24th June 2009 Wednesday
Today we came into the hospital early to have the Hickmann inserted, and do a lumbar puncture while he's under anaesthetic. When Jake woke up he was unhappy, as once again we had to administer the general anaesthetic through the mask, but this time when I showed him the Hickmann he was really happy and it helped to get his mind off the bad taste in his mouth.
He was happy because it means that they no longer need to put needles in him to access the port, as the tubes are on the outside and ready to go so they just need to be attached.
We were then admitted after the surgery so that he could get hydration for the chemo to start tomorrow.
25th - 28th June 2009 Thursday - Sunday
They started the Methatrexate at 2pm and ran it for 24 hours. He then received 6 hourly doses of Folinic acid (an antidote to the methotrexate), and we were able to go home at 2pm on sunday afternoon.
Good news.
The Bone Marrow Transplant (BMT) coordinator, Aimee, came to see me during our last admission and informed us that Jake is going to get bumped up the list! It turns out that one of the other patients is not going to be well enough to have his radiation so Jake has been slotted into his spot. This means we will be going into the bubble at the end of July!
Aimee gave me a form with all the appointments for the tests he requires in preparation, and we will be having our BMT talk with Doctor Tiedemann on Tuesday.
30th June 2009 Tuesday
BMT meeting.
Dianne brought Kai back last night and stayed at our place so she could look after both our boys while we were talking to the doctor.
We arrived on time for our appointment but we did not see her until an hour and a half later. She was waiting for Jake's blood count to come back, and we were told not to bring him in today, so she was disappointed that he wasn't there. A bit of confusion.
They did not find a donor match, but they are going to use cord blood instead. Doctor Tiedemann explained that the reason they want to do the BMT now is that Jake is currently in remission but that there is a high chance that he could relapse, and if they do the BMT now then the chance of relapse is greatly reduced.
Prior to the procedure they will perform lots of tests to make sure he is still in remission, that his heart is working fine, that the Hickman is where it is supposed to be, and that his teeth are all in good shape (as he won't be able to have any dental work for a long time).
We will have a introduction day at the Peter MacCallum hospital on the 8th July to show us around, explain things, and introduce the place and the therapy to Jake to see how he reacts and whether he'll need to be sedated to keep him still enough during the radiation.
The transplant preparation will start on the 20th of July. We will get admitted to Peter Mac in the evening and he will receive 3 days of radiation - two sessions per day of about 45 minutes each. Unfortunately I will not be able to be in the room with him as it's too dangerous, so this is the first time (apart from when he's been under anaesthetic) that he will be alone for a treatment. He has to be very still for that time so his whole body stays within the radiation beam, so we are hoping to distract him with DVDs and maybe some meditation music. If he can't stay still they will have to sedate him, but hopefully only with a light medication as that many general anaesthetics will be hard on his body.
We will then be transferred via ambulance to the bubble (transplant suite) on the 6th floor, and they will administer a high dose of chemotherapy for 4 days. For this they will be pumping a lot of fluids into him so that his body flushes the stuff out and does not cause any kidney or liver irritations. They will also fit him with a catheter for this period. He will then have a day of rest, and the bone marrow will be administered intravenously on the following day.
It will probably be between 4 and 5 weeks before we can go home. He has to have recovering neutrophil counts, no diarrhoea and no temperature.
It will be a couple of months before we can start socialising, and even then only with close family. The doctor said he could probably start school in April 2010.
There are many possible short term side effects of the treatments: mouth ulcers (which will mean a nasogastric tube - for feeding down the nose), vomiting, fevers, skin sensitivity (requiring 6 hourly wash downs) and more. The likely long term side effects will be sterility, slightly lower IQ (than he would have had), slightly stunted growth and the possibility of growing a cancer in later life - most likely in his thyroid gland.
1st - 5th July 2009 Wednesday - Sunday
Jake had mouth ulcers which swelled his mouth and cheeks. I rang the hospital on Wednesday night to check if this was a bad thing, and they told me that they are a side effect of the Methotrexate. On Friday when we went in for a finger prick to check his blood counts, they gave me some anaesthetic for his mouth and some Coedine for the pain. Next time we have to check him more carefully and use more preventative measures to make sure it does not happen again.
6th July 2009 Monday
We arrived at the hospital early to get his blood tests done. The forms said that pathology needed 20 mls of blood, so the nurse rang to confirm it because they were worried about the large amount of blood they had to take. There were tests to check his liver function, cell counts, kidney function, confirm his blood type (as it can change from all his transfusions) and more.
We saw Dr Tiedemann, and she was happy with Jake's current health.
We went to the 3rd floor where they did an ECHO and a ECG (for heart function), then down to the second for a chest x-ray to check the exact position of his Hickman.
8th July 2009 Wednesday
We went to Peter Mac today for our orientation session. We will have our own room, which will be nice because they look out on to the park. We also found out that they will get a special paediatric nurse to come from the RCH to look after us, as Peter Mac is not a childrens hospital. We could not go into the radiotherapy room as they were both busy, but we were given a DVD to see what it looked like and to show us a little boy about Jake's age going through total body irradiation.
We went to get a CT scan to find out how thick his body is in different places so that they can arrange and buffer his body so that he gets the same amount of radiation all over, and Jake was quite scared of the machine (or sick of the place - difficult to tell) so it took a lot of effort to get him to lie still and go through the donut. This also was too dangerous for us to stay in the room with him.
We had lunch at Nandos and then went to the RCH to get admitted. We sat in day oncology for a little bit as he needed a finger prick to check his counts. The doc wanted to make sure his counts were good, as any ill health could affect our start date (currently the 20th).
His counts came back fine but the ward was full so we went for a walk and then came back at about 7pm. He was connected and his fluids were started.
9th - 12th July 2009 Thursday - Sunday
He had a lumbar puncture with a bone marrow aspirate (biopsy) to make sure he is still in remission, and a small dose of chemo into the spinal cord. This went without incident.
The methotrexate started at 3pm, runs for 24 hours, then there is 48 hours of antidote, so if all goes well we should be able to leave at 3pm on sunday.
11th July 2009 Saturday
Jake had his first dentist appointment ever today. The dentist looked in his mouth and counted his teeth, and she said they all looked really well. She also told me that if he stopped using his dummy by the age of five his teeth will be fine - at the moment they don't meet at the front so he has trouble biting food into pieces.
She gave him a toothbrush and he asked her where the buttons were on it. It didn't have any - how primitive. He was not impressed.