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!

And we're off!!

We've been at home so long now.. it's been wonderful. I took a mini trip to Montreal to visit my surrodaughter as I don't know when I will have the opportunity again. It was wonderful, I love that city. And if I were french I would move there in a flash. So full of culture.. character.

So back to reality today..

His counts are finally ready. I am not just waiting for a phone call to confirm a bed. There are no beds available so we are hoping on some discharges. What gets me is this ward in primarly oncology patients. But they also have a handful of anorexics that take up beds for months. I'm sorry, but these kids who have a life threatening illness, who chose NOT to have this have to wait for those who have a mental illness who choose to harm themselves. There is a mental ward at the hospital... so that is where they should be. err... don't even get me started.

So this is it. Final round. One step closer to normalcy for all of us. We are anxious to get to Hawaii so I'm hoping all goes well.

There is lots of sadness at the hospital.. 3 little ones I know who are not doing well at all. So it's going to be a hard stay.

Back to Mac

Tomorrow we are back at Mac, we were sent home again on Monday his counts weren't quite there yet. So here's hoping to tomorrow. If his counts are up, we're staying for a couple days to finish this bloody chemo!

Aside from that things have been great. We've all been happy and healthy at home. I've taken the house down from being sold, as I have a wonderful friend who has offered to move in with her son. So she gave her 60 days notice. We are very good friends so I'm sure it will be ok. I'm excited, and so are the kids.

That's about it... nothing else too exciting!

Sorry it's been so long!

Wow.. I'm so sorry all. I didn't realize it's been so long since I've updated.

Well, first off, we've been at home still. Lyric's counts are coming up VERY slowly. They arne't concerned with this at this point so I'm ok with that. I am just enjoying Lyric not being Neutropenic, and being at home. Mind you I have spent the last couple weeks overhauling my house... since it's not up for sale. I have run out of money and cannot afford it anymore. I tried to re-negotiate the mortgage, but in the end me caring for a house when my life is so up in the air is not a good idea. I need to rent an apartment to make life easier.

Jane has Lyric on a few nwe things to help get his counts up.. Angelica, and Vit C. So far it's helping a bit, but I have a small feeling we are fighting sickness here. I havn't been feeling the greatest.

Lyric is great!! It's been so long since his last chem that his hair is growing back and is not about 1/4 inch long.. he has eye brows and eye lashes.. it's weird to see him with hair! He likes it of course. He's been super healthy and very happy. He's really looking forward to getting this last round of chemo done so we can do his wish trip.. given to us by the Children't Wish Foundation. He chooses to go to Hawaii, and stay on Kawaii in a yurt or small eco friendly cottage off the water. He's definatly my boy!! No big resorts for him. He's a backpacking tree hugger like me!

Avery is doing very well too. She's super happy, enjoying school. We all went to her Showcase night at school. She was in a short play, and sang a song. She was great! She has a natural talent for acting and singing. She wants to go into acting class and get signing lessons. Fun!! I've been able to spend so much time with her, we are really enjoying eachother.

As for me.. things are going well. I have met the President of the Casino's here in the Falls, and he is trying to hook me up with a job in March. Which is right around the time when I need one. Yay! I also want to take my Holistic Nutritionists course too... but will have to save up for that. I may try and get a part time job for now anyway to help with having some money.

The YMCA, where we belonged for 3 years.. Lyric did Karate, both kids did swimming, and activity classes.. I worked out.. well they gave the kids a free membership for the year and gave me mine for $15 a month!! There is funding available for the kids called Pro Kids.. that pay for kids to keep active. I feel so happy about this because we all love the Y, it was such a part of our lives. But I was paying $90 a month before, and I can't pay that at all anymore.

We are back at clinic Monday to see if his counts are ready.. I have packed and unpacked the car now 3 times so lets hope his counts are up enough!! Let's get this last chemo over with!

Avatar & The Week

I took Lyric out for a LOA yesterday and we saw Avatar..he LOVED it and we had a great time. His counts are creeping up. Thankfully.

Lyric is doing great, he has been without fever since Tuesday evening at 10 pm.. he's otherwise normal and healthy. They are worried that the infection could have stemmed from his hickman, so they are keeping him on antibiotics until next Saturday. Sigh.. that sucks. It sucks being stuck in the hospital when he's perfectly well.. so they are giving us LOA's everyday but we are so far from home we may not be able to go everyday.. plus the cost of gas.. I'm broke!

Avery is doing great.. she is excited to spend the weekend with her best bud.

