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!
Wednesday, September 30, 2009
Friday, September 25, 2009
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.
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.
Thursday, September 24, 2009
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.
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.
Wednesday, September 23, 2009
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!
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!
Monday, September 21, 2009
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.
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.
Thursday, September 17, 2009
2nd Induction update
I was up almost all night.. with a fever. Ugh. And of course I took nothing and just let the fever take it's course.. we have fever's for a reason!! They help us. They create antibodies. But man, they SUCK!
I've had this thing with my upper back and neck.. which needs more massage therapy. Then I manage to get a bladder infection. Around 8 p.m. last night I felt cold and achy.. no viral symptoms like runny nose or cough. Then my lower back began to ache and then I knew it was either my bladder or kidneys. It's been a long time since I've had one of those... hmm, could it be this wonderful cocktail of terrible sleeping, bad food mixed with a little stress??
So I managed to weasel my way into Jane's office today. I am such a thorn in her side now!! Poor Jane! She did the pee test and sure enough.. so instead of the usual antibiotics I'm on Uristatin and a woman's probiotic. So let's see how that goes over the next few days.. sigh...
So we made it to clinic this morning for Lyric's counts... and I did something terrible. I totally forgot NOT to feed him this morning. He wasn't supposed to have anything to eat or drink past midnight.. could it be the fever and lack of sleep the night before?? My brain was in a fog this morning and along with my rosy cheeks and black circles I goofed. BUT.. that being said his counts weren't where they wanted them to be anyways. They wanted them a bit higher. His white cells are at 2.9 (originally 77 when he was diagnosed!), his hemoglobin 96 (on the low side), his platelets were at 16 so he had a transfusion, and his absolute neuts were at 1.4!! He is NOT neutropenic! Yay!! It's funny cause he jumped up and down and said I can touch stuff now?? I can go out in stores?? Yay!
Since I fed him an organic pop tart and a glass of grape juice at 6 a.m., so the bitchy anaesthesiologist didn't want to put him to sleep (although technically she could have according to the Doc) .. but now it gives us the weekend at home, together and since he's not neutropenic we can do more things. We are back tomorrow morning for 7:45 for the MRI, and then Monday for counts again.. if they are good we come back again Tuesday for bone marrow test and start chemo Wednesday.. phew! did you get all that? It took her repeating this stuff to me a couple times before it registered in my foggy brain today.
I met another great mom today in clinic of a little girl who has ALL Leukemia. But she too has a very rare genetic mutation. She didn't even qualify for chemo, she went straight to bone marrow transplant and it was un successful. They are going with this foundation next week to Disney.. the mom though was so strong and it seemed as though she's accepted the fate of her little one. Also met this wonderful 13 year old boy today who had a brain tumor. He was full of life and just so happy and inquisitive.. he would tell me things about him then ask me a while later to see if I remembered.. then he would joke. He was there with his family and his 1 yr old baby niece.. he bragged about her non stop, held her on his lap and just played with her. So sweet.
dishes are done, garbage put out.. house is a mess. I do have a few extra days now to clean up. Ugh, time to get into bed and kick ass on this infection.
I've had this thing with my upper back and neck.. which needs more massage therapy. Then I manage to get a bladder infection. Around 8 p.m. last night I felt cold and achy.. no viral symptoms like runny nose or cough. Then my lower back began to ache and then I knew it was either my bladder or kidneys. It's been a long time since I've had one of those... hmm, could it be this wonderful cocktail of terrible sleeping, bad food mixed with a little stress??
So I managed to weasel my way into Jane's office today. I am such a thorn in her side now!! Poor Jane! She did the pee test and sure enough.. so instead of the usual antibiotics I'm on Uristatin and a woman's probiotic. So let's see how that goes over the next few days.. sigh...
So we made it to clinic this morning for Lyric's counts... and I did something terrible. I totally forgot NOT to feed him this morning. He wasn't supposed to have anything to eat or drink past midnight.. could it be the fever and lack of sleep the night before?? My brain was in a fog this morning and along with my rosy cheeks and black circles I goofed. BUT.. that being said his counts weren't where they wanted them to be anyways. They wanted them a bit higher. His white cells are at 2.9 (originally 77 when he was diagnosed!), his hemoglobin 96 (on the low side), his platelets were at 16 so he had a transfusion, and his absolute neuts were at 1.4!! He is NOT neutropenic! Yay!! It's funny cause he jumped up and down and said I can touch stuff now?? I can go out in stores?? Yay!
