Lyric's Fight

Life as it should be

2010-04-16T09:55:00.002-04:00

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!

2010-03-11T22:00:00.002-05:00

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!

2010-03-09T15:32:00.002-05:00

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.

2010-02-19T17:33:00.002-05:00

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..

2010-02-18T09:19:00.002-05:00

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

2010-02-12T19:53:00.002-05:00

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..

2010-02-12T11:51:00.002-05:00

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!!

2010-02-09T10:49:00.002-05:00

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

2010-02-03T22:05:00.002-05:00

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!

2010-01-28T20:31:00.003-05:00

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

2010-01-15T18:13:00.002-05:00

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

2010-01-12T20:24:00.002-05:00

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

2010-01-12T10:42:00.003-05:00

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

2010-01-07T12:40:00.002-05:00

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!

2010-01-05T13:21:00.003-05:00

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

2010-01-04T21:10:00.003-05:00

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..

2010-01-02T12:23:00.002-05:00

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!

2010-01-02T10:22:00.002-05:00

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!

Christmas Eve

2009-12-24T10:37:00.002-05:00

Today they tell us we can go home for the day... Lyric decides he doesn't want to go. The Doctor asks him why? He says I just don't feel like it. Then he snickers and says.. this is my home. The Doctor covers her face and says oh.. no, do we have to start making things uncomfortable here?

I would have pushed us to go, but he's actually tired today and we are having visitors today as well. I'd rather him feel rested up for a busy day tomorrow.

We would like to wish everyone a wonderful Christmas Eve.. enjoying family, music and food.. loved ones and nastalgia.

We are very fortunate to have a Christmas together, I'm going to enjoy every moment.

Christmas is almost here!

2009-12-22T21:53:00.002-05:00

Wow.. time has flown by.

Lyric has been doing so very well.. he is still on antibiotics.. and will be for another week or so until his counts come back up. Everything his blood has been making is still going towards repairing his poor little body from this infection.

They have however changed the schedule of his meds.. as of the 24th he will get them once a day for 3 hours. We've been given the choice to either stay at the hospital, go home, or stay at the Ronald McDonald house. So in the end I chose to stay at the hospital as much as Lyric wants to go home. I would have to return every day to the hospital for a 3 hours treatment.. which in real time would be about half my day with driving and getting him hooked up, getting blood tests, getting the antibiotics going.. then there is always the weather. Which is supposed to be bad this week.. freezing rain. So I don't want to take the risk. So we are going to work it out so that he gets the meds while he's sleeping. Then if the weather is good for the day I will go home and return in the evening. Makes sense right?

I've had Avery at the hospital for the last few days which has weighed on my last nerves! It's been a couple weeks already that I've lived in a small room in the hospital.. but having a super energetic 6 year old that needs to be entertained.. is tough. But now a friend has arrived.. another little girl she loves her age whose brother also has AML. So they are both happy, busy and it helps a bunch! Her parents are wonderful people. They own a chocolate shop in Paris, Ontario.

I'm tired.. but keep reminding myself that we are almost at the end. I have been by his side for almost 6 months now. Every moment of every day. It's been a tough road. But has made me a stronger woman. Mind you, this pinched nerve in my neck could use a massage!

Lyric has gotten spoiled this week at the hospital. He's held an Olympic Torch twice.. got to see the actual flame that came from Greece and will be lighting the ceremonial torch in BC, had lots of presents from Mike's Miracles.. a little boy who died from cancer and his family has started a foundation. Lots of treats...

And I have now seen two more kids this week come in with a new diagnoses of Leukemia. So I've offered my support to the families. I know it helped for me. One guy is a big wig.. and has actually offered getting me a job. Speaking of job.. I just applied at the hospital. They are hiring a Secretary for the Oncology department. Since I know so much about it and have a background in admin.. the pay is great.. it would make sense!

Photos

2009-12-17T12:46:00.004-05:00

Santa came to visit.. Lyric of course says.. that's Santa's helper cause he's brown... Oh Lyric.

So far so good..

2009-12-17T12:30:00.002-05:00

So we have been fever free for a few days.. which is great. we have the infection under control. However, Lyric's blood counts are not coming up so they are leaving him on the antibiotics for another week or so.. until his counts come up. Everything he is making is going towards fighting this infection.

So yes, we will be here for Christmas.. bah. We are hopefully going to get out to my Aunt Heather's on Saturday for a leave of absence for a family gathering... but we will have to wait and see how he weathers. He's been having allergic reactions to the heavy antibiotics... sweats, chills, and vomiting. sigh.

Otherwise he's great.. eating.. playing.. pretty happy most days.

Gooooodbye Fever!

2009-12-15T23:28:00.002-05:00

We have been fever free all day! knock on wood,, knock on wood!

They now don't think it's a fungal infection.. but they have asked for additional tests on the original culture they sent away that confirmed the Strep. So for now they have him on many antibiotic's to make sure he's being covered, then they will take him off one by one until he's a-febrile..

He had a great day...mind you he had a platelet transfusion, which he gets Benedryl for now so he slept for hours!

All the white blood cells he is making are being used for his infection.. so he is still at 0.

He ate very well today.. his appetite is coming back slowly.

His spirits are not so great.. I think he's at his threshold now for tolerating all this crap. Poor little guy. However he's very excited about Christmas.

I bought a little money tree yesterday and a couple strings of lights and decorated the little tree and strung the lights around the room. He was quite pleased when he woke up. The today he made 2 Christmas balls for the tree.. I'll post a pic when I can.

Thank you all for your positive support and energy. I could not go through this without all of you.

CT Results

2009-12-14T19:44:00.002-05:00

We got the CT results and it is confirmed.. Lyric has an infection in his lungs. And more than likely it's fungal.

So they are not taking out his Hickman as of yet, and they have changed around his meds. Again.

The infection may be hard to get rid of, but with the help of Jane, I am hoping it will be sooner than later. She has been more than helpful as usual.

They will go ahead with his chemo though.. once his counts are back up. So the nice thing is that he will be done, and we can focus on just getting him better.

We will be here for an estimated 2 weeks.

Surgery/Tests

2009-12-14T12:38:00.002-05:00

So they decided to pull his Hickman. That will happen tomorrow. I thought they were going to wait for the results from his CT scan which is scheduled for today.. (to see if there is a fungal infection) but they said they want to make sure they cover everything right now.

The Xray was clear.. but this CT will be a little more in depth. And of course, the surgeon comes in and says we are planning to remove the Hickman for tomorrow, but if there are any emergencies.. he will be put off.. of course my comment was isn't he an emergency? He's fighting for his life. 48 hours after they take out his Hickman, they will insert a PIK line into his arm.. at that time they will do his bone marrow and lumbar puncture t get ready for chemo. Ya, kick him when he's down.. I want to get the chemo done. But man, so much at one time for his little body.

Anyways.. his fevers are now 12 hours apart. And they are not as high. Which is great.. BUT there is still something there causing the fevers. His cough is getting worse too. It's this tickle in his throat.. and he says it's hard to breathe. So they are keeping a close eye on him.

They are starting him on a very strong antifungal med.. apparently it makes them feel quite sick. That's great.. just something else to add to the mix of shit he's on.. I tried getting them to put it off until he's done the CT .. but they said no, they wanted to start it now.

My adrenal fatigue starting to kick in again.. so I will have to try and be more diligent with what I eat, drink more water and take a trip to the health store and get something.

Avery is doing well.. she spent the weekend with her friend, and had a great time.

It will be difficult to gte Christmas stuff in order.. but I will try.

Love to all. Thanks for your support.

Test Results

2009-12-13T17:12:00.003-05:00

So I got back the results of the swabs they took to see if he had a virus and they were negative. Yay!! but, on the downside it means there is something else going on that they are concerned with. He has been breathing with difficulty, and has these coughing fits.. so they ordered another chest xray for today and a CT scan for tomorrow.

They think that it's Lyric's Hickman catheter, but first want to see the results come back from the tests. They are also going to start him on an antifungal.. which is a one month treatment. They won't be putting in a Hickman again since he only has one treatment left, but they may put in a pik line.. which is in the arm.

His spirits are not the greatest.. he's getting tired of being poked and prodded. Tired of having the fevers..

He did go 12 hours without a fever which is also great news.

He woke up this morning and said he had a great dream.. he woke up at home and all his friends were there. aww... i felt so bad for him.

Avery's Birthday / update

2009-12-12T16:07:00.002-05:00

We had Avery's 6th birthday here at the hospital. We tried to explain to her that this year we can't really have a party for her.. but that we would make it up to her. Grampa and Grandma and Aunt Heather came. I had decorated the room with a birthday banner, streamers, balloons and her very own roses. We ordered pizza, had a strawberry vanilla cake and just hung out while she opened her gifts. She enjoyed it, she was a little upset she wasn't having a party with her friends.. but it's just not a good time. Avery made friends with Anthony, a 13 year old mentally challenged boy (in wheelchair) who doesn't say much except hi, bye, and bella (he's Italian..) and giving him high 5's.. she turned on the music and danced with him. Talked with him... she was wonderful. At that moment I realized what a sole she is.. so accepting and patient. Loves all walks of life. She tried so hard to make him laugh and smile. I think she would work well in a field like that.

As for Lyric, his fever still persists. Just when he seems to be doing better, he slips back into the red zone. They are monitoring how far between and how high his fevers are. That way they will see if the antibiotic is working.. at this point they are thinking that they may pull his hickman.. even though the cultures are coming back negative. Apparently the antibiotic can kill the bacteria, but leave it dead in the body or tubes, causing fevers still. He got his diarrhea back.. and goes through chills. He is now starting a cough, says he has a tickle in his throat. They (the doc's) think there may be something else brewing such as a fungal infection. So they may start treating him for that if the fever doesn't let up in 24 hours or so. Fungal infections take months to get rid of... sigh.. He's still not eating much.. I'm pretty much force feeding him. Little bites here and there.. just to have something in him.

I feel so bad for him... he hates being here and now we know we will be here at Christmas. If anyone is able to stop by around Christmas to see him, that may make him feel better. We will be alone here pretty much.

I still have shopping to do.. so I will have to find a way to get out and get some done. We will be trying to manage Avery for the 2 weeks as well while she's off..

Thanks Tara for coming and visiting today.. it was so wonderful to see you and get out for a bit.

Scary day...

2009-12-10T20:46:00.002-05:00

He had a great night.. woke up and started his fever again. Right back up to 40.

All throughout the day his fever would go up.. and back down.. the Tylenol did nothing, but they still continue to give it. Even though they tell me it's hard on the liver. great.

He hadn't eaten all day.. they said they were going to put him on the TPN.. IV nutrition, but I said no.. give me the day. I'll get him to eat. And I did. It was difficult to force him to do it.. I made about 5 different foods.. he had NO desire for any of them. I said he could have anything he wanted.. and nothing tickled his fancy.

We got the results back from the initial tests they did in the Falls. He does have an infection. A streptococcus one.. and it's now in his blood. Common in AML kids.. they just don't have the membrane in the throat and mouth to battle it..and that is where it's commonly found. So it starts there then ends up in the bloodstream. Now it may be in his intestines too.. which is not good.

They started him on a new antibiotic.. he's now on 4. This new one gave him hives.. ugh. So they gave him benedryl of course. They said that they will have to give it every time when he gets the antibiotic. Sure, load him with more shit. gah.. i can't seem to wrap my head around mixing so many drugs together and how that effects the body.

So the infectious disease docs come in.. there were like 5 of them. They studied Lyric and determined that the new antibiotic was the best one.

They are sending his stool away for testing to see if he in fact has c. difficile or other bugs in it which is common.

They had an emergency echo done.. they came to the room within minutes. Apparently the infection can get into his heart and affect it. Ugh,, can it get any worse? He also had a x-ray on his chest and good news, that was clear!

He is sick, all day nauseous, cold, scared, mad, sad.. crying.. poor little guy upset that he has to wear a diaper cause he can't make it sometimes with the diarrhea. He's embarrassed.

So apparently tey may take his hickman out, it can be infected too, and treat the infection. It could take a month. Or as little as a week depending on his response to the meds. Then they would put him under again to insert a new tube to start his last round of chemo. ughhh!

I was scared out of my tree today. The docs and nurses are in our room constantly monitoring him. He's hooked up to machines to monitor his oxygen, which keeps falling, his blood pressure, and heart rate, which keeps going up. I was alone today too, which made it hard... lots to deal with. This infection CAN kill him.

This evening around 5 he perked right up, and said I want a pogo, and Annie's macaroni and cheese, marshmallows, and ice cream. HA! I ran out and bought all else but the marshmallows (eww).. he ate all of it. At this point, i didn't care what he was eating.. as long as he was.

Then a couple hours later he got a fever again.

