Tues. Oct. 31st Halloween

It's not exactly how I planned on spending my birthday but there is no where else I'd rather be than with my 3 kids and family. How can I complain when Jamie says she loves me so much, Meghan says she loves me more than anything and loves spending time with me and of course Josh tells me no matter how old I am, I'm never too old for a hug, gotta love it :) Thanks for all the birthday wishes, happy birthday to you too Lisa.

Anyways about Meghan, her Blood Pressure was good today as they've increased her daily dose and there was no fevers today. Her blood cultures for infection are currently negative so we will see what tomorrow brings, it usually takes a few days. They have trick or treating here at the hospital so we did that for about an hour and a half this afternoon and she walked the whole way which was great. They don't give out candies here just pencils, stickers, erasers, etc. but it was fun to see everyone all dressed up from children to adults.

You always think you have it bad, but there's always someone else worse off than you. Today I was speaking to a father and I asked him how long he's been here as we came up to the oncology floor 4 1/2 weeks ago and he said they've been here since July. They have 3 kids and they are from out of town. Mom stays during the week and dad comes and relieves on the weekends. Wow, and I'm complaining about 6 1/2 weeks.

Hoping to be home before Christmas!

Michelle

PS Happy Birthday Kevan, I hope you & Sue are enjoying South Africa.

Mon. Oct. 30th

Today was our scheduled day to go home and of course they're not letting us, as her BP is really high, they want to get that under control first. The nurse checked it first thing this morning and than asked me to check, because of course I will have to do it at home and she didn't tell me what she got, and I did it and it was the exact same as hers. Scary but I'm going to be a nurse in my next life, before I came in here I didn't even really know what normal BP was now I know too much, more than I ever wanted. She is also very nutripenic (don't know if I spelt it right) but it means her white blood cell count is very low and she's at risk for infection. If she had a fewer of 38 or more we'd have to come back to the hospital and she's currently at 37.2 so they will be watching that as well because if she has a fever than she has to go on antiobiotics and that usually takes a couple of days to get under control. Because her chemo is so intense right now it's common for patients to get infections. I think we're best not to know when we're going home and when they say we can leave than we'll just run out the door. They haven't given us any idea of when we may go but I think it's best not to think about it, even though it was 6 weeks on Saturday, but whose counting.

Missing everyone and our home.

Michelle & Meghan

Sat. Oct. 28th

Today we got a day pass to go home for a few hours and it is nice. This is a picture of Josh with Meghan's wig and Meghan with her friend Sam (long lost sisters, as they call themselves) don't you think they look alike. We are getting ready to head back and we're not looking forward to it.
Monday she is scheduled for a few things before we leave and hopefully her blood pressure will go down as it's quite high right now. She's been feeling quite good and she actually said she had a good night sleep last night.

I thought you could all use a laugh like we did with these pictures. Josh always knows how to make Meghan laugh.

Michelle

Thurs. Oct. 26th

It was a good night last night in the sense that there were no seizures but very little sleep. They came in every hour to check her vitals which was good and she was determined to get up and go to the washroom, that's my Meghan, stubborn (good for her)! Today she eat well had a few walks and wanted to go home. The doctor came and told us as long as everything goes well it should be Monday. I told her we will plan for next Friday and if we go home any early than that will be a bonus!

She will finish her chemo Saturday and come back next Wednesday for a gallium scan and on Friday for a CT Scan and that's when they'll let us know what the next phase of chemo will be. She's not to happy about staying until Monday but they don't like to release on the weekend and I'd rather be here for the final dose of chemo and give us a couple days after that before we head home.

Thanks again to everyone who sends comments as I read them all to Meghan and she is overwhelmed that so many people are thinking and praying for her, as am I.