Since I fed him an organic pop tart and a glass of grape juice at 6 a.m., so the bitchy anaesthesiologist didn't want to put him to sleep (although technically she could have according to the Doc) .. but now it gives us the weekend at home, together and since he's not neutropenic we can do more things. We are back tomorrow morning for 7:45 for the MRI, and then Monday for counts again.. if they are good we come back again Tuesday for bone marrow test and start chemo Wednesday.. phew! did you get all that? It took her repeating this stuff to me a couple times before it registered in my foggy brain today.
I met another great mom today in clinic of a little girl who has ALL Leukemia. But she too has a very rare genetic mutation. She didn't even qualify for chemo, she went straight to bone marrow transplant and it was un successful. They are going with this foundation next week to Disney.. the mom though was so strong and it seemed as though she's accepted the fate of her little one. Also met this wonderful 13 year old boy today who had a brain tumor. He was full of life and just so happy and inquisitive.. he would tell me things about him then ask me a while later to see if I remembered.. then he would joke. He was there with his family and his 1 yr old baby niece.. he bragged about her non stop, held her on his lap and just played with her. So sweet.
dishes are done, garbage put out.. house is a mess. I do have a few extra days now to clean up. Ugh, time to get into bed and kick ass on this infection.
Wednesday, September 16, 2009
Home / Tests
We've been home since Monday night.. and I've been so busy. They gave us a couple days at home before we have to go back for tests and possible 2nd round of chemo. So I had an opportunity yesterday to get all my running around done.
Between the terrible sleeping conditions at the hospital (a pull out chair..) and stress (I always carry my stress in my shoulders) I have managed to screw up my back and neck. I had a little massage therapy and my chiropractor made several adjustments... but no luck. Apparently the muscles in my neck are tight causing pain in the back of my head and a headache. I'm sure it will go away... maybe I'll have to sneak in a bottle of wine to the hospital.. hehe
Lyric is doing well, no problems at home. We are back tomorrow morning at 8:30 for his blood tests. We will see if his levels have gone up.. we are hoping he is not neutropenic anymore so we can do the bone marrow test and start his second round of chemo. I hate not knowing.. i have no idea if I should be packing and bringing 2 weeks worth of food, clothes and the other things or whether we are waiting till next week. And because it's an hour away it's not like I can just drive home and get it.. hmmm.. I guess I'll pack a bit and see.
Friday a.m., at 7:45 he has another MRI.. to see if the tumors have disappeared. I know the one over his eye has but I don't know about his leg. He still has a little pain.
His hair has almost all fallen out.. I managed to coax him into letting me cut it. He hated it at first but then learnt that it did look a little better.
I learned today too that some friends at the salon I go to are having a fundraiser in November. So amazing.. I am really fortunate to have such wonderful friends and people looking out for us.
I also learned today that I will probably have to sell the house when Lyric gets better.. I can't be working 7 days a week anymore to keep our home. I'm sad about that cause I really love my house.
Between the terrible sleeping conditions at the hospital (a pull out chair..) and stress (I always carry my stress in my shoulders) I have managed to screw up my back and neck. I had a little massage therapy and my chiropractor made several adjustments... but no luck. Apparently the muscles in my neck are tight causing pain in the back of my head and a headache. I'm sure it will go away... maybe I'll have to sneak in a bottle of wine to the hospital.. hehe
Lyric is doing well, no problems at home. We are back tomorrow morning at 8:30 for his blood tests. We will see if his levels have gone up.. we are hoping he is not neutropenic anymore so we can do the bone marrow test and start his second round of chemo. I hate not knowing.. i have no idea if I should be packing and bringing 2 weeks worth of food, clothes and the other things or whether we are waiting till next week. And because it's an hour away it's not like I can just drive home and get it.. hmmm.. I guess I'll pack a bit and see.
Friday a.m., at 7:45 he has another MRI.. to see if the tumors have disappeared. I know the one over his eye has but I don't know about his leg. He still has a little pain.
His hair has almost all fallen out.. I managed to coax him into letting me cut it. He hated it at first but then learnt that it did look a little better.
I learned today too that some friends at the salon I go to are having a fundraiser in November. So amazing.. I am really fortunate to have such wonderful friends and people looking out for us.
I also learned today that I will probably have to sell the house when Lyric gets better.. I can't be working 7 days a week anymore to keep our home. I'm sad about that cause I really love my house.
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