Starships Theatre schedule was running behind on Thursday so it meant that Toby's Port-a-Cath insertion was delayed. We are not sure exactly when they will do it now, probably mid January which unfortunatley is a busy time for us, so bit of a bummer!
Toby still had a lumbar puncture and spinal chemo. That all went really well and we arrived home yesterday. We don't go back to Starship until the 29th December, but still have to go to Hastings Hospital for Toby to have his PICC line flushed, dressing changed and to have some blood tests, but I can cope with that much better than having to travel to Starship the week before Xmas!!
Saturday, 18 December 2010
Wednesday, 15 December 2010
Fuzz..............
Ohhh I forgot to say that Toby has finally had all his hair shaved off!!!!!! I kept putting it off, but it was getting so thin and malting so much that it was about time we did it.
Bevan cut it with his clippers and Toby sat there like such a big boy!!
I am happy to say that I love it - it looks so gorgeous and feels devine!! It's just like having my 4 month old baby boy back again :) He now has a couple of new nicknames - Fuzz, baldy and Pugsly (from the Adams Family!!!).
He still has a little bit of hair there, but the specialist said that a new drug he takes in the next stage will make that all fall out.
Bevan cut it with his clippers and Toby sat there like such a big boy!!
I am happy to say that I love it - it looks so gorgeous and feels devine!! It's just like having my 4 month old baby boy back again :) He now has a couple of new nicknames - Fuzz, baldy and Pugsly (from the Adams Family!!!).
He still has a little bit of hair there, but the specialist said that a new drug he takes in the next stage will make that all fall out.
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| Showing off his new hair cut |
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| Checking out CCF Auckland's Xmas Tree :) |
Bye Bye PICC Line!!
Yesterday, Bevan, Toby and I headed up to Auckland on the plane. As the plane was about to leave the runway Toby decided to have a coughing fit and did two HUGE vomits all over himself and the plane!!!!!!! It was so gross and I was so embarrassed. Luckily we had a lovely Air Hostess that helped us clean it up. The Specialist thinks all his vomiting lately (apart from when he had the Tummy Bug) is due to all the mucus in his tummy from the runny nose he has at the moment and a combination of the drugs he is taking. I can't wait till he can actually tell us he is about the vomit!!!!!!!!
Today we had another clinic appointment. Toby's blood results and lumbar puncture results from last week looked great. Much higher than expected!! We also discussed the next step. It's all very, very confusing with a whole new range of drugs he has to take and some treatment being done in Auckland and some in Hawkes Bay Hospital. Most weeks Toby has to have blood tests on a Tuesday in Hawkes Bay which will determine whether he goes to Auckland the next day for treatment - so it will be very hard to make plans and everything will be last minute (something I don't cope with well!!!!!). The good thing is that after tomorrow there wont be any more lumbar punctures for 6 weeks and we don't have to come back to Auckland next week - so will be home until the 29th December :)
Tomorrow Toby goes into Theatre for a lumbar puncture and chemo into the spine. He also has the PICC line removed from his arm and has a Port-a-Cath (or Port) put under the skin in his chest. The Port looks like a little bump under his skin and when he needs blood tests or medication, a needle can be inserted into the Port instead of him having to have an IV line. The Port will stay in for around 3 years until treatment is finished. He is able to have baths, showers and swim with it in, so much better than a PICC line especially over summer.
Next update will be on how his Port operation went. We are hoping to return to Hawkes Bay on Friday :)
Today we had another clinic appointment. Toby's blood results and lumbar puncture results from last week looked great. Much higher than expected!! We also discussed the next step. It's all very, very confusing with a whole new range of drugs he has to take and some treatment being done in Auckland and some in Hawkes Bay Hospital. Most weeks Toby has to have blood tests on a Tuesday in Hawkes Bay which will determine whether he goes to Auckland the next day for treatment - so it will be very hard to make plans and everything will be last minute (something I don't cope with well!!!!!). The good thing is that after tomorrow there wont be any more lumbar punctures for 6 weeks and we don't have to come back to Auckland next week - so will be home until the 29th December :)
Tomorrow Toby goes into Theatre for a lumbar puncture and chemo into the spine. He also has the PICC line removed from his arm and has a Port-a-Cath (or Port) put under the skin in his chest. The Port looks like a little bump under his skin and when he needs blood tests or medication, a needle can be inserted into the Port instead of him having to have an IV line. The Port will stay in for around 3 years until treatment is finished. He is able to have baths, showers and swim with it in, so much better than a PICC line especially over summer.
Next update will be on how his Port operation went. We are hoping to return to Hawkes Bay on Friday :)
Last week
Nothing much to report from last week.......
