Great news again, Luke is still in remission. It is a very uplifting to know that after 3 cycles of chemo he is still keeping this disease at bay. It's hard to imagine that this all started 6 months ago. After having our world turned upside down, we have all had to adapt and I can truly say we have now settled into our new life of juggling hospital visits, work and life in general. Luke's still got a lot ahead of him. The next 6 months of intensive chemo are going to knock him around, he'll have good days and bad days.
Luke started chemo yesterday. He had a lumbar puncture under x-ray. he also has Methotrexate injected into his spinal fluid at the same time to kill any traces in the spine going to the brain. We had a 10am appointment and as often is the norm, things were running late. So he didn't go down to x-ray till 12. He then should lie on his back for 4 hours after the procedure but he generally feels okay and we left after about 3 hours. During his time waiting on his back he had his other 2 chemos for the day via the central line, Vincristine and Doxorubicin.
He's back on steroids for this cycle, Dexamethasone. This is a different steroid from the one he took during his first cycle. So it will be interesting to see if he gets the moon face and the outrageous appetite he did before! The other chemo drug he will have this cycle is L-Asparaginase. This is the one in the backside that he says feels like an extremely painful bee sting.
He's feeling a bit yuck today. He always does when he starts back on chemo after having a nice break.
I'll update you probably in a few weeks unless there is something else to tell in the meantime.
Thursday 22nd July 2010
Okay - I know it's been an awfully long time between blogs. That's because we've all been in such a good place at the moment. Luke finished his interim maintenance chemo on the 10th July. This cycle was really kind to him. He was not neutropenic at all and his blood levels didn't drop under levels that required any red blood transfusions or platelets. He did need some blood products, anti thrombin III (this stops clots going to the brain) and cryoprecipitate (to stop bleeding).
We had a few funny situations when Luke was on increased levels of Methotrexate via the IV. To keep your kidneys working properly and to flush out the toxic waste, you are given some folinic acid tablets that need to be taken every 6 hours. I left it to Luke to set his alarm to remind him when his tablets were due. He took his 7am dose correctly, then his 1pm was taken at 2.30pm. When the tablet was due at 7pm, Luke sheepishly came out at 9.30pm and said he'd forgotten to take it. I got really cranky and called the hospital to make sure all would be okay. They said it was fine but to take the next one at 1.30am. So after testing his alarm on the phone several times we all went to bed. I was awoken by Luke at 6am in a panic saying he hadn't taken his tablet at 1.30am!!! I was livid, telling him off and saying I couldn't do everything for him all the time - that he had to take responsibility for these things some time. He took a tablet then. When we were able to call OOS, they laughed and said to come in with the tablets and they'd test his levels to make sure all the methotrexate was out of his system. As Luke and I were about to get into the lift at the hospital, he turned to me and said "wouldn't it be funny if I actually did wake up at 1.30am and took the tablet and didn't remember". He then asked if I had checked how many pills were left in the bottle. We were prescribed 8 tablets and there were 3 left and we had accounted for 4 doses that we knew he had taken.
SO sure enough, Luke HAD woken to the alarm, got out of bed to get the tablet and water then went straight back to bed and didn't remember a thing!!!!!!
Luckily for him all of the blood tests came back fine and his mucking up of times didn't affect anything. We certainly had a good laugh over that one.
Luke has certainly been making the most of feeling well. He's been out with friends quite a bit. Talk about big kids - they have all bought nerf guns (plastic toy guns that shoot out foam bullets) and they've been running around shooting each other at night with LED lights on their guns!!!! Luke has been working on Math's work while school holidays have been on and he's just about finished Term 1's work. He seems to be coping quite well with it. We had a parent/teacher night at the college last night. It was good for Luke to catch up with teachers and see what the plan of attack is for this semester. Luke has been taking driving lessons with an instructor with the hope that in the next few weeks he can get his driver's licence and be able to drive himself around whenever he wants! That's a bit scary but he'll enjoy driving his pride and joy.
Amy had a very quiet and lazy school holidays, spending quite a few days in PJ's.
We went to see the latest Twilight movie and her Aunty said she had the books. Amy hates reading however she has not been able to put these books down. She read the first book in 2 days - which is amazing for her. Amy just called me excited that she finally managed to get an elective subject she wanted to do. She was originally put into Advanced Science (which really is not her cup of tea) and she has now gotten into Media and Photography.
