have taken photos so can show you at a later date.
At the moment Logan is having his intragram, and we're waiting to hear if he needs platelets, then we are OUT OF HERE!
Friday, 2 September 2011
It turns out the Hemorrhagic Cystitis Logan has is caused by the BK Virus. Apparently a lot of people have it but it nothing comes of it. Because Logan is immunosuppressed it has managed to cause him some bother. Logan calls it the burger king virus.
They had been giving him a lot of fluids to flush his bladder, clear the blood clots and to try and stop the bleeding. This caused too many other problems, not to mention all the pain he was in. He was getting nowhere near enough sleep and was completely exhausted.
So they decided it was time to put a catheter in. He ended up having two. One taking fluids in, this one went through his stomach and into the bladder, and the one going out. He has 100ml and hour going through as a flush. Finally he was able to sleep.
The op went well, but he needed oxygen for the next 16 hours as his breathing wasnt the best. He also had one on one nursing care for the next 48hrs, until he was stable. I think a lot of this had to do with all the painkillers he was on. He was on IV morphine and ketamine.
When he went down to theatre he was like a happy drunk, he had so many painkillers in him. He was giving the anaethetist a bit of stick about her hat, he thought she looked like a kitchen worker. Logan is not usually like this with strangers as you would know.
She gave him a bit of stick back by asking him if the gas smelled like oranges or petrol.
The next day when she came up to see how he was she said he had charmed all the ladies in theatre.
After a couple of days his fevers finally started to subside and his pain was a bit less.
Three times they have tried reducing the amount of flush going through but within the hour it was back to being red with clots and having to be put back up again. Today it was reduced again and finally it is staying clear.
Things are looking really good. His graft couldnt be better. The doctors are really pleased with how the transplant has gone and the way his cells are growing. They think he is a showoff with the numbers he has.
We found out tonight that he is coming out of isolation on sunday and going on the ward, this is a huge step. He is going down the teenagers end which is quite nice, they have a lounge just for them and he will finally get to talk to some other kids.
He is slowly getting taken off the IV painkillers. His NG feed is getting increased slowly which means he will be coming off the TPN soon. Within the week hopefully he will be able to have some of his drugs orally, the sooner this happens the sooner we can go to RMH. He hasnt eaten a meal in over 6 weeks and he's been nil by mouth for a while so it will take a while for his stomach to adjust to the NG feed again.
During all this he still managed to have a bit of fun. He managed to pull one over me which doesnt happen very often. A nurse had come in to do his obs, Logan was just sitting up in bed when he said all of a sudden "I'm going to vomit", Carol and I looked at each other, I ran for the vomit bowl and gave it to him, he put his face in it pressed his ipod, and out came a vomit noise. Then he looks up with a cheesy grin on his face.
Where Logan got his strength from during this I will never know, he has been amazing.
He has been given two bravery beads to put with his beads of courage, he truly deserves them.
They had been giving him a lot of fluids to flush his bladder, clear the blood clots and to try and stop the bleeding. This caused too many other problems, not to mention all the pain he was in. He was getting nowhere near enough sleep and was completely exhausted.
So they decided it was time to put a catheter in. He ended up having two. One taking fluids in, this one went through his stomach and into the bladder, and the one going out. He has 100ml and hour going through as a flush. Finally he was able to sleep.
The op went well, but he needed oxygen for the next 16 hours as his breathing wasnt the best. He also had one on one nursing care for the next 48hrs, until he was stable. I think a lot of this had to do with all the painkillers he was on. He was on IV morphine and ketamine.
When he went down to theatre he was like a happy drunk, he had so many painkillers in him. He was giving the anaethetist a bit of stick about her hat, he thought she looked like a kitchen worker. Logan is not usually like this with strangers as you would know.
She gave him a bit of stick back by asking him if the gas smelled like oranges or petrol.
The next day when she came up to see how he was she said he had charmed all the ladies in theatre.
After a couple of days his fevers finally started to subside and his pain was a bit less.
Three times they have tried reducing the amount of flush going through but within the hour it was back to being red with clots and having to be put back up again. Today it was reduced again and finally it is staying clear.
Things are looking really good. His graft couldnt be better. The doctors are really pleased with how the transplant has gone and the way his cells are growing. They think he is a showoff with the numbers he has.
We found out tonight that he is coming out of isolation on sunday and going on the ward, this is a huge step. He is going down the teenagers end which is quite nice, they have a lounge just for them and he will finally get to talk to some other kids.
He is slowly getting taken off the IV painkillers. His NG feed is getting increased slowly which means he will be coming off the TPN soon. Within the week hopefully he will be able to have some of his drugs orally, the sooner this happens the sooner we can go to RMH. He hasnt eaten a meal in over 6 weeks and he's been nil by mouth for a while so it will take a while for his stomach to adjust to the NG feed again.
During all this he still managed to have a bit of fun. He managed to pull one over me which doesnt happen very often. A nurse had come in to do his obs, Logan was just sitting up in bed when he said all of a sudden "I'm going to vomit", Carol and I looked at each other, I ran for the vomit bowl and gave it to him, he put his face in it pressed his ipod, and out came a vomit noise. Then he looks up with a cheesy grin on his face.
