Sun. Nov. 26th

OH MY GOD! What can I say about Friday night, it was an absolutely overwhelming experience. Joe & I are FOREVER grateful for everything and everyone being there and supporting us. I found it to be a very emotional night as some of you may have noticed. I think we had over 400 people there and I would like to thank each and everyone of you for coming and those of you who made donations but couldn't make it. Thanks to all the people that donated all the amazing silent auction prizes and gift basket items, thanks to Dan for cutting his hair and organizing all of that, thanks to those who got there hair cut that evening, Kevin, Mike, John and of course to Helga (you look marvelous), to Margaret for organizing all the food and those of you who brought food, to Mike for DJing, for everyone helping clean up, to selling tickets, to Lorraine & Gail for organizing the gift baskets, to Scott for organizing the video and pictures, to Kyle for taking pictures, to Tania and Xana and many more for decorating the hall and for those who helped clean up, to Ann for ordering "Team Meghan" t-shirts for the family and I'm sure the list goes on and on and I don't want to forget anyone. It was so amazing to see all the people that were there and Joe, Meghan and myself are forever grateful! It was so nice to see new friends to old ones too. Thanks again to Wendy, Nicole, Sue, Vanessa & Frances for all their hard work and time that they put into this unbelieveable evening that I will NEVER forget. Thanks to all the people that came from as far as Kitchener, north of Beaverton, Bolton and Campbellford and maybe even farther. We will never even begin to thank each and everyone of you for everything you've done. Thank goodness I went when we did and stayed till the end as I still didn't even get a chance to talk to everyone and I'm sorry about that. My feet were killing me by the end of the eveing but I wouldn't have wanted to miss it because I wouldn't have believed it if I hadn't been there to see it with my own eyes.

As for Meghan she doing well. She finished this round of chemo until the 11th of December and we're back down tomorrow for a check up. Josh and Samantha got her out for a walk to the store today and I think she is feeling a bit better, maybe without all those chemo drugs in her.

I hope you enjoy some of the pictures.

Love to ALL of you and thank you for making the evening an unforgetable one for both of us.

Love

Michelle & Joe

PS I hope you don't mind your picture on the blog Dan?

Friday, Nov. 24th

She has had a fairly good week, I'm always so nervous to say things are going well because you know what happens when I do that, but I can talk in past tense and she's still sleeping well but experiencing a lot of joint and muscle pain in her back, shoulders, feet and ankles which is normal from the meds. Her physio has been here twice this week and they are quite happy with her progress but it was alittle tough yesterday because her feet were slightly swollen. We've had to increase the codeine for the pain to just take the edge off, which seems to help. Her counts should start going down on Sunday or Monday so that is when we have to avoid infections so again everyone has been wonderful with staying away and we greatly appreciate it as we would like to avoid the hospital stays as much as possible.

Just so you know that on Wednesday afternoon we went and bought her a heated blanket and a therapy foot spa. She has been using them as much as she can.

Thanks again to all of you for your love & support,

Michelle

Wed. Nov. 22nd

These are some pictures from the Look Good, Feel Better Program that Meghan went to a few weeks ago and I thought you might like to see the pictures.

Meghan has obviously been very tired since her chemo and she's been having joint and muscle pain in the same areas plus new ones. She's been taking her nausea meds because they told us to for a few days after chemo and last night we stopped and she felt sick so we gave her a dose at bedtime. She woke up and felt alittle nauseated but it went away so we'll see how the day goes. They have a new nausea drug that apparently is a wonder drug that they give all the kids and works on almost everyone.

The physio lady came by yesterday and she hasn't been here since last Tuesday and she felt that Meghan has made great improvement. Meghan has been going upstairs to sleep so we've been doing the stairs about 3 times a day and each time she tries getting braver and of course it's helping.

Other than being tired she's been doing well and we're back down Monday to check her counts. As for becoming a nurse I feel like I am one already.