We now need to wait 24-48 hours to see if the antibiotics work.. and if they don't they will just try another one. Sigh...

I feel so bad for him, right at the end and he gets this nasty infection. I spoke with Jane, my Naturopath and as usual she was amazing. She has him on Goldenseal, and more active bacteria.. so that should help. Goldenseal kills Strept and the bacteria will help with the negative effects of the antibiotics. So let's hope in conjunction he will get better soon and we will be home for Christmas.

Love you all and thanks for the love and support.

Fever returns

2009-12-09T18:22:00.002-05:00

His fever has gone back up to 40. When he gets to 40, he starts to vomit. So then he can't take another ibuprofen... you would think they ive it to him before it gets to 40 but they don't. They want to see how high the temp goes back up to... sigh.

They have taken another culture from his hickman catheter to see if that is the source. They said that usually if a fever lasts this long it's the hickman. They are waiting for the results from the culture they did in the falls to see if it came back positive or not. It takes about 48 hours to see the results.

They also sent away a culture from his little winky too..

So we'll have to keep waiting..

Update on little sicky..

2009-12-09T11:19:00.002-05:00

So he slept all day, and all through the night. They haven't been able to get his fever down at all. The tylenol isn't working. They resorted to giving him Ibuprofen. Apparently Ibuprofen compromises the platelets.. it can deplete them, as well as hinder they way they work. Having a fever also depletes the platelets..so it's not a good idea to give Ibuprofen. But they don't have a choice. So they will be monitoring him closely.

He vomited several times, all bile since he hasn't eaten. Had diarrhea. I gave him a sponge bath and noticed some extra yeast on his little winky.. so that may be a cause for infection too. All the cultures came back negative so far too.. so it could be viral as well. Although he is not coughing or has a runny nose. He keeps sweating, which means his fever is breaking a bit.

He is getting another hemoglobin transfusion shortly, his counts are low. That will also make him feel more energized. He just perked up about half an hour ago and ate half an organic toaster pastry and actually wanted to play video games! Good sign..

The little bugger had to save this till the end.. the Oncologist this morning said he's quite an exception compared to other AML kids. He's been so healthy and she said it was bound to happen.. but if it's just a yeast infection, still... that's nothing compared to the horrendous fungal infections most of them get.

Thank you all for your thoughts and healthy healing energies. We love you!

I spoke too soon..

2009-12-08T15:24:00.002-05:00

4 a.m., Lyric is yelling my name. I slowly open my eyes.. half asleep and groggy I get up to him throwing up all over his bed and floor.. I look at him and he's flushed. I take his temperature and it's 40.3. Way too high. So I call the Oncologist on call and he says to take him to the Niagara Falls ER.. he says his fever is too high to spend the hour driving to Hamilton.

We get to the Falls ER, and as expected they are not prepared for a child with cancer at all. They know nothing about his hickman, I had to show them how to use it. They made me very nervous. After several hours, they managed to get his fever down a couple degrees.. then he started to have the shakes really bad. He couldn't stop for hours. His white cell count is at 0, he has hardly any platelets and hemoglobin.. they have now arranged for an ambulance to whizz him down to Mac. It is now around noon. He gets bundled up in the Ambulance and I jump in my car. I had to take the car because we needed our stuff and needed to get back home.

All I can say is that it is a very horrifying and upsetting feeling to watch the Ambulance speed down the highway.. lights on, siren on and your child is in it. I cried for a moment.. then centered myself again. He will be fine.

We get to Mac, and we`ve now been here for about 3 hours. They can`t get his fever down at all. It keeps creeping back to 40... scary stuff. There is either a bad infection somewhere or his lack of red blood cells and platelets have given him a fever again.. I`m leaning on the side of infection.

He has slept all day... tired and not well.

Avery`s birthday is Friday.. I am trying to get her up here so we can at least celebrate here. We can always have a party at a later time. Poor Ave...

Holidays

2009-12-07T16:13:00.002-05:00

Can you believe the Holidays are upon us.. it only feels like yesterday when we found out Lyric had Leukemia. Time has just dissapeared. Although when I am sitting in the hospital room for days.. it seems like forever.

We are still at home!! I am amazed at Lyric's health.. especially after this last round. He has moments of being nauseaus here and there but nothing serious. Avery actually had a full fledged cold this week.. coughing, runny nose..I made her wear a mask for a couple days which she disliked. I hesitantly used Lysol wipes (nasty chemicals), and kept them apart as much as I could. I also had the help of the air purifiers which are supposed to kill the cold bug too. But I feel the natural remedies he is on are probably what helped him the most .. he's has been free and clear so far!

Avery's report card was great, the teacher had nothing but nice things to say about her.. a couple things to work on of course (like giving other kids a chance to answer questions, and printing clearly) .. but her teacher thinks she needs to take drama or acting classes as I do.. she's such a natural.

Lyric doesn't really get a report card, he does get graded.. but it's much different than the norm. He is however ahead of his class!

The next round of chemo is a strange one.. We are scheduled to start Dec 21, we stay for 2 days. Undergo a day of intense ARA C .. the neuroligically damaging chemo, and the next day is one that is administered into his leg bone through a big needle. And yes, he's awake for this.

We then go home for 4 days, and then return to hospital to to the exact same thing..

THEN WE ARE OFFICIALLY DONE!!

We will be monitored very closely after that.. and he will take a few months to recover to normal.

So we may potentially be home for Christmas! We've put up our real tree.. I just love the smell. Decorated the house.. and if we are home I want to have a dinner.

Test Results

2009-11-26T20:09:00.002-05:00

We got the results from the bone marrow test and lumbar puncture.. both tests are clear! He is still in remission.

He's having a real rough time being nauseous this time around.. so we are trying to manage that. sigh...

Round 4 underway!!

2009-11-25T13:01:00.003-05:00

His bloodcounts yesterday were juuuust good enough to do the lumbar puncture and marrow test. Then they admitted him and started chemo last night. We will find out the results of the tests over the next day or so... I'm hoping they are good!!

We are almost there.. one more round of chemo and life can return to some sort of normalcy. I still won't be able to return to work for a month or two after.. he will still be going through the effects of the chemo and his counts will take a bit to get back up. Also, a slew of testing that will be done to make sure everything is going well.

Today his chemo hit him hard, the Doc's say that the last couple rounds are hard... they get the sickest. So this morning there was a throw up session, and lots of nausea. So they ended up giving him a new drug.. Atavan. Of which made him high as a kite.. he kept saying he was on a rollercoaster and he saw me with 3 eyes.. he was slurring his words and laughing.. strange sight to see your child high. But i suppose it's better than the wretching of his gut and feeling like he's going to die. At one point he had the blankets over his head and was playing with his stuffed animal friend MAX from Where The Wild Things Are.. they were on an adventure! then Max came out of the blankets naked.. hehe..asked what he was naked he said they went skinny dipping. hehe..

Hopefully the week here will be uneventful!

Round 4!

2009-11-23T20:05:00.002-05:00

We are coming near round 4.. it was supposed to start today, but his blood counts (as of last Thursday) weren't good enough yet. So tomorrow we are back at Mac for blood counts to see where he's at.. if they are good then they will go ahead with the lumbar puncture and bone marrow test to see how the chemo is responding. Then we will start chemo right away!

I can't believe how healthy Lyric has been... going from practically living in the hospital to living normally at home for literally the last 3 weeks just amazes me. I am so thankful for this time we had at home with our family and friends.

Lyric and I are feeling rested and ready to continue this fight!!

Uneventful...

2009-11-19T09:52:00.003-05:00

There is not much new to report here! Things are good, Lyric has been happy, healthy and has had no problems.

Avery is great as well. She's battled a cold and Lyric (having no immune system) or I didn't get it.. of course he docs here don't attribute his excellent health to the natural remedies I have him on.

We are currently just waiting for his blood counts to come up to start his 4/5 chemo round. We are almost done!!

RIP Gavin

2009-11-13T21:57:00.002-05:00

In some previous posts I had mentioned a little boy named Gavin.. Lyric played with him while they were at Mac.

He recently underwent another bone marrow transplant that unfortunalty failed. Along with that he was suffering from a very bad fungal lung infection. They tried everything and unfortunatly today he passed away.

He was such an inspiration and sweet little boy.. he will be missed.

RIP Superhero Gavin.. we love you!

Hospital and Back..

2009-11-12T22:09:00.002-05:00

Monday night 8 p.m., Lyric started a fever with a headache. I called the on call Oncologist and she told me to bring him in. Lyric was NOT happy, and neither was I. There were no beds in the ward so we had to go to Emerg... of course the worst place for him. We stayed overnight, I slept in a chair, and we ended up in the ward at 5 p.m. the next day.

They did all the swabs and tests and everything came back negative. He had very low platelets and hemoglobin, almost non existent which could start a fever with headache. But with neutropenic kids they don't know for sure so they treated him for 48 hours of IV antibiotics and waited 24 hours to see if the fever returned. Which it didn't. I KNEW he was fine right from the start... he had no symptoms of any kind. So finally this afternoon today they let us go home.. hesitantly. The can be over protective, which is good I guess... but also not good. It's like chaperoning your kid to their first dance.. leave me alone! I said worse case scenario, we come back!!

Other than that, my parents are watching the kids for a couple days while I rest. I am tired.. and have reached my limit. When he came down with the fever, I just was not ready to go back yet. I was so exhausted from spending the week cleaning, organizing, dealing with the kids, fundraiser that I hadn't taken time to rest. But, I had no choice and had to go.. so the last few days have been quite rough on me.. and my adrenal fatigue has returned a bit. So I plan to take some time for me... to ground myself again and gain more energy to get through these last couple months. I need this to be a good parent and caregiver to my kids.. especially Lyric.

Avery is doing well, she is really starting to miss me.. I feel terrible. But I had a good talk with her tonight and told her it's going to be over soon and I have so many things I want to do with her.. I will make it up to her. When I am home (with the exception of the next couple days..) I spend oodles of time doing things with her.

And to my surprise, I have not been attacked anymore about getting that godforsaken flu shot. I think they now understand my beliefs.

What a wonderful weekend!

2009-11-09T07:06:00.002-05:00

Ooooohh it's been sooo nice to be at home. I am so happy and settled, and feel at peace.

We had a pretty uneventful week, so there was not much to write about thankfully. This past weekend however was quite exciting!

Friday night my wonderful and dear friend Shannon offered to watch my kids so I could have some time out for myself.. I was invited to an event that I really didn't want to miss. An opportunity to see my friends and relax. So she came to my house and stayed overnight with her 2 kids. I had a great night out... felt so good to have my own time away with some friends... releasing some of that negative energy within.

We awoke in the morning, the kids were joyfully playing together. I made pumpkin spice waffles.. had tea and then Shannon generously helped me clean my house all day! The house needed a real good clean. wow. It's amazing how the stress lifts and how good it feels once the house is nice and clean, smells great and looks good! Thanks Shannon, you made my weekend, you are an inspiration and amazing person...love you!

Saturday night was the Benefit for Lyric being put on by Picasso's (my salon)... yes, I have a tight relationship with my salon..(and a slight obsession with my hair..)
My dear and old friends from Toronto area came and stayed overnight to attend...thanks again girls.. it was such a wonderful treat to see you all and have your love and support! The folks from the salon did an amazing job, putting so much effort into helping us. I can't thank you guys enough. The music was wonderful! And we had a great turnout.

Lyric has been great over the last week, no more nausea and he's back to normal. He is neutropenic and with all this sickness around I decided to keep him inside. However,Avery woke up with a hoarse cough this morning... sigh. I knew at some point my blissful time at home would come to an end. I am hoping and praying Lyric does not catch it.

We are all doing very well, enjoying this beautifully warm and sunny fall weather.

H1N1 is killing me.

2009-11-03T16:11:00.005-05:00

Can you believe they would not let us go yesterday to come home until 3 medical staff had to literally ram the H1N1 shot down my throat.

You must get it for Lyric. I asked why?

Because he is immuno compromised. And getting the flu could be bad for him.

Yes, I understand that.. but can you guarantee me that he will be fine from getting the shot?

No.. we cannot. There is no testing done, and we don't' know enough.

Oh.. ok, so you want me to stick some more neurologically toxic crap into my son's system that hasn't even been tested, or otherwise use him as a guinea pig.

No, we are confident he will benefit from the shot.

Oh.. ok. So what about the boy, Cameron, who is younger than Lyric, also had a fungal infection but persevered though having H1N1?

Well, that's a good outcome, but there are bad ones, we don't' know how his body will react. We have other kids in ICU with it and they aren't so well.

Ok, so can you promise me he won't get Guillian Barre syndrome, or become autistic?

No. We can't.

