Ok... so do you want the good news first or last?
Didn't you always hate being faced with that question? We usually choose to hear the good news first. Which in my opinion is probably not the best one to choose. We hear the bad news last and that remains in our conscience... if you hear the good news last, then you may feel a bit better...yes? enough about my random and non important rambling..
So bad news first...
Looks like we aren't going home yet. We were scheduled to leave tomorrow but Lyric's blood counts are not where they want to see them. His white count was coming down really well in the beginning but has slowed right down. His count is still too high, especially for his last day of chemo today. Of course the Oncologist said that she is not worried at this point because sometimes it can take a few extra days to come down. So they are keeping him to see how that goes. But what is worrisome is that his leg is still huting him. Albeit not as dibilitating as it was before, and he is not walking without a walker... but the chemo should have gotten rid of that tumer sitting on his nerve. So. I ask the question... what happens if his counts don't go lower? Is that something to worry about?? She says that is why he's going through 4 more rounds of chemo.. we don't always get it all the first time. She also mentions that she thinks that the marrow is still producing some bad leukemic cells and something is off because the indicator is his leg still hurting. But it's a good sign that he's not in so much pain and he can walk without his walker.. Ok ok... so I'm a bit relieved to hear it put that way, but at the same time I worry that there is more to this Leukemia than meets the eye.. ugh.
Ok, so second round of bad news. Sorry... the good news IS coming!
I have met some wonderful people here. This ward is filled with a range of kids with different issues. But the wall of private rooms here are held for cancer patients because like Lyric is now, they become Neutropenic. 2 doors down is this sweet little girl. She is no more than 5. Her hair is just growing back from her last round of chemo and she has a feeding tube. They have been here since early July.
I knew something was wrong when I saw the mom crying one day last week. We've exchanged hello's in the hallway several times. I bumped into dad today in the kitchen. He asks how Lyric is doing and I say very well... he's a trooper. I ask how his little one is doing. Silence. Then proceeds to share his story. She was diagnosed with ALL Leukemia a while ago, did rounds of chemo and went into remission. Then in October she relapsed and was back here. Her genes were tested and they found some MLL mutations (I don't know much about this yet...sorry) which for some reason makes her body reject the Chemo. They tried marrow transplant... nothing. She is terminal with this terrible disease and has 1-3 weeks to live. My heart just plummeted for this man in his pain, and I could see the tears welling up in his eyes. I apologized. I said I know you hear this all the time but if you need anything.. even just coffee... I am here in the hospital going through the same thing. He agreed and said others sometimes don't understand... I offered my services as a photographer to him and his wife.. he said that they had some photos done before she relapsed and that he doesn't know if he wants to remember her how she is right now.. I said well if it was me, i'd be scared too, but I would like photos of those last precious moments. I said you think about it the offer always stands.
oh, oh... almost forgot. The have recently added a Naturopath to her care and they got into quite the battle with the pharmacist. They had her on Morphine for pain.. her organs are enlarged and she can't breathe well. The poor baby was just out of it. The didn't want her to live that way for the rest of her days so the Naturopath gave her Belladonna and it helped her manage the pain and still have some life to her to enjoy her last moments...Pharmacist said you can't give that to her it's a barbiturate..he said and all those toxic chemo drugs that your nurses come in and administer in suits with goggles and masks are any better?? he said to just keep quiet and say nothing about it. It's not worth the frustration.
Alrighty then... enough depressing news!!
Good News! WOOO!
The Fundraiser last night at 4Triple5 was just amazing. Just when you start to think that people are becoming cold and heartless something like this tragic event happens and BAM... everyone comes together. The community in Niagara is like no other that I've lived in... and I've lived in many!