Where Logan got his strength from during this I will never know, he has been amazing.
He has been given two bravery beads to put with his beads of courage, he truly deserves them.
Tuesday, 23 August 2011
18th August - 23rd August.
This week Logan took two steps backwards.
First he starting spiking fevers and feeling lousy, then he started getting stomach pains.
He had an xray which didnt show a great deal, so he had an ultra sound which showed inflammation of the bladder. The pain was getting pretty bad so he was put on fentanyl and was given a pump so he could give the painkiller to himself. The next morning he was still in alot of pain and it was discovered he wasnt getting the correct dose. To cut a long story short, he is now on ketamine and morphine because his pain became unbearable.
The cause of his pain is hemorrhagic cystitis, which is inflammation of the bladder. This is caused by either a virus which he has tested negative for so far, or from the chemo he received. The doctor said its more than likely the chemo.
Since thursday Logan has done nothing but pass blood and blood clots. At the moment he is getting large amounts of fluids to flush him out. Which causes other problems that I wont get into or I will be writing all night.
Friday he was made nil by mouth. Just when he had started taking his drugs orally it all had to stop. His stomach couldnt cope. Everything is IV again.
His NG feed had to stop also so now he's back on TPN.
It has been a very tough and frustrating time for him and I feel very proud of the way he has coped.
He can be feeling really terrible, but when someone asks him how his is he never complains he always says good. The nurses have worked him out now though and tease him about not complaining.
We do have good news though, his graft is looking really good. His cells are coming up most days.
His white cell count is 3.01 and his neutrophils are 1.18. If he didnt have this speed bump we would have left hospital and gone to Ronald McDonald House.
We also have another fart story: When Caitlin came up on friday she brought a fart machine up with her (Logan says thankyou Paul for the loan of it). This one is activated by remote, he pulled the usual stunt on the nurses which got a few laughs. One of the nurses dared him to do it to the doctor on rounds. On saturday morning it was a consultant we hadnt met before doing rounds so Logan put the machine under the covers and had the remote in his hand. The doctor said his thing then asked Logan if he could feel his stomach, Logan said "hang on" lifted his leg pressed the remote and let out a huge fart. The doctor thought Logan had really done one. The nurse had to let him know it wasn't Logan it was a joke. I still cant believe he did it, I didnt think he would go through with it.
I'm not too sure how much longer we will be here, the doctors cant say how long it will take to come right, they just say things like "it can take a while" and "we can only treat the symptoms".
Logan has received alot of pictures, cards, goodies, texts and messages of support that we need to say a big thankyou for. It is very much appreciated and it brightens his day so thankyou.
This week Logan took two steps backwards.
First he starting spiking fevers and feeling lousy, then he started getting stomach pains.
He had an xray which didnt show a great deal, so he had an ultra sound which showed inflammation of the bladder. The pain was getting pretty bad so he was put on fentanyl and was given a pump so he could give the painkiller to himself. The next morning he was still in alot of pain and it was discovered he wasnt getting the correct dose. To cut a long story short, he is now on ketamine and morphine because his pain became unbearable.
The cause of his pain is hemorrhagic cystitis, which is inflammation of the bladder. This is caused by either a virus which he has tested negative for so far, or from the chemo he received. The doctor said its more than likely the chemo.
Since thursday Logan has done nothing but pass blood and blood clots. At the moment he is getting large amounts of fluids to flush him out. Which causes other problems that I wont get into or I will be writing all night.
Friday he was made nil by mouth. Just when he had started taking his drugs orally it all had to stop. His stomach couldnt cope. Everything is IV again.
His NG feed had to stop also so now he's back on TPN.
It has been a very tough and frustrating time for him and I feel very proud of the way he has coped.
He can be feeling really terrible, but when someone asks him how his is he never complains he always says good. The nurses have worked him out now though and tease him about not complaining.
We do have good news though, his graft is looking really good. His cells are coming up most days.
His white cell count is 3.01 and his neutrophils are 1.18. If he didnt have this speed bump we would have left hospital and gone to Ronald McDonald House.
We also have another fart story: When Caitlin came up on friday she brought a fart machine up with her (Logan says thankyou Paul for the loan of it). This one is activated by remote, he pulled the usual stunt on the nurses which got a few laughs. One of the nurses dared him to do it to the doctor on rounds. On saturday morning it was a consultant we hadnt met before doing rounds so Logan put the machine under the covers and had the remote in his hand. The doctor said his thing then asked Logan if he could feel his stomach, Logan said "hang on" lifted his leg pressed the remote and let out a huge fart. The doctor thought Logan had really done one. The nurse had to let him know it wasn't Logan it was a joke. I still cant believe he did it, I didnt think he would go through with it.
I'm not too sure how much longer we will be here, the doctors cant say how long it will take to come right, they just say things like "it can take a while" and "we can only treat the symptoms".
Logan has received alot of pictures, cards, goodies, texts and messages of support that we need to say a big thankyou for. It is very much appreciated and it brightens his day so thankyou.
Wednesday, 17 August 2011
Things are on the up
During the past week Logan has been given one blood transfusion and platelets three times. He is doing really well. His cell count is at 1.23, and he now has neutrophils they are at .53, this is very exciting.
