I kept this one quiet, not intentionally as it came about very quick and unexpectedly.
Allegra's blood counts came up and we had an opportunity to go home before we start a very intense cycle of chemotherapy. It is our 4th and hopefully the last EVER. It is called the Intensification 2 and Allegra is expected to stay in hospital for the entire treatment (approx. 6weeks) as it is the hardest one of the four, it will completely wipe out her system and my little Allegra will be very sick and Neutropenic for 35 days from this "good medicine".
We planned on doing not much at all. We were looking forward to sleep and sleep without beeps, eat home cooked meals, thank you Jo so much for your delicious dishes and wine and tim tams, very much appreciated from mum and myself. A visit to the dentist was needed desperately to have a tooth filled which I broke while in hospital. Thank you Ray. Shower with HOT water, wear different clothes, potter about in our home and walk our streets which are filled with the Autumn leaves. We appreciated these fine luxuries as we had not been here for 140+ days.
We eventually got away on Saturday at 6.15pm and my little Allegra was very excited as was I and she understood that we were going home. I asked her "baby where are we going". She would reply "home". She fell asleep on the way and we pulled up, she woke and she said "home". Awwwww. Yay we are home. I cant believe it, not just for the day or the night - for 9 days!!!
We had many ups and downs. The happiest of happy times was watching Allegra in her own home crawling around, playing with her toys and discovering what she had missed. It was hilarious, she crawls and Mum or I were walking behind her carrying her feed pump and bottle. Allegra says "coming" and when the line is tight she says "wait". She had us constantly on our toes and we were at her beck and call.
She started to take interest in food and was tasting different foods but very reluctant to swallow. It has been months since Allegra has eaten.
While at home Allegra chilled out in bed watching You Tube using up all my usage in a day. I discovered this at night while my little Allegra was spread out on the couch asleep. A place where I would have loved to be in after a hard day at home nursing. It was so lovely to see Allegra relaxing and just hanging out.
The downs were really down. It was heartbreaking and heartwrenching to see my little Allegra suffer with extreme pain, which at times could be constant for an hour. She grits her teeth, clenches her fists, veins protrude on her perfect hairless head, she shakes, looks deep into my eyes with fear and cries. It comes on so quickly. If there weren't any medications due or that I could give her, I called Kookaburra ward for assistance or I give medicines early or break through morphine and try comforting her. She tries so hard to be distracted but the pain is excruciating. This can not go on, it is so unfair.
Hospital in the home have been fantastic and it is always a relief knowing they are coming by between 3-5pm everyday, to hang Allegra's Lipo Amph (anti fungal). My little Allegra is such a great help to the nurses, she wants to "push" her medicines and hands them her lines to attach the medicine. She is so aware of the lines attached to her and coming out of her body. She takes care of them and has accepted these accessories.
We have had to do 1 dressing change on her bone marrow wound. The wound has a lot of granulating tissue and this has made the silver dressing move off her wound. Other than that and her pain management, we have been easy for the nurses. Thank you Sarah and Debbie.
We had to go back to hospital on Monday for a dressing change then on Thursday for a lumbar puncture with her Cytarabine chemotherapy medicine injected into her spinal fluid and a bone marrow biopsy and trephine, and another dressing change which the plastics team were there to supervise. They treated the granulating tissue which was growing and used a different dressing.
Allegra on both occasions has not been happy about being there. She cries and climbs up on me saying no no no mummy waving her hand. It has been a month since Allegra's last General Anaesthetic and I found it very hard carrying her into theatre and laying her down once she is asleep, turning around, walking through the door and leaving her. You think I would be used to it by now.......it is something that I will never get used to.
We had to come back into hospital on Friday and they admitted us. Allegra spiked in a temperature and the pain was too much for us and her to be at home. This was unexpected and we were not ready to come back. Will we ever? Allegra came good and her pain was managed and we were off again......back home on Saturday. She was so well we even managed to have a stretch.
Uncle Poo (Paulie), Uncle Timmy, Jo, Jill, Remy, Aunty Nic, Bee Bee and Char Char came to visit while we were at home. So nice to see beautiful caring people in our home.
Allegra was not keen and very reluctant being outside, bumping into people in our hood. Of course people wanted to see her and wish her well but she did not like the attention. She much preferred staying indoors around her mummy and Ma Mar watching Wiggles, being patted and lying about in the comfort of our home. All in all we LOVED being home. Allegra slept so well in our big bed and so did I.
So we packed our bags, Allegra chose her toys and books and back to hospital we go. Psyched up for final cycle and stint.