2nd Feb 2009 Monday
There was a change to the schedule: Consolidation is now going to go for 8 weeks instead of six. The second phase begins today with an all day stay at the Day Oncology ward on level 6.
We arrived with plenty of time, and because we were going to be there the whole day we got to choose one of the beds to use (though next time we will not, as I felt bad because Jake never slept and there were several kids through the day who needed the bed more). The day started with the nurse, Misty, asking Jake to show her his "magic button" (port), which after some giggles he was happy to show her. She placed some angel cream (ANalgesic GEL - a local anesthetic) on it and left us to give it time to take effect.
When the time came, I tried all I could to make it fun and we sang "we are going on a bear hunt" as we entered the dreaded procedure room (which he thought was rather silly). I had to restrain him on my lap while they plugged into the port to start the transfusion of saline solution, needed to get him going to the toilet. Then it was two hours for the chemo, half hour for the anti nausea medicine, and finally 4 hours of flushing his system with more saline solution. Misty said that if any of the chemo was left in his kidneys it would irritate them and possibly cause them to start bleeding.
At lunch time I went to the kitchen to get something for Jake to eat, and when I came back Misty pulled me aside and told me how she was so thrilled that Jake had laughed and showed her the movie he was watching. She was so happy that he had no resentment towards her and that he was able to laugh and joke with her. If you know Jake you will be familiar with his contagious laugh and great personality. It was nice to have her see who he really was, not what the sickness and treatment had made of him.
The injections for this part needed to be into the fat on either leg or belly (subcutaneous), and at the same time each day, so I chose 18:30 so that Doug could be home in time to help me. We waited for Doug to get to the hospital so that he could listen to the instructions, but he did not make it in time, so once again I had to restrain Jake while they inserted the butterfly (cannula - a small plastic tube) into his leg, which was not fun. Then the injection went in, and they gave me extra gloves and wipes so that I could do the next three days at home.
I picked up this round of medicine and we went home.
Rest of the week
I spoke to Jake before the injection to allow him to choose where in the house he wanted and what he needed to hold to feel safe. He chose the toy room in Daddy's lap, so that's where I administered the injections. I later asked whether it hurt, and he said no! He could not tell us why he was crying so I can only assume that its because its something that requires us to restrain him. In his mind anything that requires that he stay still is going to be painful!
We have to do it all again next week (except the all day one - that's only once a month). They gave us the option of having a district nurse come and do it, but we decided to give it a go ourselves. There are enough new people being introduced to him already.
9th Feb 2009 Monday
This morning the district nurse came over to do a finger prick on Jake so that we could get a blood count to check that he was ready for the operation tomorrow: another lumbar puncture, a dose of chemo straight to the spinal fluid and a bone biopsy. We will see what happens.
10th Feb 2009 Tuesday
(written on the 24th Feb - so I forget exactly how it went)
The blood taken yesterday for the test clotted, so we had to arrive early to get it done again before the LP at 9:30.
We tried to use a new tactic with regard to the surgery. Jake was given a medicine to cam him down before he went in, but he spat half of it out. Fortunately he was tired enough that he fell asleep anyway, but the second he felt the gas mask in his face he woke up and it took 3 of us to hold him down so that the anesthetic could do its work. I ended up breathing in a bit of it so I felt light headed for a little while, which sort of made the struggle easy ;)
Apart from that the rest of the day went well.
I learned that we should have been tissue typed before he started this phase, so we will do it next week.
17th Feb 2009 Tuesday
(written on the 24th Feb - this one will take a while to forget)
We all got to the hospital on time. Dianne met me there to help me with Kai, and she would then take Kai home so they did not have to hang around all day. We picked up the blood cards for Doug and myself. Doug went down while we did Jake's pin prick to make sure his counts were good for the surgery, then when Doug came back I went and got mine done. Kai was given a sedative to get him nice and loose for the ordeal ahead.
I went to level 2, where Jake was going to get his LP, and Doug went home. I was worried that I was going to miss being there for Kai because they were running late. Jake went in and this time we were prepared for it. I held him tight and they turned up the gas to full so that it would be quicker - which it was. I then told Carla the nurse that I would be upstairs with Kai who was on level 6.
I got there just in time and went in with Kai to get the blood taken out. They stabbed him once (he was fine) but he did not bleed. They tried again (he was fine) but he did not bleed for them. They tried a third time he noticed they were doing something, and on the fourth try they were getting some blood, but by now he was upset and started to struggle, so the cannula came out. The doctor got called out so we had to abort, and the nurse put Angel cream on both his feet and an elbow just in case.
We went to sit down and I was consoling Kai when I get the message that Jake had woken up. I was expecting a call on my mobile but nothing. Why did they not call me! (I am still not happy about that!) By the time I got to recovery Jake had woken up and was screaming and, by the look in his eyes, petrified!
Just a quick aside at this point. They have a policy that the parent stay with the child so that they are the last thing they see before going under, then they will call the parent in when the child begins to stir in recovery, so that they see a familiar face as the first thing when they wake. Another little fact about children is, whatever the child feels before going to sleep they will continue when they wake up - meaning if they go under kicking and screaming then they will wake up kicking and screaming. For them time stands still.