Forever grateful,

Michelle

Wed. Oct. 25th

Well I didn't want to write yesterday and tell you we were scheduled to go home today incase I jinxed it and guess what, we're not going home today. Yesterday she had her IT chemo (or LP spinal chemo) about 3 p.m. and she came up with just alittle back pain which she had since last Tuesday. She was so excited about going home today that we packed our stuff and most of it went home last night with Josh. About 4 am her Blood Pressure was high so they gave her some meds and about 7:20 her IV was peeping so I called the nurse and she came and fixed it and about 15 minutes later I woke to her shaking which I thought she was cold and got up to see that she was having a seizure. I called the nurse and then the whole team came in. She's now been for another MRI where they have found swelling on the brain like the last time but in a different area, so that's why there wasn't the same signs as last time like headache and loss of vision. This swelling is called P.R.E.S. which basically means it's swelling caused from the chemo meds but it is reversible. They also need to keep her BP down which they are with medication. So needless to say we're not going home today and they will reassess her on Monday. Well I was so glad that we were here and not at home when it happened. She is very sleepy from the meds they gave for the seizure so she'll probably sleep most of the day. I'm just concerned of course that she may have more seizures like she did the last time and they said it was a possibility. Anyhow that's of course all I have to say for now and let's just hope that there won't be anymore seizures and we can get her home next week sometime, here we go again. Oh and they said they won't be doing anymore IT chemos, because they think that's what might have caused this.

Hangin in there,

Michelle

Mon. Oct. 23rd

Well today we were waiting for the clinic nurse to come and explain everything we need to know when we go home and of course she didn't show and won't be here until tomorrow. Alot of the nurses have already given us info about going home and what to avoid and what to watch for, apparently we will have to come back in regularly to have her blood levels checked and eventually we learn to know when her blood counts are down, which means when she's most at risk for infection. She also went off to physio today where they wanted to try her on some stairs as she hasn't done them in well over 5 weeks now and she had trouble so they will be sending an occupational therapist to the house to do physio with her and she'll have to be on the main floor for awhile to avoid the stairs. Anyhow that is all stuff we can work on when we get home. She is having a hard time at the end of the day when Joe and the kids leave as she wants to go home and I just keep saying a few more days and we'll be outta here. She's scheduled for her final spinal chemo tomorrow and hopefully everything will go as smoothly as last week. Keep your fingers crossed.

I so enjoy reading all your messages on the blog but it's sad when Josh's friends are writing and making me cry, stop that Jacqueline. Like I have said before we have amazing family & friends and that means my kids friends too.

We love you all

Michelle

PS I don't know if anyone reads 24 which is a little paper but Meghan's picture was in it yesterday with her getting her hair cut. www.24hrs.ca page 7

Sun. Oct. 22nd

Well so far the weekend has been pretty quiet without too many doctors visiting. Meghan has been having a lot of back pain lately so she's not been sleeping well and with the IV going off in the night it doesn't help either. Today we went for an xray on her back to see if they can see why it's bothering her so much. Of course it started Tuesday morning BEFORE the chemo in her spine otherwise they would have thought it was maybe from that. She went to the lobby today where they were offering free haircuts to patients so she decided to get it alittle short as it's starting to come out, you may have seen her on Global or City. We also went for another walk down to the lobby and one around the 8th floor. She is having 3 meals a day not full ones but they are very happy with what she's eating and drinking and hopefully cutting down on her IV fluids tomorrow and make sure she's maintaining her weight. Every day we are getting closer to going home and she has definetly had enough of this place as have I. We are both looking forward to sleeping in our own beds and shower in our own bathroom. I've learned so much since we've been here, like what's really important in life and how important Joe and the kids are too me and like they say "don't sweat the small stuff!"

Michelle

Fri. Oct. 20th

Not much happened today which is always a good thing. She ate better today and her weight has stayed the same which is excellent considering she was losing weight. She had 2 good walks today plus physio she does when she's walking and also when she's in bed. I see a little more sparkle in her eyes each day as she knows it's getting closer to home time. She's scheduled for her 2 chemos tomorrow and one is her second dose which is the one that causes nausea, and a few other side effects, hopefully she'll sail there with not too many problems. She's very tired today as she hasn't had any naps so hopefully she'll have a good night sleep as she didn't last night. They've taken her off the heart rate monitor so that's one less thing she's attached to.

