Allegra is doing amazing!!!!
'Standing on her own'
Her counts are coming up, quicker than anticipated. We are slowly reducing her medications ie. pain, anti-nausea, anti-anxiety, and chemotherapy is completely finished.
Allegra will need a bone marrow biopsy in a couple of weeks to check the health of her marrow. Blood tests will continue weekly, then fortnightly, then monthly, and so on for 5 years to determine no relapse.
Allegra's vitamin D levels need to come up in order to have her next infusion of Bisphosphonate (zoledronic acid). This is an IV infusion required for bone pain and bone growth that has had trauma. It is a course of every 4 months for 2 years. When Allegra's Hickman line is removed from her chest (in approx 1 month), she will need a cannula and this can be done in day oncology.
The Liposomal Amphotericin (anti fungal) IV needs to continue for some time so Hospitals in the Home will be coming in the evening each day.
The Chief of Surgery - Leo Donnen came today to view Allegra and he said the layers of bone growth is progressing and structurally they anticipate she will correct herself in time. It could take a couple of years. Play therapy is the best therapy and it will be like having a baby again, learning to crawl, weight bear and walk. All in her time. He only needs to see her 3 monthly for X-rays and progression. Down the track they will look at the different leg lengths, if they need to do anything.
Allegra's wound has nearly heeled over. We still have dressing changes every second day but it has just a padded dressing. And we can have a bath. It has been 6 months since Allegra has been in a bath. (We have bathed her though.)
Allegra is interested in food again. We have little picnics. She dips her finger in foods, licks, puts food to her lips, tastes small amounts and even swallows. Some foods are "YUCK" and some are "Mmmmm Yummy".
It will all come together and the Speech Pathologist say this is normal for a child who has been here for this long, not eating, on chemotherapy and very ill.
My little Allegra has been doing a fantastic job coping with the final cycle, healing, growing and developing. She is an absolute champion and has even amazed the medical professionals as to how well she has recovered.
So this brings me to shout it out loud and celebrate that............
We are coming home. Home next week. Fingers, Toes, Arms and Legs crossed.
13th February 2017 = CURED
Hi Jacqui and Bubby, that is such wonderful news. We can't wait until you are home xxxxxxx
ReplyDeleteoh I am so joyful reading this post. What a milestone to reach Jacqui and Allegra.
ReplyDeleteWe are thinking of you and are just so thrilled that you will once again be home, snacking on foods and playing.
you are truly an inspiration.
all our love Chloe and Poppy. xxx