But I lost the bet, it is wednesday and we are still here. Logans neutrophils need to be at least 1.0 and his cell count needs to be between 2 and 3.
His blood pressure never came down so he has regular meds for this, once some of the drugs stop it will more than likely come down.
It is easy to see he is feeling better. He has started hassling some of the nurses. On his ipod he has fart noises, he puts the ipod under his covers, waits for a poor unsuspecting nurse to come in then presses the button and lets rip. The look on their face is priceless, a good laugh is had by all.
This afternoon has been a bit of a step back though, he has spiked a fever and is back on antibiotics. They arent sure why, but have taken blood cultures from his hickman line. We will know in a couple of days if its his line or a virus.
But I lost the bet, it is wednesday and we are still here. Logans neutrophils need to be at least 1.0 and his cell count needs to be between 2 and 3.
His blood pressure never came down so he has regular meds for this, once some of the drugs stop it will more than likely come down.
It is easy to see he is feeling better. He has started hassling some of the nurses. On his ipod he has fart noises, he puts the ipod under his covers, waits for a poor unsuspecting nurse to come in then presses the button and lets rip. The look on their face is priceless, a good laugh is had by all.
This afternoon has been a bit of a step back though, he has spiked a fever and is back on antibiotics. They arent sure why, but have taken blood cultures from his hickman line. We will know in a couple of days if its his line or a virus.
Thursday, 11 August 2011
Back on line
Once again we have the internet back on so you get bombarded with a lot.
Logans echo came back all good.
The following week was really tough for Logan. He ended up with Sepsis. His temperature was up most of the time, the highest I saw it was 40.
When he first came into hospital his heart rate was around 50 beats a minute, they thought it was quite low but they soon realised it was normal for Logan. During this week it went up to 152 beats a minute. He also spent 90 per cent of the time asleep.
Day +8 he was given platelets and a blood transfusion. He also started on something called GCSF, this helps the graft to grow. He also had a bad headache all day.
Day +9 Today it felt like the only time he was awake was to go for a pee. His temperature was up most of the day and he still had a headache. Apparently some of the drugs he is on can cause this.
He had another blood transfusion, it takes two hours for the transfusion to go through, towards the end he broke out in a rash, it was all over his torso. The Doctors were sent for and they seemed to think it was an engraftment rash.
He also became very sensitive to light, so when he was awake he couldnt have his eyes open for long, it was too sore. The blinds had to be kept closed on one side of the room.
Day +10 Logan still has his rash this morning, the Doctor has said it doesnt look like your typical rash associated with this, so he was speaking to a Virologist to see about testing for viruses, where the best place to get a specimen is.
Because of all the treatment Logan has become low in potassium phosphate and magnesium, so he now gets those via his NG tube.
Because he still has a headache and is still sensitive to light, they have decided to give him a CT scan to look for infection.
He also had to have a lumbar puncture to rule out infection also. Originally they said they were going to sedate him but because of his heart rate and blood pressure at the time they were worried it would lay him out too much so decided not to. Instead they put numbing cream on his back. He did exactly what the doctor said and kept still. You could see it was really painful but he was soooo BRAVE, the only thing he said was "this hurts", but he could have been talking about the weather. For those of you who are interested, spinal fluid looks just like water. (Yes I watched the whole thing).
The good news is he didnt have meningitis or any other ugly virus.
Logan was also given platelets again today.
Day +11 Logan was given his weekly immunoglobulin (prevents viral infections)
His temperature was not as high today and he seemed to feel a little bit better.
More platelets were given tonight.
In general he had quite a good day yaaaaay.
Day +12 Just when you think you have gone a two steps forward you take one back.
Logan woke feeling really tired and dizzy with a temperature. He slept most of the day.
He was given extra fluids and more platelets.
Today is the first day he has shown sign of new cells. Before the tests would show less than 0.1 today he has 0.1 so that is REALLY EXCITING.
Day +14 Logan was given more platelets this morning. His temperature got up a couple of times today, that can cause his platelet levels to drop.
He had a reaction to his antibiotics today. He broke out in a rash, you could literally see it spread over his body. Once again the doctor was called to take a look at him. The rash went as fast as it came though. He's still on it but they dilute it down more and give it to him over 1 hour. Which is just as well as its the best one for the infection he has.
Day +15 Yaaaaay his cell count has gone up to 0.15 where it sayed for two days.
He's feeling a lot brighter, and is awake more than he is asleep.
Day +16 White cell count is at 0.26 thats a big jump from yesterday. Once he's at between 2 and 3 we can go to Ronald McDonald House as an outpatient. I have got a bet going that by next wednesday we will be there so fingers crossed.
The only down side is his blood pressure is really high at the moment. He's been given another drug to rectify this. He's also been given more platelets today.
Logans echo came back all good.
The following week was really tough for Logan. He ended up with Sepsis. His temperature was up most of the time, the highest I saw it was 40.
When he first came into hospital his heart rate was around 50 beats a minute, they thought it was quite low but they soon realised it was normal for Logan. During this week it went up to 152 beats a minute. He also spent 90 per cent of the time asleep.
