25th May 2009 Monday
We saw Dr Tiedemann for the first time in ages. We were informed that Jake would have to stay in the hospital Tue and Wed nights for his chemo. We then went to Day Oncology and he had Vincristine and Douno. Everything went well and we went home to pack for the next day.
26th - 28th May 2009 Tuesday - Thursday
We arrived ready at 1pm and they admitted us straight away and the ward nurses gave him the chemo. All went well.
On the Thursday before we left he was scheduled to have Asparaginase (Erwinia), which means that he will have to have 6 injections over 12 days.
1st Jun 2009 Monday
We arrived for the usual routine - finger prick, wait for an hour, then see the doctor (not our doctor though). They signed off and he had the Erwinia. We waited the 2 hours and the nurse said there were no problems so we could leave. I packed everything up, we were walking out, and I stopped to ask what time we should be here on Wednesday.
The nurse asked to see the injection site so Jake let her see. She was not happy with it and asked to look again with a proper light. She thought it looked too pink, so she called the doc and by the time the doc came the area around the band aid was really pink.
We had to wait a further 2 hours to make sure that he did not react further, and they put on his record that he had a reaction which meant that he is now not allowed to get any Asparaginase at all as he has had a reaction to all of the three different types available.
On the plus side, this freed up the rest of the week so we could stay home until the following Monday! I wonder what we can do.
Bibi
4th Jun 2009 Thursday
Jake went into Emergency last night with a fever (39.5) - very similar to the last time he was admitted with an infection. His neutrophil count was 6 on Monday, and last night it had crashed to 0.1. He didn't continue his Asparaginase treatment from Monday because he reacted, so maybe that contributed (as Asparaginase is designed to starve the leukaemic cells).
This time around the Panadol didn't help reduce his temperature - but thankfully the Nurofen did. He has very low blood pressure, so he's on Dobutamine to try to increase it (by constricting the blood vessels). Last time they used the port to administer it which was very bad as it's not supposed to go directly into his heart, so this time they put a line into his arm. The ICU doc who put the line in was extremely good - they didn't have time to put the Angel cream on so he did it without anaesthetic and got it right first try.
The Oncology doctors are all in conferences, and Jake's specialist is in the USA.
Hopefully they will be moved up to Oncology today, but because he's so neutropaenic he needs a single room so they have to reshuffle the already-full ward on the 6th floor to accomodate him. There are a lot of people in Emergency in face masks, but they're only putting them on the people with symptoms so the staff don't have them (and neither do I when I walk in and out).
Jake is just really tired, both because he didn't get much sleep last night and because he's still running a fever of over 40 which makes him lethargic.
We expect him to be in for 10 days - 2 to grow cultures from his blood to discover what the infection is, and 10 for the course of antibiotics. If it turns out to be the same infection as last time, which was in his central line, they will probably want to remove his port until he's well over it, which means another surgery. Then another to replace the port, and hopefully not with a Hickman.
Doug
5th Jun 2009 Thursday
The bacteria they grew from Jake's cultures was the same again (Sudamonus) so they did not waste any time and immediately ordered the port and central line removed. They said they will go in through the same cut as last time to remove it, so they dont have to cut his neck again and will just pull the line and it should all come out together. Jake was exhausted and slept for hours after the operation.
6th Jun 2009 Friday
As they cannot seal the end before the run it through the old cut then some of the virus in the line came out. So he developed another fever. They began the antibiotics again as of today so two weeks. So we have to go to the peripheral line put in while we were in emergency.
7th Jun 2009 Saturday
The line developed a clot so they had to remove it and put a new line in. Jake was not happy.
10th Jun 2009 Wednesday
The line stopped working. He was screaming everytime they tried to push fluid in it so they had to remove it. After consulting the doc they have decided to leave the IV for tonight as he is going to have an LP tomorrow so they will do it while he is asleep. He was amazed that he was not attached and was able to sleep great as they did not need to disturb us!
11th Jun 2009 Thursday
They had to use the gas mask for the LP which was hard for everyone especially Jake. He had to be restrained. He cicked a nurse in the groin and yanked the gas tubes twice. He was not happy at all as he went in. As always it all went well and I was there before he woke. As espected he awoke crying and hitting out. He then started complaining about the taste in his mouth (caused by the gas anesthetic). Took hours cos everything he tried did not take the taste away.
They needed to place a pripheral line while in surgery but they had trouble finding a vein in the wrists so they had to put one in his foot. I think I jinxed him as I asked the nurse on the way down what the likelyhood of it being put in the foot and she said it was very rare and they only did it to babies. All you had to do is take one look at Jakes wrists to see that they had tried his wrists a couple of times before putting it on the foot.
We were then discharged with a nurse organised to come see us to administer the antibiotics at home.
12th - 16th Jun 2009 Friday - Tuesday
The nurse came to our house and gave Jake his antibiotics intravenously through the line in his foot. It ran over half an hour, and sometimes it had to be slowed as the vein in the foot is smaller so high pressure fluids hurt him. Kai was home and he was very fascinated with what was happening to Jake, though as Kai's such a little socialite he always recruited the nurse to play with him or talk to him about the movie they were watching.
17th June 2009 Wednesday
We went into the hospital to have a finger prick and check the dressing on his foot. The doctors decided to stop the IV antibiotics so we were free for the rest of the week. We did not have to return until monday when we have an appointment with Doctor Tiedemann, so we organised at the last minute for people to come around to our place so that we could celebrate Kai's birthday (as we could not be sure that we would be home the following weekend).
20th June 2009 Saturday
We had great weather for Kai's party and everyone had a good time. We would like to thank those who made the drive out for it, though unfortunately there were a lot who couldn't make it - both due to the flu season and the late notice. Thank you all.
22nd June 2009 Monday
We had an appointment with the doc, who gave the all clear for the next phase of his treatment. I then took Jake down to the Starlight room, which is on level one and has a big projection screen, activity tables and all the game stations. It even has a stage. I let him sit there for a while playing The Incredibles on the PS2, which he liked a lot.
23rd June 2009 Tuesday
This day was about Kai but I am mentioning it because Jake thought it was amazing that Kai was going to the hospital and not him. Jake waved us good bye and went to play with Tony on the XBox. Jake was so excited at being able to stay home, and Kai was so excited to be able to go out with me.
Kai had his two year old check of the kidney that was slightly abnormal when he was born, and it was fine. We had heaps of time to play in the playground in between appointments, and then I took him to Sunbury and we had lunch and I spent some good time with him.
Dianne then took Kai home with her that night. It was sad to see him go.
Bibi