Bernadette

Arielle is continuing to do really well and has now reached the magical 2 kg (2054 gm to be exact). So from a weight perspective she is now allowed to come home. However we have to get her bottle feeding - she has 8 feeds a day and yesterday she had 5 feeds by bottle which is pretty great considering she is only a corrected age of 36 weeks. We are sure she keeps smiling at us but the nurses insist they cannot smile yet! I was unable to see her yesterday (due to my quarantine period) so Cam spent time with her and like me felt awful at having to leave her at the end of his visit. We both cannot wait to come home.

I started chemo again yesterday (round 10) and have decided to take every drug possible to combat the side effects, so I am now having 3 forms of anti nausea drugs,2 forms of anti diarohera drugs and a drug to increase my milk supply, as well as iron and vitamin supplements and a few others thrown in there for good luck - yippee - I am rattling with all of these pills. Although I had the usual side effects for a few hours at least once the drugs all kicked in I am feeling much better. I was also allowed to come home which was just lovely. The only catch was usually in hospital they give me a sleeping pill as one of the anti nausea drugs causes insomnia and you guessed it I forgot to ask to get some to take home so I have only had 3 hours sleep.

I have now had the results of two of the scans - one shows that there is still a tumour there however that scan just shows the size of the tumour and cannot distinguish between scar tissue (which will not be removed by any more chemo) and active cancer. The other scan (PET) showed no signs of active cancer. Although in itself that is a great result it is not a final result. Lymphomas are either PET active or Gallium active but not both. As due to the radioactive injections required for both scans I was not able to have them initially so they do not know whether my lymphoma was a PET active or Gallium active one. Therefore I need to wait for the results of Thursday’s Gallium scan to find out if there is still any active cancer. The best outcome would be the Gallium scan showing no active cancer. If that is the case then the doctor has agreed to let me have a total of 12 chemos which would mean only 2 to go. The worst result (other than the currently inconceivable result of the cancer becoming untreatable) is that I could have to have 6 weeks of radiation treatment as well as more chemotherapy and maybe bone marrow transplants (they are a last resort though as I understand it).

The doctor has also agreed to trial me having chemo every 10 days instead of 14. It will take a toll on my body and they will have to check my blood works to make sure I have recovered enough but if it is possible then it will cut the remaining time on chemo down. My reasoning behind this is that it would allow me to continue expressing milk (and throwing it out as it is chemofied) and then resuming breastfeeding Arielle once the chemo is over - which if I only have 2 treatments to go would be in 34 days (20 days till my last chemo and 14 days to let it exit my breastmilk).

So we are trying to remain hopeful but not banking on it. Whether it is Gallium active or not is anyone’s guess. Nothing at this stage points us one way or the other so we will just have to wait and see!

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