Stupid Old House.

I was inches away from leaving.. had the bags already in the car. When the Doc had come for a visit to see us off, and asked if I had any questions I asked some concerns I had with my old house.. our basement has weeping tile and is considered "wet" and although it's not always wet, there is moisture and mold down there. It's inevitable with 80 year old homes.. but because I had asked the Docs had a pow-wow and decided he can't go home. Because he has AML, he is highly susceptible to infection. And with the furnace coming on now it's circulating chemicals and spores given off by the mold. Lyric could develop a serious fungal infection.. and then it would be downhill from there.

So I spoke with the Social Worker, she is also one of those wonderful beings who is there to help me. She's my advocate, my spokesperson.. so she said wait a minute.. you can't just tell her she can't go home. She is a single mom, with another child and can't afford to pay to live somewhere else.. so Cindy (Social Worker) decided to make some phone calls. She is going to get a mold specialist to speak with the Docs so they can understand this better, and she also called an HVAC person who said that we should put on a hepa or UV light filter.. and we also need to do air testing. So tomorrow I am going to arrange some stuff and see if it's possible to go home. I have to discuss my findings with the oncologists.. and they will decide.

Ugghhhh... is it possible for anything else to happen?? What the hell did I do in a past life?

Lyric is doing very well, he went through chemo just fine, very healthy and rarely got sick. He's eating well, sleeping and is happy. He's been excelling with his schooling and is back to reading novels.

Avery is great. If we can't go home, then we will be living at the Ronald McDonald House for the next 6-8 months and Avery will have to transfer to a school close to the Hospital. She's pretty good with adapting well to things, so with some love and guidance I am sure she will be fine. But something I don't want to do.

We are back at clinic on Friday for his blood counts, and his next round of chemo is Oct 20th. So let's hope and pray he stays well for the next few weeks so there is no delay. He is still Neutropenic and will be for quite some time so it limits us a bit.. but we will make do I hope!

I am feeling a bit better, Jane has me on some stuff that seems to be helping. Along with the massage and Reiki I had I am on the path to normalcy again.. what am I saying? My life is far from normal. hehe.

I don't quite understand how some people get dealt with so much bad karma and others flourish.. this other lady I met a little while ago was at the hospital with her daughter. Her son had died a couple years ago from a type of strange disorder. They treated him through oncology, had chemo among many other drugs. Then she had a daughter who had the same condition. It's familial obviously.. and so terrible to be struck twice. He daughter is 18 months and is on serious steroids, which makes her into ginormibaby.. she's huge. Lovely lady and sweet little girl.

Off to bed. I'm ready to relax!

Half Way!

We are halfway done the chemo, and things are going well. He's struggling with doing number 2's..(a side effect of the chemo) but I am trying to solve that naturally before they want to give him Lactulose and Senokot.. I have lots of experience with constipation as Avery suffered with it for a year before Jane fixed her.

This wonderful nurse we have Victoria, arranged a message for me today from this other nurse who works in the sedation clinic. She came into my room, sat me in the chair and messaged my shoulders after a long 12 hour shift. All I can say is wow! She said there were several knots in my back... so I will have to go and deal with that when I get home. I have these wonderful patches though, they are menthol and camphor and they radiate heat into my muscles... ahh.. They are called Salonspas and they are available at Asian Stores..

I have Adrenal Fatigue.. Jane is hooking me up with some goodies that will help.

Lyric played with little Gavin today, he came into the room and hung out playing games with Lyric. I took some photos and will post them as soon as I can. But Gavin would sit here and cough.. poor guy. He has a fungal infection in his lungs. And laugh...giggle and chat. His second language is hospital. He can tell you all sorts of medical facts, and he has a box where he puts his collection of medical supplies to play with. Throughout the day he will ask to "play" physio. So they will call the therapist and they will "play". So cute.

We are hoping to be home for Halloween. If we are in the hospital I still want Lyric to be able to dress up still. Apparently they all dress up here. How cute would that be. I would love to take photos of that.

Bone Marrow Results

Lyric woke up this morning quite nauseous and groggy.. he ended up in a throw up session and then proceeded to eat his breakfast pita with peanut butter and 2 organic pop tarts.. hehe. Throughout the day he has felt some nausea, but they are pretty good at giving him his odanzitron and gravol.. seems to keep it manageable.

