Wow.. I'm so sorry all. I didn't realize it's been so long since I've updated.
Well, first off, we've been at home still. Lyric's counts are coming up VERY slowly. They arne't concerned with this at this point so I'm ok with that. I am just enjoying Lyric not being Neutropenic, and being at home. Mind you I have spent the last couple weeks overhauling my house... since it's not up for sale. I have run out of money and cannot afford it anymore. I tried to re-negotiate the mortgage, but in the end me caring for a house when my life is so up in the air is not a good idea. I need to rent an apartment to make life easier.
Jane has Lyric on a few nwe things to help get his counts up.. Angelica, and Vit C. So far it's helping a bit, but I have a small feeling we are fighting sickness here. I havn't been feeling the greatest.
Lyric is great!! It's been so long since his last chem that his hair is growing back and is not about 1/4 inch long.. he has eye brows and eye lashes.. it's weird to see him with hair! He likes it of course. He's been super healthy and very happy. He's really looking forward to getting this last round of chemo done so we can do his wish trip.. given to us by the Children't Wish Foundation. He chooses to go to Hawaii, and stay on Kawaii in a yurt or small eco friendly cottage off the water. He's definatly my boy!! No big resorts for him. He's a backpacking tree hugger like me!
Avery is doing very well too. She's super happy, enjoying school. We all went to her Showcase night at school. She was in a short play, and sang a song. She was great! She has a natural talent for acting and singing. She wants to go into acting class and get signing lessons. Fun!! I've been able to spend so much time with her, we are really enjoying eachother.
As for me.. things are going well. I have met the President of the Casino's here in the Falls, and he is trying to hook me up with a job in March. Which is right around the time when I need one. Yay! I also want to take my Holistic Nutritionists course too... but will have to save up for that. I may try and get a part time job for now anyway to help with having some money.
The YMCA, where we belonged for 3 years.. Lyric did Karate, both kids did swimming, and activity classes.. I worked out.. well they gave the kids a free membership for the year and gave me mine for $15 a month!! There is funding available for the kids called Pro Kids.. that pay for kids to keep active. I feel so happy about this because we all love the Y, it was such a part of our lives. But I was paying $90 a month before, and I can't pay that at all anymore.
We are back at clinic Monday to see if his counts are ready.. I have packed and unpacked the car now 3 times so lets hope his counts are up enough!! Let's get this last chemo over with!
Thursday, January 28, 2010
Friday, January 15, 2010
Avatar & The Week
I took Lyric out for a LOA yesterday and we saw Avatar..he LOVED it and we had a great time. His counts are creeping up. Thankfully.
Lyric is doing great, he has been without fever since Tuesday evening at 10 pm.. he's otherwise normal and healthy. They are worried that the infection could have stemmed from his hickman, so they are keeping him on antibiotics until next Saturday. Sigh.. that sucks. It sucks being stuck in the hospital when he's perfectly well.. so they are giving us LOA's everyday but we are so far from home we may not be able to go everyday.. plus the cost of gas.. I'm broke!
Avery is doing great.. she is excited to spend the weekend with her best bud.
They are going ahead with his last round of chemo as soon as his counts come up enough. So soon.
We are almost there, we are almost there.. we are almost done.
Lyric is doing great, he has been without fever since Tuesday evening at 10 pm.. he's otherwise normal and healthy. They are worried that the infection could have stemmed from his hickman, so they are keeping him on antibiotics until next Saturday. Sigh.. that sucks. It sucks being stuck in the hospital when he's perfectly well.. so they are giving us LOA's everyday but we are so far from home we may not be able to go everyday.. plus the cost of gas.. I'm broke!
Avery is doing great.. she is excited to spend the weekend with her best bud.
They are going ahead with his last round of chemo as soon as his counts come up enough. So soon.
We are almost there, we are almost there.. we are almost done.
Tuesday, January 12, 2010
Preliminary Results
We had the bone marrow test today. On our way home Lyric spikes a fever of 39.8. So we came back the hospital. When we arrive, the Ocologist comes to see us with the results from the marrow test. There are NO leukemic cells!!! Ya!