On Wednesday Yvonne (Bevan's Mum) and I headed to Auckland for a clinic visit which was short and sweet. Results all looked good and we didn't have anything much to discuss!!
On Thursday Toby had a lumber puncture and chemo into his spine. This all went well and we headed home in the afternoon.
Toby was finally coming right after being sick and we got lots of smiles and laughs out of him and he started to talk a little bit more, which was awesome :)
On Wednesday Yvonne (Bevan's Mum) and I headed to Auckland for a clinic visit which was short and sweet. Results all looked good and we didn't have anything much to discuss!!
On Thursday Toby had a lumber puncture and chemo into his spine. This all went well and we headed home in the afternoon.
Toby was finally coming right after being sick and we got lots of smiles and laughs out of him and he started to talk a little bit more, which was awesome :)
Sunday, 5 December 2010
How Toby is coping
Last week Toby was one miserable little boy having to deal with his illness together with a tummy bug and a very nasty croupy cough. He was so lifeless and because of his cough had lost his voice, so his weak, squeaky cry was heartbreaking to listen to.
Over the weekend Toby has started to come right and there have been lots more smiles and laughs. He is still pretty lifeless and not his usual full-on, cheeky self, but this is all to be expected and if it were me I’d be curled up in bed with my head under a pillow!!
He is very weary of anyone who comes near him as he thinks that everyone is about to stick needles or medicine in him!!
While he was taking the steroids, he gained 2kg but most of that has been lost since he got the tummy bug. He is still a bit round in the face though and his eyes are dark and sunken. His hair is hanging in there but over the last couple of weeks it has been falling out slowly - it looks like the cat has been sleeping on the back of his t-shirt at times!! We are debating whether to shave it off or not because he (and us) keep getting bits of it stuck in our mouths, but I’m very reluctant to do it until absolutely necessary.
Over the weekend Toby has started to come right and there have been lots more smiles and laughs. He is still pretty lifeless and not his usual full-on, cheeky self, but this is all to be expected and if it were me I’d be curled up in bed with my head under a pillow!!
He is very weary of anyone who comes near him as he thinks that everyone is about to stick needles or medicine in him!!
While he was taking the steroids, he gained 2kg but most of that has been lost since he got the tummy bug. He is still a bit round in the face though and his eyes are dark and sunken. His hair is hanging in there but over the last couple of weeks it has been falling out slowly - it looks like the cat has been sleeping on the back of his t-shirt at times!! We are debating whether to shave it off or not because he (and us) keep getting bits of it stuck in our mouths, but I’m very reluctant to do it until absolutely necessary.
Consolidation Therapy (or Intensification Therapy)
Toby is now into the Consolidation Therapy stage of treatment. We are not 100% sure what is involved until next week, but for the next 28 days he has to take 6-Mercaptopurine tablets (an immunosuppressive drug) every night and there will be lots more chemo, tests and trips to Hospital.
We are due to go back toAuckland
We are due to go back to
Excellent results :)
Last week Toby and I spent 5 days in Hastings Hospital
We got home fromHastings Hospital on Tuesday afternoon and on Wednesday morning we headed up to Auckland
On Wednesday we had a clinic visit with the specialist. The results from the bone marrow aspirate and lumbar puncture done the week before showed that there is no detectable traces of the cancer cells left in Toby’s body - yippee!! The specialist said that this result was the best we could have hoped for.
However, the result doesn’t mean that things will be easy from now on though - Toby still needs 3 more years of intensive chemo, operations and other medications so that the cancer doesn’t return in either the bone marrow or the brain and spinal cord in the future. But we are thrilled to have made a good start.
On Thursday Toby went back to theatre for another lumbar puncture, chemo into the spine and chemo into his PICC line. This all went well and we headed home on a late Air Ambulance flight (it had dropped off another patient at Starship and was heading back to Napier). We got home at 9:30pm - it was a long day!!!!
We got home from
On Wednesday we had a clinic visit with the specialist. The results from the bone marrow aspirate and lumbar puncture done the week before showed that there is no detectable traces of the cancer cells left in Toby’s body - yippee!! The specialist said that this result was the best we could have hoped for.
However, the result doesn’t mean that things will be easy from now on though - Toby still needs 3 more years of intensive chemo, operations and other medications so that the cancer doesn’t return in either the bone marrow or the brain and spinal cord in the future. But we are thrilled to have made a good start.
On Thursday Toby went back to theatre for another lumbar puncture, chemo into the spine and chemo into his PICC line. This all went well and we headed home on a late Air Ambulance flight (it had dropped off another patient at Starship and was heading back to Napier). We got home at 9:30pm - it was a long day!!!!
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