The love and energy was in abundance. The place was packed and there was so much support. My wonderful friend Robin truly out-did herself getting this event organised. And with the help of sooooo many others it came off without a hitch. I had done up a collage of photos of Lyric since birth, a difficult feat...but it was such a great addition, like he was there with me. The music was awesome. The Prizes that were given for the silent auction were so generous. I did manage to get on stage (with MUCH apprehension because I have tremendous stage fright!) and say a few words. I had so many more things I just wanted to say but I couldn't get them out. I do hope though that everyone knows how much I appreciate all the donations (which totalled around $1500!!) and the love and support is what is going to help us get through this. Being a single parent with a house and 2 kids is was difficult to manage when I was working 7 days a week to make it work. But now that I have to stop working for many months... there is the fear of losing everything. But with all this help, I am hoping we can make it through for Lyric and Avery's sake. Thank you,thank you, thank you. Much Love.
Monday, August 31, 2009
Sunday, August 30, 2009
Fundraiser night!
I am going to the 4Triple5 Fundraiser tonight that was put together by my wonderful and dear friend Robin and many others who have also done so much to help. It is at 8 tonight so I am going to the Falls this afternoon to get a few things done before hand. It will be difficult for me to be at the fundraiser... It's all in effort to help us. But I am such a independent person and I don't like asking for help. But I really don't have much choice considering I am not working and have a house and 2 kids to look after. I don't know what I would do without the amazing efforts of all my friends and family. Thank you so very much!
Lyric has developed some sores in his mouth.. which is a side effect to the chemo. It can get worse, so we are hoping by taking care of his mouth well it won't. It hurts for him to have anything acidic so it's back to bland baby food... he's not going to like that!
He is also Neutropenic today.. and will be for about 2 weeks. As I mentioned in an earlier post being neutropenic is difficult. He has absolutely NO immunity at all. This will be difficult for me in some ways where I have to balance going shopping, keeping everyone who is symptomatic away, and make people wash their hands constantly... can't really go to public places. So we will be locked in the house for a couple weeks.
They said Lyric could go out again today for a couple hours but its cold, and we don't have any warm clothing here.. and can't go to public places so we are staying in.
His hair is starting to fall out. He's been really good about it, he's accepted he will be bald. He makes some jokes about it. He is going to look like a different boy without hair!!
Something kinda funny..
My cousin saw a psychic last night. This psychic knew about Lyric, mentioned what he had, and that he would be fine. But also mentioned he needed to been seen by a Naturopath... and this was all without my cousin saying anything!! interesting huh!
Lyric has developed some sores in his mouth.. which is a side effect to the chemo. It can get worse, so we are hoping by taking care of his mouth well it won't. It hurts for him to have anything acidic so it's back to bland baby food... he's not going to like that!
He is also Neutropenic today.. and will be for about 2 weeks. As I mentioned in an earlier post being neutropenic is difficult. He has absolutely NO immunity at all. This will be difficult for me in some ways where I have to balance going shopping, keeping everyone who is symptomatic away, and make people wash their hands constantly... can't really go to public places. So we will be locked in the house for a couple weeks.
They said Lyric could go out again today for a couple hours but its cold, and we don't have any warm clothing here.. and can't go to public places so we are staying in.
His hair is starting to fall out. He's been really good about it, he's accepted he will be bald. He makes some jokes about it. He is going to look like a different boy without hair!!
Something kinda funny..
My cousin saw a psychic last night. This psychic knew about Lyric, mentioned what he had, and that he would be fine. But also mentioned he needed to been seen by a Naturopath... and this was all without my cousin saying anything!! interesting huh!
Saturday, August 29, 2009
A brisk walk
What a great day. Well for me anyways..
A good friend came to visit with her hubby.. we were chatting and one of our Oncologists came in and said Lyric could break free and get out of the hospital for a couple of hours!!
