2nd March 2009 Monday
It started as expected: we went in early so that he could have a blood test, and then we would see the doc. This time we went straight to the pathology lady, and I then took Jake down to the cafe where we had breakfast and let him have fun in the park for a little bit. I then remembered we could get the butterfly put in (the cannula for the injections at home) so we went to Day Oncology.
Due to some miscommunication I missed my appointment and was put at the end of the morning list. The doc came out and informed me we would be after this, and said to go get the butterfly put in so we did. It all went fine and Jake just clung to me while they did it telling me he was "done". I just smiled at him and held him tighter.
We then went to wait for the doc. She informed me that Jake's counts were too low to have his chemo the following day, so she canceled the injections, the all day chemo and the LP on Thursday. She said they would do a blood test while he was getting the LP, and to wait around for the results to see if we could do the all day chemo on Friday. She did not want to delay the chemo too long.
The upshot was that we had to go back to Day Oncology to get the butterfly taken out, because we would not be needing it this week.
5th March 2009 Thursday
We arrived early to level 2 at the RCH to get Jakes LP done.
I was bracing myself for the inevitable heartbreaking fight over the mask, then we met a new anaesthesiologist (who was surprised that we had not met yet). I told her that he usually has his LP's on Tuesdays, and she said she works on Thursdays. She asked all the usual questions, and I told her about his past experiences. She suggested we go through the port!
I obviously looked surprised - I had no idea that they could do that. She said that Jake had been traumatised in those rooms, so they needed to get his trust back (I was all ears at this point). She suggested taking a new tack. They would give him a pre-med which would make him happy, put some gel on his port, and then when he went into the room they would put the anethetic through the port.
"Why not?", I said. He fought the Angel, but was fine with the pre-med. They told me to keep him on my lap because he would become all floppy. One thing they did not tell me was how fast it would work. He wanted to go to the toilet, so he bent down to pull his pants down and then hit his head on the basin because he over balanced. Wow. I then carried him, and slowly he got heavier. Its amazing how much a body weighs when the person has no control over their muscles. We sat, but he wanted to continue playing, so I told him he could play if he could walk to the other room!
I stood him up (with my hands under his arm pits) and he tried to walk, then he just stood there and stared at his feet. I picked him up and held him like a baby because he had some control to move, but not quite enough to coordinate. I looked at his face and he had this dazed goofy look. He was telling me that he was a pirate so I asked him, "What do pirates say?", and he just could not respond. He started swatting things in the air. Just as the ladies came to tell me they were ready for him, he was reaching as if he was trying to touch something (or someone).
We walked into the procedure room and I laid him down. He watched as they accessed his port and pushed some fluid through it. He kept trying to help and wanted to do it himself. They then pushed the anesthetic and he was out (with a smile on his face). I almost hugged the anaesthetists - I could not believe it. I walked out and went searching for Jake's dummy, went to look in the car, went to the cafe to get myself one of those "up and go" drinks, and then went back. I saw the anaesthetist and thanked her repeatedly. I also asked why that had not been suggested before, and she said different people have different ways.
I then sat down to wait for Jake to wake up. I was called in, and he was still asleep. If children have the pre-med they are more drowsy after, so they are harder to wake up. The nurse stays at their side from the second they get to recovery, and does not leave until she is happy that her patient is awake. I mentioned that it was a strange effect that the pre-med has on the kids. She said that she always wondered what it did to their brain, because she always sees them chatting and trying to touch things in the room.
Jake took an hour to wake up, and even then we had to wake him up. The nurse said that they left the cannula in the port so that when we came back tomorrow we did not have to access it again, and she also told me that the blood sample had once again clotted and that they would need to do it again upstairs. Bugger! Just our luck. Before we went up, the anaesthetists came to remind me what I need to do next time.
We went up to Day Oncology, and I was going to leave him in the playroom but he was still very wobbly. I sat him down and went to see the nurses and to hand over the records, then we went to get the blood sample taken out of his port. Afterwards, we sat and I tried to supervise him, but he insisted on moving around on his own even though he was not quite right yet.
After some time, I asked what the result of his blood test was, and the nurse went to check. They actually spoke to Jake's doctor and she said that his counts were still too low. I asked what was happening, and she said that we had to come in on Tuesday and have another blood test, then the doc would come and see him in between other patients.
So we get to stay home tomorrow, but I have to wonder: if she is going to see us without an appointment, how serious is this? We will find out next Tuesday.