We have learned to live one day at a time and today the sun is shining and it's beautiful, maybe we can even get out for a walk :)

Michelle

Mon. Nov. 20th

Today was a long day but fairly good one. We arrived at the hospital around 9:30 and it's quite a wait. You line up to register when you get there, than you go into a line to have your blood taken than you wait in the waiting room to be called by the nurse to take your height and weight (which has gone up a kg, yipee) and than put in a room patient room where you meet with the dietitian, who was very happy with Meghan's weight gain and her eating. Than the doctor comes in and goes over everything with us regarding her protocol, any problems or concerns and let's us know what's happening next. The nurse will come back and check BP which has also been fine and go over any questions and give us prescriptions, etc. Oh yeah and in between all this we had to go for an ECG which too was fine before they will do the chemo. Then we wait to go to the IV room where they will do the quick chemo or access the port, but in Meghan's case today they just accessed the port and hooked up the nausea med, than we proceeded to the daycare room where they do the longer chemo but of course the meds weren't up yet so we had to wait for pharmacy to send it, but there were no beds available so we went down the hall to the teen lounge until the chemo came up and they hooked it up to the IV and we went back to the teen lounge where we waited for the chemo to go through the IV and than they had to wait to flush it with saline and than finally at 2:30 we were free to go. Oh yeah and did I mention that Meghan HATES having her port accessed and the nurse-in-training today missed her port and jabbed in her chest (not on purpose of course) than the other nurse tried and she got it no problem, thank goodness :)

So we came home with 4 new meds not to mention the other ones we already are taking, no stress in my life, yeah right! Her one chemo med has to be given 2 hours after she's eaten right before bed for 5 nights, by me wearing a mask and gloves and there's 5 1/2 tablets so one has to be cut with a pill cutter which can't be used by any other meds because this is a chemo drug. Do you think I'm gonna sleep well? I hope we both do!

Michelle

Mon. Nov. 20th

Today was a long day but fairly good one. We arrived at the hospital around 9:30 and it's quite a wait. You line up to register when you get there, than you go into a line to have your blood taken than you wait in the waiting room to be called by the nurse to take your height and weight (which has gone up a kg, yipee) and than put in a room patient room where you meet with the dietitian, who was very happy with Meghan's weight gain and her eating. Than the doctor comes in and goes over everything with us regarding her protocol, any problems or concerns and let's us know what's happening next. The nurse will come back and check BP which has also been fine and go over any questions and give us prescriptions, etc. Oh yeah and in between all this we had to go for an ECG which too was fine before they will do the chemo. Then we wait to go to the IV room where they will do the quick chemo or access the port, but in Meghan's case today they just accessed the port and hooked up the nausea med, than we proceeded to the daycare room where they do the longer chemo but of course the meds weren't up yet so we had to wait for pharmacy to send it, but there were no beds available so we went down the hall to the teen lounge until the chemo came up and they hooked it up to the IV and we went back to the teen lounge where we waited for the chemo to go through the IV and than they had to wait to flush it with saline and than finally at 2:30 we were free to go. Oh yeah and did I mention that Meghan HATES having her port accessed and the nurse-in-training today missed her port and jabbed in her chest (not on purpose of course) than the other nurse tried and she got it no problem, thank goodness :)

So we came home with 4 new meds not to mention the other ones we already are taking, no stress in my life, yeah right! Her one chemo med has to be given 2 hours after she's eaten right before bed for 5 nights, by me wearing a mask and gloves and there's 5 1/2 tablets so one has to be cut with a pill cutter which can't be used by any other meds because this is a chemo drug. Do you think I'm gonna sleep well? I hope we both do!

Michelle

Mon. Nov. 20th

Today was a long day but fairly good one. We arrived at the hospital around 9:30 and it's quite a wait. You line up to register when you get there, than you go into a line to have your blood taken than you wait in the waiting room to be called by the nurse to take your height and weight (which has gone up a kg, yipee) and than put in a room patient room where you meet with the dietitian, who was very happy with Meghan's weight gain and her eating. Than the doctor comes in and goes over everything with us regarding her protocol, any problems or concerns and let's us know what's happening next. The nurse will come back and check BP which has also been fine and go over any questions and give us prescriptions, etc. Oh yeah and in between all this we had to go for an ECG which too was fine before they will do the chemo. Then we wait to go to the IV room where they will do the quick chemo or access the port, but in Meghan's case today they just accessed the port and hooked up the nausea med, than we proceeded to the daycare room where they do the longer chemo but of course the meds weren't up yet so we had to wait for pharmacy to send it, but there were no beds available so we went down the hall to the teen lounge until the chemo came up and they hooked it up to the IV and we went back to the teen lounge where we waited for the chemo to go through the IV and than they had to wait to flush it with saline and than finally at 2:30 we were free to go. Oh yeah and did I mention that Meghan HATES having her port accessed and the nurse-in-training today missed her port and jabbed in her chest (not on purpose of course) than the other nurse tried and she got it no problem, thank goodness :)