He got in another hour of school, and is actually ahead of his class! The teacher here spoke to Lyric's teacher at the school. He wasn't surprised Lyric was doing so well.

We got the news back from the marrow test.. and the results were faaaannntastic! They found NO Leukemic cells in the marrow. This is an absolute wonderful sign.. with the next 3 rounds of chemo under his belt I am sure it won't be returning! I hope and pray so anyways!

We have made friends with the little boy and his parents a couple doors down. He is 5, and simply adorable. He's been living in and out of hospital for almost the last 3 years and is getting ready for marrow transplant Oct 4th at Sick Kids. I truly hope he comes through. He is such an amazing spirit. I am going to take some photos of him tomorrow..

Today was a beautiful day outside, I managed to get to the grocery store and purchase some healthy food... as I just finished the rest of a bag of Lightly Salted Kettle Brand Chips.. hehe.

Tomorrow I actually may take several photos, if I'm allowed I may do some documentary style photos and post them.

And we're off...

We are now day 2 into our 8 day chemo cycle. Lyric has been feeling well for the most part but is a bit nauseous here and there. He did manage to go to school today here in the hospital for an hour and a half.. which was great! Then we found out he's back to being neutropenic so he can't be out of the room anymore.

We arrived bright and early yesterday for a Line-O-Gram .. hehe, funny name for a procedure. I wonder if if was invented in the era of green shag carpets. This procedure was done to see if Lyric's hickman line was indeed clotted at the end inside his chest. Quite interesting procedure really.. it's much like an x-ray but they injected this color die into the tube and then take motion pictures... much like an old black and white film on a projector. The results of this test were great! No clot!

Then he had his bone marrow test. We are still waiting for the results. This test will let us know how well he's responded to the chemo, and whether he will move from low risk to intermediate or high... which would mean straight to bone marrow transplantation.

We have moved rooms 3 times in 2 days! The first room we were in we shared.. this young couple had 2 little ones and just found out their 4 year old had cancer. Not sure what kind. But they fought and fought.. and invaded my half of the room.. had so many people in the room, were so noisy... and just plain rude. I was trying to be nice but they weren't interested at all. So a nurse was in the room and witnessed them fighting and decided to move us. Our next room was with a teen boy. He looked frail.. very skinny. He was very reserved and quiet. I introduced myself and Lyric and told him if he needed anything to let me know. We all went to bed around 9, but he was up bright and early at 6-6:30 making all sorts of noise. He woke both Lyric and I up. I asked him if i was ok if tomorrow he could wait until 7 to make all that noise. Then when Lyric became Neutropenic we were moved to a private room... ahhhhhh. Much better.

I feel a bit better, although I will be talking to Jane about something to help with stress. I haven't heard back from my Doc so I am assuming all the blood tests are fine and he was right.. my sickness is brought on from stress. I am eliminating some of the culprits so I already am feeling better. Stress definitely manifests itself in strange ways! I think my good friend Robin was right and I should do some yoga and meditation. It's just not an area conducive to that but I think I will try!

Checking in..

It's been a few days.. but not much has gone on really so no need to post. No news is good news!!

Today we went and had his counts and they look great! He had a slight fever yesterday, and they noticed one of his nodes on his neck is a bit swollen and Lyric says it hurts a bit. They said it could be nothing, or it could be related to his disease.. so they are keeping and eye on it.

The results from the echo cardiogram were in, and they said that it look as though there is a clot at the end of his tube.. they will be performing another test tomorrow to see how bad it is. She said it's common and not to worry about it. I guess it can be fixed!

I was reminded several times not to feed Lyric after midnight.. hehe.. he will be getting his marrow test tomorrow. That test will determine if he has responded to the chemo, and it will place him in a category of being low, intermediate or high risk. To this point he's been low risk. We should get the results back same day or next day. It's a nerve wracking test.. to see whether the fight will get tougher or not.. ugh. We will be checking into the ward again tomorrow to start his second round of chemo.

As for myself, apparently I don't have a kidney infection, and the bladder infection I have is under control.. so I am to go back to the Doc today at 3 to see what's going on.. I'm thinking maybe anemia? I haven't had much iron really.. and my own fault of course. At the hospital there isn't much of a choice. But, I have made some healthy food to bring and my good friend Robin who works at the health store is going to give me a great supplement!