Day +8 he was given platelets and a blood transfusion. He also started on something called GCSF, this helps the graft to grow. He also had a bad headache all day.
Day +9 Today it felt like the only time he was awake was to go for a pee. His temperature was up most of the day and he still had a headache. Apparently some of the drugs he is on can cause this.
He had another blood transfusion, it takes two hours for the transfusion to go through, towards the end he broke out in a rash, it was all over his torso. The Doctors were sent for and they seemed to think it was an engraftment rash.
He also became very sensitive to light, so when he was awake he couldnt have his eyes open for long, it was too sore. The blinds had to be kept closed on one side of the room.
Day +10 Logan still has his rash this morning, the Doctor has said it doesnt look like your typical rash associated with this, so he was speaking to a Virologist to see about testing for viruses, where the best place to get a specimen is.
Because of all the treatment Logan has become low in potassium phosphate and magnesium, so he now gets those via his NG tube.
Because he still has a headache and is still sensitive to light, they have decided to give him a CT scan to look for infection.
He also had to have a lumbar puncture to rule out infection also. Originally they said they were going to sedate him but because of his heart rate and blood pressure at the time they were worried it would lay him out too much so decided not to. Instead they put numbing cream on his back. He did exactly what the doctor said and kept still. You could see it was really painful but he was soooo BRAVE, the only thing he said was "this hurts", but he could have been talking about the weather. For those of you who are interested, spinal fluid looks just like water. (Yes I watched the whole thing).
The good news is he didnt have meningitis or any other ugly virus.
Logan was also given platelets again today.
Day +11 Logan was given his weekly immunoglobulin (prevents viral infections)
His temperature was not as high today and he seemed to feel a little bit better.
More platelets were given tonight.
In general he had quite a good day yaaaaay.
Day +12 Just when you think you have gone a two steps forward you take one back.
Logan woke feeling really tired and dizzy with a temperature. He slept most of the day.
He was given extra fluids and more platelets.
Today is the first day he has shown sign of new cells. Before the tests would show less than 0.1 today he has 0.1 so that is REALLY EXCITING.
Day +14 Logan was given more platelets this morning. His temperature got up a couple of times today, that can cause his platelet levels to drop.
He had a reaction to his antibiotics today. He broke out in a rash, you could literally see it spread over his body. Once again the doctor was called to take a look at him. The rash went as fast as it came though. He's still on it but they dilute it down more and give it to him over 1 hour. Which is just as well as its the best one for the infection he has.
Day +15 Yaaaaay his cell count has gone up to 0.15 where it sayed for two days.
He's feeling a lot brighter, and is awake more than he is asleep.
Day +16 White cell count is at 0.26 thats a big jump from yesterday. Once he's at between 2 and 3 we can go to Ronald McDonald House as an outpatient. I have got a bet going that by next wednesday we will be there so fingers crossed.
The only down side is his blood pressure is really high at the moment. He's been given another drug to rectify this. He's also been given more platelets today.
Monday, 1 August 2011
Day + 2 - +6
We havent had internet for a while, not sure what happened but I turned the computer on this morning and we're back on.
The days have been quite eventful, with one thing or another.
Day +2 Logans hair started to fall out.He sat in bed pulling it out. It was easier to pull it out rather than let it come out by itself, it was going all through his bed, getting in his mouth and eyes, just messy. He said it was easier than plucking a duck. He still has a little bit of fluff on his head though, and it looks quite a bit lighter. Being bald doesnt phase him too much.
Day +3
We had a little bit of a hickup, his NG tube got blocked so they had to put another one in. Before the new one could go in he had to have another platelet transfusion, he was so low, just in case he bled. Logan pulled the old one out himself.
His weight is up and down all the time. This morning he has lost 2 kgs from the night before, but it will be back up in no time.
Logan has started having something called immunoglobulin. This prevents viral infections and he will have it weekly. It is a blood product.
NG feeds are going back up. Hes at 20ml an hr.
Day +6
Tonight Logan got a fever, and was sick all night. He was given more platelets and had a chest xray. More blood was taken to check for infection and he's been put on another antibiotic just in case.
Next morning we got the results, and he has an infection in his hickman line. The new antibiotic was the correct one, and they wont have to put a new line in.
He is still very feverish this morning but soon all his new drugs will kick in and he will be fine again.
The Doctor could hear a murmer when she did rounds so an Echo has been ordered for him.
Next thing a Cardiologist arrived to have a listen. An Echo will be done this afternoon or first thing tomorrow morning. They think it is just through having a fever.
He is getting looked after very well. Everyone is just awesome especially the nurses.
Good news, this afternoon Logan will be taken off the TPN, his NG feed is up to 60ml. The goal is 70mls an hour.
The days have been quite eventful, with one thing or another.
Day +2 Logans hair started to fall out.He sat in bed pulling it out. It was easier to pull it out rather than let it come out by itself, it was going all through his bed, getting in his mouth and eyes, just messy. He said it was easier than plucking a duck. He still has a little bit of fluff on his head though, and it looks quite a bit lighter. Being bald doesnt phase him too much.
Day +3
We had a little bit of a hickup, his NG tube got blocked so they had to put another one in. Before the new one could go in he had to have another platelet transfusion, he was so low, just in case he bled. Logan pulled the old one out himself.
