Today made me realise once again how very up and down this journey is. Yesterday we were on top of the world and today Bianca very much had a grumpy day, so here we go back down to earth. She woke up grumpy, hated having her port accessed and was pretty down in the dumps for most of the day.
We had to leave at 7am this morning as we needed to be at the hospital by 8am. Bianca wasn't allowed breakfast as she needed to go into theatre for a lumbar puncture and chemo into her spine. When I met her in recovery she asked me "can I have breakfast when I get home please".
We went back up to the ward and it was time for Bianca's Vincristine. They changed the way they administer it. It used to be just a push into Bianca's port, but now it is a 20 minute IV infusion into Bianca's port.
We are still not on oral chemo as Bianca's counts are still low, but we started Dexamethasone (steroid) today. And then of course we got Methotrexate (chemo) into Bianca's spine and Vincristine (chemo) into her port via IV.
Now we are waiting to see if Bianca's shingles get activated again. She is still on oral Aciclovir (4 times a day), but the virus that causes shingles and chickenpox doesn't like chemo or dexamethasone and it is quite a stubborn virus so it may very well disrupt Bianca's treatment again. I hope not, because it is really important that Bianca manages to stick to her treatment schedule.
When Bianca got chickenpox at around 6 months and was barely affected, I remember feeling relieved that she was done with chickenpox and that we would never have to worry about it again, little did I know then that once you got the virus, it stays with you. Like our doctor said "Herpes stays with you for life". So here we are playing the waiting game...
When we got home Bianca felt a bit happier and tonight we are just so pleased that we are all together at home. We have a few days away from the hospital before needing to be back on Friday for a chat with Doctor Sullivan and a blood test.
We had to leave at 7am this morning as we needed to be at the hospital by 8am. Bianca wasn't allowed breakfast as she needed to go into theatre for a lumbar puncture and chemo into her spine. When I met her in recovery she asked me "can I have breakfast when I get home please".
We went back up to the ward and it was time for Bianca's Vincristine. They changed the way they administer it. It used to be just a push into Bianca's port, but now it is a 20 minute IV infusion into Bianca's port.
We are still not on oral chemo as Bianca's counts are still low, but we started Dexamethasone (steroid) today. And then of course we got Methotrexate (chemo) into Bianca's spine and Vincristine (chemo) into her port via IV.
Now we are waiting to see if Bianca's shingles get activated again. She is still on oral Aciclovir (4 times a day), but the virus that causes shingles and chickenpox doesn't like chemo or dexamethasone and it is quite a stubborn virus so it may very well disrupt Bianca's treatment again. I hope not, because it is really important that Bianca manages to stick to her treatment schedule.
When Bianca got chickenpox at around 6 months and was barely affected, I remember feeling relieved that she was done with chickenpox and that we would never have to worry about it again, little did I know then that once you got the virus, it stays with you. Like our doctor said "Herpes stays with you for life". So here we are playing the waiting game...
When we got home Bianca felt a bit happier and tonight we are just so pleased that we are all together at home. We have a few days away from the hospital before needing to be back on Friday for a chat with Doctor Sullivan and a blood test.
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