Avery is holding up quite well, she is enjoying school and having fun dancing and singing. I wanted to get her into some classes but with everything going on there is not much time. Soon.

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.

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.

Home maybe / Second chemo round

Lyric has been fever free since Friday.. so today they are taking him off the antibiotics and they will wait and see if his fever returns. His Hickman tube is fine.. nothing came back positive for infection with any of the tests, which is common apparently. So we may go home today or tomorrow depending on how he does. Otherwise he's feeling great.. he just wants to go back home. And so do I!

So this week he will have all his preliminary testing done to see if he's ready for his next round of chemo. Today he gets an echo.. and Tuesday he was supposed to have his bone marrow test.. but his blood counts are not back up high enough yet. So that may happen on Thursday. They want to repeat an MRI sometime this week and then Thursday he comes in for blood counts to see if they are good enough to start Induction 2 chemo.

This nurse practioner came in today.. I didn't even know what that was. But apparently they are a type of nurse that can do orders etc.. a step under a doctor I guess, but a step up from an RN?? She wanted to talk to me about this week and what to expect, as well she also heard Lyric was on some natural remedies and wanted to know what they were. So I went thru them with her. She then tells me he shouldn't be taking the active bacteria or the Vit D.. So she leaves and a couple hours later the Oncologist comes in and says I hear you are attributing his wellness to the natural stuff.... I said well I don't know for a fact obviously, but Lyric is a healthy kid. He has excellent food, and the remedies he is on I'm sure do good. She doesn't really disagree of course but continues to give me reasons why he shouldn't be on them. And the biggest reason??? Well natural medicine don't have everything labelled on their containers so they can't trust them. And of course that there aren't enough clinical studies done. Oh, but we do know that they are ancient remedies that modern medicine was derived from... SO I called Jane... she doesn't think what she has him on is going to hurt anything, of course she has gone to great lengths to make sure of that. So she is again going to look into her recommendations again just to make sure. Including contacting a colleague, a Naturopath that practices at Sick Kids in Toronto. So I am back at this point of what to do and to make sure everything is going to work well together. I did however say I wanted to keep him on the astragalus, she seemed ok with that although she is going to look into it a bit more. hehe... and I happened to have a clinical study up on the laptop at the time (from NCBI, the National Centre of Biotechnology Information... so an accredited site) about the amazing effects of Astragalus.. so she read it.. thought it was good. But she's still unsure at the effects it may have with his chemo. Ugggghhhhh.... this is so frustrating. It seems to me that a pretty SMART idea for them would be to have an Naturopath on staff, or someone that they confer with that knows about Oncology and Naturopathy....to link the two worlds. The oncologist says they go through this all the time with parents.. wow, this is definitely an area that needs more research. If I could I would do it myself!

Ok..ok... that was more of a rant. Sorry about that.

So I may have a few days at home and want to spend a day cooking lots of food and freezing into containers for us here.. among cleaning, getting some other things done and getting ready for the next 10 day+ induction.

Oh, and another thing the Nurse Practioner mentioned was that AML kids in the past usually live in the hospital for about 5-6 months cause they are always sick with infections... one she mentioned in particular is a Neutropenic Colitis called Typhlitis.. an infection of the bowel. They are living on antibiotics for months basically being so sick all the time from infection. She told me that he WILL become very sick, and unhealthy.. and that how he is now is uncommon but it's sure to come..... great, thanks. That was an uplifting conversation.


Ok, it's 3 p.m., and I need my next dose of caffeine... and my exercise walking up and down the stairs. hehe.

Infection found possibly..

So it looks like his infection may be coming from his Hickman catheter. The last nurse that put his dressing on did a shitty job and I knew it!! Lyric is currently itching it while he is sleeping.. so I called in the nurses. They looked at it and its red, looks a little infected. The nurse who changed his bandage this morning did a culture on it so we are waiting on the results to see if that's the source of his fever.

Goodbye

Sad news everyone. The little girl 2 doors down passed away today. I had run into the dad and asked how things were and he said not good... we didn't get much more of a chance to talk because he had to run. Later in the afternoon I had noticed some hovering staff.. the Social Worker and the Child Life Specialist.. to help with the family to deal with the anguish. Then trickling in was family and friends all in tears. I had to go to the washroom so I exited the room and felt this huge rush of grief and sadness come over me. The Social Worker must have noticed it on my face and asked how I was. I said it's a sad day... she said yes. And she said more so for you because your new to this.. I will chat with you later about it.. but for now you may want to stay away.

