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Wednesday, September 20, 2006 7:51 AM CDT
Wow- what a LONG time since our last update!
Kirsten is doing amazingly well. She's healthy, cancer-free, and keeps on getting good checkups from her oncologist. Her kidney stones are still there, but so far (luckily), they haven't caused her any problems at all. We'll keep our fingers crossed that it stays that way!
She's now in Grade 6, and loving every minute of it. She's playing clarinet in band this year which is a new experience for all of us, and doing very well with her schoolwork. Amazingly enough the fact that she missed most of the school year in 2004-2005 hasn't seemed to have slowed her down much- we've been so lucky with the support that we got from the school as well as all of our friends. Her hair has grown back curly (which she loves), and in every way now she's just a typical 10 soon to be 11 year old. She loves sports, fishing, listening to music, and begging for an IPOD. Our family has grown with the arrival of Mark in Canada, and she is thrilled to have a new stepfather. Dylan comes over regularly for visits, and although Rachel is disappointed that there won't be any more sleepovers at the hospital, we have a very happy family these days.
One really special thing that has come out of her experience for Kirsten is the opportunity to attend cancer camp. She's spent one week each of the last two summers at Camp Quality in Southern Ontario, and what a fantastic organization they are. She also participates in the Relay for Life every year, and next week she is carrying the flag for the Terry Fox run at her school. She is extremely interested in helping other people with cancer, and I foresee that being a lifelong passion with her.
Thank you all so much for your love and support, and I promise that it won't be as long before the next update. She's doing GREAT!
Love,
Jeanette
Tuesday, April 19, 2005 5:15 AM CDT
...and some more good news! We spent the afternoon at the hospital with the nephrologist and getting an ultrasound, and it looks like Kirsten's kidney stones are all gone! There are two little pieces that may be the remains of stones, but the dr. isn't worried about them at all. We go back in six months for another ultrasound, but other than that, we're done with yet another department :-)
So it looks like we're finally pretty much done with everything, except for check-ups. The oncologist will continue seeing her every 3 months for a while unless there are problems- at some point they will take her port out, but no one's in a rush to do that in case there are any recurrences (unlikely).
Kirsten's doing well physically- she's back to doing everything that she was before the surgery. I think that her concentration still leaves a bit to be desired, but I'm not sure how much of that is due to the chemo, and how much of it is caused by being 9 lol She's struggling a bit getting back into the swing of doing homework, but we're working on it.
We're so, so lucky. In the grand scheme of things 6 months out of our lives isn't that much, I guess, but it was certainly a struggle at times. I just count our blessings every day now, and ask that you keep praying and sending good thoughts towards her continued good health. Thank you!
Jeanette
Tuesday, April 12, 2005 5:57 PM CDT
Finally...the news that we've been waiting for! We saw Kirsten's oncologist today for her first follow-up appointment, and everything looks wonderful :-) Her CT scan was clear, her blood work is normal...she's looking great! We don't have to go back to see him for 3 months, and we'll just keep our fingers crossed that it actually IS gone now!
We see her nephrologist (kidneys), on Monday, and then we'll start to find out what we have to do there. She still has kidney stones as far as we know, and I think that her kidney function is still impaired as well. I don't have a clue what's going to happen there, but I'll keep you up to date.
Life is finally getting back to normal :-) Kirsten is starting back full days at school as of tomorrow...she's not too thrilled with her homework, but she'll survive. I think that having her back on a completely regular routine will do all of us a world of good.
Her hair is growing back nicely- it's still fine baby hair, but it seems to be growing faster every day. She's looking forward to having a full head of hair by Jennifer's wedding in October- I swear that half of our conversations revolve around how she's going to fix her hair for the wedding :-)
This picture was taken at the park on Sunday- Dylan and four of his housemates came over for a visit, and we had a lovely day at the park. It's not very often that I can capture all three of them in the same shot, that's for sure! They have a wonderful time playing together- it's wonderful how little Dylan ever tries to hurt any of us anymore. He and the girls have a very special relationship, and we're so lucky to be able to have him home as often as we can.
I'm off to herd kids in the park, but I wanted to share the great news :-) We certainly wouldn't have gotten through everything without everyone's love and support...we can never thank you enough.
Jeanette
Wednesday, March 30, 2005 12:00 AM CST
Finally, a new update!
Kirsten is doing very, very well :-) She's back at school for half-days right now, and loving every minute of it. We'll lengthen the time as she gets her strength back- she is doing well, but she's still pretty tired when she gets home at noon. She also has an extra teacher coming to our home tomorrow to start helping her get caught up on math a few days a week, so that will be a big help.
Physically she's actually putting on some weight, and eating! She's been back for a few tests but we haven't got any results back yet- we see the oncologist on April 12, and start with the kidney doctors that week as well, so we'll probably have some more news then.
The girls had a great Easter weekend up at their uncle's place with their Dad, and they're both still on a chocolate high. Fortunately it's also spring here now so they've been able to get outside to play a lot- Rachel is in her element with all of the mud and puddles around.
I've been fairly sick for the last week or so, but I'm finally getting back to normal. It's a bit of a sad day today as my mom died one year ago today. It's been quite a year, and we've certainly missed her every step of the way during Kirsten's journey.
But overall, I think that life is starting to get back to normal here! It's certainly great for all of us that Kirsten's managed to get back to school...I'm not sure which one of us is happier about that.
Have a great week, everyone, and thanks for your continued interest :-)
Saturday, March 19, 2005 9:00 AM CST
What a busy, busy week! The girls have not had a chance to be bored during March break, that's for sure.
The CT scan on Tuesday went well...we won't have the results for a little while, but Kirsten was a real trouper and we're not anticipating any problems. Wednesday we were back in London again to see the endocrinologist, and that also went well. He is satisfied that Kirsten's old calcium problem was caused by the tumour, and very pleased that she's doing well. He doesn't feel the need to see us again, so that's one more department that we don't have to deal with any more :-)
Other than the hospital visits this week we've been spending most of our time having sleepovers. I'm fully anticipating that the girls are going to go to sleep at 5 pm on Sunday and not wake up until school on Monday- they are definitely starting to get tired. But it's been worth it- Kirsten is just thriving on finally being able to see her friends, and Rachel is doing an extremely good job playing. Her social skills have advanced tremendously this year.
Dylan came over for dinner on Thursday night and we had another lovely visit with him- Rachel had gone out with her Big Sister so he and Kirsten spent most of the time just playing together. And we made another difficult step towards the end of his custody issues yesterday when we were served with the latest set of court papers- barring a miracle, we'll lose his custody on April 26. It's heart-rending to lose a child solely due to their disability, and it sure makes me wonder what kind of a province we live in.
But we're trying to go on with our lives. This picture is Kirsten, Rachel, and Kirsten's friend Devynn at their sleepover last night (after the makeovers, obviously). Devynn has been a wonderful friend to Kirsten through all of this, and we're lucky to have her :-)
Have a wonderful weekend, everyone- I'll let you know how school goes on Monday!
Sunday, March 13, 2005 6:43 AM CST
Finally...a new update! I apologize for the delay- I've been spending all of my spare time sleeping, and haven't been very good at getting back to people lately.
Kirsten is doing very, very well :-) I think that she's going to start back to school on March 24, just a few periods a day to start. She's feeling good, and she misses school so much, so it's worth a try. Her stamina still isn't great so we'll start slowly, but both of us are pretty excited about her going back.
We're at the hospital again on Tuesday and Wednesday this week. Tuesday she has a CT scan to make sure that everything is gone, and Wednesday we are seeing an endocrinologist for some reason. No one at the hospital really seems sure why we're seeing him, but I think that the appointment was made when she was an in-patient at first and her hormones were going crazy because of the tumour. It can't hurt to see what he has to say, at least.
It's March break this week so the girls have a lot of things planned- Kirsten had a sleepover with her friend Devynn at Chris' place on Friday night, and I think that we'll be having a few other sleepovers during the week. It's so nice for her to really be able to play with her friends again. Rachel is doing very well- she's learned to read, so that's very exciting for all of us. Dylan has a cold right now so I'm not sure when we'll be able to see him, but I think that overall he's doing okay.
And we're just anxiously awaiting the end of winter...spring is hopefully just around the corner!
I hope that everyone has a great weekend :-)
Saturday, March 5, 2005 7:13 AM CST
Finally, we have a lot of good news :-) Kirsten's been feeling pretty up and down this week- mostly good, but she still tires very easily and she's had a few episodes of nausea. But starting yesterday morning she's been feeling really well- we had a sleepover last night and she and her friend stayed up watching movies MUCH past midnight...I think that it's safe to say that she's recovering!
Her blood work yesterday was excellent! She had her last daily injection yesterday (we get the catheter out this afternoon), we're allowed to stop her oral phosphate and her calcitriol and her immodium...for the first time in five months she won't have to take ANY meds today!!! We're both just a little bit happy about that. And we only have to go for blood work once next week, to make sure that she's still maintaining her phosphate level without the oral supplement.
We start going back for tests in two weeks, just to make sure that everything is totally and completely gone. She has an MRI and a kidney function test over March break, and then the week after that we see an endocrinologist for some reason. No one seems really sure why or when that appointment was made, but we'll go and see what he has to say.
It's going to be a fun weekend- Kirsten's still passed out on the couch this morning, but it's a gorgeous day out so hopefully we'll all get outside to play today :-) Tomorrow afternoon we go bowling for Big Brothers and Sisters, and both of the girls are very excited about that!
But it finally looks like we really are near the end, and I can't tell you how relieved we both are to be able to get rid of all of the daily meds. Hopefully she'll be going back to school pretty soon, but her concentration and strength really aren't where they should be yet, so we won't rush that.
Thanks so much to everyone for all of your support- I'll keep adding updates (and hopefully a new picture today!), as anything exciting happens :-)
Wednesday, March 2, 2005 3:43 PM CST
I think that maybe the worst is behind us now :-)
Kirsten had a pretty good night last night- I was up taking her temperature and checking her breathing a lot, but she barely even stirred. This morning she wasn't nearly as puffy, and was chatty (as usual) when we got to the hospital. And the great news was that her counts were up enough that we didn't have to continue the platelet transfusion :-)
So we lucked out today- She's 11 days post-chemo now, so we should be past her lowest point...from here on in it should be all about recovery. She still tires easily and doesn't have very good concentration, but with the amount that she's eating I think that she's going to be well again in no time. We go back to the hospital on Friday morning for more blood work, and then hopefully they'll let us discontinue the daily GCSF injections. I think that finally things should start just getting better for her :-)
Tuesday, March 1, 2005 8:25 EST
Well, the transfusion was not an unqualified success. Fortunately we were able to stay in Stratford as we couldn't get to London today, so Children's hospital sent blood over in a cab for her. The hemoglobin transfusion went well, but she had a reaction to the platelets which was a bit scary. We've got to go back in the morning to see if we can finish that transfusion or not, and if we can't I'm not sure what happens next.
She's sleeping now, so I'm going to grab some food and put Rachel to bed- I've got to keep an eye on Kirsten tonight to make sure that there aren't any lingering effects, so I think that it's going to be a pretty sleepless one here.
The people in Stratford were GREAT, and Kirsten charmed them all. I don't think that they get too many kids through the cancer clinic there so she was really a hit. I'm always reminded of how truly lucky I am that she's such a wonderful kid.
Kirsten's up- time to go
Monday, February 28, 2005 5:55 PM EST
Well, we're definitely going for a blood transfusion tomorrow- I'm just not sure where yet. There's no doubt that she needs one- she's getting whiter all of the time, and more weepy. But we don't have a ride to London tomorrow, and it looks like we're in for a lot of snow, so we're trying to arrange to do it in the Stratford hospital. Wish us luck!
She's had a fairly good day though. She was pretty upset doing blood work this morning, but she calmed down after we got home again. I think that considering all she's been through she's been a real trouper, and it's not surprising if it's depressing for her some days.
Rachel is still racing around the house like crazy...I think that maybe the past few months of chaos are starting to catch up to her. But at least she's happy, and I'm going with that :-)
Have a good night, everyone- I'll let you know how the transfusion goes.
Sunday, 7 pm
I'm sorry that I haven't posted an update for a while...time's just gotten away from me!
Kirsten's doing pretty well :-) I think that we'll probably end up going for a blood transfusion this week...her counts were down on Friday, and she's been getting progressively whiter every day. We go for blood work again in the morning, so I won't be at all surprised if we're told tomorrow to come in for a transfusion. Hopefully we'll be able to do that in Stratford as it looks like transportation might be difficult this week, and it also looks like we're in for some nasty weather. But over all, I think that she's doing very well.
It's been a busy weekend! Kirsten and Jennifer went to see Disney on Ice yesterday courtesy of one of the nurses at the hospital, and Kirsten had a fantastic time :-) And BIG thanks to Jennifer for taking her- Jennifer just took possession of her new house in Stratford this weekend, so she's had a very busy couple of days!
We had a wonderful visit with my Dad today- he came down and took us all out for lunch, and Kirsten was just thrilled to see him :-) It was a fun afternoon.
And then Dylan and his case manager (and my friend) Judy came over for dinner, and that was a lot of fun. The girls were so happy to see him, and you could say that they were all a bit energetic. He's doing very well, but he certainly does get into everything...I forget about having to hide things before he comes over! But we all survived the visit, had a great time, and I think that it did everyone a lot of good. I can't thank Judy enough for bringing him over on her time off.