So we came home with 4 new meds not to mention the other ones we already are taking, no stress in my life, yeah right! Her one chemo med has to be given 2 hours after she's eaten right before bed for 5 nights, by me wearing a mask and gloves and there's 5 1/2 tablets so one has to be cut with a pill cutter which can't be used by any other meds because this is a chemo drug. Do you think I'm gonna sleep well? I hope we both do!

Michelle

Sun. Nov. 19th

Meghan has been taking her codeine at bedtime and so far it seems to be helping, she has slept the last 3 nights for almost 12 hours and she's now moved upstairs to sleep. She usually comes down just before midnight to go to the washroom and other than that she's there until the morning. Since she's been sleeping well she's been feeling better in the day and no headaches. She's just using the heating pad for the back pain and it seems to be holding her over until bedtime.

Tomorrow we are back down to the hospital for our next bout of chemo, we're not sure if they will be doing 3 or all 4 of the chemos. The one she'll be taking tomorrow does tend to cause nausea and vomitting so they will give her an anti nausea medication about a 1/2 hour before the chemo and it seemed to help in the past. The other 2 are meds that she will take orally for 5 days. We are also scheduled for an ECG tomorrow while we're there so I pressume it will be a long day because the one chemo takes over an hour to go through her IV and they will have her wait around to make sure everything is good before they send her home.

Although we don't enjoy going to the hospital we do enjoy visiting our nurses, doctors and other staff, they are always so friendly to us, they are like part of the family now.

Take care,

Michelle

Thurs. Nov. 16

Meghan has had a headache for 2 days and she's had some joint pain. She has also had 2 very restless nights sleeps. So this morning around 4 am we gave her some codeine for the headache and to hopefully help her fall asleep and she did until around 9 am. We gave her her meds around 9:30 and she was sick at 10 so I waited for the nurse to come, and in the meantime I put a call through to her clinic nurse. She eventually called and told us we were to go to the hospital where they could check her out and monitor her there. Shortly after we got there her headache went but they had to do blood work and just check her for themselves and we had to see the on call hematology/oncology Dr. As it turned out everything seems to be fine except her magnesium and potassium which could be the cause of the back pain. No fever and BP is normal so we are just to give the codeine for joint pain as well as headaches and back pain. She's put on weight since Monday so that's a good thing and we also didn't have to stay which is another good thing.

We also had a wonderful admitting nurse Linda a friend of Frances.

Let's hope for a good sleep tonight for her.

Michelle

Tues. Nov. 14th

Today we were back to the opthamology dept. to have her eyes checked again and everything was fine. When we came home we had the nurse come by, than I had called a call from the physio lady who couldn't come this week either as she's sick so she said she'd come next week or she could find someone else, so I asked her to find someone else and the girl came this afternoon and was lovely and she'll be back on Thursday. Meghan had an hour with physio and I think she looked really good tonight with some colour in her cheeks, maybe the workout did her good. After that we had the interlink nurse come by, so all in all it was a busy day.

We're back down on Monday for the rest of the chemo and hopefully if the weather stays nice we can get out for a little walk.

Michelle

Mon. Nov. 13th

Today was a pretty good day but they only did the one chemo. They decided that they wouldn't do all 4, that they'd hold off on the other 3 and just see how she reacts to the one, it's the one that has a chance of causing seizures. They will do the other 3 next Monday and possibly the one that they did today as well. She also went to see the occupational therapist and she did excellent there so they don't need any follow up on that. Shortly after we arrived home today they called about a follow up opthamology appt. for tomorrow at 10 a.m., no resting that's for sure. Neither of us had a very good sleep last night but hopefully we will have a better one tonight. She had one of the nurses she had had before filling in on the clinic floor giving the chemo and I think that made her feel a bit more comfortable for her first outpatient chemo treatment. Her results from her echo that she had on Thurs. came back fine which is great. Her weight hasn't changed since last Mon. it's exactly what it was last week, which is good that she hasn't lost any weight and the dietitian gave me some suggestion on what to avoid and what to add to help her gain the weight.