I walked away and tears started to well up in my eyes and I felt such sorrow for the family.. and that beautiful little girl. I also felt scared. Scared because what if that becomes me? How am I going to deal with it? Some thoughts passed through my head about maybe feeling some relief.. after all your child is suffering and in immense pain. They have fought a long fight to lose to this deadly and life consuming disease. To let them go would be so damn hard, but I know in my heart I would feel relief that they didn't have to endure the pain. The chemo. The throwing up. The life that is non existent for them because they live in a hospital room and they are not able to be kids.. they can't ride bikes, run to catch the ball, or even swing on a swing.

I didn't get a chance to say anything to the departing family.. I do hope they know that they did an amazing job as parents to endure what they did for their little girl and they fought as hard as they could. I wish them well for the future.

Let's get to some good news... phooo... that was a downer huh.

Lyric is doing fantastic today. No fever. His white cells are down to 2.3, red cells are up at 87 (thanks to the transfusion), platelets are now up at 47 (also thanks to the transfusion) and his absolute neuts are at 0. Which means he's hit rock bottom of his neutropenia. He has absolutely NO fighting power against anything in him at all. But the good news is that it only goes back up from here! Hopefully for a few days at least.

I did mention that we should be home Monday.. although at this point I am not sure. He already had an Echo cardiogram scheduled for Monday at 10:30 .. which is good cause we are here already. But Tuesday he was supposed to come back for his Bone Marrow test.. to see how his bone marrow actually reacted to the chemo. That will also be a determining factor to see if he starts his 2nd round of chemo this Friday. WHERE the hell did the time go?? seriously! I feel like we just got home! In fact I bought all this delicious food and I wanna eat it!! grr.. guess I will have to make a trip home at some point to get ready for our 2 wk stay.

Lyric seems to be doing better with his hair loss. Although I have been trying to encourage him to cut the rest off.. he's got barely any left and what he has left is in patches. But he wants to keep what he has. Oh well.. it's not worth the battle. It's just hair.

He seems to be walking fine now and hasn't complained of his leg hurting much anymore. The residual effect of the chemo must have taken care of most of that tumor. I'm hap hap happy about that!

Do you think I should sneak in a treadmill into this room? Seriously I need some exercise. I went from working out 3 days a week for the last 3 years to taking the stairs here at the hospital when I go for coffee... hmm.. maybe at night when he's sleeping I should also go for a run!

Febrile

Yesterday Lyric lost this little ol tooth.. it has been loose for quite some time. But with Lyric's Platelets being low I told him to leave it alone. But, I think he pushed it with his tongue and out it popped. Followed was about 20 minutes worth of bleeding. I panicked halfway through and paged the oncologist. But then it finally stopped and ahhhh... I called back and cancelled the page.

Afterwards Lyric, Avery and I were having a wonderful time. We were outside enjoying the warm sunshine with the neighborhood kids cleaning my car. It was a team effort... we all washed separate parts of the car. Of course there was a fight over the window washer... so I decided to take that job. Lyric had a great day. No complaints. Until about 7:30 and he stated he was feeling cold. So I sent him inside to get ready for bed. I came in a few minutes later and checked him temp... 38.8. Great.

So again I paged the Oncologist. She called right away and said I needed to bring him in. At this point he's boiling, but freezing... and complaining his head hurts. So it's now about 8:30. I call Lyric's Dad to come to my house to watch Avery. I frantically packed up.. and of course I get to the hospital and forget some important things.. you know how it is.

We are finally at the hospital and they have a private room ready for us in the Pediatric Unit. They come in perform all sorts of tests.. blood from his Hickman and a peripheral poke.. which of course scares the bejesus out of Lyric. They take urine samples and test all his reflexes and joints. They find a lump in his Lymph node behind his neck. Great.

It is now midnight and they still have poor Lyric awake.. but they are making sure they aren't missing anything, Finally the little guy gets to sleep. The CBC they did proved that Lyric's platelets were at 8. Holy Moly... they don't let it go below 20 usually, before giving a platelet transfusion. But fevers eat up platelets. A little while longer and Lyric would start having nose bleeds that wouldn't be able to stop and the slightest bump he would bleed internally. They gave him a platelet and a hemoglobin transfusion through the night. Lyric was up again around 3 shivering... nurse took his temp and he was actually cold. 35. The blood they transfused was apparently on the cooler side. So she grabbed one of those warmed flannel blankets and I crawled into bed with him and had to soothe and calm him down to get back to sleep.