And I had some good news at the end of last week- the school board is going to start sending over a substitute teacher to help Kirsten get caught up. I'm not sure when she'll be going back due to the chicken pox at the school, so that is a huge relief for me. She's been so tired throughout most of her treatment that most of the homework that she's been doing hasn't really "stuck", so it will be nice to have a professional here to help out a few hours a week.
Thanks so much to everyone for all of the cards and emails- I think that things are going pretty well! Right now the girls are very excited about bowling for Big Brothers and Sisters next weekend, so I think that it's going to be a LONG week until that happens :-)
I'll update again after our hospital visit tomorrow...have a great night!
Jeanette
Tuesday, February 22, 2005 8:16 PM EST
Some more good news today :-) Kirsten is still feeling pretty good! She woke up weepy this morning, but by the time we got back from doing blood work at the hospital she was fine. I don't think that I've ever said how much I appreciate the work that all of the blood techs do- it's got to be a downer dealing with people crying and screaming all day, but we certainly depend on them. Our tech this morning was a woman that we've had a few times previously, and she was obviously very empathetic to Kirsten's upset...I give her full marks for just doing her job and not letting it bother her.
Some of the good news is that Kirsten's blood counts today were very good- there aren't any problems that they can see, and her phosphate and sodium are both back to normal. And we don't have to go back until Friday, so Kirsten will get a few days' break from hospitals :-)
Not so great news is that we still have to be very careful with chicken pox. There are still a few people at the school who have been exposed, so she won't be able to go back there until that's all cleared up. She's upset about that as she'd like to go back as soon as possible, but I think that she needs a week or so at home before she really starts back anyway. We'll keep our fingers crossed that she can make it back before March break begins.
And Dylan's going to be coming over for dinner here on Sunday night, and are the girls ever excited! I talked to Dylan's worker Judy tonight and she's going to bring him over after her shift on Sunday- he had a great day today, but didn't want to come to the phone as he was too busy with his toys *g* I just can't wait to see him again.
Have a great night, everyone- I'll keep you updated with anything exciting :-)
Jeanette
Monday
We're having a VERY lazy day here- Rachel stayed home from school today, and the girls are having a great time playing together. Kirsten's feeling pretty well, and she just got some beautiful flowers from Uncle Rob and Aunt Andie, so she's pretty happy right now :-)
It's very good to be home!
Sunday 5 pm
We are HOME, and we are DONE chemo....YAYYYY!
Kirsten is actually feeling better than she has for the last two cycles- I think that knowing that this was the last one helped a lot. She has been a bit nauseous with some vomiting and diarrhea, but it certainly hasn't been as bad it was in the past. Her phosphate and sodium seem to be behaving themselves reasonably well, so hopefully her blood will sort itself out over the next few weeks. She'll be getting her GCSF injections for the next 10 days or so, and then going back to school as soon as she can- we'd both like to get her back there as soon as possible. She's been working VERY hard on her math so that she won't be too far behind when she goes back, and she can't wait to see all of her friends again.
In another month or so we go back for an MRI and CT scan to confirm that all of the cancer is gone, but we are so hopeful at this point that we're done with it. We're going to miss our friends at the hospital a lot- I can't say enough about all of our doctors and nurses and support workers. We didn't have one bad experience with a medical or support professional there, and that's not always something that you take for granted. Everyone always went out of their way to cheer Kirsten up, to make sure that I was doing okay and not just faking it, and to make sure that we were both fully informed about what was going on. Our doctors, our special nurses who always made Kirsten feel better and didn't mind her screaming *grin*, and told her how brave she was, Jamie for helping us so much with everything, Jen for trying to get Kirsten to eat and the watch and for your great smile in the morning, the people in the cafeteria who never laughed at me when I stumbled down there in the morning and just gave me my coffee without asking what I wanted, all of the med students who gave Kirsten special gifts when they were done their rotations, Jill and Jessica and Jennifer for all of their help...we were blessed to run into some truly special people. We'll definitely be going back to visit so that they can see just how much fun Kirsten is when she's healthy, and so that they can meet me when I'm not sleep deprived and grumpy :-)
The other families there- I can't say enough wonderful things about them. Since we found out after surgery that Kirsten would be okay in the long run we've been very conscious of the struggles that other people are facing, and I admire and respect the courage and determination that they all show. I'm truly humbled by how much people can stand and still manage to face the future with hope and friendship for "new" families, and I'd like to thank all of them for the love and support that they've shown us.
And to all of our friends and family and new friends who have pitched in- I can say that both Kirsten and I are completely overwhelmed by the love and support that we've received. Without Tracy and Kristi and Emily and Jennifer and Stephanie I would have been completely lost for child care and help- throughout this whole thing they have always picked up the slack and enabled me to know that whichever child I couldn't be with was being well cared for. To Judy, for doing her usual wonderful job looking after Dylan, keeping me informed, and bringing him over here on her time off so that we could still see him whenever possible. To Don Lawson and Big Brothers and Sisters, for all of the help that they've given us and all of the connections that they provided for us- I can't ever thank you enough. To Anne Hathaway School and especially Kitty Howard, Kirsten's teacher, and Julie for helping Rachel to get back and forth to school each day so that I don't have to leave Kirsten- we're so very lucky to have you. To Juli, Mark, Phil, Susie and Gary, for keeping me sane, saving me on numerous occasions, and just being wonderful friends. To Linda and Penny and Carla- always. And to all of our wonderful new friends across the world who have done so much through expressing good wishes through the web page- thank you. I hope that some day we'll be able to meet ALL of you. You'll never know how much it's meant to Kirsten and I to sign on and see something wonderful from someone we don't even know.
We really are the lucky ones. And if nothing else, I've learned that life is really too short to be wrapped up in your own world and problems. Of course for us Cancer societies are always going to be a big priority now, through the Bone Marrow transplant program at Canadian Blood Services (http://www.bloodservices.ca) in hopes that our friend Katie and other people like her will find a match, Childcan who have been such a huge help to us (http://www.childcan.on.ca/), and of course the upcoming Terry Fox Run. And if you can ever find a way to contribute to Big Brothers and Sisters (Bowl for Kids' Sake is coming up SOON) (http://www.bowlforkidssake.ca/bowl4kids/default.asp) there aren't too many organizations who do a better job at supporting families in need.
Sorry- I didn't meant to go off on a tangent there lol...I'm just very excited that now this phase of our life is ending, and we can move on to contributing more to thank the people who have helped us so much.
I'll continue updating the webpage, but I think that we might take tomorrow off. It looks like Stratford is in for a big storm (the drive home was NOT fun tonight- thanks to Chris for not going off the road when I screamed lol), so I think that I'm just going to cuddle with my girls tomorrow and call Dylan on the phone, and thank the heavens that life is going to settle down now.
Jeanette
Friday, February 18, 2005 9:19 AM CST
Saturday noon -- Jeanette asked Phil to update the page. Kirsten is quite tired but doing fairly well. Phosphate levels are back to normal, but sodium levels are low ("Nurse, this patient needs Doritos, STAT!") Both of them got a good night's sleep last night and are putting up with the ward fairly well. They're hoping the doctors will send them home tomorrow. Sounds like their spirits are a little higher than yesterday ...
Noon
We just got moved back to the ward, room 7183, and our new extension will be 54254. We're not happy.
9 am
Well, it's like deja vu. Kirsten's phosphate is officially all over the place again, and she's got really bad diarrhea again. I think that we'll be here for a few extra days again until they can get it regulated.
She's in reasonably good spirits- pretty down and tired, but I think that's reasonable. Rachel will come up for a sleepover again on Sunday night, so that always works to cheer both of them up. Fortunately Kirsten's nausea isn't too bad right now (at least she hasn't thrown up yet today), and we just got some new movies to watch.
We're hanging in here- keep her in your thoughts :-)
Thursday, February 17, 2005 9:53 AM CST
Things are still going pretty smoothly :-) Kirsten started throwing up again today, but considering that it's Day 3 that's not too bad. We've been working on math homework all morning and she's still in fairly good spirits, and we should have chemo done with today in time for her to go to the Child Life playroom this afternoon. I think that she's doing pretty well :-)
Apparently we're having a Battleship tournament tonight...one of the nurses is bringing in a game that squirts water at you when someone sinks one of your ships, so I'm anticipating that it's going to be a soggy night.
We're hanging in here- 3 or 4 more days to go, and we're DONE!
Wednesday, February 16, 2005 11:09 AM CST
Well, so far this round is going very well! Kirsten decided to start not eating this morning, but then we had a big birthday cake for one of the other mothers here, and the sight of all of that icing was just too much for her. She had a GREAT breakfast- the nurses convinced her that since it had eggs in it it was good for her.
She's feeling pretty good- we did add the phosphate back to her IV, but right now, things are going great :-) I'm already overdosed on Orlando Bloom movies, but it could be worse- it's better than the Lizzie McGuire/Disney stretch of a few rounds ago.
Have a great day, everyone :-)
Tuesday, February 15, 2005 12:25 AM CST
Wow!! We got a private room! I'm not sure whether Kirsten or I is more relieved, but we're sure happy about it :-)
We're in room 7182, and our phone number is 519-685-8500 x54253
All of her blood work and pulmonary testing looked GREAT this morning- they're not even going to give her phosphate through her IV yet, so hopefully that issue has resolved itself.
I'd better go and unpack, but we're both just thrilled. only 5 more days to go and we're DONE!
Monday, February 14, 2005 7:54 PM CST
I'm sorry that I haven't posted an update for a few days- the girls went to Chris' for the weekend and I just slept, and today's been a crazy day!
Happy Valentines' Day everyone, and a big Happy Birthday to my sister Barb :-)
It looks like we are going to start our LAST round of chemo tomorrow, although that's still not certain. We had a big ice storm in Stratford today, and schools were cancelled, so both girls spent the day at home. We did manage to make it up to the hospital this morning to do bloodwork, although I've had less scary rides. I was very impressed with Rachel as she sat all by herself in the waiting room without moving while Kirsten and I got her blood drawn :-)
It seems like there is a bit of confusion at Children's Hospital today- neither our nurse manager or our oncologist was there, but the nurse that I talked to "thought" that Kirsten's bloodwork looked good, and told us to come in tomorrow to start chemo. So we're going first thing in the morning and hoping that she will be able to do chemo as scheduled- I really don't want to put it off for another week, and Kirsten is very anxious to get it over with. We're all packed and ready to go, and Kristi and Tracy are ready to spend the time with Rachel, so with any kind of luck we'll just start tomorrow morning. I'll post our room/extension number as soon as I can find it out.
It was a bittersweet Valentines' Day here...Kirsten had planned to go to her class party this morning, and was devastated when school was cancelled. Rachel was very upset that she couldn't go to school and give out her Valentines, but fortunately we were able to go to our friend Juli's house for dinner tonight and do Valentines with Kevan and Nicolas.
I'm off to finish up a few last minute things- the girls are both in pretty good spirits, and Kirsten is feeling fairly well, but we're all very anxious to come to the end of this journey. I think that this cycle will probably be pretty hard on her, and it sounds like the hospital is very full, so I'm sure that we'll end up in a busy ward- I don't think that it's going to be a fun week. But we're getting close to the end, and as long as Kirsten's progressing, that's what counts.
I'll keep you updated- thanks so much for your support.
Jeanette
Friday, February 11, 2005 5:26 PM CST
Finally, some good news from the hospital! Kirsten's blood work came out very well today- everything is up almost to where it should be. Which is GREAT news! It probably means that we can start our last round of chemo next week (we want to get it over with), we're allowed to cut her oral phosphate supplements back to once a day, and she was able to stop getting her GCSF injections today and get her arm catheter out. What a GREAT way to start the weekend!
She was much happier this afternoon...definitely NOT in a good mood this morning when we went to do blood work, but Jennifer came over this afternoon and took her out and that cheered her right up. Neither of us are looking forward to another week in hospital, but with any sort of luck, it will be our last one. So we're pretty happy here today :-)
Have a wonderful weekend, everyone!
Thursday, February 10, 2005 6:03 AM CST
I'm not sure whether it's Kirsten or Gary who enjoys looking in the mirror more :-)
It really hasn't been the easiest time here since the blood transfusion. It seems to have tired Kirsten out a lot more, as well as making her more depressed and weepy. I'm hoping that her blood counts tomorrow are through the roof so that it will have been worthwhile.
Kirsten slept a lot of yesterday- I finally had to wake her up at noon so that she could get her injection of GCSF. She got extremely cold last night and it took a while to warm her up- fortunately her fever didn't rise past the danger point, but she was having troubles breathing and just generally a pretty miserable kid. She's had a great sleep through the night though, so maybe she'll be better this morning :-)
We did get an absolutely wonderful surprise on Tuesday night! Kirsten's class at school worked very hard to make her some get-well murals, which are currently hanging all over the living room in addition to the great one that Rachel's class had made her. It cheers her up so much to know that her friends are thinking of her and wishing her well.
It's going to be a quiet day around here today, and if she's feeling better tonight we're going to go to her friend Devynn's skating exhibition tonight. She just hates being left out of everything, but of course all of her activities right now are dependant on how she's feeling that day. I'm hoping that today will be a better day :-)
Tuesday, February 8, 2005 5:21 PM EST
Kirsten says that she looks awful and doesn't want her picture taken, so she asked me to put up a picture of Gary being a brat. He IS a monster kitten, and beats on Clarabelle unmercifully. She sat here for 10 minutes while he gnawed on her ears, and didn't bat an eyelid. I wish that she would give him a spanking so that he'd leave her alone.
