We stayed in the Neurosurgery ward on Sunday night and Kevin stayed with Charlotte, as we were told only one parent was allowed to stay in the room. Rachel went back to Jamie's house and had to be back on Monday morning for the MRI. Charlotte was stable on Sunday night and was checked every two hours again by the nurses.
We were told the doctors were meeting to discuss everything on Monday after the MRI. Then we were told that we would be going to SCGH for her radiotherapy treatment still and could still continue on with the Vorinostat, as they didn't believe these were the cause of Charlotte's problems.
So we arrived back at PMH a little bit more tired. We were then told by the Neurosurgery staff that we were being moved down to Oncology for the night, as Charlotte was out of danger now. We packed up our stuff on Monday night after dinner and moved down to Oncology. It was a very full ward, but we were lucky enough to get our own room. rachel stayed with Charlotte for the night and had to keep reminding the nursing staff when she had to have her medications and that she needed tablets, not the IV medication or liquid medicines. We didn't want her throwing up again and she hated the taste of the liquid medications when they gave her the paracetemol or the medicine to help her stomach cope with the steroids. It was another long night of interruptions, but she remained stable.
We were hoping to see the doctor before we headed off to SCGH for Charlotte's radiotherapy treatment as we were told that we should hopefully be going home Tuesday. There were a lot of patients in the ward and there had been a few dramas during the night. So we drove ourselves to the radiotherapy treatment. Once we got there Charlotte got a really bad headache, so bad she was nearly in tears. She got through the treatment quickly and we tried to give her some panadol, but the only panadol they had for children tasted disgusting, so she only got nearly half of it. She laid on Rachel for a while and we managed to get her into the car back to PMH. Rachel carried her up to the ward and straight into bed, turned all the lights off and Kevin got the nurses to give Charlotte the rest of the dose of panadol. She had a rest and perked up when her lunch tray came. Then we waited for the doctors again. And waited. We were told that we needed to move rooms again, as someone else needed to use the room. We moved to the room next door that was sharing with two other patients. And waited some more.
Finally, at about 2pm the doctor came by and said that if we were happy to take Charlotte home, the staff thought it would be beneficial for her to be in her own surroundings, as she seemed stable enough now. Charlotte was very worried about taking the IV out of her hand, so the doctor asked the 3 nurses attending to another patient if they could make it a priority to take the IV out of Charlotte's hand as soon as possible to stop her worrying and panicking about it. We asked about the MRI and she said it was the bleed in the tumor that had caused the problem and the steroids seem to have stabilised the swelling that was causing the headaches, etc. If Charlotte had a headache we can give her panadol and if it didn't subside within 45 minutes, call the ward or bring her in. The bleeding should heal itself and we will hopefully be able to wean her off the steroids a bit more slowly next week. We were finally free to go home just after 3pm. Yay!
Charlotte was a lot happier at home (or Jamie's house). She was awake every two hours. We will have to break the two hour wakeups quickly!
Charlotte's scans were also sent to Dr Teo, the specialist neurosurgeon over east who is known for operating where others don't and having a great success rate. Dr Teo's colleague called Rachelthis morning. Dr Teo and herself had studied them. She said that they believed that the tumor could be a DIPG, which was the PMH diagnosis, but it wasn't a typical one. Dr Teo would call it an atypical DIPG, but he noted that there was a large enough mass that was not entwined that he would have done a biopsy, as there would not be the impossible risk associated with it due to the position of this mass. His opinion was that we should continue on with the current treatment. A biopsy should not be done while radiotherapy is underway, as the body tissue doesn't heal the same during radiotherapy and it would be too risky to do a biopsy at this stage. If the tumor does change or grow in the meantime, he would like us to contact him straightaway and once the treatment is completed, give him a call to reassess once we know how the tumor has gone.
Dr Teo would be very happy to assess Charlotte then. They passed on their good wishes and sympathy. This was a very positive thing, as we were told by the PMH oncology doctor that Dr Teo doesn't operate on children under 8 years old and doesn't get back to people sometimes. So there is a little bit more hope after treatment is finished ...
Apparently Charlotte is the first patient at PMH on the Vorinostat trial. There are 3 other patients who are taking vorinostat, but unofficially. Those patients were started on vorinostat before the trail started, as he believed they would benefit from the drug, but the trial hadn't officially opened, so he managed to get them the drug unofficially. So Charlotte could be the first little guinea pig to survive and do well, you never know ...
We were hoping to see the doctor before we headed off to SCGH for Charlotte's radiotherapy treatment as we were told that we should hopefully be going home Tuesday. There were a lot of patients in the ward and there had been a few dramas during the night. So we drove ourselves to the radiotherapy treatment. Once we got there Charlotte got a really bad headache, so bad she was nearly in tears. She got through the treatment quickly and we tried to give her some panadol, but the only panadol they had for children tasted disgusting, so she only got nearly half of it. She laid on Rachel for a while and we managed to get her into the car back to PMH. Rachel carried her up to the ward and straight into bed, turned all the lights off and Kevin got the nurses to give Charlotte the rest of the dose of panadol. She had a rest and perked up when her lunch tray came. Then we waited for the doctors again. And waited. We were told that we needed to move rooms again, as someone else needed to use the room. We moved to the room next door that was sharing with two other patients. And waited some more.
Finally, at about 2pm the doctor came by and said that if we were happy to take Charlotte home, the staff thought it would be beneficial for her to be in her own surroundings, as she seemed stable enough now. Charlotte was very worried about taking the IV out of her hand, so the doctor asked the 3 nurses attending to another patient if they could make it a priority to take the IV out of Charlotte's hand as soon as possible to stop her worrying and panicking about it. We asked about the MRI and she said it was the bleed in the tumor that had caused the problem and the steroids seem to have stabilised the swelling that was causing the headaches, etc. If Charlotte had a headache we can give her panadol and if it didn't subside within 45 minutes, call the ward or bring her in. The bleeding should heal itself and we will hopefully be able to wean her off the steroids a bit more slowly next week. We were finally free to go home just after 3pm. Yay!
Charlotte was a lot happier at home (or Jamie's house). She was awake every two hours. We will have to break the two hour wakeups quickly!
Charlotte's scans were also sent to Dr Teo, the specialist neurosurgeon over east who is known for operating where others don't and having a great success rate. Dr Teo's colleague called Rachelthis morning. Dr Teo and herself had studied them. She said that they believed that the tumor could be a DIPG, which was the PMH diagnosis, but it wasn't a typical one. Dr Teo would call it an atypical DIPG, but he noted that there was a large enough mass that was not entwined that he would have done a biopsy, as there would not be the impossible risk associated with it due to the position of this mass. His opinion was that we should continue on with the current treatment. A biopsy should not be done while radiotherapy is underway, as the body tissue doesn't heal the same during radiotherapy and it would be too risky to do a biopsy at this stage. If the tumor does change or grow in the meantime, he would like us to contact him straightaway and once the treatment is completed, give him a call to reassess once we know how the tumor has gone.
Dr Teo would be very happy to assess Charlotte then. They passed on their good wishes and sympathy. This was a very positive thing, as we were told by the PMH oncology doctor that Dr Teo doesn't operate on children under 8 years old and doesn't get back to people sometimes. So there is a little bit more hope after treatment is finished ...
Apparently Charlotte is the first patient at PMH on the Vorinostat trial. There are 3 other patients who are taking vorinostat, but unofficially. Those patients were started on vorinostat before the trail started, as he believed they would benefit from the drug, but the trial hadn't officially opened, so he managed to get them the drug unofficially. So Charlotte could be the first little guinea pig to survive and do well, you never know ...