Throughout this conversation there are looks of disgust written on their face. I have wronged their belief in the shot, and now I am a bad mother for not getting a shot for my son and potentially threatening his life. But I do have faith in Lyric's ability to fight off this flu.. of which is a completely normal flu. Maybe it lasts a bit longer, but statistically, there are no more deaths than the regular flu. And the deaths all have underlying causes.

What happened here? Why this big push? Is it stemming from the government? pharma companies? the media?

We have come to a bottleneck.. fear in on everyone's faces. People have no trust in the medical system, the government, the pharmaceutical company, the media.. and their own doctors. I seriously can for see a shift change in how people have had enough and are starting to take charge of their health.. they are starting to speak up, demand and ask questions. The sad part is who do you believe?

Through all the holistic research I have done, I have learned much about our bodies. They are efficient and quite powerful when treated right. We are capable of fighting off any sickness, and building strong immunities. With using what nature offers us, good whole food, healing herbs and vitamins, good hand washing, sleeping well, drinking lots of water and maintaining good stress levels we can overcome almost all sickness.

I have read that this shot was developed in the 50's to combat the swine flu. They stopped the making of it. There were more deaths and reactions from the shot than the actual flu. And you know the people who lived in that era are not getting the H1N1 virus, statistically they are the age group that is least affected. Why? Because they had it, survived it and are are immune to it. They are all fine! They have howevder remade the same shot.. yes, the one that killed more people than it saved and added another neurotoxic substance called Squalene... an adjuvent. And then with NO testing on the public they decide all high risk people should get it.. pregnant ladies, small children, or children with serious health issues (such as Lyric) first. Oh, thanks again for making them the guinea pigs.

No, I am still not getting this shot, I will endure the strong looks, the awkward grins.. all IN protection of my child. They seem to think I'm not protecting him, when in fact I am.

I truly wish some of these conventional doctors would get their heads out from the cloud they are in and question.. see that there are other ways to treat things other than shots, meds, chemicals...

I do see a change coming. I am anxious to see how the world will change in the next year. It will be exciting.

On another note..

Lyric an I are home and loving it of course. I am always afraid that the next day we will be back with some sort of fever... especially with this time of year. So I don't' even unpack. He is doing well, a little nauseous today but has energy and is happy.

Some Photos!

2009-10-31T22:19:00.013-04:00

Avery applying her lip gloss. "no, mommie, I can do it."

Watching BOB the Blob in 3D

Paul aka Mr T. I Pity the fool!

Avery, Miss Barbie Mariposa

Stick em up!

Lyric and I back in the 1930's

Dexter, sweet baby boy with a terminal tumor in his leg.

Lyric in his holiday jammies.

Couple of the amazing nurses

Happy Halloween!

2009-10-31T21:46:00.003-04:00

So I had my wish granted and we are now able to do the cerebellum test at 9 pm, then administer the chemo at 11 p.m.. Stupid...sheesh. Anyways, for the next 3 rounds I will have to remind them of this. Hopefully I won't have to jump through hoops.

We had a great visit today with Avery and Lyric's Dad. We spent time doing games and things together. We bought a webcam for the computer at the house so we can talk online now and see eachother. It's nice to be able to see them.. including Lyric's cat Annie!

Lyric wasn't feeling so hot today. Lots of nausea and vomited a bit. He could not eat hardly at all today.. I am not so concerned about this yet. Tomorrow is his last day of chemo and I am sure once home he will eat and feel much better.

We have been pushed for all of us to get the H1N1 shot. Including Lyric. Which I find hard to believe... immuno suppressed people are not supposed to get shots. Plus, as most of you know I don't believe in shots anyways. But if I had to for the safety of Lyric (like with the chicken pox shot for Avery) I will. I spoke to Jane about it and she stated that she could not give a yes or no answer because she doesn't know enough about the actual sickness. But she did have some concerns about the Adjuvent and Thimoserol (Mercury) ... after doing much digging and research I found many wonderful articles by trusted sources outlining the dangers of these additives. The Thimoserol is actually banned in most of Europe. These additives can cause major damage to your brain and immuno dysfunction. And not necessarily now, but in the future. There have been hardly any testing done on a shot that they put together so quickly, especially on children who are immuno compromised. I will not take the chance on any of us. Jane did say that it is the flu, and that with strong immune system and proper handwashing we should be safe. There are already reports from the hospital level (and of course they aren't supposed to talk about it) that there have been several cases of people coming in with immuno dysfunction (such as paralysis).

Here is a wonderful trusted website for great information if your interested:

http://www.vran.org/ (the vaccination risk awareness network)

Everyone of course has different views and concerns about this, and we are all panicking. Thanks to the media of course. But, to be realistic of course apparently you have a greater chance of dying in a car crash driving to get your shot than actually getting the flu itself. It will be hard for me with having Avery going to school and bringing home bugs... I pray she doesn't bring it home but if she does Jane says Tamiflu should be just fine.

We are in the newspaper!

2009-10-31T19:50:00.002-04:00

I hope this link works...

www.niagarathisweek.com/news/article/284932

Cerebella testing

2009-10-31T10:26:00.003-04:00

Sometimes I am amazed at the absolute stupidity here. Lyric has been going through chemo for the last 3 days.. and the protocol this time is only 5 days and it is not as aggressive as the first 2. However, the one drug he is on they must preform a cerebella test before administering the chemo.

The part I am bothered about is the night dosage at 11 pm.. Lyric is sleeping and tired from the day and they wake him up to perform this test. They make him walk a straight line, touch his nose, then the Docs finger then his nose, then the Doc's finger again.. but for the last 3 nights Lyric can barely perform these tests he is so tired and actually still sleeping. I have to spend 15 minutes getting him to touch the Doc's finger from his nose. And of course it scares the bejesus out of me because I think he's got neurotoxicity. The test is NOT accurate at all. It worries me that they go ahead giving the drug when he struggles to perform a simple task. He is so sleepy he can't even hear you. He continues to lye down and you have to get him back up again. It's terrible.

So last nights test I was upset. I walked out to the Nurses station and voiced my concern. They think it is a valid complaint and are going to see about changing the time on his chemo administration by an hour or so. But apparently it's hard to do because it's a written protocol. But I don't care, I will play mama bear if I have to and get this changed. It is not right. Stupid in my opinion.

Other than that drama, yesterday the kids on the ward paraded around for Halloween. It was so cute. I have some photos that I will post once I am home. Lyric was a 1930's gangster and I was a flapper. It was a really cute combination and everyone loved it. He got lots of treats, and Cadbury generously donated a LARGE bag of candy (including several bags of Halls??)

He is holding up well through this round, has some bouts of nausea and has lost his appetite. But I am not worried, this is the usual during chemo and once he's done he's back to normal.

Avery and Lyric's dad are visiting today and we are all dressing up for Halloween... it should be fun. Lyric has also not been neutropenic this stay, but looks like he will be as of tomorrow.

While we were at home this past weekend Lyric went to school Monday, his first day of school. He hesitated going afraid of how his friends would view him. But I took him anyways and stayed with him and he was fine. He enjoyed the day seeing his friends and being in the school environment.

Avery is doing well, she's as sweet as pie and I miss seeing her. Hopefully we will be going home Monday and we will STAY home until the next round 3 weeks later.

I also think we will be here at Christmas as well.. which will suck.

Back from being on vacation...

2009-10-27T20:17:00.002-04:00

It's funny, we arrived at the hospital today and ran into a Doctor we know, and she said Oh, your back again? I said no, we were on vacation and just came back home... lol, she laughed. The hospital feels more like my home than my own at this point which is truly wrong.

Lyric had his bone marrow test and Lumbar Puncture today, we should have the results back tomorrow. I am praying and hoping they are good! We are going to start his chemo tomorrow, and this round only lasts 5 days. So lets pray nothing else will keep him there. We are now in a room with a screaming baby and I have a chair bed that has a big metal bar sticking out of the middle of it. The hospital is full full full right now and they are short beds and rooms.. sigh.

Things are great, we enjoyed the weekend at home. Did a lot of visiting with friends, went to the pumpkin patch, slept soooo nicely in my own bed and didn't seem to get anything I wanted to get done, done. Oh well.. 3 days was not long enough. It was very hard to go back.

Lyric will also be in the Niagara This Week Newspaper, there is another upcoming fundraiser for us being held my Picasso's... my awesome Salon! Very exciting and I am so grateful and thankful to have such wonderful people in my life to help us... so so thankful.

helloo, it,s Lyric. i,had a nice time at home!!!

Lyric just decided to share there for a moment.. short and sweet of course. hehe.

Home for the weekend!!

2009-10-23T20:25:00.003-04:00

I was not expecting it at all... I really did think we were staying for another week at least. They got back the results from the MRI and it was clear. The dentist had told us the inflammation and pain and possibly the lymph node could have been a reaction to his molars that are pushing through. So all this time, the last 16 days we could have been at home. But they wanted to be over cautious and treat him with antibiotic after lovely antibiotic. I really do hope that he's not immune to them for when he really needs them!

We packed up (my goodness I have way too many things at the hospital..) and headed home without getting plagued by a fever this time. We went out to dinner, Avery brought a friend and they played. Lyric is NOT neutropenic right now, his counts are coming up nicely so we have a bit more freedom! Lyric will have a sleepover tomorrow night with his good friend Callum hopefully, he so desperately misses his friends and play time. Poor guy.

The house needs to be cleaned.. badly. It's stinky, and there is so much to do. I may just find someone to come while I'm in hospital for long periods of time because it's way too much for me to come back to with such little time.

I'm going out with my friend Robin tonight, so I better get a move on and make myself look half decent.

Oh, by the way.. I'm reading this FANTASTIC book called You Are What You Eat, By Gillian McKeith (apparently the worlds top Nutritionist) .. if you want to feel good, understand and read your vitamin deficiencies, and learn how to eat healthy it's a great book in understanding food and how important it is for our bodies to function at it's optimum. It's not a difficult or long read. It's quite interesting learning the different types of stools and what they actually mean... lol

Tests... more tests

2009-10-21T10:23:00.003-04:00

The dentists have cleared Lyric of any issues regarding his teeth.. they said there are lots of baby molars that are about to be lost soon as the big molars are pushing through and that may be causing the pain while he's eating things like raw carrots.

They are still concerned about a lymph node that is still swollen and are sure that is the site of infection. They are arranging yet another MRI hopefully for today. He is still on antibiotics.. I think it's day 14 now.. sigh.. poor kid. His counts are coming up nicely and they are hoping he will be ready to have his bone marrow test tomorrow. If not, it will be next Tuesday again.

Other than that things are great. Living in a hospital. whoo. hehe.

And for you folks out there reading this, please feel free to share anything in the comments section. I almost feel like I'm talking to no one.. lol

Another week

2009-10-19T11:10:00.002-04:00

Lyric will be seeing the dentist tomorrow, and the infectious disease folks... they will determine what is going on with his mouth and then what course of treatment because what we are doing now is not fully treating the infection. Looks like we will not be having the bone marrow test until Thursday, and we have to wait until his infection is gone and his numbers are a bit higher to start the chemo. Crappy. Just plain crappy. Of course they won't give us the pill form antibiotic cause they say it doesn't work as well as the IV one.. so we will be stuck at hospital.

The cleaning staff threw out my food from the family fridge. It was labelled as it was supposed to be. So I'm not sure what happened there but I wasn't happy to find my organics that I just bought thrown in the garbage. They reimbursed me with gift certificates for the cafeteria... mmm, yummy hospital food (uck).

I also have to look into getting a shower put into my bathroom upstairs. We only have a soaker bathtub upstairs and have to stop using the shower in the basement (and eventually rip it out) ... so if anyone knows anyone who can run a shower into my soaker tub or put in a tiled shower into the space now and who is also reasonably cheap please give me their info!

I am feeling great! Being able to get out of the hospital does wonders! I went home yesterday for a bit to do my fall cleanup in the garden... the house needs a big clean and needs to be organized. But I have no time. It bothers me to go home and see what needs to be done and I can't get to it. Oh well in time! I will have to do some Halloween decorating and get some mums... the house looks so dull!

Lyric is being James Bond for Halloween, I'm almost done getting his costume... all I need is shoes and a wig that resembles Peirce Brosnan... which I can't seem to find. Although with Lyric's bald head I could always draw it on...lol. Avery is being Barbie Mariposa... every year she's a barbie, princess or something really girlie. I can't wait until she's something a little more fun, but we have many years of costumes so it will come I'm sure!

The weekend.

2009-10-17T11:32:00.003-04:00

We are still at the hospital. Yesterday, they did a bone scan on Lyric's cheek and while they were at it they decided to do a full body scan. They give Lyric some RADIOACTIVE material in his IV to track the blood flow and it helps the machine see the bones. Ya, that's great give my son some radioactive material... it can't be any worse than the chemo. Ugh. Then she says to me his pee will be radioactive for a couple days...oh, great. thanks.

