The Fundraiser Results / Bump in the Road

Ok... so do you want the good news first or last?



Didn't you always hate being faced with that question? We usually choose to hear the good news first. Which in my opinion is probably not the best one to choose. We hear the bad news last and that remains in our conscience... if you hear the good news last, then you may feel a bit better...yes? enough about my random and non important rambling..



So bad news first...



Looks like we aren't going home yet. We were scheduled to leave tomorrow but Lyric's blood counts are not where they want to see them. His white count was coming down really well in the beginning but has slowed right down. His count is still too high, especially for his last day of chemo today. Of course the Oncologist said that she is not worried at this point because sometimes it can take a few extra days to come down. So they are keeping him to see how that goes. But what is worrisome is that his leg is still huting him. Albeit not as dibilitating as it was before, and he is not walking without a walker... but the chemo should have gotten rid of that tumer sitting on his nerve. So. I ask the question... what happens if his counts don't go lower? Is that something to worry about?? She says that is why he's going through 4 more rounds of chemo.. we don't always get it all the first time. She also mentions that she thinks that the marrow is still producing some bad leukemic cells and something is off because the indicator is his leg still hurting. But it's a good sign that he's not in so much pain and he can walk without his walker.. Ok ok... so I'm a bit relieved to hear it put that way, but at the same time I worry that there is more to this Leukemia than meets the eye.. ugh.



Ok, so second round of bad news. Sorry... the good news IS coming!



I have met some wonderful people here. This ward is filled with a range of kids with different issues. But the wall of private rooms here are held for cancer patients because like Lyric is now, they become Neutropenic. 2 doors down is this sweet little girl. She is no more than 5. Her hair is just growing back from her last round of chemo and she has a feeding tube. They have been here since early July.



I knew something was wrong when I saw the mom crying one day last week. We've exchanged hello's in the hallway several times. I bumped into dad today in the kitchen. He asks how Lyric is doing and I say very well... he's a trooper. I ask how his little one is doing. Silence. Then proceeds to share his story. She was diagnosed with ALL Leukemia a while ago, did rounds of chemo and went into remission. Then in October she relapsed and was back here. Her genes were tested and they found some MLL mutations (I don't know much about this yet...sorry) which for some reason makes her body reject the Chemo. They tried marrow transplant... nothing. She is terminal with this terrible disease and has 1-3 weeks to live. My heart just plummeted for this man in his pain, and I could see the tears welling up in his eyes. I apologized. I said I know you hear this all the time but if you need anything.. even just coffee... I am here in the hospital going through the same thing. He agreed and said others sometimes don't understand... I offered my services as a photographer to him and his wife.. he said that they had some photos done before she relapsed and that he doesn't know if he wants to remember her how she is right now.. I said well if it was me, i'd be scared too, but I would like photos of those last precious moments. I said you think about it the offer always stands.

oh, oh... almost forgot. The have recently added a Naturopath to her care and they got into quite the battle with the pharmacist. They had her on Morphine for pain.. her organs are enlarged and she can't breathe well. The poor baby was just out of it. The didn't want her to live that way for the rest of her days so the Naturopath gave her Belladonna and it helped her manage the pain and still have some life to her to enjoy her last moments...Pharmacist said you can't give that to her it's a barbiturate..he said and all those toxic chemo drugs that your nurses come in and administer in suits with goggles and masks are any better?? he said to just keep quiet and say nothing about it. It's not worth the frustration.


Alrighty then... enough depressing news!!

Good News! WOOO!

The Fundraiser last night at 4Triple5 was just amazing. Just when you start to think that people are becoming cold and heartless something like this tragic event happens and BAM... everyone comes together. The community in Niagara is like no other that I've lived in... and I've lived in many!

The love and energy was in abundance. The place was packed and there was so much support. My wonderful friend Robin truly out-did herself getting this event organised. And with the help of sooooo many others it came off without a hitch. I had done up a collage of photos of Lyric since birth, a difficult feat...but it was such a great addition, like he was there with me. The music was awesome. The Prizes that were given for the silent auction were so generous. I did manage to get on stage (with MUCH apprehension because I have tremendous stage fright!) and say a few words. I had so many more things I just wanted to say but I couldn't get them out. I do hope though that everyone knows how much I appreciate all the donations (which totalled around $1500!!) and the love and support is what is going to help us get through this. Being a single parent with a house and 2 kids is was difficult to manage when I was working 7 days a week to make it work. But now that I have to stop working for many months... there is the fear of losing everything. But with all this help, I am hoping we can make it through for Lyric and Avery's sake. Thank you,thank you, thank you. Much Love.