VIDE 5

Monday 9th January - Friday 13th January

So this week saw course 5 of 6 pre-surgery chemotherapy. It was our hardest yet because of all of the different things that hit us, new bumps in our road.

As part of Joni-Mai's treatment, she needs to be monitored for changes in her body. This includes checking her heart and other organs in her body to see that they are functioning properly. We already noticed that there were possible issues with her hearing - which, after being checked seemed nothing for us to worry about. Joni-Mai also seems to have had some hair regrowth which is easily explained - the chemotherapy drugs affect ONLY the cells that are working at the time of being administered. Thus, if her hair is growing at the time of receiving chemotherapy, her hair will fall out again. If her hair is not growing at the time of treatment, it will not be affected and therefor can grow the week after chemotherapy.
The main thing they need to keep an eye on, is the heart. Joni-Mai, before VIDE1, VIDE4, VIDE5 & VIDE6 has to have ECHO scans on her heart to make sure that the medicines aren't having a detrimental effect on it. If there are signs of problems then they can act and prevent extra problems occurring.

After spending the morning in the clinic, we had an appointment at Great Ormond Street Hospital for an ECHO, there was a long wait and after seeing the technician and waiting for the report, we headed back to UCLH. To us all seemed fine but, before the dinner time, one of the doctors had pulled us to one side and explained that there was a problem arising with Joni-Mai's heart. The problem was to do with the left ventrical (Fractional Shortening) its numbers weren't as high as they ought to be. Before VIDE1, her FS was at 46% - absolutely perfect and very strong. Before VIDE4, her FS was at 38% which is a perfectly acceptable decline in three rounds of chemo. The problem was that VIDE4 knocked the figure down to 31%, this was the worrying thing. One course of chemotherapy knocked her heart quite badly and the fear was that if they give another dose of one of her chemotherapy medicines, it might push her heart so far down that she'd need medication to bring it back, it would also mean that there was a chance of there being problems when she was an adult. The cut off figure for medical attention is 29-30% so you can imagine our anxiety at being told this news. The doctor said that a consultant cardiologist would be assessing the images from earlier in the day and they'd make a decision regarding the medicines between them.

After a good night's sleep, the doctors had all been in contact and confirmed that the FS was indeed down at 31%, the three options were -
1) To administer the full dose of Doxorubicin (the drug causing the problem).
2) To administer a modified dose of Doxorubicin.
3) To cut the Doxorubicin completely and review after her pre VIDE6 ECHO.

They finally decided to cut it completely this time and review it before VIDE6, this would give her heart extra time to recover and then if needed, she would be referred to the consultant cardiologist to assess the damage and take steps to fix. So, for now it is a case of hoping and crossing our fingers. We want her heart to fix itself because on top of everything else, a heart problem would be rubbish!

So we began the chemotherapy on Tuesday, Joni-Mai had all of her anti-sickness medicines (a cocktail of Ondansetron, Dexamethasone, Domperidone and Nozinan) and started her pre-chemo hydration. She spent the afternoon going to school and playing in the playroom and she had her regular visitor - Uncle Eddie (she ADORES her uncle Eddie). We had some cake in the day and Joni-Mai had a few jelly babies with her Uncle Eddie - nothing too out of the ordinary for her. In the evening she started to develop a strange rash. It appeared and disappeared before our eyes, and kept doing so for the next thirty minutes, or so. I told the nurses that there was a strange rash and after watching her they decided it was an allergic reaction to something! I held my head in my hands and watched the rash come and go. She'd had nothing out of the ordinary and there was no other explanation for the rash. After some quick thinking, one of the nurses thought to check Joni-Mai's blood sugar levels. Her level was all the way up at 11.4 - FAR TOO HIGH!! So, they cut her drip off and changed her drip bags from glucose solution to saline solution with the medicine added. I can only begin to tell you the stress I was feeling at this point. After doing some reading, I learnt that the combination of the Dexamethasone and chemotherapy plus all the glucose that's pumped through her little body can indeed cause diabetes! "OH CRUMBS!!!" I found myself saying A LOT!!!!! The nurses cut the Dexamethasone from her medicine cocktail and it seemed to work in lowering her blood sugar levels.

The rest of the week went smoothly, until Thursday when her blood pressure was too low. This could have been because she wasn't eating and drinking enough, it may have been caused by the Nozinan - it makes her all droopy. By the Friday, she was fine again! So, a very eventful week.

Please accept my apologies if this post is all over the place, I had a lot to try and remember! We also had a meeting about the surgery. I will put a new post about that tomorrow.