They are still concerned that there is something going on with the cheek. You can still feel a bump... and since the antibiotics have lessened the pain and inflammation they think it's an infection for sure. But for some reason, it's not going away too quickly. So I guess we have to wait until Monday to get the results.. Doc's don't work on weekends. Cause apparently people don't get sick on weekends. You should see this place, it's so dead.

Lyric and I have had some LOA's, we can get out for about 8 hours in the afternoon. So we've gone home a couple times, but other days we stick around here cause the drive is too far everyday. Yesterday afternoon I took Lyric to see Where Wild Things Are. He wanted to go so I checked into how busy it would be and it wasn't at all. So we had popcorn and enjoyed the fun film. So cute. Afterwards we went to this great store called the Horn Of Plenty I found not so far away to stock up on some more healthy food. Lyric has pretty much boycotted the hospital food, which is good because I don't want him eating it anyways!

We are waiting for his counts to come up, and according to his Oncologist the more chemo you get the longer it takes for the counts to come up. So I hope they come up this week to get this next chemo round underway.

Lyric's been great, we are enjoying our time together getting out a bit. Today we are going to my Dad's where Avery is staying for the weekend to spend some time.

Oh, and I also wanted to mention there is another benefit being held for Lyric in November by some wonderful folks from my Salon, Picasso's. They have organized a night with bands and all sorts of stuff.. I will post the details later as I don't have access to them at this moment.

I hope everyone enjoys this beautiful sunny weekend!

Staying Put

2009-10-13T19:37:00.003-04:00

The Oncologist says Lyric has to stay on his antibiotics until Thursday. They are concerned the infection is still there in his cheek.. and his counts have not come up yet to indicate if there still is an infection. They are arranging to have a Dentist come to see Lyric to make sure it's not his teeth, but they otherwise don't know what's wrong. It's weird. After they stop the antibiotics they have to wait a day or two to see if the fever returns or if he gets more pain. They are pushing his bone marrow test to Tuesday of next week, and will then start his next round of chemo on Wednesday. So we are here... for the next couple of weeks. It is now 5 weeks that I haven't been home, and will be 7 at the end of this chemo... and only THEN if he's ok we can go home. Sigh.... I'm so tired.

The adrenal fatigue has returned (no wonder with being told I'm now here another 2 weeks)... so tomorrow I am getting a massage and Reiki which helps out alot.

Lyric is great, no problems at all. He had a blood transfusion today so he wasn't allowed out on an LOA, but hopefully tomorrow he will be and we can get out for a walk or something.

It was Paul's birthday today so he brought Avery up and we had some Boston Pizza delivery... he opened some gifts and the kids made some cards.

Avery is wonderful, she's still singing and dancing.. and being artsy little Avery. I love spending what time I can with her. I am going to try and get her into a music class or dance.. she needs to have an outlet.

I feel really bad for the kids who have ALL Leukemia, their chemo protocol is over 3 years!!! I couldn't do this for 3 years!

Emergency

2009-10-12T17:36:00.002-04:00

Yesterday morning Lyric gets up at 7 a.m. and wakes me up because he has to go to the bathroom and do a number 2. So we get up, I drag his pole along with him down the hallway to the bathroom. I wait outside the room which is located next to the nurses station. There were oodles of nurses since it was shift change time. I stood there half asleep.... EMERGENCY... EMERGENCY... EMERGENCY is chiming from the load speaker in the hallway... the nurses JUMP up and look at the board above to see where the emergency button has been pushed. The run over to the bathroom where Lyric is, and my heart stops.. I said Lyric is in there, they try and get the door open, it's locked so they open it and he is sitting there merrily still taking a poo.. he smirks and says I just wanted to see what would happen.

Oh, Lyric.

I then told him to apologize which he didn't want to do out of embarrassment. So he made a card stating he was sorry for pulling the emergency cord and making you panic. lol...

So as you probably gathered we are STILL in the hospital. We have been granted LOA's everyday and today we were able to leave for a few extra hours so we actually came home. Home... it feels strange being in my own house. Like I'm only here visiting. I miss it dearly, the comfort, the smell.. the place where we can relax and enjoy the simple things like being able to go the bathroom and not have a line up out the door.. and just the mere silence.. no dinging of bells and IV monitors, no nurse intrusions throughout the night waking you up.. the walls are not closing in on me at home. I am thankful for my home! Floor creek noises and all.

Lyric's doing very well, the infection in his cheek has disappeared, but his counts are too low still. His body has not started to make his own red cells and platelets, and he is still Neutropenic.. his count is at 0 in fact. So they are concerned we would get home and he would spike a fever again. He needs to stay on antibiotics for a bit longer.. ugh... I hate so many antibiotics.

Doesn't look like he will get his bone marrow test tomorrow either since his counts aren't high enough either. They are thinking maybe Thursday.

It's been so quiet over the last week or so, everyone has been sick and busy. It's a bad season for colds and flu's already at the hospital. Not a good sign!

Happy Thanksgiving!

Oh, and Lyric says he's thankful for chicken (we had Swiss Chalet for dinner) and Avery is thankful for Lyric. aww...

Thanksgiving

2009-10-10T15:47:00.002-04:00

Surprise surprise we don't get to go home. Although he has been cleared of anything communicable, his cheek is still a bit sore and his Oncologist says that she wants him to remain on IV antibiotics for another couple days to be sure. Tuesday we are back at clinic for his Bone Marrow test, again to see if the treatment is working.

So we were however blessed with having LOA's.. (leave of absence) ... BUT, we only have until 5 pm, so not even enough time to go home. Especially with the holiday traffic all heading for the Falls. We decided to come to my aunts house here in Oakville.. just a change of scenery is nice. I'm sitting here looking through some cookbooks, sipping on some Algonquin tea, and nibbling on her homemade chocolate.

So for Thanksgiving we are coming back here tomorrow for the afternoon, my aunt is making a yummy stew, pumpkin pie with maple meringue.. mmm.. all I can say is that I am thankful Lyric is doing so well, and that we can spend the holiday with some family. It's too bad I may not see Avery, but we will see.

Happy Thanksgiving everyone.. xo

Fall has arrived...with a bang.

2009-10-08T21:11:00.005-04:00

Life is full of surprises...I just wish mine were not all bad ones.

Had the meeting with the Infectious Disease Doctor, Lyric's Oncologist, the Social Worker and myself.. the Infectious Disease Doc says she is not concerned at all with the mold in our basement. She said that in Lyric's condition he will get an infection from walking on the street, and even will get one while being in an isolated room. She said to keep him out of the basement, and to get a HEPA filter (in fact she said everyone should have one..) on my furnace. The mold in the basement she thinks is not a BAD mold and would not pose a huge issue. Then I was told to go home! ... ya! woohoo! I was a little agitated thought that it took me being at the Ronald Macdonald house for a week to wait for this meeting when she could have easily said this to me a week ago so I could be HOME for the week... sigh... just another glitch in our medical system.

I go back and pack up at the house, anxious to get the hell home. It's been almost a month since I've slept in my own sheets and bathed in my own tub. Lyric and I hop in the car, and are close to the highway... he says he doesn't feel so well. He feels nauseous... which is fine, common side effect. i give him something to help. Then I feel his forehead.. fever. Shit. Shit... shit! I call the on call Oncologist and she tells me to return to the hospital. BUT, the wards are all full and we need to go to emerg. No... no. This is THE WORSE place to take a child who has NO immune system in the middle of a stupid H1N1 pandemic here in Hamilton. We arrive to emerg and stay there until just after midnight, as they have shuffled kids around and have a room for us.

The fever disappears around midnight, but he has pain in his left cheek. His face is swollen and the Doc thinks he may have an infection. He's on a round of Penicillin, and feels fine but only complains of his cheek. Because he is neutropenic his body cannot process the infection like you and me. We get reactions to being sick where Lyric's are slow to develop. When his blood counts are down his body doesn't feel the actual pain of an infection. And as his counts go up he will start to get more symptoms and pain. Looks like we are going to be in the hospital again for awhile. Sighhhh....

I am for SURE fighting a cold now. Throat sore, sneezing... runny nose. So he will more than likely catch that on top of it too.

Tired is an understatement. I feel like a hobo, carting my belongings with me from place to place. Lyric is getting tired and frustrated with it all too. He was so looking forward to going home. I went shopping and bought him some new "thinking" toys.. so he is feeling a bit better being preoccupied with things.

Everyone is getting sick, this time of year seems to get us all. The kid next door to us in the hospital was at the Ron house with us and is now in with H1N1... praying now Lyric won't catch it. The whole ward is jammed full with signs posted on the doors stating you need to wear protective gear to enter the rooms...

The media has blown the H1N1 out of proportion.. it is no different than any other flu, it reacts to people the same way... the elderly and immuno compromised are most severely affected. So the emerg departments are overrun..

On a good note, I think my adrenal issue is gone. I feel a hell of a lot better being on this stuff from Jane.

Avery is wonderful, Paul is doing well. Life is going on.. I just can't wait until I get some GOOD happenings...

Short and Sweet

2009-10-05T17:02:00.002-04:00

Just a little update..

Meeting with Oncologist and the Infectious Disease Doctor is Wednesday.. either 2 or 4 p.m., still waiting to hear the time.

Lyric is doing well, so far no sickness... although he has started with a runny nose but it may just be the season.

Our stay here is still good, it's a nice place to be away from home. Avery and I spent some mommy and daughter time together yesterday, it was so nice to be with her.

Ok, back to watching the Young and the Restless.. hehe

Weekend

2009-10-03T20:29:00.004-04:00

I was sitting with my Dad and Step Mom today here at the Ronald McDonald House and the Weekend Manager asked my opinion on what we should have for dinner tonight.. there was nothing on the menu. You see, normally there are donations for dinners every night, places like Boston Pizza or even a group of students from the University will come in and just make some food in the gigantic kitchen they have here. So I suggested make your own pizza with salad. So he went out to the store an bought all sorts of stuff to feed about 30 people.

We spent 4 hours getting these pizzas and salad made. The reward was well worth the aching feet and back.. people were just so thankful and grateful for a home cooked meal. The pizzas tasted great! Then someone dropped off this delicious banana cake, and this wonderful woman who is a Relief Manager came in and baked about 4 dozen cookies. The house smelled like home on a Sunday.. families were sitting at dinner tables talking over each other and children giggling and running around. We are all going through hell, but find this wonderful sanctuary here at the House.

When you arrive here they go through all the rules of the House, and one rule is that you cannot be sick. No cold or flu, or they will ask you to leave. Completely understandable considering many of the kids here are from the Oncology world and are Neutropenic, or have little immune systems. Even for the parents as we don't want to risk catching something either. So today I watch this teen boy walking around... and around. Goes into the kitchen and makes himself some food, then wanders over to the games area and wants to play with Lyric. He sits about 3 feet away from him. About 10 minutes into the game he starts to cough and sneeze. Immedietly I panick and ask him, do you have a cold? He says yes....

Oh... No.... in slow motion I replay in my mind the cough and sneezes and realize they are in direct line with Lyric.. then I start to panic thinking about the typical 3 day cold turning into a 3 week cold in the hospital.

I then told him that he was not supposed to be here. (Oh, and let me add that I don't have a cold after all. It is allergies and this lovely Hamilton air..lol) So we go to the office and I said, I am so sorry to say but this guy is sick and just coughed and sneezed on my son who has NO immune system whatsoever. I said if he would at least stay in his room, then it wouldn't be so bad.

Right away they called over to the hospital for the parents to come back. They told the parents that the boy had to leave. Apparently he was 15, and they knew he was sick and was trying to hide it. They told him to stay in his room...but apparently he didn't listen. I felt terrible, I said to the Manager, can he not just stay in his room? He said, no. There are too many risks to children like yours.

So then we had to sanitize the whole place, of which I hate doing. I don't believe in using that Lysol stuff, but when you have these germs all around you now and you don't want to spend a month or so in the hospital trying to get over a cold then you do.

A little off topic here, but both my kids just fell asleep in record time.. Lyric was about 1 minute, and Avery about 2. Now they are both snoring. hehe. Lyric of course thinks he NEVER snores.. no way mom, not me!

I was called by my Social Worker yesterday, she told me that there is going to be a meeting Monday or Tuesday with the head of Infectious Disease, the Social Worker, the Oncologist and myself. She urged me not to do anything yet in regards to my basement. She had a very interesting conversation with the Infectious Disease Doctor (who knows everything about mold, living with mold, and treating fungal infections)..she said it may look good for me. Of course now I am very curious.. and hope that it will be deemed safe for Lyric to go home.