Thanks again to everyone for their comments and prayers we appreciate all of them, even those people who can't respond. :)

Michelle

Thurs. Oct. 19th

Well our Dr. was in this morning and everything is going well, he's quite happy. He thinks we'll probably be able to go home sometime next week. She's scheduled for her 2 IV chemos on Saturday and her LP chemo which she had on Tues., she will have another one this Tues. coming and if everything goes well with that we'll be homeward bound in a couple days after that. YAHOO! Meghan's face just lite up when he said that, she's had enough of this place and is ready to leave. Of course we'll still be coming back as an outpatient for chemo but that's okay. Also we'll have to be very careful with the whiteblood cell count as that's when she'll be more at risk for infection.

So keep your fingers crossed everyone as we hopefully will be coming home soon, YIPEE!!!!!!!!!!!

Love

Michelle

PS We are enjoying reading your comments.

Here are some pictures of Meghan with my cousins baby Isabelle (note the words on Isabelle's shirt) that were taken on Saturday.

Meghan survived her chemo yesterday, she woke up in the morning with a bit of a headache but her eye sight was fine so they proceeded with the chemo and when she woke in the afternoon she didn't have a headache, thank goodness! Her back is a bit sore, possibly from the procedure or from the way she had slept the night before as she didn't get much sleep.

She had a good night sleep last night and was woken this morning around 8:30 to go for an xray on her kidney's just to confirm everything is fine and I hopped in the shower as they said she'd be going in about 15 minutes and the people who take her to xrays (they're called transport) came and I was in the shower so she decided to get up and get her pants on her own and fell and banged her head on the table that you eat on, so she's got a bump on her forehead but she's fine, her legs are just so weak still, but there's the stubborn and determined kid that we have, which is what's driving her. She's now not allowed to get up without a parent or nurse. She's going for the xray around 1:30 p.m.

Other than that she's got exercises to try to build up the strength in her legs. We're determined to get her home soon, but not before she's ready of course.

Thanks again to everyone for there comments which I always read her, gifts, food, good wishes and prayers.

Love

Michelle

Tues. Oct. 17th

This morning Meghan went to dentistry to get the cement off her teeth as they took her braces off quickly a week ago Friday and they never removed the cement. She came back upstairs from that and she went for her LP chemo and has returned to the room where she has to lay flat for an hour after and it's not quite been an hour yet. Of course she woke this morning with a headache which is exactly what happened the last time but her vision was fine and she felt it was from not sleeping much last night, she's been up almost every hour to pee, more info than you needed I bet. Nothing else planned for today so hopefully she can just rest as she didn't get much yesterday either.

Love to all

Michelle

Mon. Oct 16th

Well since I last wrote Meghan has gotten the results of her MRI and the swelling is almost gone. They will proceed with the chemo in her spine tomorrow but they are changing the drug. She is scheduled for a CT scan today and hopefully going down to dentistry to remove the cement from her braces that haven't been removed yet. Each day may not seem like much improvement but we are having tiny baby steps forward, like we're up to 2 walks a day as of yesterday, drinking 3 cups of tea instead of tea and eating alittle bit more than the day before and I mean alittle bit. Meghan has lost all of her fluid she has gained since she's been here plus some. She is still on morphine which everyday they've been lowering it and she's still on TPN and lipids which is her food and fats because she's really not eaten much. Our goal obviously is to get her eating which is hard because she gets full very easy and up walking and building up her strength. She's lost over 40 pounds since she's been her and now we have to get her strong. We love and appreciate all your emails, prayers and good wishes we need them today and especially tomorrow. We don't have a home day yet but we take one day at a time.

Thank you to all of you for you kind words and thoughts.