Hopefully everything will go well this week and we can start the chemo next week with no issues.

Michelle

Sat. Nov. 11th

Sorry I haven't written sooner to let you know what's been happening, I got yelled at from my dad for that, sorry Dad!

Meghan had an appt. on Thurs. at Sick Kids. It was an echo cardiogram and we haven't gotten the results of that yet, we will on Monday. She also went to a program called "Look Good, Feel Better" where they teach you how to apply make-up, do eyebrows, wrap scraves, do your hair, plus a Hugo Boss Knapsack full of Mac make-up, Mary Kay make-up, moisturizers, a t-shirt and much more, it was amazing what they give them.

We are back down Monday morning where they will start chemo, check her counts, etc. I pressume we will be there for most of the day because the chemo takes a bit to go through the IV and they will probably monitor her for alittle bit after that. We will probably get more info on how often we are suppose to be there.

Meghan has been feeling very tired and she's still having back pain which should be going but I will mention it to them on Monday. The nurse is coming every day and she's suppose to be having physio twice a week but of course they haven't come yet, but I have called twice and will mention it on Monday when we go as she really needs to build up the strength in her left leg.

We are so glad to have this blog to be able to update everyone, you have all been amazing and we are absolutely blessed by everyone's prayers and good wishes.

Love to all,

Michelle

Wed. Nov. 8th

Not a lot has happened since the last time I wrote, which is a good thing, and hopefully the norm. We had an interlink nurse come today to talk about school, resources available to us and Josh and Jamie if needed and anything we may need or any questions that we have. After that the regular nurse came to check her BP which has been stable since we came home.

Tomorrow we're back down to have an echo cardiogram down and than she's in a program called Look Good, Feel Better.

She's been feeling pretty good, but tired still and weak. Her eating is getting better but it's slow. She's getting around better but we're still waiting for physio to come which is suppose to be 2 times a week and we haven't heard from them yet. We have a wheelchair for her whenever we go out or even if she just wants to go around the block and get fresh air and can't walk.

We're back down Monday for her 2nd round of chemo and blood work. We're just glad to be home and eat when we want and what we want, it's amazing how the little things in life can make a huge difference.

We appreciate everyone's support and don't even know how to thank everyone.

Forever grateful,
Michelle

Mon. Nov. 6th

It didn't seem real until Sunday morning when I woke up in my own house, speechless!

Meghan's BP has been excellent since we came home but she's still on daily medication for that. We went to the hospital this morning for our appt. our tests results were very good. The one test showed negative everywhere which is great. The other one still showed some spots in the tummy. She has had many problems during her treatment but has responded very well. She starts her next round of chemo on Monday with 2 injections and 2 medications to be take at home for a week by mouth. They are not 100% that the one IV chemo didn't cause the seizures but they are going to go ahead with it anyways because its in her protocol and of course if it causes more seizures than they will have to find another chemo but for now they can't prove it was that drug, so cross your fingers.

We are back down on Thursday for 2 appts and we have physio coming twice a weekand a homecare nurse once a day. I thought we might have time to rest but so far we haven't.

We are so thrilled to be home in our own bed and using our own shower and eating what and when we want.

Thank you again to everyone for their messages and poems as we love reading them.

Love

Michelle

PS I will try to keep updating the blog as often as I can but I can't guarantee it will be every day.

Sat. Nov. 4th

WE'RE GOING HOME, WE WANT THE WORLD TO KNOW, WANT TO LET IT SHOW, WE'RE GOING HOME, do you think I'm excited?