His weight is up and down all the time. This morning he has lost 2 kgs from the night before, but it will be back up in no time.
Logan has started having something called immunoglobulin. This prevents viral infections and he will have it weekly. It is a blood product.
NG feeds are going back up. Hes at 20ml an hr.
Day +6
Tonight Logan got a fever, and was sick all night. He was given more platelets and had a chest xray. More blood was taken to check for infection and he's been put on another antibiotic just in case.
Next morning we got the results, and he has an infection in his hickman line. The new antibiotic was the correct one, and they wont have to put a new line in.
He is still very feverish this morning but soon all his new drugs will kick in and he will be fine again.
The Doctor could hear a murmer when she did rounds so an Echo has been ordered for him.
Next thing a Cardiologist arrived to have a listen. An Echo will be done this afternoon or first thing tomorrow morning. They think it is just through having a fever.
He is getting looked after very well. Everyone is just awesome especially the nurses.
Good news, this afternoon Logan will be taken off the TPN, his NG feed is up to 60ml. The goal is 70mls an hour.
Wednesday, 27 July 2011
Day 0 Transplant day
The day started out with more vomit, so the food through his NG tube has been reduced. He has mucositis, which has given him ulcers and rawness in his mouth and throat. They think it is in his stomach also because of the pain he is getting. He's now been given a morphine pump to use himself, when the pain comes on press a button and he gets more.
This morning he was given another platelet transfusion.
The stem cells arrived in what looked like a compost bin, inside this was another container that had liquid nitrogen inside it that was frozen to -165deg. Inside that container was what looked like a tin box that had the stem cells in a bag on it. They were defrosted in warm water inside their bag.
He was given a bit more morphine and phenergan because sometimes you can have a reaction to the preservative they are in and can cause a bit of pain. Logan was fine throughout the whole thing, that lasted all of five minutes. The nurse just hung the bag on a hook and they went straight into his hickman line. The stem cells will find their own way to his bone marrow and they should start producing healthy cells in 10 days.
The smell you get when you open a can of corn is what the stem cells smelt like, it was quite strong,
and will hang around for a couple of days. You get used to the smell, but when you leave the room and come back in it is there.
The cells came from Milwaukee USA, and there was 30mls of them in the bag.
Day +1
The day started out not very good, Logans in quite a bit of pain so they have got background morphine going all the time, he is still able to give himself little top ups when he needs to.
His feed has been reduced even more. He's down to 20ml an hour but they have increased his IV fluids. He also has a fever off and on.
He has also been given another platelet transfusion and a blood transfusion. Platelets were given in the morning and the blood in the evening.
He spends a lot of time sleeping, and when he is awake he has no energy.
I still get the odd smile out of him though.
This morning he was given another platelet transfusion.
The stem cells arrived in what looked like a compost bin, inside this was another container that had liquid nitrogen inside it that was frozen to -165deg. Inside that container was what looked like a tin box that had the stem cells in a bag on it. They were defrosted in warm water inside their bag.
He was given a bit more morphine and phenergan because sometimes you can have a reaction to the preservative they are in and can cause a bit of pain. Logan was fine throughout the whole thing, that lasted all of five minutes. The nurse just hung the bag on a hook and they went straight into his hickman line. The stem cells will find their own way to his bone marrow and they should start producing healthy cells in 10 days.
The smell you get when you open a can of corn is what the stem cells smelt like, it was quite strong,
and will hang around for a couple of days. You get used to the smell, but when you leave the room and come back in it is there.
The cells came from Milwaukee USA, and there was 30mls of them in the bag.
Day +1
The day started out not very good, Logans in quite a bit of pain so they have got background morphine going all the time, he is still able to give himself little top ups when he needs to.
His feed has been reduced even more. He's down to 20ml an hour but they have increased his IV fluids. He also has a fever off and on.
He has also been given another platelet transfusion and a blood transfusion. Platelets were given in the morning and the blood in the evening.
He spends a lot of time sleeping, and when he is awake he has no energy.
I still get the odd smile out of him though.
Sunday, 24 July 2011
Goodbye ATG
The last 2 days of ATG were nowhere near as bad as the first day. He got a temperature but not like the first day, and he still has a rash.
The steroids are making him puff up, but that should go when he comes off them.
He spends most of the day sleeping. This morning he read for close to an hour then had a sleep. This afternoon he managed to watch most of the Magpies game then he was back to sleep.
He's getting used to having his blood pressure and pulse taken in his sleep, the arm automatically comes out without realising it, this happens all day and all night.
This morning he had to have another platelet transfusion, and tonight he is having a red cell transfusion.
Friday he started on 2 drugs to prevent Graft vs Host Disease. This is where Logans immune system recognises the new cells as foreign and attacks them, and vice versa.
Tomorrow is Day 0 Transplant Day.
The steroids are making him puff up, but that should go when he comes off them.
He spends most of the day sleeping. This morning he read for close to an hour then had a sleep. This afternoon he managed to watch most of the Magpies game then he was back to sleep.
He's getting used to having his blood pressure and pulse taken in his sleep, the arm automatically comes out without realising it, this happens all day and all night.
