Ok. Whats new? Yesterday we ventured in to the Mothership. Itd been a while, almost 6 weeks (as we get our line cares done at home, casual as). To be honest I was a tad excited, (besides the usual and horrendous scanxiety) I had a few catch-ups lined up with my ever precious Ward Sisters. As well as the usual Bloods, height weight, etc. We popped in to the CCF house (or The Bead House as we call it) first for a quick play and bead top up, the last few beads we will - hopefully - ever collect. Then to the Coffee Cart for all important caffeine supplies and swiftly up to ward to visit a super special and fellow Neuroblastoma Warrior Princess and her fricken amazing Mother. This was the first time these two girlies have actually PLAYED together. Not by choice. Just as the journey goes one or both of them were either too sick, in isolation, BMTU, etc..... It was the most powerfully magical ............ words fail me, the energy in this little room was something out of this world. Seeing these two girls interact and paint and play ponies ......... It warmed the cockles of my, somewhat desensitised heart. I was struggling to hold myself together. Anywho. Its was AAAAAAMAZING!!! We then headed over to clinic. But!!! But as we left Ems room Phoeney said I want to go to my to my room now Mummy Oh babe, we arent staying. Yes me is!!!! No there is no room for us. Dont worry, me find one Wow!!!!! You WANT to stay?!?!? Its HAS been her home away from home, our beach house for over half her life now and I take comfort in the fact its actually a happy place for her. We managed to hug some nurses and on our way out, may or may not have raided the lolly bin. So off to clinic. More familiar faces, amazing Mummas and there ever inspiring children. Weight - up 1 kg!!! BOOM!!! Height - up 2 cms!!!! BAAA-BOOM!!! We were reminded by our Oncologist, of the tiny, frail little girl we brought in over 18 months ago, a mere 8.4 kgs. Now!!!! A whopping 13.75 kgs. Thats just how we roll :) Now Platelets. Post transplant we just couldnt, wouldnt make any. After a few months of regular transfusions we took the tough-love approach to these little blood clotting rascals. And having low, super low platelets was the norm. We were lucky to get up over 50. The normal range being 150 - 500. Lucky we arent normal. Yesterday we hit the jackpot, only 337 days post transplant, triple digits, TRIPLE!!!!! Coming in at a whopping 104!!! Hahahaha not in the range great but massive for us!!!!! Had a great chat to our, first ever, oncologist (shes been on maternity leave), her jaw hit the floor when she saw Miss Phoeney. Lil miss motor mouth, singing, dancing and telling Once-upon-a-time stories. My Oh My!!!! This little fire cracker of a 2 year old!!! Great transformation HRH Phoenix Piper. So Proud of you. You just rock the socks off your Mummy and Daddy. Anywho. Were going in Monday, 7am to have our double lumen Hickman line taken out. Removed. No more tails, no more red tail, no more white tail. Its slightly surreal as they have just become a part of everyday life. Taking pride of place just hanging out her tops. We dont even really notice them any more. Theyve been in there over half her life....... Oh well. Onwards and upwards. New adventures, less [back of your mind] worry and Im sure in no time well be skydiving, bungijumping and wrestling again. LOL!!!!!! Phoeney can have deep baths, long showers, swims and water? Well water wont be an issue anymore. So thats about it from us. For now. Will no doubt post a quick update come Monday. Until then.... THANK YOU!!!! Thank you ALL for your continued power of positivity. Lovin it. Lovin life. Lovin!!!!!!!
Posted on: Fri, 22 Aug 2014 03:24:36 +0000
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