12th Jan 2009 Monday
This was our first week without surgery. Might have celebrated if we had not needed to put in an IV anyway for a couple of the chemo drugs. It was a long day at the hospital.
We are now nearing the end of phase one. He has the last dose of the "dex" steroid tomorrow morning (which is increasing his hunger and bad mood), and Friday will be the last leg injection (for this phase anyway). We end the phase on Monday, then nothing more until the surgery to install the port. They will also do the LP and BA at the same time.
We have no idea what we will have to do in the next phase so we are going to make the most of the small break. The lull before the storm.
In other news: Jake's counts are all up so he is responding really well to treatment, and with only a Monday appointment next week we will be able to get out and do stuff (e.g. go to the park, visit cousins and friends).
Thanks heaps to everyone for all your help. We really appreciate it.
13th Jan 2009 Tuesday
I got a call from Jake's coordinator. His surgery has been booked for Jan 30th. It's going to be an all day procedure. A bed has been booked for him in case he needs it.
They will be installing a tube into one of the main veins of his heart, that runs up to his neck then down outside the ribs to end in an access port sutured in place under his skin. This is so that we don't have to jab him in the hands anymore and run the risk of collapsing those veins.
They will also do a lumbar puncture (LP), and a bone marrow biopsy (BA). He will be sore for a couple of days.
We will be meeting the coordinator next Monday to talk about the next phase of his treatment, so we'll have more to write then.
20th Jan 2009 Tuesday
The phase is almost finished, and for the next two weeks at least Jake is down to only one oral medicine which he only takes three days of the week. We are enjoying his laughter again which has been missed, so he is almost back to his old self for now.
We met with his doctor yesterday. She gave us a hint as to what will come up after the surgery, and yes it really is the lull before the storm. The aim of the "consolidation phase" is to kill any leukemia cells remaining after the "induction phase".
The format for the first week will be to start with an all day chemo session in the hospital, followed by 3 days of us giving him an injection at home. The following week is the same, then we get a week off. Then the sequence repeats, giving a total of 6 weeks. There will be a couple of lumbar punctures in there as well.
As yet we don't know when the doctor will ask us to come in to get tissue typed, but will write it up as soon as I know more on that front.
Apart from that Jake is looking forward to spending some time with friends and cousins, so we will try to see as many people these two weeks as we can.