We're back from the hospital, and it's been a LONG day. All of Kirsten's blood counts were very low, so she got hemoglobin and platelets transfusions today. I'm not sure why, but she's very, very weepy and tired tonight- I thought that this was supposed to perk her up lol
We're not sure whether Kirsten's last chemo cycle next week will be postponed or not- we go back for blood work on Friday and then we'll have a better idea. Keep your fingers crossed that we can get it over with! I think that she's pretty tired of feeling sick.
Thank you SO much to Julie for taking Rachel home tonight- I really don't know what we would have done over the last few months without the people who work in Rachel's class, and I'm not sure how we're ever going to repay everyone.
Off to cuddle on the couch- have a good night, everyone!
Jeanette
Monday, February 7, 2005 3:28 PM CST
A bit of an update- we're back to the hospital tomorrow morning for a blood transfusion. Her counts today are lower than they've ever been, so hopefully the transfusion will help.
She's had a GREAT couple of days. Yesterday she went with Jennifer to a friend's house and got to try cross-country skiing as well as snowmobiling, and this morning she had a lot of fun helping me around the house and doing homework. She's slept a lot of this afternoon, but aside from a bit of a sad time this morning, she's been in great spirits the last few days.
I'm off to get Rachel ready to go out with her Big Sister for the evening. I'll post again when we get back from the hospital tomorrow.
Jeanette
Sunday, February 6, 2005 6:53 AM CST
What a busy, fun weekend! The weather has been gorgeous here, so we have been getting outside as much as possible. Kirsten even went tobogganing for a short time on Friday afternoon- she's feeling very well, but still gets tired easily. She is doing great though- thank heavens for the recuperative powers of children. She's certainly not the same sick little girl from early last week!
We had our friends Phil and Josh over for a sleepover last night and that was a lot of fun :-) Kirsten's off with Jennifer this afternoon, so I think that Rachel and I will have a quiet day here while Mom recovers from the sleepover lol...I don't think that the kids got to bed until midnight. But it's so nice to see Kirsten playing and having fun that I didn't have the heart to enforce bedtime...bad Mom!
We're back to the hospital tomorrow morning for blood work, and then I think that it's going to be a homework week. There are so many sick people around here right now that I'm leery of her starting back to school until she's done her chemo, so she and I have been working on her school work a lot lately. Fortunately she's so motivated to not be too far behind that it's usually easy to convince her that it's working time.
I hope that everyone is having a nice weekend!
Jeanette
Thursday, February 3, 2005 6:48 PM CST
We have had a very difficult night here. There was a little girl on our floor named Hannah- 3 years old and as cute as a button (http://www.caringbridge.org/canada/hannah). She had AML- a particularly nasty form of leukemia, and she passed away early this morning. She was a lovely girl who fought an incredibly long and difficult battle- I only got to meet her a few times, but she was always smiling and brave when I saw her. She had spent a great deal of her life on "our" floor of the hospital, and her parents Cathy and John were a great support resource for all of the families in the hospital. They put together a wonderful package for "oncology" families that explained all of the services and resources available in London, and I can't express how helpful that was to us. I wish that Kirsten and Hannah had been able to get to know each other, as I'm sure that they would have been friends. Kirsten is just devastated that she's no longer with us, to say the least.
We have another friend on the floor...Katie. (http://www.caringbridge.org/canada/katieb) . Katie also has AML, and is awaiting a match for a bone marrow transplant. She and Kirsten were playing together in the day unit last week as they were both undergoing chemotherapy, and Katie's father took a wonderful picture of the two of them sitting together in Katie's bed making Valentines for their friends. Katie NEEDS a bone marrow transplant. You can be put on the bone marrow registry list by registering at Canadian Blood Services (http://www.bloodservices.ca) There is not much testing that has to be done, and you could save her life.
Both of us are pretty devastated tonight, so we're going to spend the night just hugging each other. Poor Rachel can't understand why Kirsten is sad, so I'm going to try to distract her as well. We are truly the lucky ones here- all of our love and prayers go to Hannah's family, and Katie's.
Jeanette
Wednesday, February 2, 2005 2:30 PM CST
Good news! We just got the results of Kirsten's blood work from this morning back, and her counts are good :-) Her phosphate level has also risen a bit (it's almost normal now), so they might even be cutting back on the phosphate supplements that are causing the diarrhea. So that's about the best results that we could hope for right now...there's a chance that we won't even have to go back for more blood work until Monday :-)
She's feeling much better today- she hasn't thrown up since last night, and although she didn't eat as much today she's been a lot happier. She spent most of the morning after the hospital happily doing homework and reading, and was it EVER nice for me to have some time without the TV on!
Rachel came home from school tonight with a bit of a snotty nose, so we're hoping that's not going to develop into much. How we're supposed to prevent her from picking anything up at school is beyond me, but theoretically she, Kirsten and I are so used to each other's germs by now that maybe Kirsten won't catch it.
But right now, we're doing well- the girls are with Chris for dinner, so I'm off to put my foot up (I broke my toe this morning...duh), and lie on the couch for a few hours. Have a good night, everyone :-)
Tuesday, February 1, 2005 12:09 AM CST
There's not too much happening around here today- Kirsten's nausea is here in full-force, so we're just hanging out in the living room. I did get a start on the house this morning, but now we're just watching Lord of the Rings. She's doing okay- still in good spirits, but we're anxiously awaiting her anti-nausea meds later this afternoon. I didn't realize that the pharmacy in town would have to order them from out of town or I would have brought them home from the hospital with us, that's for sure!
But she's doing okay- very happy to be home with the cats again, and liking being able to curl up in her own bed when she wants to. We're off to the hospital again for blood work tomorrow morning, and hopefully they'll let us stay here.
I hope that everyone's having a good day!
Jeanette
Monday, January 31, 2005 4:15 PM CST
We're home! It's been a pretty crazy day, and MANY, many thanks to Phil for getting us home today.
Kirsten's phosphate levels are still pretty horrible, and her diarrhea hasn't slowed down any, but they decided to let us go anyway. I don't think that there is any consensus as to what is causing the problem or how to treat it, so we're home for a little bit, at least (fingers crossed). We go back to the Stratford hospital on Wednesday for blood tests, so I'm going to try and get all of the laundry etc. done tomorrow, as I'm fairly confident that they'll haul us back in to London fairly soon.
But Kirsten is very glad to be home, and Gary is certainly enjoying having us here :-) Rachel had a wonderful time at the sleepover last night, and the nurses are so great with her- it's so nice to see the girls able to have fun together there.
Right now Kirsten is feeling fairly good- she's on a lot more meds to try to control her nausea now, so hopefully they will help.
I'm off to make some dinner, and then try to find the living room floor! I'll never understand how we can bring so much stuff home with us.
Thank you to everyone!
Love,
Jeanette
Sunday, January 30, 2005 12:46 AM CST
Lots of updates, and not much time to do them in lol The computers at the hospital were down on Friday, but at least I managed to sign on today!
We are staying here for a little while until we can get the phosphate situation stabilized- hopefully we'll be out tomorrow, but I'm not counting on that. Kirsten's in relatively good spirits- she's thrilled right now as Rachel is having a sleepover tonight, but the last few days she's been pretty tired.
We're moving into a private room this afternoon, and I'm not sure what our extension there will be. We're going to be in room 7192, so the switchboard should be able to connect you.
I've got to go and do some more packing and moving things...I'll be able to write more tomorrow!
Another Update! Juli here, just talked to Jeanette and their new phone extension is 54262 and I'm sure they'd love a call.
Thursday, January 27, 2005 10:06 AM CST
Well, the good news is that Kirsten's chemo is going very well! She didn't sleep as late this morning, and she's much less weepy than she was. She's upstairs having her "spa day" with her friend Andrea right now- they got sidetracked doing other things yesterday, so today's the big beauty day!
The bad news is that it looks like we may be here for a while. Kirsten's phosphate problem is not resolving itself, and it sounds like no one knows what to do about it. The oral phosphate that we were taking at home was the cause of her diarrhea, and not only is that very unpleasant for her, if she's excreting it as soon as she takes it in she's also not getting the benefit of it. So the doctors are trying to figure out some way apart from I.V. to get it into her, and until they've got that down, we won't be going anywhere. They told me this morning not to make any plans to go home anytime soon.
So, damn, is all I have to say. We're making do in the ward- it's almost empty now, and I'm hopeful that a private room will open before the weekend so that Rachel can have a sleepover. She and Kirsten are missing each other a lot, although Rachel's having a GREAT time with Tracy this week!
I'm off shopping later on today to pick up some more things...everything that I forgot, and a few extras if we are going to be here for a long stay.
She's in good spirits right now, so just keep your fingers crossed!
Jeanette
Wednesday, January 26, 2005 9:20 AM CST
Yep- we're back in the ward again! It wasn't as bad last night- we've got one very, very cute quiet little girl across from us, and only one other person in the room (I think that he's leaving today). It was noisy early in the evening, and Kirsten was pretty weepy later at night last night, but so far at least, it's been quieter than our last experience there! We're still hoping to get moved into a private room, but the floor is very busy right now so that may not happen until the weekend.
Kirsten is hanging in there. She had a good time talking to Rachel and Tracy and Alicia on the phone last night, but after that she just cried for a couple of hours. Of course, being Kirsten, it escalated from being sad about being in the hospital to being sure that she had it rougher than anyone in the universe has ever had it (her words), but since she's 9, and pretty miserable, I think that she's entitled to have a good cry every once in a while.
And so far today she's incredibly boring
She has a lot of things planned for this afternoon (if she wakes up)...one of the Child Life workers is coming for a "spa" break early this afternoon...hair, nails, makeup, and then the hospital is having their Winter Festival this afternoon in the playroom, so if she's awake hopefully that will be a nice break for her.
I'd better get back to her in case she does wake up, but so far we're doing pretty well. Please do call if you can- she was happiest last night when she was on the phone :-)
Have a good day, everyone!
Jeanette
Tuesday, January 25, 2005 5:00 PM CST
Hi Everyone:
Juli here. I had a request from Jeanette to post their new room info. They aren't too pleased at getting put in the ward room. Again. So hopefully that will change in a hurry. They are in room #7183 and the phone number is:
1-519-685-8500 ext. 54254
Monday, January 24, 2005 11:07 AM CST
Kirsten has hair again, and is she EVER happy about it!
The lovely people at Knox Presbyterian church have set up a program providing wigs for cancer patients, and we really lucked out :-) They had one child wig, which just happened to be very close to Kirsten's old hair colour, length, etc. She looks great, and if you see her with a hat on you'd never realize that it wasn't her own hair. I think that she's going to be a lot happier going out to the mall etc. for the next few months! It's a wonderful service, so if you know anyone in the Stratford area who needs one, please do keep them in mind. We're very lucky to have heard of them!
And now we're back to packing/organizing again...it's a busy day here :-) I haven't gotten any results from Kirsten's blood work this morning yet, but she did very well!
Monday, January 24, 2005 4:47 AM CST
Oops- sorry about not updating for a few days!
We had a busy weekend, with a lot of people dropping by which was great for Kirsten. Needless to say Rachel was pretty excited about all of the snow!
Kirsten's been feeling much better the last few days- she was still very tired on Friday, but she had a wonderful time helping out with the video for the United Way- we had a lot of fun!
We're off for blood work this morning to make sure that everything looks good to start chemo this morning, and then going to one of the local churches in town to look at some wigs :-) One of Chris' sisters is in town with her family for a few days, so hopefully Kirsten will get a chance to see them today!
And we're back at the hospital tomorrow already, so I've GOT to pack today lol...time has gotten away from me.
But the great news is that she is feeling very well right now- it was sure nice to make it through a non-hospital time with relatively few scares.
Thank you for all of your continued love and support, and please keep her in your prayers as we go back to start round 3 tomorrow.
Have a great day, everyone :-)
Jeanette
Thursday, January 20, 2005 5:38 AM CST
Finally, we got some good news :-) Kirsten's blood work was so good yesterday that we didn't have to go for a platelet transfusion after all...what a relief! We were NOT looking forward to driving to London in the snowstorm, to say the least. Theoretically now we don't have to go back to the hospital again until Monday, when we'll get blood work done again to make sure that everything is good to go for chemo on Tuesday. So hopefully we can have a few days to just hang out! She is developing some mouth sores so we'll keep an eye on those, but generally, she's doing pretty well right now.
Our kidney specialist has contacted another doctor to try to get some ideas on Kirsten's low phosphate level as well as the diarrhea (which is ongoing), so hopefully we'll have some news on that at some point. She's VERY sick of drinking phosphate supplements 3 times a day, although she's getting very good at doing it without complaining.
We're off to one of the local churches on Monday morning to look at some wigs for her, and she's very excited about that. Tomorrow we're going down to Big Brothers and Sisters to help with a videotape for the United Way which should be fun- needless to say she's excited about being on-camera :-)
Today I'm going to shovel some more, and then if she's feeling up to it we're going to head downtown to hit the library before we do more hospital time next week- I made some disastrous book choices last time and ended up reading bad magazines for the whole time. Hopefully this time will be better- everyone knows how cranky I get when I don't have something to read *g*
This picture was taken during our dinner the other night with our friends Kevan, Nicolas and Juli- you can see how much fun Kevan and Kirsten have together :-) We're so lucky with all of our friends!
Have a good day, everyone :-)
Jeanette
Monday, January 17, 2005 7:51 PM EST
Well, the good news around here tonight is that Rachel had a super night. She made her own lunch for school tomorrow and wouldn't let me help, which might be scary. But she was skipping around the kitchen as she was making it yelling "Rachel is going to be healthy!", so hopefully there's at least one good thing in it :-) I'm always thrilled when I see Rachel making any progress towards independence, and she is certainly progressing quickly these days!