So the reason behind his counts not coming up is this lingering infection. And chances are it may be the same one, in his line. So they may have to pull it this time.
Also, he may not be having his last round of chemo.. apparently if there is too much of a time gap between treatments it doesn't make sense to do it because it won't have the right effect.
So it's just a waiting game again to see the test results and to see how long this treatment will be..
Phew! I AM SO RELIEVED!
So the reason behind his counts not coming up is this lingering infection. And chances are it may be the same one, in his line. So they may have to pull it this time.
Also, he may not be having his last round of chemo.. apparently if there is too much of a time gap between treatments it doesn't make sense to do it because it won't have the right effect.
So it's just a waiting game again to see the test results and to see how long this treatment will be..
Phew! I AM SO RELIEVED!
Big Day
His counts have not come up.. in fact he's getting a platelet transfusion as we speak before his bone marrow test.
They are going to send the bone marrow for additional testing.. some of the same tests we had at the beginnning of diagnoses to see if there are other things going on molecular wise.
The Oncologist is still positive that it's the infection, she said he was an anomolie and that he's so healthy. Although if the cancer did return he would not feel any symptoms at this time.
We will get the preliminary results back tomorrow which will tell us if it's relapse or not.
I am being hopeful and positive it;s just the infection. It will be a long wait until tomorrow.
Love you all and please send positive energy to my little bumpkin.
They are going to send the bone marrow for additional testing.. some of the same tests we had at the beginnning of diagnoses to see if there are other things going on molecular wise.
The Oncologist is still positive that it's the infection, she said he was an anomolie and that he's so healthy. Although if the cancer did return he would not feel any symptoms at this time.
We will get the preliminary results back tomorrow which will tell us if it's relapse or not.
I am being hopeful and positive it;s just the infection. It will be a long wait until tomorrow.
Love you all and please send positive energy to my little bumpkin.
Thursday, January 7, 2010
Blood Counts Update
Unfortunately I have some sad news. Lyric's counts have not gone up. When given the news in clinic today I started to bawl. Lyric's nurse immediately said she was sorry and hugged me.. then a few other parents that I have gotten to know came over as well to offer thier support.
We are going in Tuesday for the bone marrow test which will determine what is going on with his blood. One of the Oncologists did speak to me and said that she still thinks there is a strong possibility that it's from the infection, and that the majority of AML kids succumb to infection and major delays through their chemo. But Lyric has done so amazingly well and has had no delays. She reassured me to not worry so much.. but then told me she can't guarantee anything and there is a possibility it's the cancer.
After the bone marrow test we will get the results either Wednesday or Thursday.
I went to take a nice hot bath last night, and my water was cold. So I went downstairs to find the hot water tank was cold. The service man came today and fixed it.. the pilot light was out. Ugh.. but yet again.. it's something else to deal with.
The furnace is working great, it's so nice to have heat again.
We are going to see Avatar tonight.. should be fun! Lyric is neutropenic still ,but I think we need some fun. We will be super careful!! Both kids are looking forward to it.
I contacted Direct Energy today, complained to the supervisor in the executive office. Her employee that I complained to the other day to do something, did nothing! He made notes in my account, and forwarded and email.. did no follow up and did nothing to deal with my situation. So his boss that I spoke to today was disgusted, and said she will talk to some colleagues and get back to me. I told her I was getting a lawyer and suing.
We are going in Tuesday for the bone marrow test which will determine what is going on with his blood. One of the Oncologists did speak to me and said that she still thinks there is a strong possibility that it's from the infection, and that the majority of AML kids succumb to infection and major delays through their chemo. But Lyric has done so amazingly well and has had no delays. She reassured me to not worry so much.. but then told me she can't guarantee anything and there is a possibility it's the cancer.
After the bone marrow test we will get the results either Wednesday or Thursday.
I went to take a nice hot bath last night, and my water was cold. So I went downstairs to find the hot water tank was cold. The service man came today and fixed it.. the pilot light was out. Ugh.. but yet again.. it's something else to deal with.