This morning he had to have another platelet transfusion, and tonight he is having a red cell transfusion.
Friday he started on 2 drugs to prevent Graft vs Host Disease. This is where Logans immune system recognises the new cells as foreign and attacks them, and vice versa.
Tomorrow is Day 0 Transplant Day.
Saturday, 23 July 2011
The end of chemo
Chemo has finished, the last day was thursday. Logan is completely off food now, he hasnt eaten since tuesday when he had a mouthful of weetbix. He is feed through his NG tube constantly now. The goal is to get him to 90ml an hour, thats the equivalent to 90 calories an hour, he is currently at 75.
Day -3 was the first day of ATG. This attacks his T lyphocytes so they cant attack the new cells when they are transplanted. It takes 6 hours for the drug to run its course. Not a very nice drug at all.
He is also given 2 other drugs to help stop an allergic reaction.
During the 6 hours he became freezing cold, but he had a temperature, he got a really bad headache also.
He got the shakes, I have never seen anyone shake like that before, the nurse called it The Rigors. He also has a rash. All this I am told is normal. The first day is supposed to be the worst day, we have 2 to go.
Eventually he went to sleep, which was the best thing he could do.
Day -2 started out with a massive blood nose that wouldnt stop. It was running down the back of his throat and he was having to spit it out. He ended up having a platelet transfusion. I thought they would have been red but platelets are yellow. He was given his donors blood type, apparently it is okay to do this with platelets but not with red blood cells. Eventually his blood type will change to that of his donor.
The 2nd dose of ATG is about to start, hopefully it is easier than yesterday.
Day -3 was the first day of ATG. This attacks his T lyphocytes so they cant attack the new cells when they are transplanted. It takes 6 hours for the drug to run its course. Not a very nice drug at all.
He is also given 2 other drugs to help stop an allergic reaction.
During the 6 hours he became freezing cold, but he had a temperature, he got a really bad headache also.
He got the shakes, I have never seen anyone shake like that before, the nurse called it The Rigors. He also has a rash. All this I am told is normal. The first day is supposed to be the worst day, we have 2 to go.
Eventually he went to sleep, which was the best thing he could do.
Day -2 started out with a massive blood nose that wouldnt stop. It was running down the back of his throat and he was having to spit it out. He ended up having a platelet transfusion. I thought they would have been red but platelets are yellow. He was given his donors blood type, apparently it is okay to do this with platelets but not with red blood cells. Eventually his blood type will change to that of his donor.
The 2nd dose of ATG is about to start, hopefully it is easier than yesterday.
Tuesday, 19 July 2011
Chemo again
Day -7 (monday) chemo started again, it is a different drug to what he had last week. With this one he needs IV fluids for 2 hours before chemo can start. Then for six hours after it finishes he has fluids with a drug in it to help protect the bladder. The chemo only took one hour to run its course. Now he has to pee in a bottle each time he needs to go so they can measure his output and check for red blood cells.
He's been given strong anti sick medication to help him feel ok, as last week wasnt that great with all the vomiting. It has worked so far.
Yesterday his nasal gastric tube went in. He was so good getting it put in, the trick was to drink through a straw and keep swallowing. Last night they had food trickling in while he slept, it looks a bit like a pale chocolate milkshake, that will happen everyday now. He is eating less and less each day, he just doesnt feel like food. He's lost 2 kilos since last monday.
We did have a bit of excitement though, on sunday night a nurse came in and got us to have a look out the nurses station window. The nurses station is right across the hall from our room, Logans not allowed out, but she said it would be fine. In the carpark down below there was a fire, 3 fire trucks were there putting it out, we couldnt quite see what was on fire but presume it was a car.
I saw a not so pretty sight yesterday, I was looking out the window over at Auckland hospital, and saw someone standing at their window looking out also, that was fine untill he turned around............ all I could see was his bare backside.
He's been given strong anti sick medication to help him feel ok, as last week wasnt that great with all the vomiting. It has worked so far.
Yesterday his nasal gastric tube went in. He was so good getting it put in, the trick was to drink through a straw and keep swallowing. Last night they had food trickling in while he slept, it looks a bit like a pale chocolate milkshake, that will happen everyday now. He is eating less and less each day, he just doesnt feel like food. He's lost 2 kilos since last monday.
We did have a bit of excitement though, on sunday night a nurse came in and got us to have a look out the nurses station window. The nurses station is right across the hall from our room, Logans not allowed out, but she said it would be fine. In the carpark down below there was a fire, 3 fire trucks were there putting it out, we couldnt quite see what was on fire but presume it was a car.
I saw a not so pretty sight yesterday, I was looking out the window over at Auckland hospital, and saw someone standing at their window looking out also, that was fine untill he turned around............ all I could see was his bare backside.
Sunday, 17 July 2011
Week 1 down
Thursday and Friday havent been great days.. Logan has felt sick most of the time and has had no energy. He hasnt been able to keep much down, so they have put him on IV fluids, they have helped. One of the drugs he is on has really upset his system, his last day of that drug is today (sunday).
Saturday night he felt like a meatball sub, so Doug went and got him one, he kept it down and hasnt looked back since. He's eating and drinking small amounts, so has now been taken off the IV fluids this morning.