Kirsten didn't have that great a day. For some reason she's very weepy when we go to the Stratford hospital to get blood work done...I have no idea why. The people there are nice, and she's getting to be more familiar with it- I'm not sure whether maybe she has bad associations because that's where they found the tumour, or whether she's just used to "her" hospital in London now. But it's always a bit of a depressing way to start the day for her.
We did have a fun afternoon- a reporter from the local paper came by, and we had a nice time talking with him. Whenever I start to explain to someone just how much support we've gotten from the local community as well as our online friends I am just overwhelmed at how lucky we've been.
Kirsten's blood work today wasn't as good as we'd hoped, unfortunately. Her platelets are very low, so we're most likely going to London on Wednesday afternoon for a platelet transfusion...she's pretty upset about that, even though it doesn't sound like it will be a big deal at all. She might be finished with her G-CSF injections for this round tomorrow, which means that at least we'll be able to take the "butterfly" catheter out of her leg so that she can have a bath. She walks a bit hunched over right now, and her back is starting to bother her, and I think that a bath will help that. I tried giving her a massage tonight, but she's so damned ticklish that it ended up being more of a giggle-fest than anything useful.
I talked to our nurse-manager this afternoon, and apparently the next few days might be kind of tricky. He thinks that things are going to get much better or considerably worse in the next few days, and we'll just have to wait and see which. Her urine output does seem better, but the diarrhea is still a major problem- hopefully we'll get that sorted out soon. But the main concern right now seems to be her blood counts, so we'll just keep our fingers crossed that they will get better soon.
Hope that everyone has a good night...Kirsten's on the phone with one of her friends, and she's pretty happy right now. I'm so thankful that people keep on calling her :-)
Monday, January 17, 2005 5:22 AM CST
Well, we survived the weekend! Kirsten was pretty sick again last night- we just can't seem to get her digestive system under control. But her fever stayed JUST below the point where she'd have to be admitted, so at least we were able to stay home last night. We're off to the Stratford hospital this morning for more tests, and then maybe we'll have a better idea what's going on. My guess now is that it's just the chemo poisoning her entire system, and hopefully most things will clear up when that's over with. Theoretically we've still got another week at home, so our fingers are crossed that we won't have to go back quite yet.
I'll post more post-hospital today...I hope that everyone has a good day :-)
Jeanette
Friday, January 14, 2005 7:37 PM CST
Another night in emergency, but thankfully they didn't admit her. We'd started a 24 hour urine collection this morning, and finally, after all of our travelling around today, I noticed that her input was considerably greater than her output over the course of the day, which isn't a good thing considering her kidney status. So I called our nurse manager in London, who gave me a list of the blood tests that they needed done in Stratford, and we headed off to emergency here. She was very upset- fortunately Jennifer was here when all of this went down, and saved the day by being able to console her while I raced around and tried to get all of the hospital necessities together. But at least they decided not to admit her- the girls are at Chris' house now for the weekend and he'll be doing stool and urine samples all weekend, but hopefully someone will figure out what's going on with her and we won't be back in hospital any time soon.
We did have a lovely visit with Dylan at his meeting this afternoon, even if we spent most of it in the bathroom. His case manager at the house just re-did his room so that he has a lot more sensory equipment there, which thrilled me to no end. He is such a doll- unfortunately I forgot the camera, but there was a wonderful time where Kirsten was lying down with her head in his lap while he stroked her hair and bent down to give her kisses. He does have his problems, but he is a wonderful boy.
And Rachel was just great at the hospital tonight. I felt so badly having to take her there...it was a gorgeous afternoon here, and she wanted to go outside and play with her friends so badly. But she did wonderfully at the hospital...spent a lot of time kissing Kirsten and trying to make her feel better, and making me laugh. I'm blessed with all of my kids.
Poor Kirsten was SO angry at me tonight- I'd put Emla cream on her port before we left the house in case they had to start an IV to re-hydrate her, but unfortunately I'd forgotten to also Emla her arm for bloodwork. So she endured the needle poke with many complaints sent in my direction, but she's so amazing at sitting still for needles that we were able to draw what we needed with no problems. You can bet that I won't forget to anaesthetize any part of her body that I can reach before we leave the house next time :-)
I'm off for a hot bath and a very large glass of wine...the house is almost spooky it's so quiet, but I'm going to enjoy it. Our local paper is coming here on Monday to do an article on how wonderfully Kirsten's school has supported her throughout all of this, which means a lot of house cleaning for me this weekend
Please keep Kirsten in your prayers this weekend- we REALLY don't want to have to get admitted before our next chemo starts. I hope and pray that she can have a fun weekend at her Dad's, and that soon they'll figure out what's going on with her kidneys.
Friday, January 14, 2005 6:11 AM CST
Sorry about the lack of updates this week! I've been busy trying to get the house back in order in case we have to make another hospital trip. At least we've finally got the Christmas decorations down :-)
Kirsten has been feeling gradually better all week- although I wouldn't say that she's overflowing with energy most of the time, she is definitely brighter and the nausea has stopped. And she hasn't even come close to having a fever all week which is good news! I'm not sure yet whether we'll chance school next week or not- I think that it still might be too much for her, and with the changeable weather that we've been having lately I'm sure that there are no end of viruses floating around right now. Right now my only goal is to keep her out of the hospital until the 25th. We're back up at the hospital for bloodwork today, so hopefully her counts will still be good.
Rachel has had a good week- she went out with her Big Sister last night and had a great time scrapbooking with her. That child is terrifying when you give her glitter and glue- I'm not sure that Stephanie's carpets will ever be the same :-) Kirsten and I are off to a meeting at Dylan's house this afternoon so she and Dylan will have a chance for some play time and she's very much looking forward to that.
I'm off to get Rachel dressed- her aides (thanks Julie!) have been wonderful and have been picking her up and dropping her off for school this week, so I haven't had to leave Kirsten by herself. It certainly makes my life a lot easier, although I do kind of miss getting to chat to everyone in her class.
Have a good day, and I'll let you know how the blood work went!
Jeanette
Tuesday, January 11, 2005 3:17 PM EST
What a busy day! And poor Kirsten has had a difficult day today- she's been vomiting regularly for really the first time, and she sure doesn't have much energy. But she had the afternoon resting at home and playing with the baby, which I think was the best thing for her.
We went over to the school today so that she could hear what the educational liason from the hospital was going to say to her class. I don't think that we'll be going back to school any time soon- we got half-way there and she said that she couldn't walk anymore, so I ended up carrying her the rest of the way. She was very glad that she went- she got to talk to a lot of her friends about the cancer, as well as just seeing everyone again. I think that it was a good idea to have Anne come over to talk to her class- the kids had lots of interesting questions for her, and hopefully it will be a little less scary for everyone now.
And then we were off to the Stratford hospital for blood tests, and poor Kirsten was so tired at that point that she cried through most of it. We're going to be back there every other day for the next little while until they figure her blood work out, so it's a good thing that the lab techs there were so nice to her :-)
And then home to relax and play with Jonathan...oh, did we have fun! Kirsten LOVED holding him- we haven't had a young baby in our family for a long time, so she was pretty excited. I just loved watching my brother with him, and it certainly was a thrill to get to feed him and play with him for a bit- what a wonderful treat in the midst of all of this medical nonsense.
We're going to have a pretty quiet day tomorrow- Kirsten doesn't have to go anywhere, so our nurse is coming here to give her her injection, and other than that, hopefully she'll rest most of the day while I answer some emails :-)
Rachel just got home, so I'm off to be Mom...have a good night, everyone!
Monday, January 10, 2005 5:51 PM EST
We're HOME!
We got home about an hour ago- we spent most of the day waiting around the hospital for all of the doctors to finish up their stuff and let us go! Rachel was just incredible- I think that we might try to plan to have her there for a night every visit, as she did a lot to lift Kirsten's spirits. And she was the hit of the ward- last night she and I went down to the kitchen to get Kirsten some ice cream, and she was skipping down the hall singing at the top of her voice "Rachel is in the hospital and I'm OKAY!" The nurses were killing themselves laughing. It was funny to see people's reactions when they saw Rachel though- most people that we ran into thought that she was Kirsten at first, at least until they noticed the hair. I can't tell you how proud I am of her though- to put an autistic child into such a completely new environment and have her not only handle it, but enjoy it herself as well as being able to show caring to Kirsten, is amazing. I have wonderful
kids :-)
Kirsten is VERY glad to be home, although she's pretty tired and worn out right now. Her medical condition is still a bit up in the air right now. Her phosphate level is extremely low, and no one is sure why. The two prevailing opinions are that either her kidney function is impaired in some way, or her hormonal levels are out of whack for some unknown reason. We'll be going to the hospital in Stratford 2 or 3 times a week for blood tests until our next admission to track her phosphate level and give as much information to the London hospital as possible. Her diarrhea is still pretty bad as well, which is causing her quite a bit of discomfort. But the doctors want her to start school again when she's feeling up to it, and I'm hoping that they know what they're doing- the weather is so up and down here right now that there are viruses everywhere, so I'm just hoping that we won't end up in the hospital again soon with another infection. Keep your fingers crossed!
And the BEST news is that we get to see Jonathan (my new nephew) for the first time tomorrow! My brother is bringing him over in the afternoon, and we're all just a bit excited about it! I get to see Dylan on Friday, so I'm going to be a VERY happy camper this week!
Please keep your fingers crossed that Kirsten stays healthy this week. The educational liason from the hospital is coming to Stratford tomorrow to talk to Kirsten's class, and Kirsten wants to be there for it. She's nervous about most of her classmates seeing her for the first time, but she's also excited about seeing them again. My fingers are crossed that she doesn't run into any hurtful comments- she has been so protected by loving friends through all of this that I'm afraid of the time when that bubble will burst. But she's strong, and she has a lot of support, so she'll be just fine.
I'm off to unpack, which usually only takes me a week or so! Have a wonderful night everyone- we're going to!
Monday, January 10, 2005 9:15 AM CST
It's Jeanette again- thanks for doing the weekend updates, Phil!
It's Monday morning and we're still here- I'm vaguely hopeful that we'll get out today, but I'm not holding my breath. Kirsten's phosphate level is very low, and she also has pretty bad diarrhea, so we're seeing the nephrologists (kidney docs) this morning to see if they can figure out what's going on. Home seems like a mirage right now.
But we're hanging in there. We got to go out shopping yesterday afternoon, and then Rachel had a sleepover with us at the hospital last night, and the two girls had a lot of fun :-) Rachel was wonderful- she's off playing in the preschool playroom right now with all of their Barbies, so she's very happy! Kirsten desperately wants to get home and is pretty weepy, so I'm just trying to keep her mind occupied and keep her busy. Fortunately we were able to get all new movies this morning so that should hold her for a few hours at least :-)
I'm off to try and do some research on phosphate, as no one really seems to want to tell me anything. Hopefully we'll be home soon! Thanks for all of your prayers,
Jeanette
Sunday, January 9, 2005 10:24 AM CST
Phil & Josh here again. We're doing another update because there's no computer access for Jeanette at the hospital on weekends. Jeanette says that they won't be able to go home today because Kirsten's blood work is, and forgive me for getting technical here, "wonky". It seems she's feeling OK though -- the two got a pass to leave the hospital for an hour or so later today for some shopping. They have been enjoying getting caught up on their sleep in the private room and right now are hoping to be able to go home tomorrow.
Friday, January 7, 2005 6:18 PM CST
Hi everybody -- Phil and Josh here -- We just got a phone message from Jeanette saying that Kirsten is being moved to a private room (yay - sleep!) because she's getting a bit of a "stomach bug" (boo). Overall things are going well, but they are very tired and are definitely looking forward to some quiet. They will be staying until Sunday morning. The new room number is 7196 and the new phone extension is 54266.
Friday, January 7, 2005 10:41 AM CST
Almost done! It looks like we're going to be getting outof here tomorrow morning, so we're both pretty happy about that. Fortunately our room is emptying out as they send people home for the weekend, so tonight should be much quieter. Kirsten's pretty grumpy and weepy today, but a lot of that is lack of sleep, I'm sure, as well as just generally not feeling too well. She had to drink phosphate this morning as well as her bloodwork is screwy again, and that's always guaranteed to put her in a pretty bad mood. But she's looking forward to getting home to see Rachel and Gary (Gary comes from Spongebob's pet snail, Amanda *S*), and I think that she'll feel a lot better as soon as we get through the door.
I'm apparently looking much the worse for wear lol, at least judging by the way that the med students are giving me a hard time. It's not as easy to go a week without sleep at 40 as it was at 20, that's for sure! But we're both doing okay, and just very much looking forward to getting home again.
Thanks to everyone :-)
Jeanette
Thursday, January 6, 2005 9:17 AM CST
Good morning everyone!
Things are going okay here- Kirsten made it through the first two treatments without many problems :-) Her temperature was a bit up and down yesterday so we're keeping a close eye on it, and her face seems very puffy as well, so we're watching that too. We've still got a crazy room so we're not getting much sleep, and it's difficult to talk during the day, so we're trying to leave the room as much as we can. She has made friends with the 13 year old girl next to us though, so that helps a lot! Hopefully we'll be out on Saturday, and then I don't think that our next treatment begins until January 29, so we'll have lots of recovery time! And next time we're BOTH bringing walkmans lol
She's in pretty good spirits, mainly because I taught her how to play poker and she's now stolen all of my money *g* We're having as much fun as we can though- she's not eating or drinking at all so we're not spending time in the cafeteria, but we're getting to know the other lounges in the hospital quite well.
