Rod and Charlotte arrived at SCH for bloods and chemo last Monday (7th December) at 8.30 am and there was no bed for Charlotte. So, after a long walk to Coogee and back, a bed finally became available at 2pm. The frustration we have with an overloaded hospital system is still difficult for Rod and I but we do have to get our heads around this element of Charlotte’s medical journey. It is the reality of life at SCH. Time at Hospital is never really without incident for Charlotte and her drip line came unscrewed and there was a chemo spill which is a hazardous (toxic) waste incident. Needless to say it scared the living daylights out of me as I held one end of the line in my hand so it did not drip on her skin (but got on me) and the other lay on the floor leaking as I rang the emergency buzzer. I have never really seen nurses run so quickly! I was sitting on the parent bed quite close to the floor when it happened and my eyes started to burn the chemicals were so strong. God only knows what it is doing to Charlie’s good cells! All in all there was no damage or any major problems just some special cleaning and discussions about contamination of Charlotte’s line. Despite this Charlotte responded exceptionally well to this round of chemo and was discharged on the Friday morning. This was one of the few times she has not been sick and in isolation during chemo. So, after the chemo was administered and the folinic acid rescue was being pumped through the drip we were able to walk the corridors, play in the toy room, visit the Starlight Room for a Christmas concert, sit with the Music Therapist (don’t laugh!) and she could be her little social self. It all helps!

When we left SCH on Friday we had a day and a bit to cook, clean, make cakes and prepare for Madeleine’s 4th Birthday Party. We just had the family, a few of her little friends and a clown (Uncle Dave) It was a red party and she had a blast as a lady bird with her little Charlotte home to celebrate with her. We had such a lovely day thanks to the help of our fantastic family and the fabulous Vanessa.

We had Charlotte’s clinic appointment yesterday and whilst her wbc, neutrophils, platelets are quite low she is doing really well. Madeleine has woken with a hideous cough and fever so we have quarantined her to the bedroom and are about the send her off to Nanny’s in an attempt to shield Charlotte from more infection. I am not sure that this will work but it is worth a try as she is back in on Monday 21st for the next round of chemo which really knocks her around.

We are grateful to the amazing nurses in C3 West (now C2 South) and the patient nurses in the chemo ward for their ongoing assistance with Charlotte. We are also thankful for the specialist team who are amazing. Hopefully, we will write again before Christmas and we hope to make it out on Christmas eve, all going well.

Much love,

Beck and Rod xo