So it took me a while to calm Jake down. I told them that I was needed on the 6th floor and they let me take Jake early. I came back up to the 6th floor and decided to deal with Kai first before going to see the doctor. Due to stuff happening, Kai was fully awake by the time his time came to take the bloods out. He had also had a reaction to the cream, but only on the arm!
I left Jake with Dianne and took Kai into The Room! He was not happy. I could not look but Kai could not look anywhere else. They decided to use his foot this time. He kept crying "No! No!" and trying to ask me to put his shoe back on. The play lady (I forget her actual title) was just not working because Kai did not want to have anything to do with her or the process. He was busy telling the nurses to stop! I help him tight and he started screaming. When it was finally over i looked back, and I almost wish I had not. There was blood everywhere. The doc's gloves, the chair arm, even spectacles, and Kai's foot was still dripping. All he was thinking about was getting his shoe back on.
They cleaned as best they could and I held the bandage so that he would stop bleeding. He clung to me every time the nurse came anywhere near us, but for Kai it was over. Dianne asked if he wanted to go home and he was ecstatic. I said goodbye and he just could not get out of the hospital fast enough.
I then took Jake to see the doc, then realized that I hadn't given Dianne my keys, so when I got her call I agreed that she should take Kai to wheelers hill.
Because we didn't make our appointment time, and our doc was SO busy, we had to see another doc which Jake did not like. He just stared at him and got that blank look on his face. It was interesting because the doctor praised him on how well he was behaving, and all I could see was a child who had withdrawn.
We then came back to Day Oncology to await his chemo. Today he was to get the Vincristine and the PEG Asparaginase. There was a small bit of info that I had misunderstood. The PEG was stronger so we did not have to come back every second day, but its also TWO injections, given simultaneously, one on each leg!
The Vincristine and the blood collection was fine (he needed twice the amount taken: one taken during the LP was for making sure it was him, and the second was for tissue typing). They went in through his port - the "magic button". He was absolutely fine with that.
The big change came when we had to take his pants off - he immediately started getting restless. Another nurse came in, so there were one on each side while I held him down. They counted down and then both at the same time: BANG! I can honestly tell you that I started shaking. Jake's scream was so heart wrenching that even the nurses teared up. I had a huge amount of trouble controlling my emotions. He then clung to me harder than he ever has and I tried my best to calm him down.
They then said that we had to stay for 2 hours in case he had a reaction. After an hour I noticed that on the board in the nurses station (which they use to keep track of when things were done) it said we would not leave till 6pm (which was still 4 hours away). I asked, and sure enough we would be in until 6pm. I told Doug and got him to meet us at the hospital after work. I was emotionally and physically drained and did not think I should drive home. Jake fell asleep at about 5pm and then slept all night. I was surprised because we put him in the car, took him out, and changed his nappy and he did not stir once!
I can honestly tell you this was the worst day I have ever had.
24th Feb 2009 Tuesday
(always expect the unexpected)
Today started as a normal day. I came in to the hospital with Jake, Doug went to work, and Dianne was going to take Kai to Wheelers Hill. I thought maybe I should call her and tell her to leave him with me at the hospital. It was just going to be an easy day, and I felt bad about leaving Kai. I am now glad that I didn't, sitting here in Day Oncology: it is 5:15pm and we will not be leaving until at least 7:30. So much for an easy day!
It all started when the nurses gave Jake 2 pinprick tests to try and get some blood to run a count. The blood they took kept clotting, so they got someone from pathology to come and do it. She pricked him twice in the same finger to try and get it to bleed faster. No shock there (that clotted too) so he had the Angel cream put on and we went to see the doctor. She was not happy with the way he looked, and the cough he had, so she postponed the lumbar puncture for next week. She also wanted us to stick around after the Vincristine as she thought Jake would most likely need a blood transfusion.
We placed the order for the chemo, and some antibiotics for his cold, and went back to Day Oncology. We arrived just after a child had a reaction to some drug, and had to be treated on the spot (with an adrenaline syringe), so Day Oncology was cleared out while they helped this child. He was taken down to ICU an hour later. It was easy to see how this effected everyone else: all the parents grabbed their own child and gave them a big hug. It's tough to be reminded of what could possibly happen to your own child.
We had to put the cannula in Jake, which was difficult since this usually happens when he is unconscious.
We sat around for an hour or so, then I went up to the nurses station and asked what we were waiting for. They said he would need a transfusion, and were trying to contact his doctor to put the order through, so I put Jake in a bed (seeing as we would be here for the rest of the day) and went and got us some food from the kitchen. We had not eaten anything, as Jake has to fast before surgery.
I had a small scare when the doctor showed up in person - she thought they might need to put two units of blood in, so we would have to come back tomorrow to do the second one. Fortunately (or unfortunately - which ever way you choose to see it) there were no free beds in the ward, so we could not stay over night. The doctor then recalculated and decided we only needed one unit, which was good news. They started the transfusion at 3:45pm, so we will leave in 4 hours. Jake fell asleep so I thought I should update the blog.
...
They will do the transfusion, then they will run a flush through the lines, so another 2 hours starting at 5:30pm.
Next week we have a full day of chemo, plus a lumbar puncture first thing in the morning. I'm not sure which I prefer more - a couple of hours every second day, or one full day a week!