I'd better get back up there as she doesn't like to be left alone in the chaos there- I can't blame her! But she asked me to come down and let everyone know that she's doing okay :-)
Hope everyone gets through the storm okay!
Jeanette
Tuesday, January 4, 2005 1:41 PM CST
We're here! Back in one of our old rooms...unfortunately it's the big ward room, and we're certainly not all by ourselves this time. A 3 year old who apparently screams non-stop, and a baby who got every noise-making toy in the universe for Christmas...it's going to be a LONG week! Kirsten's off playing air hockey right now- 20 minutes in our room and she said "I HAVE to get out of here!" So we may be spending a lot of time in the cafeteria lol
But the oncologist is thrilled with her- instead of doing MRIs and CAT scans, we're just going to go by her bloodwork results to make sure that there is no re-occurence, as he's so convinced that they've got it all. And I talked to the kidney doctor earlier as well, and we're going to set up an appointment with her as well in 3 or 4 months to take a look at the kidney stones. All in all, everyone is very happy with her.
We're in room 7183, and our phone number will be 519-685-8500 ext 54254. Theoretically that will be working sometime this afternoon.
I'm off to run some errands before we start chemo at 3:30! I'll keep everyone updated :-)
Tuesday, January 4, 2005 7:56 AM EST
We're off to the hospital again! I'll update as soon as I can, and let everyone know what our extension is.
Kirsten is in good spirits, and she hopes that everyone has a good week :-)
Talk to you soon,
Jeanette
Sunday, January 2, 2005 2:40 PM EST
Hi everyone it's Kirsten
I just came back from a hotel in London. And while I was there I tried my first three times in a hot tub. I loved it! And I went down a water slide twice but my Dad always caught me. At night the hot tub was really cool because there is a light inside of it. They had a swimming pool there too. I liked the bathing cap that I wore. I sometimes went into the swimming pool beside the hot tub. It had a pond there with a waterfall and I went under the waterfall sometimes.
Gary and Clarabel are playing a lot now. It seems like they're becoming friends.
I'm getting used to my bald head but I still think that I look kind of like a freak. My friend Devynn still thinks that I look like my natural brave self. I'm wearing a polka-dotted hat right now that has a matching scarf and sweater.
I hope everyone had a good holiday. Thank you for all of the messages and presents.
Now Gary is eating French Fries. I have to go because Mommy is tired and doesn't care about that.
Love your friend Kirsten
Saturday, January 1, 2005 9:56 AM EST
The BEST news- I'm an aunt again! Rob and Andrea had Jonathon Daniel George at about 8:45 this morning (he's the Guelph New Year's baby!), and everyone is doing fine. What an absolutely WONDERFUL way to start out the New Year! I'm so proud and happy, and also miss Mom more than I ever have...this would have been the happiest day of her life :-)
Way to go Rob and Andrea...we all appreciate you going to all of this work to give us all some good news lol
Welcome Johnathan!
Saturday, January 1, 2005 7:23 AM CST
Happy New Year everyone! And I hope that it's a wonderful, joyful one for all of you.
I'm a little bit distracted this morning...my brother and his wife are having a baby even as I'm writing this, so I'm MORE than ready for the phone to ring! We're all pretty excited about the impending arrival, to say the least!
It's been a pretty busy few days around here. Dylan came over for dinner on Thursday night and we just had a fantastic time- he behaved perfectly, and we just had a lot of fun. Kirsten was extremely upset when he left...I think that as she's getting older it's getting harder and harder for her to be apart from him. I won't be surprised if after Rachel has reached the point of going to a different school here we end up moving to be closer to him- we all miss him a lot.
But we had a good New Year's Eve last night :-) Our friend Phil came over with a new TV for us and got all of the TVs and DVDs set up and working, so the girls are THRILLED to have a working DVD in their room now. I'm thrilled as hopefully they can watch Hillary Duff and the Olsen twins in their rooms *S* And then Jennifer and Percy and Jennifer's mom came over for a little New Year's celebration, and that was a lot of fun. Rachel certainly gets into party mode quickly, and both of the cats survived wearing party hats :-)
Kirsten's temperature has been hovering around the fever mark for about the last 2 days now, so we're keeping a close eye on her. Theoretically we don't start back at the hospital again until Tuesday, but I won't be surprised if we're back there earlier.
Thanks so much to everyone for all of their love and support over the past year, especially where Kirsten is concerned. We've been blessed with the best friends and family around, and we're sending all of you the very best of wishes for 2005.
Love you all!
Jeanette
Thursday, December 30, 2004 3:10 PM EST
Whew! Having a few computer troubles here, so if we disappear for a few days everything is most likely okay! I'd swear about my ISP at great length, but since I've spent the last two days doing that it wouldn't really accomplish anything *g*
Our doctor's appointment in London went VERY well yesterday! The injections that Kirsten was getting at home did their job, and her blood counts are very good right now. She gave me a bit of a scare this morning having a slightly higher temperature than normal, but it's right back where it should be and she's feeling fine, so I think that we're okay (fingers crossed). And the best news is that that lump under her incision seems to be gone- Dr. Jardine couldn't feel it at all yesterday, so I guess that whatever it is has resolved itself.
We're gradually getting the Christmas presents packed away, and trying to organize the house a bit before we go away again next week. Rachel's out playing in the snow with Emily right now, Kirsten's out at the mall with Tracy picking up some party hats for New Year's Eve, and Dylan will be over soon for his dinner date with us :-) It hasn't been a bad week, although I'm starting to get a bit crabby. But I'll have some alone time this weekend, which will help immensely before we go back to the hospital next week.
Kirsten sends her love to everyone- she's working on a letter to everyone that she'll post before we go back to the hospital :-)
Hope that everyone's having a good holiday!
Jeanette
Wednesday, December 29, 2004 6:13 AM EST
I hope that everyone is having a good holiday :-) We've been busy here- trying to re-arrange the house to find room for all of the Christmas toys, and just generally hanging out. Kirsten's having a good week- she hasn't even come close to having a fever *S* We're off to London this morning for blood work and a check-up, and then we're off until January 4th! I'm a little worried about passing my new-found cold on to Kirsten, so I'll ask the doctors today if there's anything that I can do to prevent it.
But we're having a nice week- Rachel has gotten into scrapbooking in a big way, and Emily's been coming over to take her outside when she wants to go, so that's a huge help! Kirsten is getting used to her bald head, but she's concerned about what her classmates are going to think- I think that she'll probably feel better after we go to the hospital today.
I'll let everyone know what the doctors say today- have a good one!
Jeanette
Sunday, December 26, 2004 7:37 PM EST
We had a pretty nice Boxing Day :-) As you can see, it was time to shave Kirsten's head- her hair had started to come out in handfuls, so she'd begged me to shave it off. It was more difficult than I thought that it would be, but I've got to admit that she is pretty beautiful with no hair lol She's thrilled- we got lots of comfy, cosy hats yesterday, and I'll call the wig store tomorrow to get a fitting.
The girls were able to go over to Chris' today to see some of their cousins, and Kirsten was very reassured that they didn't think that her incision looked gross. I can't imagine what it must be like for her being 9 years old and looking so different from her friends right now- I'm always amazed at her courage and strength. And of course I'm putting a positive spin on everything- there's NO question that most of her boy friends think that her scar looks pretty cool, and she doesn't realize yet that being bald might set her apart.
Difficult day for me- I'm just tired of her having to go through all of this. But we've got good friends coming over tomorrow, she IS home for a bit, and fairly healthy, and we know that in the long run things are going to be okay.
I'm off for a drink of wine!
Boxing Day morning
What a lovely Christmas we had! I pretty much just turned the computer off yesterday, so apologies to anyone that I didn't respond to.
We had a great day- Kirsten was feeling pretty good! Rachel didn't get home on Christmas Eve until about midnight, so the girls slept in a bit yesterday morning, and then just opened their stockings and a few presents before Dylan and Chris got here about 10:30. Dylan was just super- we had a great time with him, he loved opening his presents, and we got lots of good cuddle time in :-)
The kids loved everything that they got, and Gary the kitten almost went insane chasing wrapping paper and getting into every garbage bag that he could find! He was entertainment enough in himself for the whole day. It was just so nice to have all 3 children there for the day- I don't think that I've ever been more grateful. I missed Mom a lot on our first Christmas without her, but I know that she would have wanted me to be concentrating on having as much fun as possible with the kids.
Kirsten's nurse came for the first time yesterday to give her the G-CSF injection, and that went pretty well. So we'll be seeing her until Monday, and then I think that we'll be doing those shots for the first 7 days after every round of chemo to try and keep her neutrophil levels up and her immune system working as well as possible. She's being very sensible about seeing people and not being depressed because she can't go out too many places- we're having a few visitors over today which will be nice for her, but at least she realizes that our main concern is keeping her healthy right now.
She was mad at me last night though lol Her hair is definitely coming out, although it still looks pretty good. But she wants me to shave it off NOW, and I just couldn't do it on Christmas Day. If she still wants it off tonight I'll ask Chris to bring the clippers over- I'd say that she only has a few more days left until it's gone anyway, so if she wants it, we might as well get to it. Tomorrow I'll make arrangements to get to a wig shop in Kitchener or London as soon as we can, but she got lots of funky hats and scarves yesterday to tide us over :-)
If all goes well we're home until Wednesday, when we go back to the hospital for a morning's worth of tests, and then hopefully we're done until we start chemo again on the 4th. I hope that everyone had as nice a Christmas as we did!
Jeanette
Friday, December 24, 2004 6:09 PM EST
Hi everyone, it's Kirsten. I'm glad to be home, and I'm feeling good. Daddy and Rachel have gone to my uncle's place, and Mom's kicking my butt in Monopoly Jr. We've been watching the Santa updates at http://www.noradsanta.com and we just saw him fly through Paris and Rome.
Thank you everyone for all of your messages and support.
MERRY CHRISTMAS!!!!
I love you all,
Kirsten
Friday morning
Yayyy! It looks like she's coming home for Christmas! She didn't have a fever last night, so she should be home later today :-) We'll have to keep her away from people for a few days, but at least she'll be HOME!
Have a wonderful Christmas, everyone- now I have to race around and try to make this house look Christmassy
Jeanette
Thursday, December 23, 2004 4:28 PM EST
It's official- now we sit around and wait! If Kirsten doesn't spike a fever tonight then she can come home tomorrow. If she does, then we'll continue on with our plans to have Christmas in London. So Rachel and I have everything half-packed...either way, it will be a busy morning tomorrow!
She had her ultrasound this afternoon, and apparently the ultrasound tech said that he didn't find anything to lose sleep over, but the drs. are still reviewing it. Other than that, our big topic of conversation today has been the snow- they're getting at least as much of it in London as we're getting here.
Rachel's doing better- we've been doing 4 hour nebulizers for almost 24 hours now, and her breathing is a lot easier. Maybe we'll even get some sleep tonight!
Rachel's torturing the kitten now, so I'd better run...I'll let everyone know when I do :-) Have a good night!
Wednesday, December 22, 2004 8:42 PM EST
Wow- busy, long day. Rachel and I made it to the hospital this afternoon, and Kirsten was okay through most of it. She had a good cry on me when Chris and Rachel went for lunch, and she didn't hesitate to make her views about spending Christmas in the hospital known whenever a doctor came in the room, but she also laughed and giggled a lot.
They still haven't isolated what's causing the fevers- so far her blood cultures are negative. But she has a scary little lump under her incision which is very painful to the touch, so my money is on an infection pocket in the surgical site somewhere. I don't even think that I want to know how they fix that. But she's going for an ultrasound on that first thing in the morning, as well as another kidney function test, and hopefully some of the tests that they're running will show something soon.
Rachel is pretty sick as well- we got home from the hospital at about 8 tonight and I started her breathing treatments with the nebulizer right away- hopefully a day of those and she'll be feeling better. I think that I'd better keep her home tomorrow, and then she and I will head back up to the hospital for the duration on Friday morning, and get everything ready for Christmas. Hopefully Rachel and Chris can hang out at the hotel and get better while I get to be with Kirsten for a while.
So it looks like we're going to be in London for Christmas! I guess that there is still a chance that she could come home, but it's looking more unlikely all of the time, and I don't really want her discharged until we know exactly what's going on. One good piece of news- the G-CSF that they started her on yesterday has already started to raise her neutrophil count, so hopefully she'll have more ability to fight the infection soon.
Some good news though- Chris is going to pick Dylan up on Saturday morning (weather permitting), so we WILL be able to see him on Christmas Day! I'm not sure whether Kirsten or I are happier about that, but it's going to be a very nice day.
She can have visitors, but only if you're completely healthy and have been around healthy people...her immune system just can't handle anything else right now. I talked to our nurse manager today and he said that small groups are fine as long as no one's been exposed to anything or has had anything recently :-) So that's GREAT news for her- I know that it's a busy time of year for everyone, but if you're in London, and are healthy, we'd LOVE to see you! We're trying to get a laptop that we can use in the hospital so that she can stay in touch with everyone better- hopefully she'll dictate some emails to me over the phone tomorrow as she's very anxious to talk to people.
And hopefully we'll be home soon after Christmas- aside from everything else, Kirsten is missing her kitten dreadfully lol He's a little terror, but SO much fun- he's sitting on my shoulder chewing on my ear as I type this. Juli's bringing over her video camera tomorrow so that we can make a video of him for her- I think that will do a lot to lift her spirits.