Morning. We get woken up by a lady calling for Janet ?? They were in the room and discharged the day before. Then about 10 more people call in a span of an hour. Ugh... I just want to SLEEP!

The Doc comes in for a visit and says all the testing came back with great results.. nothing serious to worry about. They did think that maybe Meningitis because of the headache and his eyes were sensitive to light. It turns out it's just a virus.. and he's doing very well considering he has no immune system. No coughing.. runny nose... and I think it may be my fault. I had lowered his dose of Astragalus back to twice a day cause days have passed since his sniffles he had earlier in the week. I should have kept it up. Learning experience there!

The Doc also explains there is no concern for the Lymph node... that it's just the bodies reaction to the virus. But he'll keep an eye on it. He also mentions they got back the results from the bone marrow testing they did on Paul, Avery and I to find a match for Lyric for a possible transplant in the future. Avery is a PERFECT match. How amazing is that. Apparently it's rare. WOW, at least there is some good news! But that's not it! There is more! He continues to tell us the genetic testing he did for the mutations...(this can determine is his body will fight chemo or not.. like that little girl I mentioned in earlier posts... your body can start to reject the chemo) well... are you ready.... HE has NO genetic markers. Which makes him LOW RISK ... he's got a more substantial chance at fighting this!

I am just so happy. He sat there and smiled. Didn't really understand what the Doc was saying but says to me it's good news right mom? Yes by boy... good news.

So Lyric's fever disappeared around 1 pm which is wonderful. We should be going home Monday if all goes well and he doesn't go febrile again. They kept saying they were so surprised at how healthy Lyric has been and they said that AML kids usually are never home for a full week at a time. It's been over a week and he's GREAT! A little bump in the road but that's it. They are also amazed at how healthy he is through this. I am pretty sure it's because of my lovely Jane and the healing food he is eating... Jane says she is sure it's the remedies she has him on.

Well I have finished my delicious decaf Latte here at Williams Coffee Pub across the street... I can't get Wifi at the hospital. But this is a nice break when Lyric goes to sleep and I can catch up on the world beyond this.

The Clinic

When we were first sent to McMaster, we didn't know exactly what department we were being sent to. We arrived to the 3F clinic, a place where I had been once before with Avery to see a Pediatric GI. It has an interesting set up... 3 receptionists for 3 different areas of this clinic. Gastro, Cardiac, and Oncology. When I checked in with the receptionist and realized we were in Oncology my heart started to pound fast and hard.. and I felt this sense of panic.

You enter this large open concept room, filled with lots of kids play areas. Toys are in abundance, and the energy in the room is warm and inviting. We had arrived at a time when the place was relatively empty. We were ushered into a room with several Doctors and Residents and were told of the unfortunate news. I also lost my damn nose ring in that room and scoured the floor looking for it while I had tears running down my face. I guess it gave me something to do other than sit in the chair.

We were in that room for about an hour. And when we opened the door the room was buzzing with people.. all these little souls with bald little heads. Some with feeding tubes and some that looked as pale as death. Some that were exuberant and playful. I stopped dead and stood there.. watching over the room and seeing these kids hooked up to their IV poles getting their chemo treatments.. Panic turned into me being mortified and utterly sad.

As time went by while we were staying in the hospital for Lyric's first round of chemo, the clinic was explained to us. We were given a clinical nurse of who, looks after us the whole journey. Zrinka, this wonderful and positive lady. Lyric is to report every Tuesday and Friday to clinic when he is in his "resting" period (which is between chemo treatments). We have to arrive at the Hematology lab no later than 9 a.m., and then straight up the clinic. Shortly after you arrive in the clinic and you sign in Lyric's blood counts are all ready. All the other little souls arrive in the morning as well so the place is hopping.. lots of kids and parents. Grandparents and friends. Everyone there has been going for awhile, the staff and patients are close...like going to your fave coffee shop and they know what you want.. and ask how your dinner party was over the weekend.

Ive met some wonderful folks there, it's nice that we all have the same understanding and feelings about all that is going on. And I've shared my views on Naturopathic Medicine.. and some have actually asked for Jane's number. woo!