10th March 2009 Tuesday
(written on the 26th)
We went in early so that Jake could get a blood test. Doctor Tiedemann gave her approval for the all day chemo to go ahead, so we were here all day. He did really well, so the day was uneventful. The way it should always be ;) The butterfly cannula was inserted into his leg, so we have to do another 4 injections at home this week.
17th March 2009 Tuesday
(written on the 26th)
Jake's doc was away for a holiday this week, so we saw someone else instead. Jake seems to have liked this man, because he was quiet and did everything the man said. (He actually let me do most of them on my own. He was so good.)
His counts are all recovering, so we got a go ahead for the chemo this week.
24th March 2009 Tuesday
(written on the 26th - I believe in angels)
Jake's doc is still away, so we had the same doc as last time.
Everything was going well. We got there at 8am for a 10:20am appointment with the doc. I got his finger prick done, and told them we would be down in the playground if the blood clotted. I jinxed myself. We had breakfast, and Jake was playing when I got the call. We went back up to level six and he got his finger prick done again. We went back to the playground to wait for the appointment.
We went to see the doc, who told me that his counts were doing really well, but unfortunately the tissue typing report (about possible family matches) has not arrived yet. We then went to get his chemo.
The Vincristine was ok (he is getting used to having his "magic button" accessed). The PEG, as always, was traumatic. It's painful to have to hold him for a double whammy - it can't be that nice to get jabbed in both legs. Last time he had the small bruises for a week.
We went back to the table and were about to keep playing, when I noticed that Jake was coughing. His face started breaking out in a rash, all over his forehead. I asked the nurse straight away if I could have a sick bag, becausehe was coughing a lot.
They immediately went into emergency mode, and we moved back into the procedure room. His eyes started to swell. The rash spread fast, but luckily (as one nurse put it) "his body started to heal itself" when they were going to give him the medicine, so he did not need adrenalin. He fell asleep on my lap and I carried him back to his bed and kept a close watch on him to make sure he would not get worse.
He slept for three hours, and the rash looked like it had all disappeared. I noticed he was waking up, so I stood by his bed, and while he was half asleep he looked at me. He then grabbed my arm, pulling me forward and whispering, "There is somone behind you. There is someone behind you." I turned and there was no one there.
I waited until he was fully awake, and asked him if the person was still there. He said no. I asked him to describe the person to me. He said it was a girl (though he was not completely sure after a while). He then touched my hair, and said that she had black hair. She was very pretty, and really bright. I asked him about her eye color, but he got stuck. He pointed to my eyes, and told me that I have black in the center, and brown on the outside. He then tried to say the same about the woman he had seen, but he could not, so I let it go.
Angel? I will leave it up to you, but I am convinced someone is looking after him, and it brings great peace to my heart. After the four hours, Jake seemed to have recovered so we went home.
We stopped to get a DVD on the way home, and Jake started coughing at the shop, so I took him outside. He was fine when we got home, but then I was on the phone with my mother when Doug came to me with a distressed look on his face and said "You have to take a look at Jake."
I hung up on Mum and we rang the hospital. They rang the ambulance, and after a painful wait, we came into Emergency. Once again, just as they were getting the adrenalin ready, Jake started healing himself. When we got to the hospital his rash was not as bad, but it was still there. They called (at home) the doctor we last saw, and he suggested that we be admitted for observation.
26th March 2009 Thursday
We are still here on the 26th. Jake keeps breaking out into what they are calling "hives and swelling", which starts off as a cough, so they want to keep us here until he stops blotching.
He started getting a runny nose and was coughing all last night. I mentioned it to the nurses so they took a sample of his snot and tested it to see if he was contagious. This also meant that they moved the child next to us to another room, and so we will have room to ourselves for the rest of our stay which hopefully will finish tomorrow.
Still no word on the tissue typing report.
31st March 2009 Tuesday
Today we saw the doc, got the results of the tissue typing, and Kai is not a match for Jake. I also asked if there would be any chance that anyone else in the family could be a match. She said that if Doug had been Colombian (for example) then testing Doug and my brothers would have been viable, so we have a better chance going to the list than checking family. If that does not produce a match, then we will go to the core blood bank, because in young children the matching process is more forgiving as they are still growing.
The new phase starts in second week of April. I'm not sure what its called yet, so I will have to wait until I get my road map to create the next web page.
Thank you and heaps of love to all from Jake, Kai, Doug and Bibi.
We really appreciate all the help.