We're off to bed now- Rachel's going to need the breathing treatments every four hours for the next little while, so I think that getting some sleep while I can would be a good idea!
Have a good night, everyone :-)
P.S. You can kind of see her hair loss in this photo, and she is just THRILLED about it! Right now it just looks thinner to me, but we spent a few minutes today gathering up the stray hair and putting it in her "keepsake" box lol I'm VERY glad that she's excited about it, even if it is a little weird
And she wanted me to point out Doggie's mask to everyone- she said that she and Daddy and Rachel had to wear masks because they were sick, but Doggie just has his on because he's cool!
Wednesday, December 22, 2004 10:13 AM CST
Well, it looks like we're in for our first real winter storm- great timing! Rachel and I are heading out to the hospital soon, with a very real possibility that we'll get snowed in there, so if I don't update tonight, that's why.
Kirsten did have a fever last night (38.8), so we're back to the beginning of the 48 hour watch. I think that it's unlikely that she is going to be home for Christmas now, so I think that we'll start planning accordingly after I talk with the doctors this afternoon. Fortunately Chris said that he would go and pick up Dylan and bring him to London on Friday if we're stuck there, so we'll all get to see him for at least a little while (weather permitting). That's if the doctors give her the okay to see anyone else, but I can't see them keeping her brother away on Christmas unless things worsen even more than they are now.
She has quite a cough, and over the phone it sounds like she's having some trouble breathing, so I can't wait to get there and see her. Hopefully they will let us bring her home if we promise to keep her isolated- she has to wear a mask at the hospital right now if she wants the door open (which she does), so I'm sure that she and Rachel will have fun with that this afternoon!
Anyway, hopefully I'll know a bit more after tracking everyone down this afternoon! Have a great day :-)
Jeanette
Tuesday, December 21, 2004 8:00 PM EST
An extra update tonight- we've got good news and bad news! The great news is that she hasn't had a fever yet today, so our fingers are crossed.
Bad news (but not to her lol)...her hair started falling out today. She's very excited, and asked me to bring her box tomorrow so that she can save it, so at least she's happy about it. But no matter how much I was expecting it, and have tried to plan for it, I still feel like someone kicked me in the stomach. I can't WAIT to get there tomorrow.
3 pm Tuesday
Thank heavens- her phone is working now! 519-685-8500 ext. 54253 :-)
Kirsten seems to be doing okay this afternoon- a bit more depressed than she was last night, but I think that's because she's getting daily injections to help raise her neutrophil levels now. She had chest x-rays this morning (I'm assuming that they were looking for pneumonia), and she was starting her G-CSF this afternoon- I think that it's in her thigh muscle, so it's probably going to hurt :-( But fortunately they've arranged to have a nurse come over here and give them to her if she is able to be discharged- one more step closer to her coming home!
She has to be fever-free for 48 hours before she can be discharged, and since she was feverish last night we're keeping our fingers crossed for tonight. Her blood cultures also have to be negative, but apparently they're fairly confident that they will be. Obviously the HUGE danger to her right now is exposure to anyone who might possibly be carrying something and pass it on to her, so we'll have a handwashing station set up in the house, and just a few visitors at a time after she gets home. Rachel and I are going up there for a visit tomorrow so I'll be able to talk to the doctors and find out exactly what we have to do to keep her safe but still live as normal a life as possible- she VERY much misses her friends and wants to see them!
Rachel and I have had a Christmassy day- we went shopping this morning and then wrapped presents this afternoon. She really misses Kirsten, and is very worried that she won't be home for Christmas. But the kitten is also distracting her nicely, so she's surviving :-)
I'll have a new picture after we see her tomorrow! I hope that everyone has a good night :-)
Monday, December 20, 2004 8:23 PM EST
Another quick update- I talked to Kirsten on the phone not too long ago (she was in the hall calling from a payphone as her phone isn't hooked up yet), and she's in good spirits. She says that she's coughing and sneezing, but other than that she feels fine. She's most worried that if we spend Christmas in the hospital we won't be able to see Dylan that day, but unfortunately I don't think that there's anything we can do about that :-(
But she's pretty happy- Rachel and I are going to go down to see her on Wednesday afternoon, so she was pretty excited about that.
Hopefully her phone will be working tomorrow!
4:23 PM EST
I finally know a little bit of what's going on. Kirsten is now back at Children's Hospital in London (room 7182, phone 519-685-8500 x54253). Her fever had gone up to 38.8 when she got there last night, so she's currently getting antibiotics through her port. They are trying to figure out what the infection is, but so far not having any luck. My guess is that it's the cold that Rachel and I seem to have developed today as well, only of course with her it's magnified because of her lack of immune system right now. Hopefully I'll talk to her later tonight when the phone is hooked up and get a better sense of how she's feeling.
Chris is staying down with her this week, and Rachel and I will go down on Christmas Eve day if she's not home by then (she most likely won't be). I already miss her, but Rachel deserves some alone time with me too, and I know that Kirsten likes having Chris there as well, and it's not really fair to Rachel to keep her at the hospital any longer than necessary.
So that's all that I know right now- I'll keep you up to date as I find things out!
Sunday, December 19, 2004 5:01 PM CST
Kirsten started running a fever at about 5:15, so it looks like we're back in the hospital for a bit. I'll update the web page as soon as I can- please pray that we'll be home for Christmas.
Thanks,
Jeanette
Saturday, December 18, 2004 2:05 PM CST
Sorry that I haven't updated for a while- it's been a pretty busy few days around here!
Kirsten's doing fairly well- she tires very easily, and has had more nausea than she did in the hospital, but all in all, I think that she's doing great! We had a great time at the Big Sisters Christmas party- the girls were both happy to be there, and Kirsten was just thrilled to see pictures of her and Rachel in the slide show. They both got their pictures taken on Santa's knee, so I'm looking forward to seeing those! We had a pretty quiet day on Thursday as she wasn't feeling well at all, and then yesterday a very quiet day followed by a sleepover with Kevan, which did her a world of good :-) I had a good friend come down for the day yesterday and run me all over town doing errands while another friend stayed with Kirsten- thanks, Phil and Deb! We have food here now lol
I haven't had a chance to say too much about the support that we've gotten from the community, but it's been absolutely overwhelming. One of Kirsten's classmates' father shaved his head for her to raise money at a Christmas party last week, and that has snowballed incredibly :-) Kirsten's story was on the radio yesterday, and was she ever excited to hear her name live! The school, Big Sisters, and numerous individuals have been SO incredibly supportive- I can never thank people enough. I'm no longer cynical about human nature.
And we got our kitten today! Right now his/her name is Tiger, and he's absolutely adorable. We had the entire litter of kittens over this morning, and he was the only one who would come out and play, so he's the one who stayed here. I'm anticipating lots of fun with him lol...I'm sure that there will be pictures soon! The only problem is that poor Clarabel is terrified of him- it's almost funny to see this huge black cat coweing in front of this little fluffball. I'm sure that they'll work it out in the next few days.
The princess is sleeping right now, and Rachel is off making Christmas cookies with her Big Sister, so I'm going to try to get some wrapping done. I hope that everyone has a great weekend!!
Jeanette
Wednesday, December 15, 2004 2:08 PM CST
Yayyy...we're HOME again!
Kirsten's in great spirits- we've spent the afternoon wrapping presents and opening gifts and mail and trying not to mess up the house too badly. Thanks SO much to Tracy and Kristi for taking such wonderful care of Rachel while we were gone!
We're off to the Big Sisters dinner tonight- Kirsten had a good nap this afternoon and she's already dressed and excited. And a typical "twin" funny. I know Kirsten's tastes pretty well, so I went to Old Navy and got her a new blouse to wear tonight. Tracy spent 2 days shopping with Rachel before they finally found a dress last night that Rachel loved- apparently she's quite the picky shopper. (This was the first time that she's EVER wanted to buy something for herself, and it's nice to see that she's showing that amount of independence and making choices!) So of course, for almost the first time ever, they're going to be dressed almost identically...Rachel chose the dress version of the blouse that Kirsten's wearing, without ever seeing it. Sometimes they scare me.
Kirsten came home from the hospital almost medication free- we have a mouthwash to prevent sores and infections from developing, but other than that, her blood is now normal enough that she doesn't need any extra supplements, and her nausea has been so slight that they didn't think that she needed meds at home. We're both pretty happy about that :-)
We go for blood tests next Tuesday, and then back to London for another kidney test next Thursday, and other than that, we're done until January 4th!
I'll write more tomorrow- we're expecting Rachel home from school any minute, and I haven't seen her for four whole days! I think that that's the longest I've ever gone with her, and I can't wait to see her again :-)
Have a wonderful night, everyone!
Jeanette
Tuesday, December 14, 2004 12:39 AM CST
Just a quick one as Kirsten's finishing up her last chemo treatment and then we're off to make a gingerbread house :-)
She's doing very well- still no sickness, and just a bit of extra tiredness. We're getting released tomorrow morning, and hopefully she'll be okay for the Big Sisters' Christmas party tomorrow night- she REALLY wants to go!
We've still got the ward room to ourselves which is nice, and I'm hoping to escape for an hour or two tonight to get my Christmas shopping started (and hopefully finished hahaha)
She's doing great- sends her love to everyone, and we'll talk to you all soon. Thanks SO much for all of your support!
Jeanette
Monday, December 13, 2004 1:08 PM CST
Hi Everyone:
Jeanette asked if I could post letting everyone know that their extension is still 54254. (519.685.8500)
I talked to them last night and Kirsten is doing great, still has all her "plum" coloured hair and is not feeling sick after another treatment.
They both sound a little bored though!
Juli
Sunday, December 12, 2004 12:30 AM CST
Well, we've moved rooms again- back into the ward room. It's not too bad right now as we're the only ones in there, and at least we have a working VCR which we didn't in the private room.
Our extension number has now changed to 58254.
Kirsten's feeling pretty good- very little nausea or tiredness, and she's only a bit disappointed that her hair hasn't started to fall out yet. So far I think that things are going well!
We're off for another chemo in about half an hour, so it's time to go and play some air hockey. Hope that everyone has a good weekend :-)
Jeanette
Saturday, December 11, 2004 9:20 AM EST
Saturday morning update...Kirsten's doing well :-) She just called to tell me that she'd had a good night, and she's only thrown up once this morning. So they changed her anti-nausea medication and she says that she's feeling better now. Other than that she said that she still has all of her energy and her hair isn't falling out yet.
She sounds like she's in very good spirits- we're heading up there later to decorate her little Christmas tree in her room, so she's happy about that. I'm happy about the fact that she told me that I actually get a fold-out bed instead of a couch this time!
The phone in the room is working, so the extension listed below should be just fine :-)
Have a great weekend, everyone- I'll update when I can!
Jeanette
Friday, December 10, 2004 9:04 PM CST
I just talked to Chris, and she's in her own room now :-) At least for the moment- we might get kicked out. But theoretically we're in room 7186, and our phone number is 519-685-8500 ext. 54259 once the phone gets hooked up tomorrow. I just unplug the phone if it's a bad time, so never worry about calling.
And the GREAT news is that she's had her first chemo treatment! When I talked to Chris it had been over for 2 hours, and she felt just fine...that's a relief! It doesn't necessarily mean that it's going to be all smooth sailing, but since some people start throwing up immediately, it's at least a good sign :-)
Rachel and I are just waiting for the last load of laundry to be finished, and then we're off to bed. Have a great night everyone!
Friday, December 10, 2004 2:44 PM CST
Friday update!
Well, I just got off of the phone with Chris, and after all of the rush to get things started today, nothing's happened yet. They haven't gotten our results back from the kidney tests yesterday, and can't start chemo until they do, so it most likely won't start until tomorrow.
And they can't find us a private room, so right now we're in a ward...I REALLY hope that changes! They are trying to find her a room, but so far, no luck. I'm going to keep my fingers crossed that one turns up tonight. I'm grumpy enough at the best of times without having to share a room too. I guess that we were just spoiled with our room last time, but I guess that Kirsten's pretty down about not having her own room as well. So keep your fingers crossed!
She's hanging in there- apparently bored and miserable right now, but hopefully that will change when she doesn't have to share her TV lol. Jennifer's on her way up for a visit now with a pattern book for bridesmaid's dresses, so that should cheer her up :-)
Have a good night everyone- Rachel and I are off to do some Dylan Christmas shopping!
Thursday, December 9, 2004 3:40 PM CST
GREAT news!
We just got back from the hospital, and we talked to the oncologist, got the pathology report, and found out about chemo. It was a germ cell tumour, which is GREAT- it's 95% curable. We have to do four rounds of chemotherapy (basically one week on, two weeks off), and she will have to do that in the hospital, but between times she can do as much as she feels able- school, friends, parties etc. It's likely that chemo is going to be hard on her, but she's surprised me so many times lately that she may just sail through it. And her fertility is possibly not going to be too impaired, and possibly the best news of all, Rachel and Dylan do NOT have a higher risk of getting it, even though they're triplets. We'll still get them screened- it's a simple blood test, so we might as well, and I'll probably try to get them screened every once in a while for my own piece of mind if nothing else.
FINALLY, some good news around here! Our oncologist and nurse-manager are both super- I think that we're in really good hands. Kirsten and Chris are heading back up to the hospital tomorrow to start chemo, and I'll be going up on Saturday and staying for the duration. I'll post our phone extension when I know what it is.
Rachel was great at the hospital today- I think that she thinks that it's her own personal playground. Which is good, as she'll most likely be spending the last week of Christmas holidays there with me lol...our next cycle begins on New Years' Eve day! Kirsten had a wonderful time showing off her pink hair to everyone :-)
Off to find something for dinner...thanks SO much to everyone for all of their support!
