Christmas Eve

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!

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

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

So far so good..

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!

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

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

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

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

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...

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

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..

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..

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

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

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!!

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!

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...

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

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..

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!

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.

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!

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

Stupid Old House.

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!

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

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...

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..

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.