Also he has been given some high nutrient drinks to drink as he has lost 1kg in four days.
Today it is easy to see a change for the better in him, because he brought out his tennis ball and we played hand ball for a while.
This morning I had a bit of a laugh to myself. A nurse started her shift that Logan hasnt had before. As usual before breakfast he was brought in his cocktail of drugs. This morning there was 7 tablets in the cup instead of his usual 6, he noticed this and decided he wasnt going to take them because this is not how many he takes. I got the nurse for him and he asked her if that was right because he doesnt usually take that many. She went to double check, brought in his drug chart to show him, as it turns out today is an extra tablet day. She did say "good on you Logan for asking".
It was great excitement on friday afternoon for Doug and Caitlin, when they got to Auckland airport terminal they saw The All Blacks. Caitlin was walking right beside Piri Weepu. We said "thats nothing", it was dress up as an animal day for the staff, and Logan was being looked after by a Panda Bear and had a visit from Big Bird. But really I know what he would have preferred.
Saturday night he felt like a meatball sub, so Doug went and got him one, he kept it down and hasnt looked back since. He's eating and drinking small amounts, so has now been taken off the IV fluids this morning.
Also he has been given some high nutrient drinks to drink as he has lost 1kg in four days.
Today it is easy to see a change for the better in him, because he brought out his tennis ball and we played hand ball for a while.
This morning I had a bit of a laugh to myself. A nurse started her shift that Logan hasnt had before. As usual before breakfast he was brought in his cocktail of drugs. This morning there was 7 tablets in the cup instead of his usual 6, he noticed this and decided he wasnt going to take them because this is not how many he takes. I got the nurse for him and he asked her if that was right because he doesnt usually take that many. She went to double check, brought in his drug chart to show him, as it turns out today is an extra tablet day. She did say "good on you Logan for asking".
It was great excitement on friday afternoon for Doug and Caitlin, when they got to Auckland airport terminal they saw The All Blacks. Caitlin was walking right beside Piri Weepu. We said "thats nothing", it was dress up as an animal day for the staff, and Logan was being looked after by a Panda Bear and had a visit from Big Bird. But really I know what he would have preferred.
Thursday, 14 July 2011
First days of chemo
We got to the ward and were taken straight to our room, it looks out over A & E at Auckland Hospital, apparently now and again you get to see a bit of excitement down there.
I knew chemo was starting that day but no-one said anything about all the other drugs he would have to take, that was a shock. The poor guy rattles when he walks now.
He has to take one drug that prevents seizures,
another that helps flush the kidneys
another that prevents a certain lung infection
another that prevents fungal infections
another that prevents viral infections
another that prevents veno-occlusive disease (cant remember what that is but will find out)
anti sickness drugs (that dont seem to be working)
Some have to be taken every 4 hrs, some every 6hrs, and some every 8hrs.
He's also on antibiotics, and has to use a mouth rinse after each brush to help prevent ulcers.
They call his first day of chemo day -14 each day after that is day -13, -12, -11 etc untill you get to day 0 which is transplant day, after that its day +1, +2 etc.
During his first day of chemo blood samples are taken, these get sent to Christchurch, they test to see if they are giving him the right dose.
The first blood test is half way through the infusion
2nd at the end
3rd half an hour after infusion has finished
4th 2 hours after infusion has finished
5th 6 hours after infusion has finished
Day -13 can proceed because they have given him the correct dose.
We are now at day -11 and it has been the worst day, the anti sickness arent working and he has spent a bit of time vomiting, one more day of this drug to go, and he gets to have two days rest.
He has also had to have an ECG as his heart rate is quite low. I think they have now put that down to being fit.
On a lighter note, yesterday he spent a bit of time on the wii racing one of his nurses Rebecca. That was quite a laugh for him and Rebecca.
I knew chemo was starting that day but no-one said anything about all the other drugs he would have to take, that was a shock. The poor guy rattles when he walks now.
He has to take one drug that prevents seizures,
another that helps flush the kidneys
another that prevents a certain lung infection
another that prevents fungal infections
another that prevents viral infections
another that prevents veno-occlusive disease (cant remember what that is but will find out)
anti sickness drugs (that dont seem to be working)
Some have to be taken every 4 hrs, some every 6hrs, and some every 8hrs.
He's also on antibiotics, and has to use a mouth rinse after each brush to help prevent ulcers.
They call his first day of chemo day -14 each day after that is day -13, -12, -11 etc untill you get to day 0 which is transplant day, after that its day +1, +2 etc.
During his first day of chemo blood samples are taken, these get sent to Christchurch, they test to see if they are giving him the right dose.
The first blood test is half way through the infusion
2nd at the end
3rd half an hour after infusion has finished
4th 2 hours after infusion has finished
5th 6 hours after infusion has finished
Day -13 can proceed because they have given him the correct dose.
We are now at day -11 and it has been the worst day, the anti sickness arent working and he has spent a bit of time vomiting, one more day of this drug to go, and he gets to have two days rest.
He has also had to have an ECG as his heart rate is quite low. I think they have now put that down to being fit.
On a lighter note, yesterday he spent a bit of time on the wii racing one of his nurses Rebecca. That was quite a laugh for him and Rebecca.
