Life as it should be

It's been awhile since I've last updated. I apologize. I have no excuses other than we've been having fun, and experiencing life as it should be... normalcy! yes!

Lyric is amazing. His counts are recovering quickly. He's not neutropenic anymore, and has so much hair!

He's happy, loving going back to school full time being with is friends.

I have spoken to him about his disease and how important it is NOT to own what you have. Lyric DOES NOT have cancer. He's a perfectly healthy and happy child. When you own your disease it becomes you.. a part of you. Your disease becomes worse and can take over.. since these discussions his counts have just gone up through the roof.. whereas before when he was stuck in a hospital and having the weight of HAVING cancer on his mind his counts did not recover as fast. I had read this in a book, and heard from some people about the power of our mind... it's amazing! I can't obviously prove this is the case, but the Doctors are amazed at his health and recovery.

I am back to working full time almost.. which has been tough for me considering I havn't worked in 9 months now.. it's nce to be making money finally and not having to ask for help anymore. I want to thank everyone who have helped us financially and emotionally through this.. we could have not done it without all of you. Thank you thank you thank you!!

We are still coming to clinic twice a week for counts, and will have a bone marrow test this coming week to see how the last round of chemo worked. We are sure he is fine... but still nerve wracking nonetheless. The rest of our lives will be nervewracking! always looking over our shoulders to see if that nast disease has returned.

My wonderful Naturopath Jane has Lyric detoxing, and getting healthy again.. we are going to start a preventative regimen soon.. a high alkaline diet, and lots of greens and fresh fruits and veggies.. I have met some folks who have beaten cancer naturally through eating the right diet! It's amazing how food is so healing. Eating the right foods CAN mean life or death.

We are planning our trip to Hawaii for November. Our roomates are coming with us!! Which will be amazing! Lyric is so excited and can't wait to go!

Lyric also celebrated his 9th birthday on the 14th! wow.. getting so big!

Avery is great, flourishing and still as happy as she always is.

We have a trampoline in our backyard, the kids love it! Lyric is now able to be a normal kid which makes a huge difference too! riding bikes, skateboards and jumping on tramps!

And we're back..home!

So this visit at the hospital was terrible. The standard of care has greatly diminished since we officially finished chemo. And it's not just with us, other people have noticed the same thing. I will be writing a letter, and also bringing to the attention of the ward supervisor.

Anyways!! I had to push them to let us go home on an LOA today/tonight.. so we go back tomorrow morning to get some blood counts and a platelet transfusion. I am just so glad to be home again. Now that it's the end of treatment, it feels so different... it just is so much harder to be there. As well, it doesn't help that there is this beautiful little girl Alivia, in the room next to us who has Neuroblastoma. This cancerous disease in almost incurable. 1 child in 100,000 get this disease. Because it's so rare there is no money or funding going towards research or cures. So the little boy who just died a couple weeks ago had it.. and there is now 2 others on the ward with it. She has giant tumers growing out of her head, that is causing her intense pain.. she's on a morphine pump around the clock. She has a beautiful family, including a new baby sister. I kept stealing her and just holding her in our arms.. putting her to sleep.. smelling her baby smell.. such a beautiful thing in the hospital.

To this point I have no idea what our follow up treatment will be. As far as I know I will continue to be at the hospital twice a week until his counts go up. Then after that I am not sure. We are however planning a Great Wolf Lodge Party getaway.. and need 10 rooms booked to get a great deal! So in the next few months keep posted! If you are interested in becoming a part of the party for Lyric's successful fight beating cancer please let me know.

We may be sharing this part with some friends we met at the hospital who's son, Ethan, also had AML.. and just finished his last round as well. We thought it would be a nice celebration together.

So other than that... my computer has broken.. and I have had it fixed twice. Unfortuantly it's on it's last legs. And of course I use this for my photography.. which I have some business that is coming my way!! So I went to Best Buy to apply for a card and nope! denied! haha.. well, I will have to figure this one out..

My new room mate is moving in Sunday.. so I have lots to do! Lyric and Ave are very excited to have new house-mates!

The weather has been beautiful.. a glimpse into what is coming soon.. and I can't wait!

Life is more than busy!

We`ve been home.. enjoying life. Everything has been great. I started back working at the Market part time, I have an art show that I will be showcasing my art in next week, and my wonderful and dear friend is moving in with her son this Sunday... needless to say it`s been more than hectic.

Last night however, Lyric spiked a fever around 9 p.m... we were directed by the Oncologist to come the emerg department here at Mac. When we arrived, his fever was no longer existant... which has happened before for no reason. It could be that his blood levels are a little low.. it could be anything!