Jeanette
Wednesday, December 8, 2004 8:10 PM CST
Another busy day here today. Tomorrow I get the pathology report and find out the chemotherapy protocol, so I've been doing as much research as possible today so that I can ask intelligent questions of the oncologist. From what I've found out so far our final outcome looks very good, but I don't think that it's going to be an easy road for her over the next couple of months. Thank you SO much to everyone that has sent chemotherapy hints and tips- they are going to be very helpful.
The girls went over to Chris' tonight and decorated their tree there, and had a wonderful time. Kirsten got to show off her pink hair at the school today, and she had a blast. She's feeling pretty positive about the testing tomorrow, and she's very happy that Rachel's coming with us for the day.
Wish us luck- I think that it's going to be a long day tomorrow, so I'm off to bed early so that I can at least fake looking intelligent for the doctors. I'll post an update tomorrow night when we get home and I have more information.
Thanks to everyone :-)
Jeanette
Tuesday, December 7, 2004 11:43 PM CST
It's pink hair day here today! Kirsten and I were talking earlier, and I told her that if she EVER wanted to do something crazy with her hair, this was the time. So as of about noon today, I now have a fuschia haired little girl running around, who looks like she's about 16 when she catches me unawares.
We had a great day today- I'm trying to keep her busy so that she won't have time to worry too much about chemo, and so far it seems to be working. Last night she went out for dinner with Jennifer and had a wonderful time- I'm supposed to tell everyone that she got 935,000 on the pinball machine at the restaurant :-) She frightens me with her pinball abilities. She and I had a nice quiet morning after running errands with Chris this morning- we actually did find mistletoe for the house which we'll hang tomorrow (so be warned if you come through the front door), and we got her a tiny Christmas tree for her upcoming room at the hospital.
Don from Big Sisters came over this afternoon and they had a very nice visit :-) She's so thrilled to see people, and it means a lot to her to know how many people are thinking about her. As always, thanks to Big Sisters, and a special thank you today to the Linus Project for her snuggly new blanket which she'll take to the hospital with her.
Tonight she went to see her friend Kevan perform at his Christmas play (she videotaped it, which she was THRILLED to do), and it sure didn't take her long to fall asleep tonight. Health-wise I think that she's doing incredibly well, and I think that seeing her friends is doing a lot for her.
I have a bit more information now, although I'll know a lot more on Thursday after we see the oncologist. She had a germ cell tumour, which although it is not exactly common, does have a reasonably good prognosis. I'm not expecting that chemotherapy is going to be easy for her, but I think that her positive attitude going in is going to help.
I'm doing okay. I got some very helpful tips on surviving chemo from new friends on mailing lists, so I'm feeling a bit more confident about my ability to hold things together and be a good support for her during this time. Rachel is doing extremely well lol...she can hardly wait for me to go back to the hospital so that Mrs. Pfeifer (her teacher), and her worker Kristi can come over for sleepovers. Rachel's also wrapping everything in the house and putting it under the Christmas tree, which was very cute and funny until it took me 3/4 of an hour to find my corkscrew tonight. I'll give her credit though- she had it so well-wrapped that I couldn't even tell what it was.
Special thanks tonight to Juli, for keeping me sane and feeding me smoked salmon, and Lesley...we got a WONDERFUL bear and necklace all the way from New Zealand! I had a great time explaining to her who the Maori are, and the signifigance of the necklace- she asked if she could wear it through chemotherapy, and I said of course.
Thanks to everyone- have a good night!
Jeanette
Sunday, December 5, 2004 5:38 PM CST
What a busy day! But a very good one...everyone is happy tonight :-)
We had a very nice time with Dylan this morning- he was extremely happy to see us, and he and Rachel had fun playing spin the chair for at least an hour. I'm not sure which of them was enjoying it more. Dylan was very calm and happy when we were there, so hopefully that might help him a bit when we're gone, and we'll see him a bit sooner next time. He's doing well- lots of kisses and hugs, no aggression, and he's had a good couple of days, so my fingers are crossed that he's over his latest hump now.
And then we raced home to the Santa Claus parade! We had a wonderful time- the girls just LOVED being inside City Hall, we had a great view, Kirsten was warm and could sit down and see everything...it was great!! She was so thrilled to see some of her friends in the parade, and it really did help to get all of us in the Christmas spirit. So much so that the girls and I got the tree up and decorated tonight...I finally broke down and bought an artificial one so that Kirsten would be SURE to be here when we decorated!
She's certainly doing well physically- she's moving very well, and hardly has any pain now. But she is very nervous about going back to the hospital on Thursday, so we're working on that. I think that we'll have enough to keep us busy this week that she won't have time to dwell on it, at least I hope so!
I'll keep you updated with anything new :-)
Jeanette
Friday, December 3, 2004 5:06 PM CST
Wow- for the first time in a month, I have tomorrow off! The girls have gone to Chris' new house for the weekend, and I've got the house to myself...it's heaven to just be able to breathe for a little bit. We're all meeting up again Sunday morning to go and visit Dylan and then do the Santa Claus parade in the afternoon, but I am very much going to enjoy a relaxing day tomorrow.
More news from the hospital today (although still no REAL news). Kirsten is going to be admitted on Friday to do her chemo, and we'll be there for 5 or 6 nights. So I'm spending the weekend trying to line up some child care for Rachel so that I can stay there with Kirsten- she's very scared, and I think that she'll do better if I'm with her. Hopefully she'll tolerate it well and we'll be able to do one of the next rounds as outpatients, but we'll see how it goes.
Kirsten had a great time with her sleepover last night, and she's getting more mobile every day. She was RUNNING around the house after him last night, so I'd say that she's healing well. And she went over to another friend's house for an hour this afternoon, so I think that she's well on her way to recovery.
I've got to say a huge thank you to Don Lawson and Big Sisters for all of their help and support...thanks to Don's phone calls and our mayor's support, Kirsten gets to watch the Santa Claus parade from inside City Hall on Sunday :-) She's very excited about it- I was pretty leery of letting her stand outside for 3 hours in the snow, but she wanted to go to it SO badly, so this is just perfect. If you are ever able to volunteer some time, Big Sisters is just an incredible organization. I'd always been thrilled to have the girls involved, but now I really see what a huge difference they can make in a family's life.
I'm off to find some food, and revel in the silence! The girls are wonderful, but I'm not going to complain about a bit of alone time either!
Thursday, December 2, 2004 7:02 PM CST
Finally, some news!
I finally got tired of waiting around this morning, and called our social worker from the hospital. I didn't know who else to call as we had so many teams dealing with Kirsten, but she came through for us :-)
They just got the pathology report this morning, and although I still don't really know what's going on, I do have a bit more information. On Thursday of next week we'll be there for the day doing a few other tests (nuclear medicine test for kidneys, and pulmonary test for a baseline to see if her lung function changes during chemo), and then Friday we start treatment (I'm assuming chemo). We'll be meeting with the oncologist on Thursday as well, and then I'll find out all of the answers that they have at that point. I heard a rumour (unconfirmed), that she has a great-looking outcome, and that the course of treatment may be short.
She's doing okay- she was definitely thrown by the news that she'd be starting chemo next week, as I think that both of us had assumed that we'd be waiting until after Christmas. But fortunately her friend Kevan is here for a sleepover tonight, so she's pretty distracted and happy right now. She was even running chasing after him tonight :-) I'm hanging in there- the news that we were starting chemo threw me more than I thought that it would- I'd been hoping for it, but it kind of made me sit back and think "wow, my kid has cancer." It takes me a while to clue in sometimes :-)
I'm off to bed, or at least to herd sleepover kids...it's been a LONG day! Thank you all for your thoughts and prayers,
Jeanette
Tuesday, November 30, 2004 8:17 PM CST
As you can see, we got a visit from some kittens tonight :-) Jennifer and Percy brought over the latest litter, and as soon as they're old enough, one of the females will be coming to live with us and terrorize Clarabelle :-) They're adorable, and we all had fun with them- I think that seeing the kittens was one of the highlights of Kirsten's stay at the hospital, and she was sure happy to see them here!
I apologize to everyone whose emails I haven't replied to yet- it's been a very busy day here, and I'm so jumpy waiting to hear about the pathology report that I'm finding it difficult to sit in front of the computer for more than 2 minutes at a time. I'm possibly not as worried about it as I should be- right now I just want to get it, and know what our plan is for the next few months, rather than dwelling on possible outcomes. I'm not good at being in limbo, and especially not good at not knowing what to research lol A few more days, and we'll know.
It was a pretty good day here, for most of it. Kirsten slept VERY well last night and woke up feeling great, she and I cuddled on the couch and watched a movie for a few hours, and then she decided to walk over to the school with me to pick up Rachel. It was by far the longest walk that she'd taken since she'd gotten sick, and she did very well- she didn't really have any pain, but is certainly unsteady on her feet- we're going to be out and about doing more walking tomorrow if the weather cooperates.
Kirsten was THRILLED to go to the school and see everyone today, and thanks so much to everyone who made so much of her. Her friends were so excited- I thought that we were going to have one near-fainting episode and a couple of girls were choking back tears, which of course made me tear up as well. I know what a wonderful girl she is, but it's nice to realize that so many other people do too. Hopefully she'll be back there soon...if I can, I want to start her back gradually next week, as I know her well enough to know how lazy she'll get if I don't keep her going
I think that Rachel's beginning to have a few more problems, or at least showing them more outwardly now. For those of you who don't know, Rachel is moderately/severely autistic, and she has been wonderful at dealing with all of the uproar around here. But when we got changed for bed tonight she had a screaming fit because she didn't want to look at Kirsten's scar, which needless to say didn't do much for Kirsten's self-esteem. She was trying to calm Rachel down and tell her that she understood, and she does, but it's still got to hurt her. And Dylan's still having a difficult time (again, for those of you who don't know, he's severely autistic and lives in a group home), and Kirsten's desperate to see him- hopefully we'll be able to get over there SOON!
So it's been an up and down day, but the kittens made up for everything :-) I'm going to start trying to get her out of the house more, and hopefully it won't be too much longer until we're fairly mobile again. She told me tonight that she was going to write her surgeons a thank-you note for taking her lumps away and doing such a great job on her incision, but then she asked if it was also okay to tell them that it's really not fair to keep kids NPO for more than a day
Hope that everyone has a good night...I'm off to bed!
Jeanette
Monday, November 29, 2004 4:58 PM CST
Hi everybody- it's Kirsten.
I'm really glad to be home. I am feeling very well. My stomach is a little sore but it's healing very nicely.
I miss everyone very, very much, and if you want you can visit or call me.
Devynn, get well soon. I will be back in school soon. I will be able to go to the Big Sisters Christmas party.
Rachel is doing very well. She missed me when I was at the hospital, but she is very glad that I'm home now.
Mrs. Howard- I hope to be back to school very soon. Thanks for the great report card.
I hope that everybody has a good Christmas. Thank you everybody for all your kindness and prayers and presents. I love them very much.
My Dad got a new house. Devynn and Alicia- you can visit there sometime.
My brother Dylan is doing very well but he is very worried about me.
I want to give a big thank you to my Big Sister Jennifer for sleeping over during the week.
I want to give the biggest thank you to my mom for being at the hospital with me.
The kittens are very, very cute. I can't wait to see them on Tuesday. Thank you Jennifer and Percy. I can't wait to get one.
Your friend,
Kirsten
Monday, November 29, 2004 11:47 AM CST
We're having a good day today! Kirsten's feeling great, and we just got back from the hospital after having her blood work done. Now we just sit and wait for the results of today's tests and the path. report...hopefully it will be SOON! Kirsten's in great spirits, and I've GOT to do housework this afternoon. We had visitors most of the weekend and the house keeps getting worse and worse lol...I've got to do something about it before I go crazy.
So I'm going to be horrible about answering phone calls/emails this afternoon, because I just end up talking forever
Jeanette
Saturday, November 27, 2004 5:10 AM CST
Now we're just being lazy :-)
I think that we're pretty much going to take the weekend off- we've got a few people stopping by to say hi this weekend, and I've got to do some grocery shopping, but other than that, it seems like a movie weekend is a good idea! Rachel's going out to see Spongebob with her Big Sister tomorrow, and I think that Kirsten is going for a slow tour of Daddy's new house, but that will be about as exciting as our weekend gets.
Kirsten's doing VERY well. She had one coughing fit yesterday that left her in a fair amount of pain, but other than that, she was pretty mobile yesterday and is sleeping well. I still can't get over how quickly children bounce back.
And she and I had "the talk" yesterday- she now knows as much about the situation as I do, including the fact that it is ovarian cancer and that she will have to do chemotherapy, but that we don't know any more than that until the report comes back. So now no one has to avoid talking about it with her- thank you so much to everyone for covering for us while it was necessary. At first she was angry at me that I hadn't told her before, but later in the day she told me that I'd made the right decision.
And we started getting our triplet pictures yesterday...thanks so much! She had a great time looking at them, and we spent some time looking people up in the atlas. She still can't get over the fact that there are people thinking of her all over the world.
And now I'd better go and start laundry- my laundry room is a frightening place lol
Talk to everyone later :-)
Jeanette
Friday, November 26, 2004 4:36 AM CST
It's nice to be home!