They are going ahead with his last round of chemo as soon as his counts come up enough. So soon.

We are almost there, we are almost there.. we are almost done.

Preliminary Results

We had the bone marrow test today. On our way home Lyric spikes a fever of 39.8. So we came back the hospital. When we arrive, the Ocologist comes to see us with the results from the marrow test. There are NO leukemic cells!!! Ya!

So the reason behind his counts not coming up is this lingering infection. And chances are it may be the same one, in his line. So they may have to pull it this time.

Also, he may not be having his last round of chemo.. apparently if there is too much of a time gap between treatments it doesn't make sense to do it because it won't have the right effect.

So it's just a waiting game again to see the test results and to see how long this treatment will be..

Phew! I AM SO RELIEVED!

Big Day

His counts have not come up.. in fact he's getting a platelet transfusion as we speak before his bone marrow test.

They are going to send the bone marrow for additional testing.. some of the same tests we had at the beginnning of diagnoses to see if there are other things going on molecular wise.

The Oncologist is still positive that it's the infection, she said he was an anomolie and that he's so healthy. Although if the cancer did return he would not feel any symptoms at this time.

We will get the preliminary results back tomorrow which will tell us if it's relapse or not.

I am being hopeful and positive it;s just the infection. It will be a long wait until tomorrow.

Love you all and please send positive energy to my little bumpkin.

Blood Counts Update

Unfortunately I have some sad news. Lyric's counts have not gone up. When given the news in clinic today I started to bawl. Lyric's nurse immediately said she was sorry and hugged me.. then a few other parents that I have gotten to know came over as well to offer thier support.

We are going in Tuesday for the bone marrow test which will determine what is going on with his blood. One of the Oncologists did speak to me and said that she still thinks there is a strong possibility that it's from the infection, and that the majority of AML kids succumb to infection and major delays through their chemo. But Lyric has done so amazingly well and has had no delays. She reassured me to not worry so much.. but then told me she can't guarantee anything and there is a possibility it's the cancer.

After the bone marrow test we will get the results either Wednesday or Thursday.

I went to take a nice hot bath last night, and my water was cold. So I went downstairs to find the hot water tank was cold. The service man came today and fixed it.. the pilot light was out. Ugh.. but yet again.. it's something else to deal with.

The furnace is working great, it's so nice to have heat again.

We are going to see Avatar tonight.. should be fun! Lyric is neutropenic still ,but I think we need some fun. We will be super careful!! Both kids are looking forward to it.

I contacted Direct Energy today, complained to the supervisor in the executive office. Her employee that I complained to the other day to do something, did nothing! He made notes in my account, and forwarded and email.. did no follow up and did nothing to deal with my situation. So his boss that I spoke to today was disgusted, and said she will talk to some colleagues and get back to me. I told her I was getting a lawyer and suing.

Yay to Monoxide detectors!

3 a.m., the CO alarm goes off.. reading 97 ppm. High level. In a dazed fog I awake and think about what I am to do.. I shut off the furnace and call the gas company. They then in turn contact the fire department and within about 5 minutes about 5 very lovely firemen were at my door.

They took their meter around the house, and found no CO. They checked everything over.. Lyric joked about me making pancakes for everyone... hehe. They asked about the furnace, I told them the story of how it stopped working and the repairman came.. and how the guy told me there was a crack in the heat exchanger and what he was supposed to shut it off.. but that the CO levels in the house were low so he would leave it on. And of course I know nothing.. I don't understand what heat exchangers do.. The fire chief says that he was supposed to shut the furnace down.. by law. And was quite worried and surprised he left it on. So he told me to leave the windows open a crack.

Then the gas guy comes to do his inspection. He waves his gas testing machine around and finds a leak coming from our water heater. Then proceeds to tell me he's got to shut the gas off.. so there goes our water and our heat. I then call Direct Energy back again to send a service repairman.

It's now about 9 a.m.. A different repairman comes and fixes the gas leak problem.. it was only a loose connector joint. I proceed to tell him about the furnace and what has happened. He becomes quite concerned. He then checks over the furnace and confirms the Heat Exchanger is cracked.. and yes, it should have legally been shut down because it will leak CO into the house.

I am just baffled.. how this first repairman would put my family at risk. We could have died. The second repairman was also in shock and called in a complaint for us. He was just beside himself that this guy would put us, especially with Lyric in the house at risk.