The furnace is working great, it's so nice to have heat again.
We are going to see Avatar tonight.. should be fun! Lyric is neutropenic still ,but I think we need some fun. We will be super careful!! Both kids are looking forward to it.
I contacted Direct Energy today, complained to the supervisor in the executive office. Her employee that I complained to the other day to do something, did nothing! He made notes in my account, and forwarded and email.. did no follow up and did nothing to deal with my situation. So his boss that I spoke to today was disgusted, and said she will talk to some colleagues and get back to me. I told her I was getting a lawyer and suing.
Tuesday, January 5, 2010
Yay to Monoxide detectors!
3 a.m., the CO alarm goes off.. reading 97 ppm. High level. In a dazed fog I awake and think about what I am to do.. I shut off the furnace and call the gas company. They then in turn contact the fire department and within about 5 minutes about 5 very lovely firemen were at my door.
They took their meter around the house, and found no CO. They checked everything over.. Lyric joked about me making pancakes for everyone... hehe. They asked about the furnace, I told them the story of how it stopped working and the repairman came.. and how the guy told me there was a crack in the heat exchanger and what he was supposed to shut it off.. but that the CO levels in the house were low so he would leave it on. And of course I know nothing.. I don't understand what heat exchangers do.. The fire chief says that he was supposed to shut the furnace down.. by law. And was quite worried and surprised he left it on. So he told me to leave the windows open a crack.
Then the gas guy comes to do his inspection. He waves his gas testing machine around and finds a leak coming from our water heater. Then proceeds to tell me he's got to shut the gas off.. so there goes our water and our heat. I then call Direct Energy back again to send a service repairman.
It's now about 9 a.m.. A different repairman comes and fixes the gas leak problem.. it was only a loose connector joint. I proceed to tell him about the furnace and what has happened. He becomes quite concerned. He then checks over the furnace and confirms the Heat Exchanger is cracked.. and yes, it should have legally been shut down because it will leak CO into the house.
I am just baffled.. how this first repairman would put my family at risk. We could have died. The second repairman was also in shock and called in a complaint for us. He was just beside himself that this guy would put us, especially with Lyric in the house at risk.
The Direct Energy sales guy comes at 11:30. Gives us 2 quotes .. one about 4200k, and the other close to 5000k. UNBELIEVABLE. And on top of that I have to jump through hoops to get about 1200k back from government programs... sigh.. like I have tmie and energy for that! And you have to pay to have the assessments done too!
So I called the management at Direct Energy to complain..the guy was shocked that the furnace was left on. So I explained that he put my family's lives at risk and that it's imcomprehensible that he would do that. He agreed and said they would try and do something to help me with a new furnace. Great.. but he said not for about 24 hours. I said I'm sorry, but I can't wait 24 hours. I have 2 kids, one with cancer that needs heat NOW. I have to get this done today. He said he would try. I am however going to look into a lawyer in regards to this matter as well. He broke the law and put my family at risk!
Paul had a friend at work who sent his friend here who does HVAC. He gave us a big break and is going to charge us $2500 cash.. so my wonderful and dear cousins are helping me pay for the furnace to get installed. I have no other choice.
Someone please wake me up when the nightmare is over. Ugh.. I'm not sure if I can take anymore.
They took their meter around the house, and found no CO. They checked everything over.. Lyric joked about me making pancakes for everyone... hehe. They asked about the furnace, I told them the story of how it stopped working and the repairman came.. and how the guy told me there was a crack in the heat exchanger and what he was supposed to shut it off.. but that the CO levels in the house were low so he would leave it on. And of course I know nothing.. I don't understand what heat exchangers do.. The fire chief says that he was supposed to shut the furnace down.. by law. And was quite worried and surprised he left it on. So he told me to leave the windows open a crack.
Then the gas guy comes to do his inspection. He waves his gas testing machine around and finds a leak coming from our water heater. Then proceeds to tell me he's got to shut the gas off.. so there goes our water and our heat. I then call Direct Energy back again to send a service repairman.