As usual, it's the waiting that kills me! Meanwhile I will keep myself busy here at the House! Today I finally met some folks I always see at the hospital. They have a 1 year old who has ALL Leukemia. She's so little.. she just had brain surgery to take a mass out. But she is doing well.

Living in Hamilton.

2009-10-01T18:26:00.003-04:00

I have now spoken to the experts on mold and I have a big problem to deal with. The mold in the basement IS circulating in the house. And yes, through the furnace as well. There are several options we have.

We are having an expert come in Tuesday and do a report. It's $400. The whole house will be tested from top to bottom to determine the level of mold, and the sources. He will then recommend some contractors to come. So what I gather is we will always have a wet basement, and when you have a wet basement you have to keep everything that can harbour mold out of it. Nothing cloth, paper, cardboard.. and I have lots of that down there. Paint on the walls an floor also harbour mold. And the lying bastards who sold us the house tried to cover everything up by painting the walls and floor. Which makes mold. Mold cannot survive on concrete alone. So, clean it up, take the paint off, and take everything out of the basement and leave only items that will not be conducive to mold. Second option and more permanent choice is to weather proof the walls, meaning dig around the house.. and to break the floor and re-cement. That choice is easily $10,000. The first choice I have no idea until they do the testing and I talk to the contractors, but I am assuming it's not nearly as much.

So Lyric and I are currently living at the Ronald MacDonald House next door to our hospital. Its a beautiful place and have many things to help us.. and Avery is staying with Paul and my friends on the weekends.

Life is definitely challenging at times.. and faces you with many road blocks. I'm going to be a medical expert and mold and basement expert...

My social worker is working on helping us get some funding through some charities. She also said with my permission she would call Holmes on Homes.. which I said yea! of course!

So we now have to wait and see what the report says.

We have clinic tomorrow for Lyric's counts, and I definatly have a little cold I'm hoping he doesn't catch.

Everyone please send some green energy... xo

Stupid Old House.

2009-09-30T20:30:00.002-04:00

I was inches away from leaving.. had the bags already in the car. When the Doc had come for a visit to see us off, and asked if I had any questions I asked some concerns I had with my old house.. our basement has weeping tile and is considered "wet" and although it's not always wet, there is moisture and mold down there. It's inevitable with 80 year old homes.. but because I had asked the Docs had a pow-wow and decided he can't go home. Because he has AML, he is highly susceptible to infection. And with the furnace coming on now it's circulating chemicals and spores given off by the mold. Lyric could develop a serious fungal infection.. and then it would be downhill from there.

So I spoke with the Social Worker, she is also one of those wonderful beings who is there to help me. She's my advocate, my spokesperson.. so she said wait a minute.. you can't just tell her she can't go home. She is a single mom, with another child and can't afford to pay to live somewhere else.. so Cindy (Social Worker) decided to make some phone calls. She is going to get a mold specialist to speak with the Docs so they can understand this better, and she also called an HVAC person who said that we should put on a hepa or UV light filter.. and we also need to do air testing. So tomorrow I am going to arrange some stuff and see if it's possible to go home. I have to discuss my findings with the oncologists.. and they will decide.

Ugghhhh... is it possible for anything else to happen?? What the hell did I do in a past life?

Lyric is doing very well, he went through chemo just fine, very healthy and rarely got sick. He's eating well, sleeping and is happy. He's been excelling with his schooling and is back to reading novels.

Avery is great. If we can't go home, then we will be living at the Ronald McDonald House for the next 6-8 months and Avery will have to transfer to a school close to the Hospital. She's pretty good with adapting well to things, so with some love and guidance I am sure she will be fine. But something I don't want to do.

We are back at clinic on Friday for his blood counts, and his next round of chemo is Oct 20th. So let's hope and pray he stays well for the next few weeks so there is no delay. He is still Neutropenic and will be for quite some time so it limits us a bit.. but we will make do I hope!

I am feeling a bit better, Jane has me on some stuff that seems to be helping. Along with the massage and Reiki I had I am on the path to normalcy again.. what am I saying? My life is far from normal. hehe.

I don't quite understand how some people get dealt with so much bad karma and others flourish.. this other lady I met a little while ago was at the hospital with her daughter. Her son had died a couple years ago from a type of strange disorder. They treated him through oncology, had chemo among many other drugs. Then she had a daughter who had the same condition. It's familial obviously.. and so terrible to be struck twice. He daughter is 18 months and is on serious steroids, which makes her into ginormibaby.. she's huge. Lovely lady and sweet little girl.

Off to bed. I'm ready to relax!

Half Way!

2009-09-25T21:11:00.003-04:00

We are halfway done the chemo, and things are going well. He's struggling with doing number 2's..(a side effect of the chemo) but I am trying to solve that naturally before they want to give him Lactulose and Senokot.. I have lots of experience with constipation as Avery suffered with it for a year before Jane fixed her.

This wonderful nurse we have Victoria, arranged a message for me today from this other nurse who works in the sedation clinic. She came into my room, sat me in the chair and messaged my shoulders after a long 12 hour shift. All I can say is wow! She said there were several knots in my back... so I will have to go and deal with that when I get home. I have these wonderful patches though, they are menthol and camphor and they radiate heat into my muscles... ahh.. They are called Salonspas and they are available at Asian Stores..

I have Adrenal Fatigue.. Jane is hooking me up with some goodies that will help.

Lyric played with little Gavin today, he came into the room and hung out playing games with Lyric. I took some photos and will post them as soon as I can. But Gavin would sit here and cough.. poor guy. He has a fungal infection in his lungs. And laugh...giggle and chat. His second language is hospital. He can tell you all sorts of medical facts, and he has a box where he puts his collection of medical supplies to play with. Throughout the day he will ask to "play" physio. So they will call the therapist and they will "play". So cute.

We are hoping to be home for Halloween. If we are in the hospital I still want Lyric to be able to dress up still. Apparently they all dress up here. How cute would that be. I would love to take photos of that.

Bone Marrow Results

2009-09-24T20:38:00.003-04:00

Lyric woke up this morning quite nauseous and groggy.. he ended up in a throw up session and then proceeded to eat his breakfast pita with peanut butter and 2 organic pop tarts.. hehe. Throughout the day he has felt some nausea, but they are pretty good at giving him his odanzitron and gravol.. seems to keep it manageable.

He got in another hour of school, and is actually ahead of his class! The teacher here spoke to Lyric's teacher at the school. He wasn't surprised Lyric was doing so well.

We got the news back from the marrow test.. and the results were faaaannntastic! They found NO Leukemic cells in the marrow. This is an absolute wonderful sign.. with the next 3 rounds of chemo under his belt I am sure it won't be returning! I hope and pray so anyways!

We have made friends with the little boy and his parents a couple doors down. He is 5, and simply adorable. He's been living in and out of hospital for almost the last 3 years and is getting ready for marrow transplant Oct 4th at Sick Kids. I truly hope he comes through. He is such an amazing spirit. I am going to take some photos of him tomorrow..

Today was a beautiful day outside, I managed to get to the grocery store and purchase some healthy food... as I just finished the rest of a bag of Lightly Salted Kettle Brand Chips.. hehe.

Tomorrow I actually may take several photos, if I'm allowed I may do some documentary style photos and post them.

And we're off...

2009-09-23T12:53:00.002-04:00

We are now day 2 into our 8 day chemo cycle. Lyric has been feeling well for the most part but is a bit nauseous here and there. He did manage to go to school today here in the hospital for an hour and a half.. which was great! Then we found out he's back to being neutropenic so he can't be out of the room anymore.

We arrived bright and early yesterday for a Line-O-Gram .. hehe, funny name for a procedure. I wonder if if was invented in the era of green shag carpets. This procedure was done to see if Lyric's hickman line was indeed clotted at the end inside his chest. Quite interesting procedure really.. it's much like an x-ray but they injected this color die into the tube and then take motion pictures... much like an old black and white film on a projector. The results of this test were great! No clot!

Then he had his bone marrow test. We are still waiting for the results. This test will let us know how well he's responded to the chemo, and whether he will move from low risk to intermediate or high... which would mean straight to bone marrow transplantation.

We have moved rooms 3 times in 2 days! The first room we were in we shared.. this young couple had 2 little ones and just found out their 4 year old had cancer. Not sure what kind. But they fought and fought.. and invaded my half of the room.. had so many people in the room, were so noisy... and just plain rude. I was trying to be nice but they weren't interested at all. So a nurse was in the room and witnessed them fighting and decided to move us. Our next room was with a teen boy. He looked frail.. very skinny. He was very reserved and quiet. I introduced myself and Lyric and told him if he needed anything to let me know. We all went to bed around 9, but he was up bright and early at 6-6:30 making all sorts of noise. He woke both Lyric and I up. I asked him if i was ok if tomorrow he could wait until 7 to make all that noise. Then when Lyric became Neutropenic we were moved to a private room... ahhhhhh. Much better.

I feel a bit better, although I will be talking to Jane about something to help with stress. I haven't heard back from my Doc so I am assuming all the blood tests are fine and he was right.. my sickness is brought on from stress. I am eliminating some of the culprits so I already am feeling better. Stress definitely manifests itself in strange ways! I think my good friend Robin was right and I should do some yoga and meditation. It's just not an area conducive to that but I think I will try!

Checking in..

2009-09-21T11:32:00.004-04:00

It's been a few days.. but not much has gone on really so no need to post. No news is good news!!

Today we went and had his counts and they look great! He had a slight fever yesterday, and they noticed one of his nodes on his neck is a bit swollen and Lyric says it hurts a bit. They said it could be nothing, or it could be related to his disease.. so they are keeping and eye on it.

The results from the echo cardiogram were in, and they said that it look as though there is a clot at the end of his tube.. they will be performing another test tomorrow to see how bad it is. She said it's common and not to worry about it. I guess it can be fixed!

I was reminded several times not to feed Lyric after midnight.. hehe.. he will be getting his marrow test tomorrow. That test will determine if he has responded to the chemo, and it will place him in a category of being low, intermediate or high risk. To this point he's been low risk. We should get the results back same day or next day. It's a nerve wracking test.. to see whether the fight will get tougher or not.. ugh. We will be checking into the ward again tomorrow to start his second round of chemo.

As for myself, apparently I don't have a kidney infection, and the bladder infection I have is under control.. so I am to go back to the Doc today at 3 to see what's going on.. I'm thinking maybe anemia? I haven't had much iron really.. and my own fault of course. At the hospital there isn't much of a choice. But, I have made some healthy food to bring and my good friend Robin who works at the health store is going to give me a great supplement!

Avery is holding up quite well, she is enjoying school and having fun dancing and singing. I wanted to get her into some classes but with everything going on there is not much time. Soon.

2nd Induction update

2009-09-17T18:39:00.003-04:00

I was up almost all night.. with a fever. Ugh. And of course I took nothing and just let the fever take it's course.. we have fever's for a reason!! They help us. They create antibodies. But man, they SUCK!

I've had this thing with my upper back and neck.. which needs more massage therapy. Then I manage to get a bladder infection. Around 8 p.m. last night I felt cold and achy.. no viral symptoms like runny nose or cough. Then my lower back began to ache and then I knew it was either my bladder or kidneys. It's been a long time since I've had one of those... hmm, could it be this wonderful cocktail of terrible sleeping, bad food mixed with a little stress??

So I managed to weasel my way into Jane's office today. I am such a thorn in her side now!! Poor Jane! She did the pee test and sure enough.. so instead of the usual antibiotics I'm on Uristatin and a woman's probiotic. So let's see how that goes over the next few days.. sigh...

So we made it to clinic this morning for Lyric's counts... and I did something terrible. I totally forgot NOT to feed him this morning. He wasn't supposed to have anything to eat or drink past midnight.. could it be the fever and lack of sleep the night before?? My brain was in a fog this morning and along with my rosy cheeks and black circles I goofed. BUT.. that being said his counts weren't where they wanted them to be anyways. They wanted them a bit higher. His white cells are at 2.9 (originally 77 when he was diagnosed!), his hemoglobin 96 (on the low side), his platelets were at 16 so he had a transfusion, and his absolute neuts were at 1.4!! He is NOT neutropenic! Yay!! It's funny cause he jumped up and down and said I can touch stuff now?? I can go out in stores?? Yay!

Since I fed him an organic pop tart and a glass of grape juice at 6 a.m., so the bitchy anaesthesiologist didn't want to put him to sleep (although technically she could have according to the Doc) .. but now it gives us the weekend at home, together and since he's not neutropenic we can do more things. We are back tomorrow morning for 7:45 for the MRI, and then Monday for counts again.. if they are good we come back again Tuesday for bone marrow test and start chemo Wednesday.. phew! did you get all that? It took her repeating this stuff to me a couple times before it registered in my foggy brain today.