I got so excited.. jumped up and down.. woohoo!! a break away... time for fresh air and to be out in the real world. Lyric... not so excited. He has fallen into this comfy place here in the hospital where he is spoiled. Lies in a bed all day, gets food delivered to him (mostly CRAPPY food of course), gets to play video games for hours, gets new toys delivered by friends and family. He is so enjoying this life and is using it! Of course you feel sorry for your child going through something like this so you tend to bend rules...but really that's not helping him or me. He's become rude at times and has fits like a 2 year old. He sometimes even uses his leg pain to get out of walking. Of course I'm big bad momma... always telling him to stop playing games, eat something, take his meds, and take a walk. So yes, big mean momma forced him to go outside for a walk.
The nurses disconnected his IV and we got him ready to go outside. We walked around the McMaster University grounds.. the sun was shining, and it was so nice to get fresh air. My parents arrived and joined us. I took some photos and an hour later Lyric was ready to go back inside.
I had some alone time with my friend for some lunch, which was a great break. You start to go wonky in a place like this...cooped up in a room 24-7! There are so many other kids in this ward who have cancer too.. and it becomes a very depressing place to see how sick they are, feeding tubes in their noses, frail bodies and bald heads.
I was told today "I wish I had another mother!" ... yes, after telling him he couldn't play anymore games. It hurts yes... but I know where it's coming from and I know it's not true. Before he went to bed tonight he looked into my eyes and said "I'm sorry for what I said today mom.. I love you" .. aw my sweet little man.
A good friend came to visit with her hubby.. we were chatting and one of our Oncologists came in and said Lyric could break free and get out of the hospital for a couple of hours!!
I got so excited.. jumped up and down.. woohoo!! a break away... time for fresh air and to be out in the real world. Lyric... not so excited. He has fallen into this comfy place here in the hospital where he is spoiled. Lies in a bed all day, gets food delivered to him (mostly CRAPPY food of course), gets to play video games for hours, gets new toys delivered by friends and family. He is so enjoying this life and is using it! Of course you feel sorry for your child going through something like this so you tend to bend rules...but really that's not helping him or me. He's become rude at times and has fits like a 2 year old. He sometimes even uses his leg pain to get out of walking. Of course I'm big bad momma... always telling him to stop playing games, eat something, take his meds, and take a walk. So yes, big mean momma forced him to go outside for a walk.
The nurses disconnected his IV and we got him ready to go outside. We walked around the McMaster University grounds.. the sun was shining, and it was so nice to get fresh air. My parents arrived and joined us. I took some photos and an hour later Lyric was ready to go back inside.
I had some alone time with my friend for some lunch, which was a great break. You start to go wonky in a place like this...cooped up in a room 24-7! There are so many other kids in this ward who have cancer too.. and it becomes a very depressing place to see how sick they are, feeding tubes in their noses, frail bodies and bald heads.
I was told today "I wish I had another mother!" ... yes, after telling him he couldn't play anymore games. It hurts yes... but I know where it's coming from and I know it's not true. Before he went to bed tonight he looked into my eyes and said "I'm sorry for what I said today mom.. I love you" .. aw my sweet little man.
Friday, August 28, 2009
Blood Counts
We have been educated on blood counts.. something that is very crucial to cancer patients undergoing chemo.
So Leukemia is cancer of the blood, Your bone marrow creates your blood, and in Lyric's case his blood cells have garbled information. The cells are dividing and dividing but not maturing. And of course with Lyric's type of Leukemia this happens at a very aggressive rate. The chemo kills the blood cells being produced in his marrow.. it's the white cells we want to kill. But of course it kills the red cells and the platelets as well.
Everyday Lyric gets blood taken twice, one in the morning and once in the evening. They run a CBC (Complete Blood Count) so they can determine how well the chemo is doing.
We get this sheet of paper every morning with the "numbers".. and of course you can't wait to get these precious sheets of paper to see how he is doing.
Now, we want his white blood cells to get down to virtually zero. And of course you know that you need white blood cells to fight infection. The good part of the white cells is called Neuts.. so when his white blood cells get to a low number (being .5 or lower) he is considered Neutropenic. That means he needs to be in lock down.. he cannot be exposed to anyone or anything. Any cold or flu could cost him his life. This neutropenic stage is usually 7-10 days into his chemo and there is no way of knowing how long he stays this way.. depends on his health.
