Some Photos!

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!

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!

I hope this link works...

www.niagarathisweek.com/news/article/284932

Cerebella testing

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...

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!!

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

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

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.

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

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

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

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.

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

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

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.

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