I met another great mom today in clinic of a little girl who has ALL Leukemia. But she too has a very rare genetic mutation. She didn't even qualify for chemo, she went straight to bone marrow transplant and it was un successful. They are going with this foundation next week to Disney.. the mom though was so strong and it seemed as though she's accepted the fate of her little one. Also met this wonderful 13 year old boy today who had a brain tumor. He was full of life and just so happy and inquisitive.. he would tell me things about him then ask me a while later to see if I remembered.. then he would joke. He was there with his family and his 1 yr old baby niece.. he bragged about her non stop, held her on his lap and just played with her. So sweet.

dishes are done, garbage put out.. house is a mess. I do have a few extra days now to clean up. Ugh, time to get into bed and kick ass on this infection.

Home / Tests

2009-09-16T16:21:00.004-04:00

We've been home since Monday night.. and I've been so busy. They gave us a couple days at home before we have to go back for tests and possible 2nd round of chemo. So I had an opportunity yesterday to get all my running around done.

Between the terrible sleeping conditions at the hospital (a pull out chair..) and stress (I always carry my stress in my shoulders) I have managed to screw up my back and neck. I had a little massage therapy and my chiropractor made several adjustments... but no luck. Apparently the muscles in my neck are tight causing pain in the back of my head and a headache. I'm sure it will go away... maybe I'll have to sneak in a bottle of wine to the hospital.. hehe

Lyric is doing well, no problems at home. We are back tomorrow morning at 8:30 for his blood tests. We will see if his levels have gone up.. we are hoping he is not neutropenic anymore so we can do the bone marrow test and start his second round of chemo. I hate not knowing.. i have no idea if I should be packing and bringing 2 weeks worth of food, clothes and the other things or whether we are waiting till next week. And because it's an hour away it's not like I can just drive home and get it.. hmmm.. I guess I'll pack a bit and see.

Friday a.m., at 7:45 he has another MRI.. to see if the tumors have disappeared. I know the one over his eye has but I don't know about his leg. He still has a little pain.

His hair has almost all fallen out.. I managed to coax him into letting me cut it. He hated it at first but then learnt that it did look a little better.

I learned today too that some friends at the salon I go to are having a fundraiser in November. So amazing.. I am really fortunate to have such wonderful friends and people looking out for us.

I also learned today that I will probably have to sell the house when Lyric gets better.. I can't be working 7 days a week anymore to keep our home. I'm sad about that cause I really love my house.

Home maybe / Second chemo round

2009-09-14T12:24:00.002-04:00

Lyric has been fever free since Friday.. so today they are taking him off the antibiotics and they will wait and see if his fever returns. His Hickman tube is fine.. nothing came back positive for infection with any of the tests, which is common apparently. So we may go home today or tomorrow depending on how he does. Otherwise he's feeling great.. he just wants to go back home. And so do I!

So this week he will have all his preliminary testing done to see if he's ready for his next round of chemo. Today he gets an echo.. and Tuesday he was supposed to have his bone marrow test.. but his blood counts are not back up high enough yet. So that may happen on Thursday. They want to repeat an MRI sometime this week and then Thursday he comes in for blood counts to see if they are good enough to start Induction 2 chemo.

This nurse practioner came in today.. I didn't even know what that was. But apparently they are a type of nurse that can do orders etc.. a step under a doctor I guess, but a step up from an RN?? She wanted to talk to me about this week and what to expect, as well she also heard Lyric was on some natural remedies and wanted to know what they were. So I went thru them with her. She then tells me he shouldn't be taking the active bacteria or the Vit D.. So she leaves and a couple hours later the Oncologist comes in and says I hear you are attributing his wellness to the natural stuff.... I said well I don't know for a fact obviously, but Lyric is a healthy kid. He has excellent food, and the remedies he is on I'm sure do good. She doesn't really disagree of course but continues to give me reasons why he shouldn't be on them. And the biggest reason??? Well natural medicine don't have everything labelled on their containers so they can't trust them. And of course that there aren't enough clinical studies done. Oh, but we do know that they are ancient remedies that modern medicine was derived from... SO I called Jane... she doesn't think what she has him on is going to hurt anything, of course she has gone to great lengths to make sure of that. So she is again going to look into her recommendations again just to make sure. Including contacting a colleague, a Naturopath that practices at Sick Kids in Toronto. So I am back at this point of what to do and to make sure everything is going to work well together. I did however say I wanted to keep him on the astragalus, she seemed ok with that although she is going to look into it a bit more. hehe... and I happened to have a clinical study up on the laptop at the time (from NCBI, the National Centre of Biotechnology Information... so an accredited site) about the amazing effects of Astragalus.. so she read it.. thought it was good. But she's still unsure at the effects it may have with his chemo. Ugggghhhhh.... this is so frustrating. It seems to me that a pretty SMART idea for them would be to have an Naturopath on staff, or someone that they confer with that knows about Oncology and Naturopathy....to link the two worlds. The oncologist says they go through this all the time with parents.. wow, this is definitely an area that needs more research. If I could I would do it myself!

Ok..ok... that was more of a rant. Sorry about that.

So I may have a few days at home and want to spend a day cooking lots of food and freezing into containers for us here.. among cleaning, getting some other things done and getting ready for the next 10 day+ induction.

Oh, and another thing the Nurse Practioner mentioned was that AML kids in the past usually live in the hospital for about 5-6 months cause they are always sick with infections... one she mentioned in particular is a Neutropenic Colitis called Typhlitis.. an infection of the bowel. They are living on antibiotics for months basically being so sick all the time from infection. She told me that he WILL become very sick, and unhealthy.. and that how he is now is uncommon but it's sure to come..... great, thanks. That was an uplifting conversation.

Ok, it's 3 p.m., and I need my next dose of caffeine... and my exercise walking up and down the stairs. hehe.

Infection found possibly..

2009-09-12T22:59:00.002-04:00

So it looks like his infection may be coming from his Hickman catheter. The last nurse that put his dressing on did a shitty job and I knew it!! Lyric is currently itching it while he is sleeping.. so I called in the nurses. They looked at it and its red, looks a little infected. The nurse who changed his bandage this morning did a culture on it so we are waiting on the results to see if that's the source of his fever.

Goodbye

2009-09-12T21:47:00.003-04:00

Sad news everyone. The little girl 2 doors down passed away today. I had run into the dad and asked how things were and he said not good... we didn't get much more of a chance to talk because he had to run. Later in the afternoon I had noticed some hovering staff.. the Social Worker and the Child Life Specialist.. to help with the family to deal with the anguish. Then trickling in was family and friends all in tears. I had to go to the washroom so I exited the room and felt this huge rush of grief and sadness come over me. The Social Worker must have noticed it on my face and asked how I was. I said it's a sad day... she said yes. And she said more so for you because your new to this.. I will chat with you later about it.. but for now you may want to stay away.

I walked away and tears started to well up in my eyes and I felt such sorrow for the family.. and that beautiful little girl. I also felt scared. Scared because what if that becomes me? How am I going to deal with it? Some thoughts passed through my head about maybe feeling some relief.. after all your child is suffering and in immense pain. They have fought a long fight to lose to this deadly and life consuming disease. To let them go would be so damn hard, but I know in my heart I would feel relief that they didn't have to endure the pain. The chemo. The throwing up. The life that is non existent for them because they live in a hospital room and they are not able to be kids.. they can't ride bikes, run to catch the ball, or even swing on a swing.

I didn't get a chance to say anything to the departing family.. I do hope they know that they did an amazing job as parents to endure what they did for their little girl and they fought as hard as they could. I wish them well for the future.

Let's get to some good news... phooo... that was a downer huh.

Lyric is doing fantastic today. No fever. His white cells are down to 2.3, red cells are up at 87 (thanks to the transfusion), platelets are now up at 47 (also thanks to the transfusion) and his absolute neuts are at 0. Which means he's hit rock bottom of his neutropenia. He has absolutely NO fighting power against anything in him at all. But the good news is that it only goes back up from here! Hopefully for a few days at least.

I did mention that we should be home Monday.. although at this point I am not sure. He already had an Echo cardiogram scheduled for Monday at 10:30 .. which is good cause we are here already. But Tuesday he was supposed to come back for his Bone Marrow test.. to see how his bone marrow actually reacted to the chemo. That will also be a determining factor to see if he starts his 2nd round of chemo this Friday. WHERE the hell did the time go?? seriously! I feel like we just got home! In fact I bought all this delicious food and I wanna eat it!! grr.. guess I will have to make a trip home at some point to get ready for our 2 wk stay.

Lyric seems to be doing better with his hair loss. Although I have been trying to encourage him to cut the rest off.. he's got barely any left and what he has left is in patches. But he wants to keep what he has. Oh well.. it's not worth the battle. It's just hair.

He seems to be walking fine now and hasn't complained of his leg hurting much anymore. The residual effect of the chemo must have taken care of most of that tumor. I'm hap hap happy about that!

Do you think I should sneak in a treadmill into this room? Seriously I need some exercise. I went from working out 3 days a week for the last 3 years to taking the stairs here at the hospital when I go for coffee... hmm.. maybe at night when he's sleeping I should also go for a run!

Febrile

2009-09-11T21:34:00.004-04:00

Yesterday Lyric lost this little ol tooth.. it has been loose for quite some time. But with Lyric's Platelets being low I told him to leave it alone. But, I think he pushed it with his tongue and out it popped. Followed was about 20 minutes worth of bleeding. I panicked halfway through and paged the oncologist. But then it finally stopped and ahhhh... I called back and cancelled the page.

Afterwards Lyric, Avery and I were having a wonderful time. We were outside enjoying the warm sunshine with the neighborhood kids cleaning my car. It was a team effort... we all washed separate parts of the car. Of course there was a fight over the window washer... so I decided to take that job. Lyric had a great day. No complaints. Until about 7:30 and he stated he was feeling cold. So I sent him inside to get ready for bed. I came in a few minutes later and checked him temp... 38.8. Great.

So again I paged the Oncologist. She called right away and said I needed to bring him in. At this point he's boiling, but freezing... and complaining his head hurts. So it's now about 8:30. I call Lyric's Dad to come to my house to watch Avery. I frantically packed up.. and of course I get to the hospital and forget some important things.. you know how it is.

We are finally at the hospital and they have a private room ready for us in the Pediatric Unit. They come in perform all sorts of tests.. blood from his Hickman and a peripheral poke.. which of course scares the bejesus out of Lyric. They take urine samples and test all his reflexes and joints. They find a lump in his Lymph node behind his neck. Great.

It is now midnight and they still have poor Lyric awake.. but they are making sure they aren't missing anything, Finally the little guy gets to sleep. The CBC they did proved that Lyric's platelets were at 8. Holy Moly... they don't let it go below 20 usually, before giving a platelet transfusion. But fevers eat up platelets. A little while longer and Lyric would start having nose bleeds that wouldn't be able to stop and the slightest bump he would bleed internally. They gave him a platelet and a hemoglobin transfusion through the night. Lyric was up again around 3 shivering... nurse took his temp and he was actually cold. 35. The blood they transfused was apparently on the cooler side. So she grabbed one of those warmed flannel blankets and I crawled into bed with him and had to soothe and calm him down to get back to sleep.

Morning. We get woken up by a lady calling for Janet ?? They were in the room and discharged the day before. Then about 10 more people call in a span of an hour. Ugh... I just want to SLEEP!

The Doc comes in for a visit and says all the testing came back with great results.. nothing serious to worry about. They did think that maybe Meningitis because of the headache and his eyes were sensitive to light. It turns out it's just a virus.. and he's doing very well considering he has no immune system. No coughing.. runny nose... and I think it may be my fault. I had lowered his dose of Astragalus back to twice a day cause days have passed since his sniffles he had earlier in the week. I should have kept it up. Learning experience there!

The Doc also explains there is no concern for the Lymph node... that it's just the bodies reaction to the virus. But he'll keep an eye on it. He also mentions they got back the results from the bone marrow testing they did on Paul, Avery and I to find a match for Lyric for a possible transplant in the future. Avery is a PERFECT match. How amazing is that. Apparently it's rare. WOW, at least there is some good news! But that's not it! There is more! He continues to tell us the genetic testing he did for the mutations...(this can determine is his body will fight chemo or not.. like that little girl I mentioned in earlier posts... your body can start to reject the chemo) well... are you ready.... HE has NO genetic markers. Which makes him LOW RISK ... he's got a more substantial chance at fighting this!

I am just so happy. He sat there and smiled. Didn't really understand what the Doc was saying but says to me it's good news right mom? Yes by boy... good news.