The Direct Energy sales guy comes at 11:30. Gives us 2 quotes .. one about 4200k, and the other close to 5000k. UNBELIEVABLE. And on top of that I have to jump through hoops to get about 1200k back from government programs... sigh.. like I have tmie and energy for that! And you have to pay to have the assessments done too!

So I called the management at Direct Energy to complain..the guy was shocked that the furnace was left on. So I explained that he put my family's lives at risk and that it's imcomprehensible that he would do that. He agreed and said they would try and do something to help me with a new furnace. Great.. but he said not for about 24 hours. I said I'm sorry, but I can't wait 24 hours. I have 2 kids, one with cancer that needs heat NOW. I have to get this done today. He said he would try. I am however going to look into a lawyer in regards to this matter as well. He broke the law and put my family at risk!

Paul had a friend at work who sent his friend here who does HVAC. He gave us a big break and is going to charge us $2500 cash.. so my wonderful and dear cousins are helping me pay for the furnace to get installed. I have no other choice.

Someone please wake me up when the nightmare is over. Ugh.. I'm not sure if I can take anymore.

Blood Counts

Went to clinic today.. through the 3 feet of snow Niagara was pounded with in 24 hours..

Lyric's counts have dropped back down. Of course his Platelets were at 16.. so I had to insist on a transfusion, since they were sending me away yet again without one. And with the snow squalls we have been having I pushed the subject.

The nurse also says that if Lyric's counts don't come up on Thursday when we come in, then the following Tuesday Lyric would have to go for a bone marrow test to see what's going on.. of course I ask.. well, what does that mean? She said well we think it's probably from his infection, but we have to be safe and test. I asked, is this normal? For counts to drop? and she says no.. then it was case closed.

I wasn't satisfied with that answer so I asked to speak to the Doctor. Of course I know the nurses aren't privy to share the info with me.

So I ask the Doctor.. he tells me something similar.. they think it's from the infection he just had, and standard procedure after 32 days of of no counts is to the the bone marrow test. Ohh..ok.. so then I ask, is it possible for the counts to not come up at all? and he says yes, then I ask, well if it's not the infection, what else can it be?

there is about 15 seconds of silence and this look comes over his face.

Well.. it could be that his Leukemia has returned.

My heart plummeted, and to save me he dove in with reassurance. He states that they are VERY confident it's from the infection, but there is a possibility its the cancer.

Then there was silence from me..

Ok, thanks. I appreciate now KNOWING what to expect.

Why do they not tell you, I get they try to be positive, but seriously. I don't like surprises!!!

So now we go back Thursday to see what his counts are doing and of course I am just on edge. worrying. My poor boy.. if his cancer is back then next step is bone marrow transplant. And Avery is his perfect match.

On another note, I'm getting quotes on the furnace.. there is a charity that I need to fill in paperwork for that will pay $800 towards emergency problems so I am doing that tomorrow!

Spoke too soon..

The furnace does need to be replaced. The heat exchangers are gone and it costs too much to fix it.. so we have to buy a new one. Great! The carbon monoxide levels are at the highest level before he had to tag and shut it down. I'm thankful to finally be warm... but scared about the cost and monoxide!

Off to get some new monoxide detectors!

Happy New Years!

We arrived home this past Tuesday.. the Doctors decided to take him off 2 of the antibiotics and his counts were starting to come up.

So we are back home. I just love being home. Mind you the house needed a good cleaning, and it took me a couple days to get things in order after Christmas. Our Christmas tree was dead.. not one branch had needles on it. The bottom of the tree had sapped over and wasnt taking in water. Oh well.. it was quite the mess to clean up.

New Years was great, we had some wonderful friends come with thier kids. I made some yummy food, and we played Wii Fit Plus.. it was fun!

Last night our furnace stopped working.. so we froze all night and this morning until the guy just came now. There was a blockage in the pipe.. thank goodness I didn't have the replace the furnace or anything.. phew! Our house is 15 degrees and we used an electric heater and huddled in my room. Happy New Year to us! I couldn't imagine replacing a furncae right now.. since I'm running out of money and have no job!!

Lyric is doing very well, he's enjoying being home. His counts are finally coming up nicely so we are back on Monday for counts. Then possibly back Thursday for his last round of chemo!

I have started thinking about what I am going to do to go back to work.. there is a course I would love to take but I can't make a living off that.. and there are no jobs here. I'm hoping I won't be forced to sell the house cause I can't pay the bills!

Happy New Year everyone.. I hope this year brings all the best for everyone. Including us!