Update time! Im having a rough week in my head so its been challenging trying to come in and write an accurate pos that doesnt sound miserable and ungrateful. This week it feel so hard to live with the reality that my beautiful, beautiful little girl is battling cancer at such a precious young age. Its so bloody unfair..... I can barely stand it.... But I keep it to myself, and will pick myself up emotionally yet again, dust myself off and put my best foot forward. At the moment Im only living one half day at a time, and not thinking beyond that - because its just too darn hard this week! Anyways, Im transparent - so here goes. Dasha is overall pretty good (yay - go Dasha), though, as her PEG injection wears off she is weak and very tired. Im just rolling with the punches really. Tonight she woke and asked for a lamb chop at 11 pm.... So she had one, then chicken and then she asked for a bobby milk (a bottle of milk). She hasnt one one of those in months and forever but I dutifully made it, and she snuggled in my armed and thoroughly enjoyed it. She seems to be medicating with food so whatever time of day or night, the kitchens open. Its usually week three that the requests for cheese sticks and lamb chops at 4 am come in, so I was pleased it was only 11 tonight. On Sunday her papa took her for a walk while I had a shower and caught my breath for the first time in forever. I should have enjoyed it but I felt like I was rushing and couldnt take my mind off her. I did my hair, make up, got dressed and thought about getting to her scrap book but everything was soooo quiet. I missed the sound of her voice, her chatting and really missed just knowing what she was doing. I called papa and asked if she was ok, and if he needed me to come and drive them home if she was tired and he said she was ok, and I could hear her chatting away in the background...... And I ached to be with her. He said if you want, you can come and join us and then Dasha was on the phone telling me she was chasing birds. Youve never seen a mumma move so fast.... I jumped in the car and wizzed down towards to oval where they were playing. As I got to the oval I opened my window and honked the horn and waved and she spotted me....... And started running as fast as her little baby legs could carry her. I had to drive way past her and turn into a distant car park and when I got there she was still running, so I ran too...... She had the biggest smile on her darling little face and I picked her up and she wrapped her arms around my neck and squeezed me as hard as I squeezed her. It felt like I hadnt seen her for a day and it was just over an hour. Ill never forget the sight of her spotting me and running after my car..... It was so precious. Shes my whole universe. I miss her when shes asleep, and really cant bear to be away from her. Its always been the same...from the moment she was born. Ive never wanted to be away from her for even an hour but its far more intense now. We played cricket ball (her name for it) and watched papa climb things and then she tried to climb too. She chased birds and giggles as we played aeroplanes. She finally hit the wall after about 45 minutes and suddenly needed to be carried. I was pleased we had the car. She slept for three hours after that adventure. That was the beginning of her starting to get pooped out. We went for bloods on Monday and her peg injection has run out and her numbers have dropped pretty dramatically across the board. I need her to rally by Friday because she has her last round of chemotherapy (Please God) on Monday. Simmy came over for a walk today, and we took her to the water front. Dasha is very teary and temperamental when her levels drop this low so I was feeling weary by the time Simmy arrived. The walk was uplifting and needed and the chat with Simmy was lovely and restorative, but little Dashy has very tired weak and weary little legs. They were bucking a lot under her today and she was tripping a lot so there was much hand holding between giggly bursts of playing chasing. She often yawns and says tired even after 13 hours sleep. My entire career Ive always said youll never hear a toddler say Im tired unless something is terribly wrong and I always suggest blood tests to rule out cancer or a blood disorder so each time she says it, its like a bolt of horror to my heart. I started a scrap book for her about her time beating cancer, for when she gets older... So she can know what it was like, and I had pictures printed up. That was actually a bit reality check for me. I guess when youre close to someone, you dont see the changes in them. I thought that apart from the hair loss she was looking herself.... But the pictures were a little startling. I could see the impact of her life saving treatment - and its taking an obvious toll. That all said..... Shes still doing so well, considering, and Im counting my blessing for her good wealth overall. I think it sucks though... Just saying. The isolation is relentlessly boring and lonely, even when we fill our days. We just miss everyone, and miss being in new places and being a part of the world, but its necessary right now and its not forever. Even she is sick of the very quiet activities and lack of adventure. Shes taken to escaping through imagining she is everything and everyone she she sees in books, magazines, tv and real life. Thats sad for me to hear but smart for her because shes been to the moon, adopted a cat, been to where the wild things are, and lives in the land of play school reverse garbage creations and list is endless every day. Diego is holding up well, Im running at 40% emotionally - I could cry all day but I dont.... I just feel broken and terrified and helpless and out of control and desperate to save her...... And desperate for this to be over.... And so sad that I think it will never actually be over as we must stay alert forevermore...... But Ill be grateful to have to even have that opportunity as I know many others dont get to have that chance. Im not wanting to sound ungrateful, but I think it sucks all the same.... Just saying. So its mighty mighty mighty faithful, heartfelt prayer time. As we have her next round of chemotherapy on Monday we need to specifically pray that her blood level rally beautifully by the end of the week so she is strong enough to go into Mondays round in the best form. I have faith that this will be the case and know with more trusting prayers, she will be safely tucked under Gods wing of protection. Please also pray for her lungs (as the chemotherapy has weakened them a little this time and activity can cause a lot of coughing). Please pray for her vision as she is struggling a little with her right eye (we have been booked in to see the ophthalmologist at Westmead). Please pray the discomfort eases and her vision is good. She often holds it closed to look at things and when its really bothering her she asks me to take eyeball out. Inside Id like to cry. On the outside I reassure her that when her central line is out the doctors will help her eye feel better. Please also pray that her organs are cleared of, and protected from the chemotherapy. Particularly her lungs, heart, liver, kidney, bladder, ovaries and ears (cochlea bones). I know she is happy, and giggly and active and well, but these changes in her are so unsettling to a mumma that it feels scary anyway. That all said - shes trooping on, with that trade mark grin, still asking for chasing games, jumping on the bed nudie rudie play time, and endless playing and adventures. Shes still eating like a little piglet (all healthy and great food) so shes running at around 60-70% of her old self. Shell make a come back in no time, of this I am totally sure. I just need to get her through this final round safely. Ill add pictures of our tall baby girl later, but she is as beautiful as ever, her language is literally mind blowing and her bravery is staggering. We went to visit Simmy quickly after bloods the other day to collect stuff and when Sim answered the door, Dasha said didnt have injection!. It came as a bit of a shock to me because I always tell her everything that is going to be done and didnt know that her little mind was burdened with worry that we might have an injection each time we go for bloods (which is sooooo often) so Im pleased she revealed that to me so I can remember to tell her what we are and arent going to do on each visit. So thats us. Papa is good, and less anxious than me right now, which is good. Ill be in better form next week when we get through Mondays round. Please keep praying for us. We need your prayers, love and support endlessly. Much love from Sheyney, The Dasha and papa xoxx
Posted on: Tue, 29 Jul 2014 15:29:19 +0000
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