Yes we have finally arrived home. The nurse came in this morning and said she was hoping to send us home by noon, and we're like yeah, okay. We didn't start packing or getting too excited. She came back from rounds with the other staff and told them not to screw this up or I was going to kill her. Finally around 10:30 I went and said is this for real should I start packing and she said start packing. We did and we still didn't get to excited as things can always change at the last minute. I had to go and get the prescriptions filled first before we left, all 9 of them and of course there was a problem with one, so they were going back and forth with the doctor so we had to wait and they couldn't find the discharge papers for me to sign (nothings been overly easy here). Finally by 1:10 p.m. we were on our way home and even we when arrived it didn't and still doesn't seem real, I still feel like we have to return soon. I'm sure it will hit home when we're in our own beds tonight.

Here BP has been fine since we got home, surprise, suprise.

I hope nobody takes offense to this but we'd appreciate if EVERYONE called first before just stopping by to make sure it's okay first. We don't want to many visitors at one time as she still is very weak and needs her rest. I have hand sanitzer at the front and back door for everyone as we also need to avoid ANY infections or it could land her back in the hospital and none of us here want that. I know I'm getting alittle anal but I have to.

We are back down the hospital Monday for our clinic appt. and the results of all our tests that we had last week.

We appreciate EVERYONE's prayers, good wishes, emails, blog messages, gifts and thoughts. We are absolutely blessed with great friends, family, co-workers and neighbours.

Love,

Michelle & family

Fri. Nov. 3rd

Fairly quiet day today. She had no temperature and her BP was high this afternoon but they gave her medication and it's fine now. I finally went and got my 4th BP cuff and this one actually works, unbelieveable. The tests have come back good but I will find out more on Monday with our oncologist. She's had a bit of a headache and she's very tired tonight for some reason so they're going to keep a close eye on her. Her BP is fine so hopefully it's just a regular headache and nothing out of the ordinary. She's off all IV's today and for the night so they will see how she is in the morning.

Michelle

Thurs. Nov. 2nd

The Gallium was this morning at 8:30 and lasted about an hour and a half. Then we came back to have a tiny break before we went off to Physio for about half an hour which went really well. Than back up to our room to drink some contrast for the CT scan which they moved to this afternoon instead of tomorrow. Then a dietitian came in so all in all it was a busy day. We found out that we've been recording the wrong liquid consumption so she's actually getting a lot more than what we thought. One of the nurses had told me the cup was 125 ml which was really 250 mls and meanwhile they've been adding saline and TPN for make up what she's been missing which she hasn't been missing all along, which is actually good, but may explain why she's full faster than normally because she's filled up with fluids, duh!

Blood pressure was slightly high this afternoon but the nurse figured it might have something to do with all the liquid intake and when she checked it a bit later it was fine. No more fevers and no infections have shown up. Her white blood cell count seems to be going up which is good as well. Tomorrow they will compare the CT scan with the gallium and hopefully find out our next course of action.

Don't know when we're going home and afraid to ask because it's such a let down when you think you're going and you actually don't.

Michelle

Wed. Nov. 1st

We had an okay night and we were told around 8:45 that they wanted her now for the MRI and that transport would be here in about 10 minutes to get her. So here we go again, I jump in for a shower and told her if they come when I'm in the shower I'll come and find you, and sure enough they come and when I come out they're gone, so off I trot to the basement to find her and get lost. There she is sitting all alone in a wheelchair waiting for me. I didn't even know they were doing an MRI today. It took about 45 minutes and we came back up around 10:45 a.m. Apparently they told Joe there's nothing to worry about, I'm not sure if it's gone or the swelling has just gone down, I'll find out tomorrow from the doctor's. There doesn't seem to be any signs of infection and her white blood cell count is going up. No more fevers or high blood pressure, but of course we're still here, surprise, surprise. I really don't think they want to get rid of us. I think the day they actually tell us we can leave I won't believe them. She is scheduled for her gallium scan tomorrow morning around 8 am and it takes about 1 1/2 hours in length. I think they probably want to check that before they send us home and of course she's scheduled Friday for a CT scan anyways, so like I said before probably not before Friday anyways! I think I'm coming down with a bit of a cold but she had a bit of a sore throat on Monday and a stuffed up nose so I guess I'm getting it. I'm sure because we're together 24/7 I'm just catching her germs now.

Again, thanks to everyone who writes I enjoy reading them to Meghan. It's amazing to us that so many people care :)

Michelle