I ran into the Dad again today. She is having a rough time at night, and she is in so much pain she doesn't sleep. Her liver is so enlarged..... He was about to get in touch with his Naturopath in hopes he could suggest something to help her liver. He seems to be doing well, and is very strong.

We went to clinic today.. and for the second time we were actually forgotten. I guess we are too new and we aren't part of their routine! Lyric's counts were good.. his white cells are at 6.1, his hemoglobin (or red cells) are at 93! Which means he's been making his own and they are on the rise!! (It's good to have the white fall and the red rise!) and his platelets are at 27.. of which I was concerned with. On Friday they were 30, and on Saturday they fell to 16. That's when we had to go to Emerg for the transfusion. So I asked if we could get one today and they said no. We have to wait until he's symptomatic of low platelets or by Friday when we are back again if they are too low they will transfuse then. I swear.. if I'm back there tomorrow I will be growling at someone.

Lyric is having a hard time with the loss of his hair. He doesn't want to see his friends (except his 2 close friends who have been by his side the whole time) or even go to school at all.. not even to pick up his sister. He says he's embarrassed and is worried of how other kids will react and what they will think. I keep reinforcing that he will be ok, and that people won't care if he's bald. And that people will understand. I think it will take a bit to get used to then he may be ok once he realizes people won't care at all. Poor little guy.. he's so sad. But I will keep reinforcing every day. I even pointed out the other boys at clinic today who seems quite happy and they were bald!

It's me Lyric!

I feel great to be HOME I get to go places I want to go . I didn't like needles, or the blood pressure thing or getting finger pokes. I don't like that I have to keep going back to the hospital. I like that I can do fun stuff at home, and I love eating the food at home. Especially pasta! I like playing with my own toys and seeing my mom, dad and Avery.

I get to walk .which is hard. My leg hurts. I feel good though. I don't like that my hair is falling out. I feel scared that I have what I have. I feel unpopular because I'm different.

This picture is me and mom at the gardens today.

well i dont have a lot of things talk about so bye

LYRIC

Commenting..

I guess there have been a few questions about how to post a comment. Please feel free to comment on any of my posts. I think you can if you go to the bottom of the post where it says comment.. click on it. Then write what you wish.. then under "Comment As" you choose .. if you don't have a google account or any other account they mention you can choose Name/URL and simply type in your name. Or you can enter Anonymous..

I think that works! I would love to hear anyone's comments, suggestions... or words of wisdom.

XO

p.s. I will be asking Lyric to post on here as well.. maybe something we can do tomorrow. I think he may like to use this as an outlet. I wasn't' sure about doing it until a friend mentioned it too. xo.

Photos...

Hemoglobin Transfusion. Lovely red blood hanging from the pole and going into his Hickman Catheter. After you have several transfusions your body can start to reject it.. they can have allergic reactions.. but guess what? They have a drug for that.

Photos...

Lyric didn't eat for days, dropped a few pounds. During chemo they lose their appetite.. so finally he blurts out he wants a cheeseburger and fries and pop.. something he rarely gets. So of course I ran to BK and picked him up a "large" burger.. hehe, he's now beyond the kids size.

Photos...

I have been meaning to post some photos..

This one here is Lyric on day 1 of his chemo. Notice the beautiful orange colored poison being pumped into him.. this one is called Daunorubicin. This one can weaken his heart. It's pumped into him for 6 hours.

Ups and Downs

Well.. we went yesterday to Mac to get his blood counts. They were wonderful!! His white count was still low (which is what they want to see of course!!) and he was starting to make some hemoglobin himself. He is still Neutropenic.. but that is to be expected they said for a week or two. He has a healthy appetite, sleeps well, has no nausea or vomiting, drinks his 2L of water daily, pees, poops... they are simply amazed at how well he is doing... and so am I! It feels wonderful to see how hard he is fighting and then seeing the blood test results as proof.