Today his red blood cells or Hemoglobin has reached below 70.. that means he could become very ill... head aches, pale, lethargic... and not healthy. His level today was 65, BUT he was in great shape. Once that hemoglobin number gets to 70 or below they give a blood transfusion. It will give his body more energy and help him get a little healthier.
So today they come in with this bag of blood. Strange concept really.. to see this blood trickle down into the IV line and then run into his Hickman line in his chest.
Of course there are side effects to having transfusions, one being your body learns that it is foreign and starts to refuse them... and sometimes cause allergic reactions. So they manage this with drugs... of course.
He is starting to walk much better...well, I guess I should explain. Lyric had 2 lesions or tumors. One was on his eye, causing his eye to be puffy and the other one is resting on a nerve near his legs. The one that is on his nerve is causing him to have walking problems with his left leg. Chemo should take care of this in time. But they are monitoring this frequently just in case.
Spoke with his clinical nurse today, she's wonderful. She is our nurse ongoing through this whole process. I told her about my naturopath and she thought it was wonderful. She understands and thinks anything to help Lyric get better faster to get through his chemo faster is wonderful! So I felt much better at least having someone on my side!!
So we only have a few more days here. I will be going to the Fundraiser on Sunday at 4Triple5 on Queen St... it will be nice to see everyone who has helped support us, a good time to thank and appreciate everyone.
So Leukemia is cancer of the blood, Your bone marrow creates your blood, and in Lyric's case his blood cells have garbled information. The cells are dividing and dividing but not maturing. And of course with Lyric's type of Leukemia this happens at a very aggressive rate. The chemo kills the blood cells being produced in his marrow.. it's the white cells we want to kill. But of course it kills the red cells and the platelets as well.
Everyday Lyric gets blood taken twice, one in the morning and once in the evening. They run a CBC (Complete Blood Count) so they can determine how well the chemo is doing.
We get this sheet of paper every morning with the "numbers".. and of course you can't wait to get these precious sheets of paper to see how he is doing.
Now, we want his white blood cells to get down to virtually zero. And of course you know that you need white blood cells to fight infection. The good part of the white cells is called Neuts.. so when his white blood cells get to a low number (being .5 or lower) he is considered Neutropenic. That means he needs to be in lock down.. he cannot be exposed to anyone or anything. Any cold or flu could cost him his life. This neutropenic stage is usually 7-10 days into his chemo and there is no way of knowing how long he stays this way.. depends on his health.
Today his red blood cells or Hemoglobin has reached below 70.. that means he could become very ill... head aches, pale, lethargic... and not healthy. His level today was 65, BUT he was in great shape. Once that hemoglobin number gets to 70 or below they give a blood transfusion. It will give his body more energy and help him get a little healthier.
So today they come in with this bag of blood. Strange concept really.. to see this blood trickle down into the IV line and then run into his Hickman line in his chest.
Of course there are side effects to having transfusions, one being your body learns that it is foreign and starts to refuse them... and sometimes cause allergic reactions. So they manage this with drugs... of course.
He is starting to walk much better...well, I guess I should explain. Lyric had 2 lesions or tumors. One was on his eye, causing his eye to be puffy and the other one is resting on a nerve near his legs. The one that is on his nerve is causing him to have walking problems with his left leg. Chemo should take care of this in time. But they are monitoring this frequently just in case.
Spoke with his clinical nurse today, she's wonderful. She is our nurse ongoing through this whole process. I told her about my naturopath and she thought it was wonderful. She understands and thinks anything to help Lyric get better faster to get through his chemo faster is wonderful! So I felt much better at least having someone on my side!!
So we only have a few more days here. I will be going to the Fundraiser on Sunday at 4Triple5 on Queen St... it will be nice to see everyone who has helped support us, a good time to thank and appreciate everyone.