Love Michelle, Joe, Josh, Meghan & Jamie

Thurs. Oct. 12th

Sorry for the photo being on the side but I'm new at this. Meghan went for another MRI this morning to see if the swelling has gone down since Friday, before they continue with the chemo in the spine. This picture was taken this morning.

Wed. Oct. 11th

Well Meghan has left CCU as of 3:30 am this morning. She is completely exhausted due the medication but we're going to get her up and showered today and hopefully for a little walk. Her white blood cells are very low right now so she's very prone to infection so please call first before you come as we'd like to really limit visitors and if anyone has the slightest cold or come in contact with someone who has we'd appreciate it if you didn't come.

I print off all the comments and I will take them up and read them to her as I haven't done so since she's been in CCU.

We appreciate all your emails and good wishes as we can use all the help we can get.

We love and appreciate all of you.

Love

Michelle

Monday, Oct. 9th

Well I haven't had a chance to write in the blog as Meghan has had a bit of a set back since I last wrote. She had a seizure Thursday evening and she's been in ICU ever since. The seizure was caused from swelling on the brain and they don't know what caused it and they say that they may never know. She is slowly improving everyday but it takes time for the swelling to go down. They are keeping a close eye on her Blood pressure and until that's stable they won't be sending her back up to her room. Right now Joe & I are the only ones allowed in to visit. We are spending most of our time in their with her right now. We would appreciate no visitors as we don't want to be leaving her alone. We appreciate all thoughts, prayers and concerns and hope that she will soon be out of ICU. Her white cell count is low so we are having to wear masks and gowns so we also need to avoid as much germs as possible.

It may be a while before I can write again as I haven't left her much since she's been in there.

Thanks again to everyone.

Love

Michelle

Thurs. Oct.5

Well Meghan went for her 4th chemo treatment by LP which they had to do in the O.R. she's been on the waitlist and they took her in around 12:20 and was done by 12:50 and everything went well. She has to lie still for at least an hour after as it can cause a headache. She had high blood pressure this morning so she had to take medication for and blood and platelets at 3:30 a.m. this morning. At around 8:30 she was ill and her blood pressure was high again so they gave her more medication to bring it down but she brought that up. Shortly after that her heart rate and beat were normal and so was her blood pressure. Her vision was blurring and she has a headache and her bp has gone back up so that's what's probably causing the headache. She's upstairs sleeping right now.

I'm waiting for the doctor to come back and talk to me regarding the results of the gallium Tues. & Wed. The resident this morning was VERY hard to understand and said something about her left leg but we won't be changning the treatment and the nurse was a bit upset with him so that's why the doctor's coming back to explain it properly to me, ugh!

Her spirits are alittle down right now as she's starving and they wouldn't allow her to eat yesterday because of her vomitting and than they wouldn't allow her to eat after midnight because of today's procedure. Meghan doesn't complain about any of these procedures, but she does about not being able to eat, but if I had gone without eating in about 4 weeks I'd be ticked too.

Nothing is scheduled for tomorrow that I know of but things change day by day and minute by minute. She will be having her 2nd dose of one of her chemos on Saturday though.

Talk to you all again tomorrow.

Love
Michelle

PS Please know that I miss you all and I've printed off all your messages and read them to Meghan.

Wed. Oct. 4th

Meghan had a follow up to her gallium scan today and she has lost about 3 kg so far and her tummy has gone down a couple cm which may not mean much to everyone but since she's put on about 14 kg since she's been there and it's all fluid this is amazing and we're headed in the right direction. It is a very slow journey but we're taking it one step at a time. She was up walking twice yesterday and 2 times so far today and since she hasn't really been out of bed since last Thursday this is also progress. She's been taking more morphin which I think has helped her move around more with less pain. She had a shower yesterday and we washed her hair and they have given her a laptop for MSN so I noticed a difference in her spirits yesterday as well.

Hopefully she will have her 4th chemo treatment in her spine tomorrow if the doctors say her heart rate and heart beat are okay for the sedation. Keep your fingers crossed.