So Lyric's fever disappeared around 1 pm which is wonderful. We should be going home Monday if all goes well and he doesn't go febrile again. They kept saying they were so surprised at how healthy Lyric has been and they said that AML kids usually are never home for a full week at a time. It's been over a week and he's GREAT! A little bump in the road but that's it. They are also amazed at how healthy he is through this. I am pretty sure it's because of my lovely Jane and the healing food he is eating... Jane says she is sure it's the remedies she has him on.

Well I have finished my delicious decaf Latte here at Williams Coffee Pub across the street... I can't get Wifi at the hospital. But this is a nice break when Lyric goes to sleep and I can catch up on the world beyond this.

The Clinic

2009-09-08T21:14:00.004-04:00

When we were first sent to McMaster, we didn't know exactly what department we were being sent to. We arrived to the 3F clinic, a place where I had been once before with Avery to see a Pediatric GI. It has an interesting set up... 3 receptionists for 3 different areas of this clinic. Gastro, Cardiac, and Oncology. When I checked in with the receptionist and realized we were in Oncology my heart started to pound fast and hard.. and I felt this sense of panic.

You enter this large open concept room, filled with lots of kids play areas. Toys are in abundance, and the energy in the room is warm and inviting. We had arrived at a time when the place was relatively empty. We were ushered into a room with several Doctors and Residents and were told of the unfortunate news. I also lost my damn nose ring in that room and scoured the floor looking for it while I had tears running down my face. I guess it gave me something to do other than sit in the chair.

We were in that room for about an hour. And when we opened the door the room was buzzing with people.. all these little souls with bald little heads. Some with feeding tubes and some that looked as pale as death. Some that were exuberant and playful. I stopped dead and stood there.. watching over the room and seeing these kids hooked up to their IV poles getting their chemo treatments.. Panic turned into me being mortified and utterly sad.

As time went by while we were staying in the hospital for Lyric's first round of chemo, the clinic was explained to us. We were given a clinical nurse of who, looks after us the whole journey. Zrinka, this wonderful and positive lady. Lyric is to report every Tuesday and Friday to clinic when he is in his "resting" period (which is between chemo treatments). We have to arrive at the Hematology lab no later than 9 a.m., and then straight up the clinic. Shortly after you arrive in the clinic and you sign in Lyric's blood counts are all ready. All the other little souls arrive in the morning as well so the place is hopping.. lots of kids and parents. Grandparents and friends. Everyone there has been going for awhile, the staff and patients are close...like going to your fave coffee shop and they know what you want.. and ask how your dinner party was over the weekend.

Ive met some wonderful folks there, it's nice that we all have the same understanding and feelings about all that is going on. And I've shared my views on Naturopathic Medicine.. and some have actually asked for Jane's number. woo!

I ran into the Dad again today. She is having a rough time at night, and she is in so much pain she doesn't sleep. Her liver is so enlarged..... He was about to get in touch with his Naturopath in hopes he could suggest something to help her liver. He seems to be doing well, and is very strong.

We went to clinic today.. and for the second time we were actually forgotten. I guess we are too new and we aren't part of their routine! Lyric's counts were good.. his white cells are at 6.1, his hemoglobin (or red cells) are at 93! Which means he's been making his own and they are on the rise!! (It's good to have the white fall and the red rise!) and his platelets are at 27.. of which I was concerned with. On Friday they were 30, and on Saturday they fell to 16. That's when we had to go to Emerg for the transfusion. So I asked if we could get one today and they said no. We have to wait until he's symptomatic of low platelets or by Friday when we are back again if they are too low they will transfuse then. I swear.. if I'm back there tomorrow I will be growling at someone.

Lyric is having a hard time with the loss of his hair. He doesn't want to see his friends (except his 2 close friends who have been by his side the whole time) or even go to school at all.. not even to pick up his sister. He says he's embarrassed and is worried of how other kids will react and what they will think. I keep reinforcing that he will be ok, and that people won't care if he's bald. And that people will understand. I think it will take a bit to get used to then he may be ok once he realizes people won't care at all. Poor little guy.. he's so sad. But I will keep reinforcing every day. I even pointed out the other boys at clinic today who seems quite happy and they were bald!

It's me Lyric!

2009-09-07T14:38:00.003-04:00

I feel great to be HOME I get to go places I want to go . I didn't like needles, or the blood pressure thing or getting finger pokes. I don't like that I have to keep going back to the hospital. I like that I can do fun stuff at home, and I love eating the food at home. Especially pasta! I like playing with my own toys and seeing my mom, dad and Avery.

I get to walk .which is hard. My leg hurts. I feel good though. I don't like that my hair is falling out. I feel scared that I have what I have. I feel unpopular because I'm different.

This picture is me and mom at the gardens today.

well i dont have a lot of things talk about so bye

LYRIC

Commenting..

2009-09-06T22:28:00.004-04:00

I guess there have been a few questions about how to post a comment. Please feel free to comment on any of my posts. I think you can if you go to the bottom of the post where it says comment.. click on it. Then write what you wish.. then under "Comment As" you choose .. if you don't have a google account or any other account they mention you can choose Name/URL and simply type in your name. Or you can enter Anonymous..

I think that works! I would love to hear anyone's comments, suggestions... or words of wisdom.

XO

p.s. I will be asking Lyric to post on here as well.. maybe something we can do tomorrow. I think he may like to use this as an outlet. I wasn't' sure about doing it until a friend mentioned it too. xo.

Photos...

2009-09-06T22:21:00.004-04:00

Hemoglobin Transfusion. Lovely red blood hanging from the pole and going into his Hickman Catheter. After you have several transfusions your body can start to reject it.. they can have allergic reactions.. but guess what? They have a drug for that.

Photos...

2009-09-06T22:16:00.004-04:00

Lyric didn't eat for days, dropped a few pounds. During chemo they lose their appetite.. so finally he blurts out he wants a cheeseburger and fries and pop.. something he rarely gets. So of course I ran to BK and picked him up a "large" burger.. hehe, he's now beyond the kids size.

Photos...

2009-09-06T22:03:00.003-04:00

I have been meaning to post some photos..

This one here is Lyric on day 1 of his chemo. Notice the beautiful orange colored poison being pumped into him.. this one is called Daunorubicin. This one can weaken his heart. It's pumped into him for 6 hours.

Ups and Downs

2009-09-05T22:05:00.004-04:00

Well.. we went yesterday to Mac to get his blood counts. They were wonderful!! His white count was still low (which is what they want to see of course!!) and he was starting to make some hemoglobin himself. He is still Neutropenic.. but that is to be expected they said for a week or two. He has a healthy appetite, sleeps well, has no nausea or vomiting, drinks his 2L of water daily, pees, poops... they are simply amazed at how well he is doing... and so am I! It feels wonderful to see how hard he is fighting and then seeing the blood test results as proof.

Today started out as a great day, we were to have some pro-bono family photos done of me and the kids before Lyric's hair all falls out. Another wonderful neighbor of ours was putting on a car wash and BBQ for Lyric today too.. had the fire department there, and man there were like 10 firefighters there with the Chief! So Lyric was happy to go into the trucks and they were so happy to meet Lyric. But we couldn't stay cause Lyric wasn't feeling great. I had noticed some petechiae.. little spots on his neck. A sign of low blood platelets. He also had lots of unexplained bruising.. so I got home and immediately called the on call Oncologist. She told me to bring him into Emerg at Mac for a Platelet transfusion. We got there at 1 p.m., and didn't get home until 10. A half hour transfusion lasted most of the day. Why are they so slow in Emerg?? They let us in right away, they had a room all ready for us. We were also told that Emerg was THE WORST place for him to be being Neutropenic. The nurses that were on then came in the room with masks on, but the next shift nurses didn't and I gave them shit! Ohhh.. he's wearing one, so he should be ok.. I said NO, that's not what I was told, and you are dealing with sick people all day! Man oh man.. momma bear can be very protective right now!!

So as Lyric was lying on the bed in emerg we noticed his hair falling out in clumps.. it was everywhere. He ran his hands through his hair and he would have a handful.. at first he was laughing about it and Avery chimed in.. poor sole was making the best of it. Then a few moments later said, Mom.. I don't want to have a shiny bald head. I have a big head. I reassured him his head was beautiful and being bald was ok.. and to be proud of it. I said if he wanted to wear hats, bandanas, beanies, or even a wig he could. It's going to be very weird for me to see him without hair. A constant reminder of how sick he is and how he's being pumped full of poison that is enough to make your hair fall out.

So Lyric was supposed to do a low risk activity tomorrow with his best bud Callum.. Lyric has always wanted to go to the driving range and learn how to hit. There aren't a lot of people there, and there is no real risk of injury.. so we said he could go. But the Resident Oncologist tonight said no.. noope, nooo way. Poor Lyric is not happy.

I have also learned that I cannot make ANY plans even for the day. Because it can change at the last minute.

I ran into the Dad I mentioned in one of my other posts, their daughter whom also has Leukemia and is dying is still doing ok.. they are spending lots of time with her and just waiting... how horrible is that. Waiting.

So we are back at the Mac clinic again on Tuesday for his next blood counts.

I am off to bed.. that Astragalus is kicking ass on this cold I've been fighting. But I can still feel it.. wondering if maybe it's allergies?? hmm... anyways some rest will help nonetheless.

Avery is doing very well through all of this, she's very supportive and even puts up with Lyric when he's in a grumpy mood (which is a side effect of the chemo too..). She is so happy and uplifting, just makes your day.

Home Sweet Home / BBQ Fundraiser

2009-09-03T21:07:00.003-04:00

Ahh.. there is nothing like sleeping in your own bed. Lyric and I couldn't wait to hit the sheets last night. I went and got some healthy groceries and Lyric has had a wonderful appetite. He's even enjoying my usual healthy choices like buckwheat pancakes, and quinoa..

He's doing well.. enjoyed the day playing with his toys and with Avery. He's being such a good boy.. back to the normal rules of the house. And I actually think he likes it. Structure is so wonderful.. kids really need it.

I have a shelf in my kitchen now dedicated to all the meds Lyric has.. my wonderful and amazing Naturopath Jane called me at home last night and we went through some new remedies for him. Vitamin D (lack of sunshine).. Melatonin (for a good nights sleep), and Active Bacteria (helps fight cancer, good for his imbalance and his weakened heart).. alongside the Astragalas root (for his immune system). So I feel sooo much better he's getting holistic care alongside the chemo. It will make him healthier and stronger so he can get through all this nasty stuff!

The BBQ Fundraiser was tonight. My very talented and wonderful neighbor put together this amazing BBQ, there were limo rides, bouncy castle, games for kids, water balloons, and a HUGE silent auction. The place had an AMAZING turnout.. so many people and so much love and support. I still am amazed at how people can come together in a time of need. Lyric was there with all of us, he wore his mask. Played with some of the kids..and got to meet lots of new people. He wasn't too happy however when he got stung on his thumb by a wasp. He screeeeamed! Those wasps are TERRIBLE this year! Everywhere! Do you remember the days when they used to spray the whole area for bug problems? I'm not sure if they did it here. But when I lived in Manitoba they sprayed the whole city for mosquito's.. man, that can't be healthy. Stupid.. stupid.

Went to Lyric's school today, spoke with his principal. We are working on a plan to have Lyric home schooled, along with schooled in the hospital..and the odd day he's healthy enough to go to school. He's a very smart boy, so maybe he will still be able to do his grade 3.. but if not that's ok too. It will keep him busy, and I can work with him at home too. Maybe I'll throw some more french in there! He didn't get to finish his french camp from this summer and he was learning so much.

We are off to the hospital first thing tomorrow for his blood counts. I am anxious to see his Absolute Neuts.. (this is the count that determines whether he is Neutropenic) .. considering we have him on Astragalus.. hmmm. I hope though that his white count is not too high again.. that's a scary number. The higher it is, it means the leukemic cells are producing at a very fast rate. I'm biting my nails just thinking about it..

Ok, I better get off to bed. Avery I'm sure is fighting a cold, and I think I may be too. Ugh!

Going Home!

2009-09-01T20:31:00.003-04:00

So it looks like we are going home tomorrow! His counts today were much better, they were happy. Although he still has an issue with the pain in his leg but it's come a loooong way! That tumor will just take a little more Chemo to disappear.

He had a platelet transfusion today as his platelet level was quite low.. it was at 10. If he was bleed for any reason he would bleed out.. it wouldn't stop. He blew his nose today and blood came out and I panicked for a bit... but then it didn't continue so maybe it was just old blood or because it's ridiculously dry in here!

Our wonderful Aunt Heather came to visit again today and has been bringing us food.. it's so much better to have home-made food instead of take-out. She's been a wonderful support for all of us.