Thursday, August 27, 2009
Diagnoses
Lyric was diagnosed with AML Leukemia on August 17th. We have been at McMaster Childrens Hospital since then while Lyric undergoes aggressive treatment for his cancer.
10 days before we came here Lyric experienced headaches, and pain that started in his neck. A visit to the Doctor and a prescription for antibiotics for an infection did not make sense. Over the 10 days the pain travelled down his arm, to his leg. I took him to the Naturopath of which had me take him to the emerg right away. Tests revealed that Lyric had extremely high white blood cell counts. We were then sent to McMaster for futher investigation. 2 hours after being here our worst nightmare was confirmed. Lyric had AML Leukemia.
His Cancer is very rare and only has a succession rate of 50%. He has 5 rounds of chemo, which run for 28 days. 10 days in hospital and 3 weeks of rest.. while at home "resting" we will be coming back to the hospital twice a week for blood checks.
This disease does not hereditary, there is no way to know how he got it. But an 8 year old bright, sweet and lovable boy does not deserve to have it.
He is in for a long and hard fight. He has lots of love and support and we are going to get him through.
Please feel free to contact me blog here.
10 days before we came here Lyric experienced headaches, and pain that started in his neck. A visit to the Doctor and a prescription for antibiotics for an infection did not make sense. Over the 10 days the pain travelled down his arm, to his leg. I took him to the Naturopath of which had me take him to the emerg right away. Tests revealed that Lyric had extremely high white blood cell counts. We were then sent to McMaster for futher investigation. 2 hours after being here our worst nightmare was confirmed. Lyric had AML Leukemia.
His Cancer is very rare and only has a succession rate of 50%. He has 5 rounds of chemo, which run for 28 days. 10 days in hospital and 3 weeks of rest.. while at home "resting" we will be coming back to the hospital twice a week for blood checks.
This disease does not hereditary, there is no way to know how he got it. But an 8 year old bright, sweet and lovable boy does not deserve to have it.
He is in for a long and hard fight. He has lots of love and support and we are going to get him through.
Please feel free to contact me blog here.
Apparently I'm an alien
For centuries we have cured and healed ourselves using nature before the chemical evolution began and things like White Willow Bark was turned into Aspirin. I am a firm believer that good food heals, and I clearly choose nature over chemical.
Lyric doesn't have a cold, the flu or a sinus infection. I can control his health care in those situations and give him homeopathic remedies... but with Leukemia I am faced with the hardest moral decisions anyone could face whose child is facing death.
What choice do I really have in healing a child with Leukemia? I have tremendous faith in natural healing, but when it comes to life or death of your child you choose what is proven to work. And although I know there are natural ways to heal Cancer I don't think I trust it at this point.. the risk is too great.
Painfully I standby and watch Lyric have poison pumped into him.. it's now going onto day 7 of 10 days. He is pale, nauseous, and will lose his hair in a few days. He is on only 3 chemo drugs, but on 6 drugs to manage short term side effects of chemo..and the long term effects, well there is nothing you can do with those risks. He comes to the brink of death with chemo meds, lowering his blood counts to the point of death... and then his poor battered body has to rebuild itself...5 times over. Then let's pray it doesn't happen again. Oh, and did I mention that one of the chemo meds can actually cause Leukemia. Yes, that's right. either the same type or a different one. But the odds of using this drug to kill the current Leukemia are greater than it causing another.
The nurses come and administer the chemo with gloves, a blue over-coat, goggles and a face mask. They politely ask to see Lyric's name and number printed on his ID bracelet and then inject the cyto-toxic substance into him. They give me gloves to handle Lyric's urinal... it's not safe to touch his urine...
