Room 230

Wednesday 2nd May was a day I want to cherish.  Allegra was so well, she was happy, not in pain, playful, cheeky and very talkative.  This was the best she has been in for 6 months.  I have missed her being like this, I have missed the little Allegra that we all know best.  There IS light at the end of the tunnel and this day I finally saw it.  My little Allegra is going to be well soon.

Allegra saw one of her little friends today, Izzy.  We went over to give Izzy her happy 2nd birthday present.  Well it bought tears to 4 adults eyes.  These two gorgeous little girls were so excited to see each other.  They kissed and could not take their eyes off each other.  It hit me as to how much I miss seeing Allegra with her little friends and a wave of sadness came across me as we had to go back to hospital for our next stint.  I wanted to stay and play and I know Allegra would have wanted to also.  But accepting as she is, off we went.  Where are we going baby? "hospital, nurses, doctors".  So so cute.

I found myself settling into Room 230 just a little too well and comfortable, probable because we have been here before (like 5 months) and know the drill.  Our evening nurse says "we are easy customers", little does she know we want a room with a better view.  And the lovely Nurse Michelle was here to re-admit us, Michelle was our very first nurse here at Kookaburra.  Thank you Michelle again for looking after us and our needs.

We arrived back into hospital at 3pm after 10 days of being at home with a few visits to hospital and an overnight stay.

Allegra had a dressing change and her anti fungal IV then chemo began.

She was ok about coming back to hospital and she wanted to sleep with "mummy in the bed".  I was to sleep right beside her and share a pillow.  Anything for my baby girl. 

Another Sleepless Night

Poor little Allegra did not have a good night or day today.  She is very unsettled, restless and in pain.  She is just so gorgeous.  She tells me "sore".  I say "where does it hurt baby", she tells me "there" pointing always to her right knee.  I say "does your tummy hurt", "yes", "does your mouth hurt", "yes", "does your leg hurt", "yes", "does your bottom hurt", "yes". I believe she is sore everywhere but different levels of pain.  There is bone pain from her fractures which would be sharp, bone marrow (leukaemia) pain which is constant and dull, all over yucky pain from chemotherapy and mucositis which can be severely painful.  My little sweetheart is on many different medicines for all these ailments.  Medicines for her disease, medicines for the side-effects of her disease, medicines for the medicine side-effects and medicines that are prophylactics.  My bio-dynamic, organic-fed and natural product baby is loaded with chemicals.  It's hard getting used to these being all good toxic chemicals that are making my little Allegra well again.

At this stage in her treatment as her blood counts are low and she is neutropenic, mucositis occurs.  This happens because Allegra's chemotherapy medicines are killing rapidly dividing cancer cells that are already there and unfortunately this treatment can't tell the difference between dividing healthy cells and dividing cancer cells.  Mucositis is painful inflammation and ulceration of the mucous membranes lining the entire digestive tract.

So I have put our sleepless night and unsettled day down to mucositis.  But the good news is that Mar Ma (grandma) is having a sleepover tonight and I am having a night in the meeting room which is 2 doors away.  I need sleep.  This is the plan anyway.  Let's see how I go.  I know mum will be fine, but will I?

Allegra and I have not slept away from each other at all, ever.

This is Allegra's medicine pole!

Dressing Change

 Allegra had numerous bone marrow biopsies prior to diagnosis and has another one after each round of chemotherapy, to determine the amount of cancer cells present, the pathological appearance and the response to chemotherapy.

Tragically while Allegra was in traction flat on her back one of her bone marrow sites (PSIS) became infected with a fungal bacteria (Mucor).

This created great concern to all medical staff and of course me.  The Plastics Team soon took over from the Orthopedic Team  and Allegra was out of traction, braces and splints off and immediately was supported off this infected area.  Daily dressing changes were being performed under many pain analgesics in the room and the site was monitored closely.

This was at a  neutropenic stage of her treatment so she was and is very vulnerable to further infection.  She had and has no neutrophils (white blood cells that fight bacteria and infection).

Surgery is needed but too dangerous while her blood counts are so low.  We had to wait until her counts slightly recovered and G-CSF (granulocyte-colony stimulating factor) was given intramuscular daily until her neutrophils recovered.

Allegra went to surgery on Tuesday 7th February for a debridement and sealed with a vac dressing, the result was as best as it could be.

The vac dressing change was to be performed twice a week in surgery under GA (general anaesthetic).  This was being done on a Monday and Thursday.  I really hate it when Allegra is in surgery, away from me.  The unknown makes me very anxious, I power walk around the grounds of RCH.  I have my own track.

Allegra has to date had 18 GA's and is becoming well aware of the pre-op room.  Considering she has fasted for well up to 10 sometimes 15 hours by the time she gets to theatre, many medical staff gowned and masked and her mummy leaving her again - she is amazing.

We know that the wound is not going to even begin to heal until she has fully completed her chemotherapy. I want to hear after each change is that it is "stable",  "no further infection", "mucor not present" to date this is what I am hearing.  My clever little Allegra doing all the right things.

We have come a long way since beginning of February, Allegra now has the dressing changes in the treatment room in kookaburra (oncology ward).

My little Allegra is still stable and the dressing changes happen on a Tuesday and Friday, she fasts for 2 hours, no GA and I don't have to leave her.

Later on down the track Allegra will require a skin graft.