Today started out as a great day, we were to have some pro-bono family photos done of me and the kids before Lyric's hair all falls out. Another wonderful neighbor of ours was putting on a car wash and BBQ for Lyric today too.. had the fire department there, and man there were like 10 firefighters there with the Chief! So Lyric was happy to go into the trucks and they were so happy to meet Lyric. But we couldn't stay cause Lyric wasn't feeling great. I had noticed some petechiae.. little spots on his neck. A sign of low blood platelets. He also had lots of unexplained bruising.. so I got home and immediately called the on call Oncologist. She told me to bring him into Emerg at Mac for a Platelet transfusion. We got there at 1 p.m., and didn't get home until 10. A half hour transfusion lasted most of the day. Why are they so slow in Emerg?? They let us in right away, they had a room all ready for us. We were also told that Emerg was THE WORST place for him to be being Neutropenic. The nurses that were on then came in the room with masks on, but the next shift nurses didn't and I gave them shit! Ohhh.. he's wearing one, so he should be ok.. I said NO, that's not what I was told, and you are dealing with sick people all day! Man oh man.. momma bear can be very protective right now!!

So as Lyric was lying on the bed in emerg we noticed his hair falling out in clumps.. it was everywhere. He ran his hands through his hair and he would have a handful.. at first he was laughing about it and Avery chimed in.. poor sole was making the best of it. Then a few moments later said, Mom.. I don't want to have a shiny bald head. I have a big head. I reassured him his head was beautiful and being bald was ok.. and to be proud of it. I said if he wanted to wear hats, bandanas, beanies, or even a wig he could. It's going to be very weird for me to see him without hair. A constant reminder of how sick he is and how he's being pumped full of poison that is enough to make your hair fall out.

So Lyric was supposed to do a low risk activity tomorrow with his best bud Callum.. Lyric has always wanted to go to the driving range and learn how to hit. There aren't a lot of people there, and there is no real risk of injury.. so we said he could go. But the Resident Oncologist tonight said no.. noope, nooo way. Poor Lyric is not happy.

I have also learned that I cannot make ANY plans even for the day. Because it can change at the last minute.

I ran into the Dad I mentioned in one of my other posts, their daughter whom also has Leukemia and is dying is still doing ok.. they are spending lots of time with her and just waiting... how horrible is that. Waiting.

So we are back at the Mac clinic again on Tuesday for his next blood counts.

I am off to bed.. that Astragalus is kicking ass on this cold I've been fighting. But I can still feel it.. wondering if maybe it's allergies?? hmm... anyways some rest will help nonetheless.

Avery is doing very well through all of this, she's very supportive and even puts up with Lyric when he's in a grumpy mood (which is a side effect of the chemo too..). She is so happy and uplifting, just makes your day.

Home Sweet Home / BBQ Fundraiser

Ahh.. there is nothing like sleeping in your own bed. Lyric and I couldn't wait to hit the sheets last night. I went and got some healthy groceries and Lyric has had a wonderful appetite. He's even enjoying my usual healthy choices like buckwheat pancakes, and quinoa..

He's doing well.. enjoyed the day playing with his toys and with Avery. He's being such a good boy.. back to the normal rules of the house. And I actually think he likes it. Structure is so wonderful.. kids really need it.

I have a shelf in my kitchen now dedicated to all the meds Lyric has.. my wonderful and amazing Naturopath Jane called me at home last night and we went through some new remedies for him. Vitamin D (lack of sunshine).. Melatonin (for a good nights sleep), and Active Bacteria (helps fight cancer, good for his imbalance and his weakened heart).. alongside the Astragalas root (for his immune system). So I feel sooo much better he's getting holistic care alongside the chemo. It will make him healthier and stronger so he can get through all this nasty stuff!

The BBQ Fundraiser was tonight. My very talented and wonderful neighbor put together this amazing BBQ, there were limo rides, bouncy castle, games for kids, water balloons, and a HUGE silent auction. The place had an AMAZING turnout.. so many people and so much love and support. I still am amazed at how people can come together in a time of need. Lyric was there with all of us, he wore his mask. Played with some of the kids..and got to meet lots of new people. He wasn't too happy however when he got stung on his thumb by a wasp. He screeeeamed! Those wasps are TERRIBLE this year! Everywhere! Do you remember the days when they used to spray the whole area for bug problems? I'm not sure if they did it here. But when I lived in Manitoba they sprayed the whole city for mosquito's.. man, that can't be healthy. Stupid.. stupid.

Went to Lyric's school today, spoke with his principal. We are working on a plan to have Lyric home schooled, along with schooled in the hospital..and the odd day he's healthy enough to go to school. He's a very smart boy, so maybe he will still be able to do his grade 3.. but if not that's ok too. It will keep him busy, and I can work with him at home too. Maybe I'll throw some more french in there! He didn't get to finish his french camp from this summer and he was learning so much.