Rachel was a little freaked out by having Kirsten home- the last time she saw her she still had her catheter in, so Rachel was told to be very careful touching her. So when we got home last night Rachel wouldn't go near her, but they'd worked that out by the end of the night :-)
Amazingly enough, Kirsten's not having much difficulty with the stairs, so I think that it will be easier to have her home- I was worried that she'd be stuck in her bedroom for a few more days. I think that it's going to be a lazy one here today- aside from putting away hospital things and hopefully escaping to do some grocery shopping, I'm not planning on doing too much!
Kirsten's feeling pretty well- she had a good sleep last night, and I think that she's glad to be back here. We go back to the hospital on Monday morning for blood/urine tests, and then back for another appointment later in the week when we'll find out the results of the pathology report, and the drs. will come up with a 3 month plan for her.
I know that she'd appreciate visitors- I'm sure that we'll be lazy today, but just give us a call if you want to stop by sometime (email me for the phone number if you haven't got it). I think that the novelty of being at home will wear off pretty soon, especially when Rachel heads off to school next week.
Thanks to everyone for their support- now we just have to get her strong, and wait for the report!
Thursday, November 25, 2004 5:39 PM CST
She's HOME!!!!
They released us early today because she was doing so well, and because it looks like the pathology report might take another week or so. We're back there for two appointments next week, and THEN we will know what's going on!
I've got to go and get her settled in, but I'll write more later. On the ride home she told me about all of the people that she knew who had prayed for her, and how since she got rid of her lumps AND they let her out early, they must have worked.
Thank you to everyone!
Jeanette
Wednesday, November 24, 2004 2:00 PM CST
Wow! Well, we still haven't gotten the pathology report back, but today it looks like there's a good chance that they'll be sending her home on Saturday! YAYYYY! You can't tell that I'm excited at all, can you?
It was a bit tougher day for her today- they took her off of the last of her morphine last night, and although she's said that she doesn't need anything for the pain I think that she's just toughing it out a bit. She's getting VERY mobile, which is great, as we have just a few stairs at home. Obviously I could keep her in her room near the bathroom if I had to, but it would be nice if she was able to hang out in the living room and kitchen and travel to the bathroom up the stairs when she needs to. So I'm hopeful that her mobility will continue to increase over the next few days.
She's almost off of her IV...I won't be surprised to see it gone when Chris and I go in tomorrow morning. And her staples come out in the morning- she was showing them to me again today, and she certainly has healed nicely. They still give me the heebie-jeebies though
The pediatric doctors ordered a new round of tests today- kidney function, hearing, and pulmonary, so I'm not sure what's up with those- the dr. said that they're just still trying to find out what's going on with her. So I'm just not going to worry about the results unless I have to lol...I'm trying to get good at NOT worrying for a change!
Rachel is getting a bit antsy because she hasn't seen her until Sunday- I'm still trying to figure out a way to get her there to join me on Friday, as Kirsten thought that she'd be able to spend the night by herself if she knew that Rachel and I were in the next house over (Ronald McDonald house). Jennifer has done wonderfully this week, as always, but I think that she's getting a pretty intense introduction to parenthood, as she's had the joys of all of the middle of the night trips as Kirsten's bowels start working again. I can't say again just how much Jennifer has done for all of us- both Kirsten and I would have had a much more difficult time without her. She's a lifesaver.
Time to go and play with Rachel for a while- hope that everyone has a good night!
Jeanette
Tuesday, November 23, 2004 2:28 PM CST
It's Tuesday (I think), and we've had a GREAT day! Big change from last night lol...fortunately my moments of self-pity usually aren't too sustained.
I spent the morning at the hospital with Kirsten and her friend Kevan, and as you can see from the picture they had a wonderful time. I sometimes think that Kevan is the best medicine for her- they had a blast!
She was walking much more easily when I got there this morning, and shifting herself around on the bed without too much trouble. I didn't get yelled at once today :-) Her morphine is almost non-existent now, and she seems to be doing so much better today. She's allowed to eat whatever she wants now, so between the two of them I spent most of my morning in the kitchen or the cafeteria finding food. She is now incredibly eager to show off her incision, so I'm trying to convince her that it's polite to ask if people want to see it before she whips up her hospital gown. She is healing nicely, so hopefully the staples will be out soon.
I think that today's good news was that the doctors are really pushing liquids on her (in addition to the solid food), so that they can get her off of the IV. I'm hoping that that is a step closer to her coming home. Once again, we'll find out when the pathology report comes back, but I'm hoping that she won't start chemo for a few weeks to give her time to heal- I don't want her throwing up until her stomach is as close to normal as possible, and I don't think that anyone else does either.
We're going to try to get Dylan in to see her as soon as possible, so that will be good for both of them, I think. She desperately wants to see him, and hopefully that will calm him down a bit as well.
People have been wonderful (as usual) the last two days- thanks for the ride today, Jennifer, and I hope that you have healthy kids soon! And thanks to everyone who was stuck listening to me whine last night...you're all wonderful, and I wouldn't be getting through this without all of the love and support from our friends.
Have a good night, everyone- Rachel's off with her Big Sister tonight, and my Dad is here, so hopefully we'll have some down time for a few hours!
If anyone wants our home address just email me (JNIEBL1057@rogers.com), or Rob has it now too :-)
Jeanette
Monday, November 22, 2004 8:26 PM CST
Bad day today.
Kirsten's doing fairly well physically, but should be walking more. Unfortunately I can't be there to make her walk as I've got to be home with Rachel this week, and it doesn't seem like she's comfortable walking with anyone else. The nurses and Jennifer will make her, which is wonderful and she needs it, but it's difficult knowing that I can't be there with her when she needs me to yell at. I don't care how much she yells at me if she walks, but she's worried about seeming impolite to anyone else.
And Dylan's aggression has increased considerably this week, so that's another worry. We're not sure whether he's sensing something with Kirsten (that weird triplet thing), or something else, but I want to be there for him too. If anyone wants to perfect cloning this week so I'll be able to be 3 places at once, I'd appreciate it.
We should have Kirsten's pathology report in the next couple of days, and then we'll have a better idea of what we're dealing with over the next couple of months. I'm hoping that I'll be able to have at least 2 children in the same city for a while- that would be pretty cool.
Long story short (too late, I know) Kirsten's doing well, Rachel's hanging in there like a trouper, and I'm worried about Dylan.
Things will seem better in the morning :-)
Jeanette
Sunday, November 21, 2004 7:27 PM CST
Sunday update :-)
Wow- I am just SO overwhelmed by the love and support that everyone has shown us. I'm more sorry than I can say that I can't respond to everyone individually right now, but please know that our love and thanks are always there.
Kirsten is doing WONDERFULLY! The doctors are thrilled with how well she is healing. I've been up there since Thursday morning, and she continues to amaze me with her attitude and her bravery- I don't know how I got lucky enough to have a daughter like her.
Today was a big day- they took out her NG tube and her catheter, and removed the IV from her arm (it's in her port now), so for the first time we're down to only one tube. She's been out of bed a few times now, and is being so brave about the pain of walking. All of the triplet moms with c-sections know exactly what she's facing every time she moves. Strangely enough, I'm most encouraged by her anger every time I told her to come for a walk this weekend- I told her that it was okay to call me names while she was trying to move, and she's taken full advantage of that *grin* Yesterday I moved from being "evil", to "absolute evil", and today I became "the MOST stupid absolute evil" when I made her get out of bed and go for a walk to the bathroom. Of course as soon as she's settled back in bed and the pain has stopped she cries and apologizes to me and tells me that she knows that I'm only doing it for her own good, but underneath the agony of watching her in pain it's actually pretty funny to hear her hurling insults at me when she moves. She's definitely keeping the nurses amused.
Her blood work is GREAT since surgery- the calcium problem that was so overwhelming last week seems to have disappeared with the removal of the large tumour, so that was a relief. She has a very impressive incision- I'm NOT good with stitches so I was afraid to look, but she has staples running right from her sternum to her pubis. The incision is healing well, she was able to eat popsicles today, and hopefully she'll be on solid food by the end of tomorrow. I'm planning to be at home nights with Rachel this week, thanks to Jennifer staying nights with Kirsten and the kindness of everyone driving me back and forth. I have no idea when she'll be released until we get the pathology report, but I'm hoping that she'll be home soon.
Jennifer was able to print out everyone's comments from the guestbook for her and bring them up on the weekend, and I can't tell you how thrilled she was to hear them. It helps her so much to know that people are thinking of her and praying for her.
Rachel is wonderful- it's so difficult for them being apart, but Chris brought her up yesterday and today and she's just doing so well. Thanks in large part to her teacher Tracy and all of the wonderful people at her school she is getting some continuity in her life right now, and I'm amazed and thankful that she's handling all of these big transitions so well. I'm hoping to see Dylan soon, and REALLY hoping that we'll be able to do our chemotherapy in Kitchener so that we'll be close to him- keep your fingers crossed for us.
I'm still pretty much in shock, I think lol This last few weeks have been pretty crazy, but I'm just so thankful that it looks like she's going to be okay.
Thanks to everyone for their support- I should be able to update this a bit more frequently this week.
Jeanette
Friday, November 19, 2004 1:14 PM CST
Quick Friday update
Wow! Well, the surgery went MUCH better than anyone had anticipated it would...I chatted to one of the doctors last night and she said that it was the happiest operating room that she'd been in. They think that they got everything- removed one whopping huge tumour, two very enlarged lymph nodes, and her right ovary and tube, and poked around enough to feel reasonably confident that they got it all.
Once again, she is a super star. We didn't have to go to intensive care at all- we came right from recovery back to her room, so that was a relief. She is doing exceptionally well- the doctors are thrilled. She is less thrilled- she is being brave (and still on a very low dose of morphine), but it definitely hurts. This actually probably won't make any sense as I haven't slept in a while lol
We'll be here for a while, at least- we most likely won't get the pathology results back until late next week, and then we will find out about chemotherapy and treatment. But I'm HOPEFUL now, and it seems like there is every reason to be. When the surgeon told us last night that there was a chance that she was still going to be able to bear children I almost burst into tears- I could care less whether she has children or not, but I'm VERY, very thankful that he thinks that she's still going to be around at that age. Our luck picked the best time in the world to turn around!
We can take phone calls (same extension)...right now at least the phone isn't bothering her at all (she's too busy yelling at me...apparently the main morphine side-effect with her is the desire to speak her mind). So feel free to call- I'm just unplugging it when I need to sleep.
We can't thank everyone enough for their thoughts and prayers and help- love you all!
Jeanette
Thursday, November 18, 2004 7:00PM EST
Jeanette just gave me a quick call as Kirsten was on the way to recovery. The operation was a success!!!!!!!!! She said they managed to get the tumors, unfortunately she did lose an ovary and a tube but they say that she should still be able to have children. I will post more details as I get them.
It's so nice to know that all our prayers, wishes, and positive thoughts were well received.
Juli
Thursday, November 18, 2004 4:01 AM EST
Wow- I can't tell you how much we all appreciate your messages of support...I will print them off and take them in to Kirsten this morning, and she will be just thrilled!
We had fun at the hospital yesterday morning- Rachel came in with Chris and I to spend the day at the hospital with Kirsten, and the two of them had a great time together. One of the hard parts of this for both of them is that they are separated. Rachel spent most of the day tucked into bed beside Kirsten, cuddling her and trying to kiss every part of her that she thought might hurt :-) Whoever says that autistic kids don't have empathy definitely does not know Rachel! We're hoping that as Kirsten recovers Dylan may be able to come up for a short visit as Kirsten very much wants to see him. I think that we'll wait until after the stitches are out though
We were able to take some nice videotape of the girls yesterday morning thanks to Juli's great loan of her camera- thank you! The girls had a great time being "stars", and Kirsten made a nice little speech that I'll treasure forever. Unfortunately she slept through most of her visitors in the afternoon/evening, but I know how much she appreciates people coming to visit.
Medically we've had better days than we did yesterday. She had to drink something yesterday to clean out her system before surgery, and since she just couldn't tolerate it we had to put in an NG tube- I think that it's safe to say that we've all had more fun. Initially she didn't tolerate the NG tube well either, so we chocked her full of Gravol and she slept for a few hours, and seemed to be feeling much better when she got up in the evening.
I think that it's safe to say that the highlight of her day was Percy bringing in the new kittens to see her- she'd been looking forward to it all day, and it sounds like she had a very nice visit with them downstairs! She was extremely happy when I talked to her before bedtime last night.
Her surgery is at 1 o'clock this afternoon, and will most likely last anywhere from 2-4 hours. I'm setting up a phone /email tree soon, and will hopefully have someone to put an update on this page. She will most likely be moved to the ICU for a couple of days, so I'm not sure whether we will have phone access up there or whether we'll keep her room there- I will try to keep everyone up to date.
Wish us luck today, and please keep her in your prayers.
Jeanette
Wednesday, November 17, 2004 4:04 AM CST
Tomorrow is the big surgery day, so keep your fingers crossed. At this point it looks like it is uterine cancer, with one large tumour and two lymph nodes involved. We won't know exactly what we're dealing with until after the pathology reports come back from the biopsy, and I'll let everyone know then. Kirsten is in pretty good spirits...she very much wants to get back to her family and friends, but she's being incredibly brave.
The hospital is wonderful- they keep her busy with non-stop fun things to do, and they are an incredibly caring group of people. We're lucky that we ended up there, although it would be nice to be closer to home.
Rachel and I are heading up there for the day today, and then I will be moving back to the hospital tomorrow morning and staying until Sunday night.
Wish us luck, and please, keep her in your prayers. Thank you to EVERYONE who has been so wonderful to our family- once again, in a crisis, we've learned just how wonderful people are.
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