It's now about 9 a.m.. A different repairman comes and fixes the gas leak problem.. it was only a loose connector joint. I proceed to tell him about the furnace and what has happened. He becomes quite concerned. He then checks over the furnace and confirms the Heat Exchanger is cracked.. and yes, it should have legally been shut down because it will leak CO into the house.
I am just baffled.. how this first repairman would put my family at risk. We could have died. The second repairman was also in shock and called in a complaint for us. He was just beside himself that this guy would put us, especially with Lyric in the house at risk.
The Direct Energy sales guy comes at 11:30. Gives us 2 quotes .. one about 4200k, and the other close to 5000k. UNBELIEVABLE. And on top of that I have to jump through hoops to get about 1200k back from government programs... sigh.. like I have tmie and energy for that! And you have to pay to have the assessments done too!
So I called the management at Direct Energy to complain..the guy was shocked that the furnace was left on. So I explained that he put my family's lives at risk and that it's imcomprehensible that he would do that. He agreed and said they would try and do something to help me with a new furnace. Great.. but he said not for about 24 hours. I said I'm sorry, but I can't wait 24 hours. I have 2 kids, one with cancer that needs heat NOW. I have to get this done today. He said he would try. I am however going to look into a lawyer in regards to this matter as well. He broke the law and put my family at risk!
Paul had a friend at work who sent his friend here who does HVAC. He gave us a big break and is going to charge us $2500 cash.. so my wonderful and dear cousins are helping me pay for the furnace to get installed. I have no other choice.
Someone please wake me up when the nightmare is over. Ugh.. I'm not sure if I can take anymore.
Monday, January 4, 2010
Blood Counts
Went to clinic today.. through the 3 feet of snow Niagara was pounded with in 24 hours..
Lyric's counts have dropped back down. Of course his Platelets were at 16.. so I had to insist on a transfusion, since they were sending me away yet again without one. And with the snow squalls we have been having I pushed the subject.
The nurse also says that if Lyric's counts don't come up on Thursday when we come in, then the following Tuesday Lyric would have to go for a bone marrow test to see what's going on.. of course I ask.. well, what does that mean? She said well we think it's probably from his infection, but we have to be safe and test. I asked, is this normal? For counts to drop? and she says no.. then it was case closed.
I wasn't satisfied with that answer so I asked to speak to the Doctor. Of course I know the nurses aren't privy to share the info with me.
So I ask the Doctor.. he tells me something similar.. they think it's from the infection he just had, and standard procedure after 32 days of of no counts is to the the bone marrow test. Ohh..ok.. so then I ask, is it possible for the counts to not come up at all? and he says yes, then I ask, well if it's not the infection, what else can it be?
there is about 15 seconds of silence and this look comes over his face.
Well.. it could be that his Leukemia has returned.
My heart plummeted, and to save me he dove in with reassurance. He states that they are VERY confident it's from the infection, but there is a possibility its the cancer.
Then there was silence from me..
Ok, thanks. I appreciate now KNOWING what to expect.
Why do they not tell you, I get they try to be positive, but seriously. I don't like surprises!!!
So now we go back Thursday to see what his counts are doing and of course I am just on edge. worrying. My poor boy.. if his cancer is back then next step is bone marrow transplant. And Avery is his perfect match.
On another note, I'm getting quotes on the furnace.. there is a charity that I need to fill in paperwork for that will pay $800 towards emergency problems so I am doing that tomorrow!
Lyric's counts have dropped back down. Of course his Platelets were at 16.. so I had to insist on a transfusion, since they were sending me away yet again without one. And with the snow squalls we have been having I pushed the subject.
The nurse also says that if Lyric's counts don't come up on Thursday when we come in, then the following Tuesday Lyric would have to go for a bone marrow test to see what's going on.. of course I ask.. well, what does that mean? She said well we think it's probably from his infection, but we have to be safe and test. I asked, is this normal? For counts to drop? and she says no.. then it was case closed.
