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