Lyric was granted an LOA today (leave of absence), so he walked to the car without many issues and we went for a drive.. had the windows rolled down, letting the fresh air and the sunlight in. He asked for Swiss Chalet for dinner so we drove around Hamilton looking for one and finally found it. We grabbed a family pack and grabbed a picnic table here at the hospital and ate.. he really enjoyed it. His mouth sores are getting worse, so he's really got to stay away from the acidic foods.. it's hard trying to think if bland and soft foods for him to eat that will fulfill his dietary needs. He's a bit constipated (a first for him ever, and a side effect of chemo) so I will have to get some prunes, and such... oh boy.

Our Naturopath has started us on some Astragalas root extract, it is a very effective anti-viral. It's expensive, but well worth the money for all of us to NOT get sick while Lyric is Neutropenic. Jane has researched and found it completely safe for Lyric to take.. so we are going to get a little bit of immunity back into him naturally and that only means he can be strong enough to undergo his next treatment sooner!

As we speak they are "topping" Lyric up on red blood cells before we go home... imagine, having to "top" up blood into your child before going home. Some of this stuff is just plain messed up!

Lyric will have some restrictions while he is at home of course. He can't do anything DANGEROUS... like sky diving, deep sea diving, stunts, tight rope walking... hehe, no really he can't ride his bike, skateboard... anything that would pose a threat to bleed. Poor little guy will have to endure watching all the neighborhood kids do his favourite things. I will have to find him some other less dangerous things to do....hmmmm

Avery was up with us since yesterday, she wanted a "sleepover" with Lyric. I cleared it with the Doc and she stayed in his bed with him. It was sweet. Today she was a handful... but it was sooo nice to spend time with her. Maria, the Child Life Coordinator here spent an hour with her today. She gave Avery a cloth doll. This doll was to be Lyric. So Avery coloured on the face and clothing. Then Maria spoke to her about Lyric having Cancer and what that meant. She also pinned a hickman tube to it, and explained what it was for. She also poked it with needles, put band aids on, and added some medicine through the Hickman. Maria is simply amazing! She has the perfect way to talk to siblings so they understand what it all means and so she is educated and knows what to expect. Avery loved it and is now well versed on what a bone marrow procedure and a lumbar puncture is...hehe.

I am a super organized person. And what kills me is that I can't even plan a day ahead. Because everyday there is no telling what can happen. I can't even make plans for a coffee tomorrow with a friend. Even buying groceries... I will have to buy a few days at a time. Because at any moment we could be back at the hospital for who knows how long and I would just have to throw it away! This is going to be all new learning for me.. a lifetime of habits to change overnight.

Lyric has been nothing but patient and understanding. He's accepted his disease and is working pretty hard at going with the flow in order to get better. The only thing I'm struggling with is food. Chemo changes their taste buds, so he's become fussy over foods... and of course I think being spoiled while here has added to that. So I will have a lot of coaxing and pushing him to eat properly again.

Oh, and my friend Amy started a Facebook group for Lyric called Lyric's Fight.. if you care to join.

Ok.. time to catch up on a little Y&R..hehe.

The Fundraiser Results / Bump in the Road

2009-08-31T22:14:00.000-04:00

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.

Fundraiser night!

2009-08-30T13:39:00.000-04:00

I am going to the 4Triple5 Fundraiser tonight that was put together by my wonderful and dear friend Robin and many others who have also done so much to help. It is at 8 tonight so I am going to the Falls this afternoon to get a few things done before hand. It will be difficult for me to be at the fundraiser... It's all in effort to help us. But I am such a independent person and I don't like asking for help. But I really don't have much choice considering I am not working and have a house and 2 kids to look after. I don't know what I would do without the amazing efforts of all my friends and family. Thank you so very much!

Lyric has developed some sores in his mouth.. which is a side effect to the chemo. It can get worse, so we are hoping by taking care of his mouth well it won't. It hurts for him to have anything acidic so it's back to bland baby food... he's not going to like that!

He is also Neutropenic today.. and will be for about 2 weeks. As I mentioned in an earlier post being neutropenic is difficult. He has absolutely NO immunity at all. This will be difficult for me in some ways where I have to balance going shopping, keeping everyone who is symptomatic away, and make people wash their hands constantly... can't really go to public places. So we will be locked in the house for a couple weeks.

They said Lyric could go out again today for a couple hours but its cold, and we don't have any warm clothing here.. and can't go to public places so we are staying in.

His hair is starting to fall out. He's been really good about it, he's accepted he will be bald. He makes some jokes about it. He is going to look like a different boy without hair!!

Something kinda funny..

My cousin saw a psychic last night. This psychic knew about Lyric, mentioned what he had, and that he would be fine. But also mentioned he needed to been seen by a Naturopath... and this was all without my cousin saying anything!! interesting huh!

A brisk walk

2009-08-29T18:01:00.000-04:00

What a great day. Well for me anyways..

A good friend came to visit with her hubby.. we were chatting and one of our Oncologists came in and said Lyric could break free and get out of the hospital for a couple of hours!!

I got so excited.. jumped up and down.. woohoo!! a break away... time for fresh air and to be out in the real world. Lyric... not so excited. He has fallen into this comfy place here in the hospital where he is spoiled. Lies in a bed all day, gets food delivered to him (mostly CRAPPY food of course), gets to play video games for hours, gets new toys delivered by friends and family. He is so enjoying this life and is using it! Of course you feel sorry for your child going through something like this so you tend to bend rules...but really that's not helping him or me. He's become rude at times and has fits like a 2 year old. He sometimes even uses his leg pain to get out of walking. Of course I'm big bad momma... always telling him to stop playing games, eat something, take his meds, and take a walk. So yes, big mean momma forced him to go outside for a walk.

The nurses disconnected his IV and we got him ready to go outside. We walked around the McMaster University grounds.. the sun was shining, and it was so nice to get fresh air. My parents arrived and joined us. I took some photos and an hour later Lyric was ready to go back inside.

I had some alone time with my friend for some lunch, which was a great break. You start to go wonky in a place like this...cooped up in a room 24-7! There are so many other kids in this ward who have cancer too.. and it becomes a very depressing place to see how sick they are, feeding tubes in their noses, frail bodies and bald heads.

I was told today "I wish I had another mother!" ... yes, after telling him he couldn't play anymore games. It hurts yes... but I know where it's coming from and I know it's not true. Before he went to bed tonight he looked into my eyes and said "I'm sorry for what I said today mom.. I love you" .. aw my sweet little man.

Blood Counts

2009-08-28T18:39:00.000-04:00

We have been educated on blood counts.. something that is very crucial to cancer patients undergoing chemo.

So Leukemia is cancer of the blood, Your bone marrow creates your blood, and in Lyric's case his blood cells have garbled information. The cells are dividing and dividing but not maturing. And of course with Lyric's type of Leukemia this happens at a very aggressive rate. The chemo kills the blood cells being produced in his marrow.. it's the white cells we want to kill. But of course it kills the red cells and the platelets as well.

Everyday Lyric gets blood taken twice, one in the morning and once in the evening. They run a CBC (Complete Blood Count) so they can determine how well the chemo is doing.

We get this sheet of paper every morning with the "numbers".. and of course you can't wait to get these precious sheets of paper to see how he is doing.

Now, we want his white blood cells to get down to virtually zero. And of course you know that you need white blood cells to fight infection. The good part of the white cells is called Neuts.. so when his white blood cells get to a low number (being .5 or lower) he is considered Neutropenic. That means he needs to be in lock down.. he cannot be exposed to anyone or anything. Any cold or flu could cost him his life. This neutropenic stage is usually 7-10 days into his chemo and there is no way of knowing how long he stays this way.. depends on his health.

Today his red blood cells or Hemoglobin has reached below 70.. that means he could become very ill... head aches, pale, lethargic... and not healthy. His level today was 65, BUT he was in great shape. Once that hemoglobin number gets to 70 or below they give a blood transfusion. It will give his body more energy and help him get a little healthier.

So today they come in with this bag of blood. Strange concept really.. to see this blood trickle down into the IV line and then run into his Hickman line in his chest.

Of course there are side effects to having transfusions, one being your body learns that it is foreign and starts to refuse them... and sometimes cause allergic reactions. So they manage this with drugs... of course.

He is starting to walk much better...well, I guess I should explain. Lyric had 2 lesions or tumors. One was on his eye, causing his eye to be puffy and the other one is resting on a nerve near his legs. The one that is on his nerve is causing him to have walking problems with his left leg. Chemo should take care of this in time. But they are monitoring this frequently just in case.

Spoke with his clinical nurse today, she's wonderful. She is our nurse ongoing through this whole process. I told her about my naturopath and she thought it was wonderful. She understands and thinks anything to help Lyric get better faster to get through his chemo faster is wonderful! So I felt much better at least having someone on my side!!

So we only have a few more days here. I will be going to the Fundraiser on Sunday at 4Triple5 on Queen St... it will be nice to see everyone who has helped support us, a good time to thank and appreciate everyone.

Diagnoses

2009-08-27T21:45:00.001-04:00

Lyric was diagnosed with AML Leukemia on August 17th. We have been at McMaster Childrens Hospital since then while Lyric undergoes aggressive treatment for his cancer.

10 days before we came here Lyric experienced headaches, and pain that started in his neck. A visit to the Doctor and a prescription for antibiotics for an infection did not make sense. Over the 10 days the pain travelled down his arm, to his leg. I took him to the Naturopath of which had me take him to the emerg right away. Tests revealed that Lyric had extremely high white blood cell counts. We were then sent to McMaster for futher investigation. 2 hours after being here our worst nightmare was confirmed. Lyric had AML Leukemia.

His Cancer is very rare and only has a succession rate of 50%. He has 5 rounds of chemo, which run for 28 days. 10 days in hospital and 3 weeks of rest.. while at home "resting" we will be coming back to the hospital twice a week for blood checks.

This disease does not hereditary, there is no way to know how he got it. But an 8 year old bright, sweet and lovable boy does not deserve to have it.

He is in for a long and hard fight. He has lots of love and support and we are going to get him through.

Please feel free to contact me blog here.

Apparently I'm an alien

2009-08-27T20:27:00.000-04:00

For centuries we have cured and healed ourselves using nature before the chemical evolution began and things like White Willow Bark was turned into Aspirin. I am a firm believer that good food heals, and I clearly choose nature over chemical.

Lyric doesn't have a cold, the flu or a sinus infection. I can control his health care in those situations and give him homeopathic remedies... but with Leukemia I am faced with the hardest moral decisions anyone could face whose child is facing death.

What choice do I really have in healing a child with Leukemia? I have tremendous faith in natural healing, but when it comes to life or death of your child you choose what is proven to work. And although I know there are natural ways to heal Cancer I don't think I trust it at this point.. the risk is too great.

Painfully I standby and watch Lyric have poison pumped into him.. it's now going onto day 7 of 10 days. He is pale, nauseous, and will lose his hair in a few days. He is on only 3 chemo drugs, but on 6 drugs to manage short term side effects of chemo..and the long term effects, well there is nothing you can do with those risks. He comes to the brink of death with chemo meds, lowering his blood counts to the point of death... and then his poor battered body has to rebuild itself...5 times over. Then let's pray it doesn't happen again. Oh, and did I mention that one of the chemo meds can actually cause Leukemia. Yes, that's right. either the same type or a different one. But the odds of using this drug to kill the current Leukemia are greater than it causing another.

The nurses come and administer the chemo with gloves, a blue over-coat, goggles and a face mask. They politely ask to see Lyric's name and number printed on his ID bracelet and then inject the cyto-toxic substance into him. They give me gloves to handle Lyric's urinal... it's not safe to touch his urine...

I have accepted this painful choice of choosing chemotherapy for my child to survive. I still am working with my ever so wonderful Naturopath... Jane. She has warned me that the big bad doctors here will not like that I choose natural anything over their multi million dollar kick backed wonder meds.. and that is true. They look at me like I'm an alien when i mention that I AM working with a Naturopath and have repeatedly warned me NOT to mix the 2 worlds. I of course have total faith in my Naturopath and she will work closely with me trying to heal and nourish Lyric's battered and chemically infused body. But even the mention of this to my family and Lyric's dad causes them to lose faith in my beliefs.

I had to gently remind these folks that Jane healed Avery of her tummy problems (in 2 months!) after seeing countless Doctors in the western medical world and was prescribed every laxative known. She also cured 16 years of menstrual pain that I have taken very strong meds for ...for 16 years! She did this in 2 months as well.

I now have to sell my beliefs and trust to my family. I am Lyric's mom and have spent many years learning about natural healing...I obviously want the best for my kids. I wouldn't want it for him if I thought it was experimental or it would affect his chemo.

In the eyes of the doctors here I am green with horns... they cringe when mention anything like Beet Root Juice, or Astragalus root...

Jane warned me to not even say anything to them, because they usually blame anything that goes wrong on naturopathy, and will try to deter me to use it. But I will stick to my love and belief of nature and healing..

What would you do??