I have accepted this painful choice of choosing chemotherapy for my child to survive. I still am working with my ever so wonderful Naturopath... Jane. She has warned me that the big bad doctors here will not like that I choose natural anything over their multi million dollar kick backed wonder meds.. and that is true. They look at me like I'm an alien when i mention that I AM working with a Naturopath and have repeatedly warned me NOT to mix the 2 worlds. I of course have total faith in my Naturopath and she will work closely with me trying to heal and nourish Lyric's battered and chemically infused body. But even the mention of this to my family and Lyric's dad causes them to lose faith in my beliefs.
I had to gently remind these folks that Jane healed Avery of her tummy problems (in 2 months!) after seeing countless Doctors in the western medical world and was prescribed every laxative known. She also cured 16 years of menstrual pain that I have taken very strong meds for ...for 16 years! She did this in 2 months as well.
I now have to sell my beliefs and trust to my family. I am Lyric's mom and have spent many years learning about natural healing...I obviously want the best for my kids. I wouldn't want it for him if I thought it was experimental or it would affect his chemo.
In the eyes of the doctors here I am green with horns... they cringe when mention anything like Beet Root Juice, or Astragalus root...
Jane warned me to not even say anything to them, because they usually blame anything that goes wrong on naturopathy, and will try to deter me to use it. But I will stick to my love and belief of nature and healing..
What would you do??
Lyric doesn't have a cold, the flu or a sinus infection. I can control his health care in those situations and give him homeopathic remedies... but with Leukemia I am faced with the hardest moral decisions anyone could face whose child is facing death.
What choice do I really have in healing a child with Leukemia? I have tremendous faith in natural healing, but when it comes to life or death of your child you choose what is proven to work. And although I know there are natural ways to heal Cancer I don't think I trust it at this point.. the risk is too great.
Painfully I standby and watch Lyric have poison pumped into him.. it's now going onto day 7 of 10 days. He is pale, nauseous, and will lose his hair in a few days. He is on only 3 chemo drugs, but on 6 drugs to manage short term side effects of chemo..and the long term effects, well there is nothing you can do with those risks. He comes to the brink of death with chemo meds, lowering his blood counts to the point of death... and then his poor battered body has to rebuild itself...5 times over. Then let's pray it doesn't happen again. Oh, and did I mention that one of the chemo meds can actually cause Leukemia. Yes, that's right. either the same type or a different one. But the odds of using this drug to kill the current Leukemia are greater than it causing another.
The nurses come and administer the chemo with gloves, a blue over-coat, goggles and a face mask. They politely ask to see Lyric's name and number printed on his ID bracelet and then inject the cyto-toxic substance into him. They give me gloves to handle Lyric's urinal... it's not safe to touch his urine...
I have accepted this painful choice of choosing chemotherapy for my child to survive. I still am working with my ever so wonderful Naturopath... Jane. She has warned me that the big bad doctors here will not like that I choose natural anything over their multi million dollar kick backed wonder meds.. and that is true. They look at me like I'm an alien when i mention that I AM working with a Naturopath and have repeatedly warned me NOT to mix the 2 worlds. I of course have total faith in my Naturopath and she will work closely with me trying to heal and nourish Lyric's battered and chemically infused body. But even the mention of this to my family and Lyric's dad causes them to lose faith in my beliefs.
I had to gently remind these folks that Jane healed Avery of her tummy problems (in 2 months!) after seeing countless Doctors in the western medical world and was prescribed every laxative known. She also cured 16 years of menstrual pain that I have taken very strong meds for ...for 16 years! She did this in 2 months as well.
I now have to sell my beliefs and trust to my family. I am Lyric's mom and have spent many years learning about natural healing...I obviously want the best for my kids. I wouldn't want it for him if I thought it was experimental or it would affect his chemo.
In the eyes of the doctors here I am green with horns... they cringe when mention anything like Beet Root Juice, or Astragalus root...
Jane warned me to not even say anything to them, because they usually blame anything that goes wrong on naturopathy, and will try to deter me to use it. But I will stick to my love and belief of nature and healing..
What would you do??
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