Sunday, 10 July 2011
Auckland so far
We arrived in Auckland on wednesday , went straight to Ronald McDonald house to drop our bags off then went up to Starship. Logan had to have more blood tests, before we could see the specialist. That was pretty straight forward.
Thursday we had to be back at 12oclock for blood pressure etc. He went into theatre at 1.30 to have his line put in. Two hours later they took me to recovery to see him. Logan was really groggy which he didnt like, he wanted to wake up fully straight away. He said to the recovery nurse " how much anaestetic did they give me?", She thought that was quite cute. We then had to wait 4 hours before he could leave, they had to make sure there was no bleeding etc.
The line goes in through the jugular vein and gets thread through untill in reaches the top of the heart, he has a bit of bruising and tenderness but other than that he is good.
Friday we had to be back at the hospital for a preadmission check, that also was straight forward.
So thats all the blood tests and checks untill monday when he has to be back in at 9 oclock.
Saturday we had a visit from Kane, Rachael and the kids, we all managed to get tickets to see Walking with Dinosaurs, what a great show.
Thursday we had to be back at 12oclock for blood pressure etc. He went into theatre at 1.30 to have his line put in. Two hours later they took me to recovery to see him. Logan was really groggy which he didnt like, he wanted to wake up fully straight away. He said to the recovery nurse " how much anaestetic did they give me?", She thought that was quite cute. We then had to wait 4 hours before he could leave, they had to make sure there was no bleeding etc.
The line goes in through the jugular vein and gets thread through untill in reaches the top of the heart, he has a bit of bruising and tenderness but other than that he is good.
Friday we had to be back at the hospital for a preadmission check, that also was straight forward.
So thats all the blood tests and checks untill monday when he has to be back in at 9 oclock.
Saturday we had a visit from Kane, Rachael and the kids, we all managed to get tickets to see Walking with Dinosaurs, what a great show.
Wednesday, 29 June 2011
The plan
We went back to Starship on the 7th of June, and were given a treatment start date.
The plan is: another day trip on the 21st of June so Logan can have more blood tests,
(they took 6 tubes), and have a lung function test.
6th July we go back to Starship for a clinic appointment
7th July Logan goes into theatre to have his hickman line inserted
8th back in to have his line checked, during this time we stay at Ronald McDonald House.
Monday 11th we move to the hospital and chemo starts,
He has 5 days of Busulphan then a 2 day break,
Then 4 days of Cyclophosphamide.
On friday he starts Anti thymocyte globulin (this is an anti rejection drug).
Then on the 25th Logan is given the cord blood, it arrives in the country on the 1st of July
from America.
The plan is: another day trip on the 21st of June so Logan can have more blood tests,
(they took 6 tubes), and have a lung function test.
6th July we go back to Starship for a clinic appointment
7th July Logan goes into theatre to have his hickman line inserted
8th back in to have his line checked, during this time we stay at Ronald McDonald House.
Monday 11th we move to the hospital and chemo starts,
He has 5 days of Busulphan then a 2 day break,
Then 4 days of Cyclophosphamide.
On friday he starts Anti thymocyte globulin (this is an anti rejection drug).
Then on the 25th Logan is given the cord blood, it arrives in the country on the 1st of July
from America.
Wednesday, 27 April 2011
Another trip to Auckland
Sunday the 17th of April saw Logan and myself fly to Auckland, Logan had an appointment at Starship on monday morning. Monday afternoon he went into theatre for another bonemarrow aspirate and trephine. So now we wait, again. Blood tests showed his neutrophils are trending down, which I am told is a concern. He also has to have a blood test fortnightly instead of monthly now. Next week we should have the results.
Monday, 31 January 2011
Small steps
On the 20th of January we received a phone call from Auckland to say treatment wont be starting the following week. Logan has trisomy 8 and trisomy 15 which means he has extra copies of those two chromosomes. One of those extra chromosomes didnt show up in the second bone marrow aspirate so now he has to have a third one in April to see what is happening. The specialist said we need to take small steps.
One good thing is, he can carry on hunting and fishing.
One good thing is, he can carry on hunting and fishing.
Friday, 14 January 2011
Logans favourite things to do
These are some of Logans favourite things to do. (Click on any photo to enlarge)
Paua diving in Kaikoura.Caught, cooked and eaten all in one day doesn't get any better.
Logan with the catch of the day a 9.95kg albacore tuna caught at a secret spot off Napier.
Scallop diving at Mercury Island, Coromandel. Logans very first open water scuba dive.
Pheasant shooting at Gwavas Forest with his mate Tess.
After a year of tests which include bone marrow aspirations, trephine biopsy and monthly bloods, we now have a treatment start date for his myelodysplasia. Logan being the only child with it in the country at present. Treatment involves chemotherapy and a stem cell transplant.
We have to be at Starship on the 26th of January for a clinic appointment and on the 27th he goes into theatre to have a hickman line inserted.This is where all the drugs will be adminstered and bloods taken during the course of the treatment which begins roughly the 31st of January.
The donor was supposed to be cord blood from Slovakia, but is now cord blood from America, the Haematologist feels this is the best option for Logan.
All the above activities will be put on hold untill after treatment and recovery.
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