So I stayed all night in emerg, as there were no beds on the ward. So finally this afternoon we managed to get a bed. I`m tired.. they don`t have anywhere for you to sleep in emerg. So Lyric and I bunked together on the gernie.

If all goes well, I should be home Thursday..fingers crossed!

Avery is doing very well, she`s still happy and healthy as usual!

The Big. Long. Day.

That's it! Chemo officially DONE! He had his leg needle this morning at 9 a.m., and that concluded Lyric's chemo.

Shortly after, Lyric was in the OR, getting his tube out. Things went well.. they have placed a peripheral line in his hand until Tuesday, when they can put a Pick line in his arm. So we're stuck here all weekend. boo!

He's been chalked full of drugs today.. chemo, several anti nauseants, Tylenol, anaesthesia, antibiotics... so when he finally was able to eat at 3, he wanted McDonalds.. hesitantly I got it for him.. but when he got up to go pee, the room was spinning and out came everything.. including all the natural meds I just gave him. Damn!

His hand is hurting, from the Magnesium in the IV.. so he keeps complaining, but they can't do anything about it. He just has to let his vein harden.

He's well otherwise.. and we are so glad the chemo is done. Now, we focus on getting him healthy again.

Infection update..

Lyric still has this infection. The cultures were still coming back positive, which means the antibiotics aren't working as effective as they would like.

They have decided to pull out his Hickman catheter, which is where the infection is originating. This will take place tomorrow. Then, they will start him on another round of antibiotics. Tuesday, they will insert a Pick Line into his arm... his chemo is officially done tomorrow, but he will need transfusions shortly, so they want him to have something.

He is doing well, no fevers, not much of an appetite. Little bugger is so picky and temperamental.. he wanted pizza last night, but ONLY pizza from this great place int he falls.. but I couldn't obviously get it, so I went out and got something similar. He took one bite and refused to eat it. Then said he wanted Butter Chicken.. he loves Indian. So Paul went out to get it, and an hour later he was satisfied.

This has been the situation everyday! The kitchen is closed here, due to this VRE bug, so I have too buy food out most of the time, which is killing me financially, and physically.. ick! He's been so picky I have had to go at great lengths to get him his cravings. It's the chemo.. changes their tastes so drastically, and the nausea.. it's normal. But, i will do whatever it takes, because there is no way they are shoving an NG tube down his nose and force feed him with liquid supplements.

We are almost done!! If he is well by Tuesday when his pick line goes in they will send us home with home care. He will need his IV antibiotic every 12 hours.. so it will be better than just sitting here!!

I had a great birthday.. was able to get home and hang with my dearest friends...it was wonderful! The nurses spoiled me at the hospital with the birthday song, a beautiful cake, and lots of wonderful, thoughtful gifts. I was so surprised! It was nice that they recognized that it was a day for me. I usually don't celebrate my birthday. But this year it was nice to focus some time on me. It's been a tough year!

Avery is doing very well.. she's happy and healthy.. I have signed them both up at the YMCA again, free memberships!! So for now I will enroll Ave back into swimming and other activities..

TSN & Infection

Lyric was apparently on TSN today, they had an opening to the Olympics and he was on it! I havn't seen it yet but I'm searching!

It's also been confirmed Lyric has an infection, and they are treating him here for 14 days. I am so frustrated with this.. i just want my life back to normal, it's so close I can taste it. I hate making plans and having to break them.. it's tough.

There is always something..

So we are done the first half of his chemo.. things have gone really well. He was sick yesterday, but got through it with Atavan. He was as high as a kite... even had the munchies. But it's better than him feeling like he's going to die.

So yesterday he started a slight fever, they thought maybe it was from the chemo... but to be safe they took a culture from his hickman. He's maintained a slight fever, but they haven't treated with tylenol at all. The culture came back positive. So they are repeating the culture to see if it's not a mistake. He's also got a sore area on his neck, his left side if his face is bit puffy.. sheesh!! I thought we were free and clear! damn it!

So now they are deciding which antibiotic to give him.. and for how long.. it will all depend on his reaction to it and what they find in the cultures.

I am sharing a room with a woman and child.. he's 4 today. And a brat. She hits him, they curse at eachother.. he throws fits like you wouldn't believe.. and through the night she keeps the tv on, and doesn't ring the bell when her machine is beeping. So I have to get up and do it. The phone doesn't stop ringing.. and there is constant drama. She has 6 kids, one got suspended from school yesterday. This kid here has a rare form of cancer. They've been here for awhile.

Anyways I'm having Avery for the weekend at the Ronald McDonald house. I'll keep you all posted!