I took some flex time off work for the holidays. As we won't be spending money on any holidays in a hurry, we have decided to renovate our kitchen. So much of my time off was spent researching various things. We are going to get some quotes/designs done in the next few weeks and hopefully during the next holidays in Sep/Oct get the kitchen put in. Luke will have just finished the next chemo cycle so it should be good timing. We will also need to replace the flooring throughout the kitchen/family rooms so it will mean time off for Murray and I while we do the floor and painting walls etc.
Luke had a bone marrow biopsy yesterday to see if he is still in remission. We won't know the results till next week. He will then start chemo next Wednesday 28th July. This cycle is called Delayed Intensification. It basically takes us back to the beginning with 4 weeks of reinduction and 4 weeks of reconsolidation. So unfortunately knowing what those cycles were like it is going to be much more intensive than this last cycle and his blood levels will definitely drop. So we are all making the most of the good times we are having at the moment.
We had a few funny situations when Luke was on increased levels of Methotrexate via the IV. To keep your kidneys working properly and to flush out the toxic waste, you are given some folinic acid tablets that need to be taken every 6 hours. I left it to Luke to set his alarm to remind him when his tablets were due. He took his 7am dose correctly, then his 1pm was taken at 2.30pm. When the tablet was due at 7pm, Luke sheepishly came out at 9.30pm and said he'd forgotten to take it. I got really cranky and called the hospital to make sure all would be okay. They said it was fine but to take the next one at 1.30am. So after testing his alarm on the phone several times we all went to bed. I was awoken by Luke at 6am in a panic saying he hadn't taken his tablet at 1.30am!!! I was livid, telling him off and saying I couldn't do everything for him all the time - that he had to take responsibility for these things some time. He took a tablet then. When we were able to call OOS, they laughed and said to come in with the tablets and they'd test his levels to make sure all the methotrexate was out of his system. As Luke and I were about to get into the lift at the hospital, he turned to me and said "wouldn't it be funny if I actually did wake up at 1.30am and took the tablet and didn't remember". He then asked if I had checked how many pills were left in the bottle. We were prescribed 8 tablets and there were 3 left and we had accounted for 4 doses that we knew he had taken.
SO sure enough, Luke HAD woken to the alarm, got out of bed to get the tablet and water then went straight back to bed and didn't remember a thing!!!!!!
Luckily for him all of the blood tests came back fine and his mucking up of times didn't affect anything. We certainly had a good laugh over that one.
Luke has certainly been making the most of feeling well. He's been out with friends quite a bit. Talk about big kids - they have all bought nerf guns (plastic toy guns that shoot out foam bullets) and they've been running around shooting each other at night with LED lights on their guns!!!! Luke has been working on Math's work while school holidays have been on and he's just about finished Term 1's work. He seems to be coping quite well with it. We had a parent/teacher night at the college last night. It was good for Luke to catch up with teachers and see what the plan of attack is for this semester. Luke has been taking driving lessons with an instructor with the hope that in the next few weeks he can get his driver's licence and be able to drive himself around whenever he wants! That's a bit scary but he'll enjoy driving his pride and joy.
Amy had a very quiet and lazy school holidays, spending quite a few days in PJ's.
We went to see the latest Twilight movie and her Aunty said she had the books. Amy hates reading however she has not been able to put these books down. She read the first book in 2 days - which is amazing for her. Amy just called me excited that she finally managed to get an elective subject she wanted to do. She was originally put into Advanced Science (which really is not her cup of tea) and she has now gotten into Media and Photography.
I took some flex time off work for the holidays. As we won't be spending money on any holidays in a hurry, we have decided to renovate our kitchen. So much of my time off was spent researching various things. We are going to get some quotes/designs done in the next few weeks and hopefully during the next holidays in Sep/Oct get the kitchen put in. Luke will have just finished the next chemo cycle so it should be good timing. We will also need to replace the flooring throughout the kitchen/family rooms so it will mean time off for Murray and I while we do the floor and painting walls etc.
Luke had a bone marrow biopsy yesterday to see if he is still in remission. We won't know the results till next week. He will then start chemo next Wednesday 28th July. This cycle is called Delayed Intensification. It basically takes us back to the beginning with 4 weeks of reinduction and 4 weeks of reconsolidation. So unfortunately knowing what those cycles were like it is going to be much more intensive than this last cycle and his blood levels will definitely drop. So we are all making the most of the good times we are having at the moment.
Subscribe to:
Posts (Atom)