I wasn't satisfied with that answer so I asked to speak to the Doctor. Of course I know the nurses aren't privy to share the info with me.
So I ask the Doctor.. he tells me something similar.. they think it's from the infection he just had, and standard procedure after 32 days of of no counts is to the the bone marrow test. Ohh..ok.. so then I ask, is it possible for the counts to not come up at all? and he says yes, then I ask, well if it's not the infection, what else can it be?
there is about 15 seconds of silence and this look comes over his face.
Well.. it could be that his Leukemia has returned.
My heart plummeted, and to save me he dove in with reassurance. He states that they are VERY confident it's from the infection, but there is a possibility its the cancer.
Then there was silence from me..
Ok, thanks. I appreciate now KNOWING what to expect.
Why do they not tell you, I get they try to be positive, but seriously. I don't like surprises!!!
So now we go back Thursday to see what his counts are doing and of course I am just on edge. worrying. My poor boy.. if his cancer is back then next step is bone marrow transplant. And Avery is his perfect match.
On another note, I'm getting quotes on the furnace.. there is a charity that I need to fill in paperwork for that will pay $800 towards emergency problems so I am doing that tomorrow!
Saturday, January 2, 2010
Spoke too soon..
The furnace does need to be replaced. The heat exchangers are gone and it costs too much to fix it.. so we have to buy a new one. Great! The carbon monoxide levels are at the highest level before he had to tag and shut it down. I'm thankful to finally be warm... but scared about the cost and monoxide!
Off to get some new monoxide detectors!
Off to get some new monoxide detectors!
Happy New Years!
We arrived home this past Tuesday.. the Doctors decided to take him off 2 of the antibiotics and his counts were starting to come up.
So we are back home. I just love being home. Mind you the house needed a good cleaning, and it took me a couple days to get things in order after Christmas. Our Christmas tree was dead.. not one branch had needles on it. The bottom of the tree had sapped over and wasnt taking in water. Oh well.. it was quite the mess to clean up.
New Years was great, we had some wonderful friends come with thier kids. I made some yummy food, and we played Wii Fit Plus.. it was fun!
Last night our furnace stopped working.. so we froze all night and this morning until the guy just came now. There was a blockage in the pipe.. thank goodness I didn't have the replace the furnace or anything.. phew! Our house is 15 degrees and we used an electric heater and huddled in my room. Happy New Year to us! I couldn't imagine replacing a furncae right now.. since I'm running out of money and have no job!!
Lyric is doing very well, he's enjoying being home. His counts are finally coming up nicely so we are back on Monday for counts. Then possibly back Thursday for his last round of chemo!
I have started thinking about what I am going to do to go back to work.. there is a course I would love to take but I can't make a living off that.. and there are no jobs here. I'm hoping I won't be forced to sell the house cause I can't pay the bills!
Happy New Year everyone.. I hope this year brings all the best for everyone. Including us!
So we are back home. I just love being home. Mind you the house needed a good cleaning, and it took me a couple days to get things in order after Christmas. Our Christmas tree was dead.. not one branch had needles on it. The bottom of the tree had sapped over and wasnt taking in water. Oh well.. it was quite the mess to clean up.
New Years was great, we had some wonderful friends come with thier kids. I made some yummy food, and we played Wii Fit Plus.. it was fun!
Last night our furnace stopped working.. so we froze all night and this morning until the guy just came now. There was a blockage in the pipe.. thank goodness I didn't have the replace the furnace or anything.. phew! Our house is 15 degrees and we used an electric heater and huddled in my room. Happy New Year to us! I couldn't imagine replacing a furncae right now.. since I'm running out of money and have no job!!
Lyric is doing very well, he's enjoying being home. His counts are finally coming up nicely so we are back on Monday for counts. Then possibly back Thursday for his last round of chemo!
I have started thinking about what I am going to do to go back to work.. there is a course I would love to take but I can't make a living off that.. and there are no jobs here. I'm hoping I won't be forced to sell the house cause I can't pay the bills!
Happy New Year everyone.. I hope this year brings all the best for everyone. Including us!
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