Thanks again to all of you, I know you'll be tired of hearing this but I don't even know where or how to begin thanking everyone.

Love

Michelle & family

Tuesday, Oct. 3rd

Well thank you all for your lovely comments I've printed them off and will read them to Meghan. Everyone's support is just amazing!

Meghan is currently having her bone scan done as we speak and it will take about 1 1/2 hours to do. Her heart rate is gone up to about 64 and her blood pressure is improving with medication. Her electrolytes are also improving with calcium and phosophate medication. They haven't booked the LP which is the 4th dose of chemo yet as they need her heart rate to be a bit more stable. They are scheduling an ECG everyday until her heart is regular because she has a bit of an irregular heart beat still. They have been coming in the middle of the night to do the ECG, 2:30 a.m. last night but they will hopefully now be doing it during the day. Her swelling has not gone down yet but that will take awhile and hopefully with the chemo that will help too.

She was mad at me this morning for eating a few of her timbits that Joe bought her last night so we know she's starting to feel better. She's getting her sense of humour back and hopefully that's a sign of feeling better. She hasn't been out of bed since Friday because they've been coming in all night long and it's just wearing her out in the day. We talked about getting up today for a walk down the hall, but she's hooked up to so many things that it really makes it difficult, that and the swelling.

I miss you all and hope to see you all soon.

Love

Michelle & Meghan

Monday, Oct. 2, 2006

Well as most of you know Meghan was suppose to have her bone scan today as well as her 4th dose of chemo through the spine but unfortunately her heart rate was low last night and her heart beat slightly irregular so they've cancelled both tests today and we're waiting to hear if they're going to move her into ICU. Right now it seems that her electrolytes are alittle out of whack and they are slowly going up and her O2 is good so as long as she's improving they won't move her. They just did an ECG so hopefully it's better than the one they did at midnight. She's exhausted because we've had many different doctors, nurses etc. coming in all through the night. This kid is absolutely amazing to me because she never complains, especially with all these different people coming and going and poking and prodding. She did ask the nurse when would the doctors stop coming in.

That's all I know for now and appreciate all my friends and family, we are absolutely blessed and we love you all.

Michelle & family

Meghan's 1st blog update

Hi everyone

I just wanted to have a place where people can go to be updated on Meghan's progress. Unfortunately I'm finding it very difficult to talk to people at the hospital in front of Meghan as I'm constantly repeating myself over and over again and the first week she was there she told me I'm always on the phone. I feel right now I need to be there for her and concentrate on getting her healthy and home as soon as possible. I know everyone is wanting to be updated so I thought this would be the best way. Thanks to Chris for setting this up for me (and Vanessa and Nic).

First of all I can't even begin to thank each and everyone of for your kind thoughts, wishes, generosity and prayers for Meghan, we are completely overwhelmed by you all.

Now in case some of you don't know Meghan has been diagnosed with Lymphoma which is a type of cancer but there are many types of Lymphoma and hers is called ALCL which stands for Anaplastic Large Cell Lymphoma. It is rare but cureable! She has officially started chemo as of Friday evening with Prednisone which she takes 3 times a day for 29 days. Then on Saturday she started 2 other chemo drugs which were injected through her IV and the 4th drug which will be done on Monday through her spine. The chemo will last a year. They took a CT scan on Friday and they will do another one in a month to see the progress. We will be in Sick Kids for at least 15 days but they told us to plan for about a month. Right now she's not been up to visitors because she is completely warn out from the doctors coming and going and all the tests. I will let people know through this blog when she's ready for visitors but please call first as it may also depend on how she's feeling and tests that they may have to do. As well her immune system will be low and we can't afford for her to get ill.

I will try to update this as often as I can but if not I will get someone to do it for me.

Again thanks for everyone's prayers right now, I know so many people have asked what they can do and at this time I can only ask for you all to pray for her. Everyone has been amazing!

Love

Michelle, Meghan, Joe, Josh and Jamie