We are off to the hospital first thing tomorrow for his blood counts. I am anxious to see his Absolute Neuts.. (this is the count that determines whether he is Neutropenic) .. considering we have him on Astragalus.. hmmm. I hope though that his white count is not too high again.. that's a scary number. The higher it is, it means the leukemic cells are producing at a very fast rate. I'm biting my nails just thinking about it..

Ok, I better get off to bed. Avery I'm sure is fighting a cold, and I think I may be too. Ugh!

Going Home!

So it looks like we are going home tomorrow! His counts today were much better, they were happy. Although he still has an issue with the pain in his leg but it's come a loooong way! That tumor will just take a little more Chemo to disappear.

He had a platelet transfusion today as his platelet level was quite low.. it was at 10. If he was bleed for any reason he would bleed out.. it wouldn't stop. He blew his nose today and blood came out and I panicked for a bit... but then it didn't continue so maybe it was just old blood or because it's ridiculously dry in here!

Our wonderful Aunt Heather came to visit again today and has been bringing us food.. it's so much better to have home-made food instead of take-out. She's been a wonderful support for all of us.

Lyric was granted an LOA today (leave of absence), so he walked to the car without many issues and we went for a drive.. had the windows rolled down, letting the fresh air and the sunlight in. He asked for Swiss Chalet for dinner so we drove around Hamilton looking for one and finally found it. We grabbed a family pack and grabbed a picnic table here at the hospital and ate.. he really enjoyed it. His mouth sores are getting worse, so he's really got to stay away from the acidic foods.. it's hard trying to think if bland and soft foods for him to eat that will fulfill his dietary needs. He's a bit constipated (a first for him ever, and a side effect of chemo) so I will have to get some prunes, and such... oh boy.

Our Naturopath has started us on some Astragalas root extract, it is a very effective anti-viral. It's expensive, but well worth the money for all of us to NOT get sick while Lyric is Neutropenic. Jane has researched and found it completely safe for Lyric to take.. so we are going to get a little bit of immunity back into him naturally and that only means he can be strong enough to undergo his next treatment sooner!

As we speak they are "topping" Lyric up on red blood cells before we go home... imagine, having to "top" up blood into your child before going home. Some of this stuff is just plain messed up!

Lyric will have some restrictions while he is at home of course. He can't do anything DANGEROUS... like sky diving, deep sea diving, stunts, tight rope walking... hehe, no really he can't ride his bike, skateboard... anything that would pose a threat to bleed. Poor little guy will have to endure watching all the neighborhood kids do his favourite things. I will have to find him some other less dangerous things to do....hmmmm

Avery was up with us since yesterday, she wanted a "sleepover" with Lyric. I cleared it with the Doc and she stayed in his bed with him. It was sweet. Today she was a handful... but it was sooo nice to spend time with her. Maria, the Child Life Coordinator here spent an hour with her today. She gave Avery a cloth doll. This doll was to be Lyric. So Avery coloured on the face and clothing. Then Maria spoke to her about Lyric having Cancer and what that meant. She also pinned a hickman tube to it, and explained what it was for. She also poked it with needles, put band aids on, and added some medicine through the Hickman. Maria is simply amazing! She has the perfect way to talk to siblings so they understand what it all means and so she is educated and knows what to expect. Avery loved it and is now well versed on what a bone marrow procedure and a lumbar puncture is...hehe.

I am a super organized person. And what kills me is that I can't even plan a day ahead. Because everyday there is no telling what can happen. I can't even make plans for a coffee tomorrow with a friend. Even buying groceries... I will have to buy a few days at a time. Because at any moment we could be back at the hospital for who knows how long and I would just have to throw it away! This is going to be all new learning for me.. a lifetime of habits to change overnight.

Lyric has been nothing but patient and understanding. He's accepted his disease and is working pretty hard at going with the flow in order to get better. The only thing I'm struggling with is food. Chemo changes their taste buds, so he's become fussy over foods... and of course I think being spoiled while here has added to that. So I will have a lot of coaxing and pushing him to eat properly again.

Oh, and my friend Amy started a Facebook group for Lyric called Lyric's Fight.. if you care to join.

Ok.. time to catch up on a little Y&R..hehe.