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Friday, October 2, 2009 10:26 AM CDT

Well..I think this will be my last update. I plan on making this into a book for her.

She is doing great cancer wise. She still takes meds daily for gastritis, asthma and sinus issues. Somedays it seems like yesterday others it seems like forever ago. Alexis does not remember much if anything from her treatments..which is great..

She broke her left arm this Summer, but just got her cast off after 6 weeks and is doing fine.

Thank you for eveything. God Bless.

Karen

Friday, May 8, 2009 1:36 PM CDT

Well gues it is time for that yearly update. Alexis still has issues with gastritis and we think she will have that her entire life.

She has been sick the last few days, but is feeling a bit better today. (she was throwing up and fever).

April found us with health issues once again. Alexis started with a cough after a week, she went to the doc. was given antibiotics for a sinus infection. After 5 days a phone call to say cough no better, so a switch in antibiotics. A few days later still not better and now T was coughing, so back with them both to the doc. We switched Alexis allergy meds and put T on antibiotics. The next day R started coughing. Waited a few days and called about Alexis again and switched her antibiotic yet again. A week later T coughed so hard he threw up, so Monday morning yet another call to the doc. We decided they needed to be tested for whooping cough (not Alexis as she had already been on a zpack). I could not take them in that day as Alexis had a neurology apt. So Tuesday took them in, but both T and R on z packs and tested them for whooping cough. Yep it was positive, just great. We do know Alexis did have a sinus infection as we took a x ray but we are sure she had it also. So J and I just finished our profolactic z packs as welll and we are now all non contagious. They do still cough and that could last for a up to 2 more months.

Now as for the nueorology apt. See Alexis has had headaches for over a year. Since like fall of 2007. We mention it at every apt. no matter who she was seeing. We were always told she is dehydrated or something. Finally they sent us as the headaches were getting to be daily. Anyway, she saw the doc and we were pretty sure it was stress type headaches, or family hx of headaches. Anyway he did order a MRI because of the hx of leukemia. The MRI came back with no tumors, but left frontal venous abnormality. She is suppose to have a MRV, MRI for veins, tomorrow. So we will see. Her headaches are better, but we did also stop her singulair, so who knows.

take care,
Karen

Wednesday, February 4, 2009 10:52 AM CST

Wow almost a year has gone by without a update. Guess that means life if getting to a more normal state. Alexis is doing well. She is now in the 3rd grade. She is still having issues with gastritis, but I think that will be a life long issue. She takes prilosec (2 pills double the adult dose), advair (for asthma), zyrtec and singular (for sinus issues) and albuterol as needed.

She is a happy 8 1/2 year old. We feel so blessed that she is doing well. She also does not remember much if anything from her treatment days.

HUGS to all.

Karen

Thursday, March 13, 2008 5:37 PM CDT

Wow it's been a long time. I guess like is getting back to normal as normal can be. Alexis' last Onc. visit was in Dec. and things look good. She also saw her Pulmanologist and was ok there too.

This year has not been a good one for us. We have all been sick, esp. Alexis. The poor kids just can not get a break. In Jan. she had the stomach bug thing. In Feb. she was hospitalized for a large lymph node. She complained on a Thrusday night that it hurt, took her to the doc after school on Friday just to have it checked. Her white count was high, but otherwise good. By 4 am the next day she had a fever and was throwing up, after talking to the Onc. we took her to our local er. That was a disaster, after many test and talking to her Onc she was transfered to Childrens's. Her white count was over 30k. We spent 4 hours in the first er and 2 in the second before she was admitted. By Sunday her counts were normal. She was given losts of iv fluids and antibiotics. Whatever it was was gone.

A few weeks later she had a stomach ache again. We nursed it for a few days. Then when she had a sore throat with it I took her in as Jeff had strep for the 2nd time in 2 months earlier in the week. Yep she had strep and so did her sister. By Friday so did Trevor. But her stomachaches never went away. I thought it must be the antibiotic she was on. Well the day after it ended she had severe rt side pain. I took her to the doc and she was constipated. She is on miralax for that, but the stomach aches still happen. The on Tuesday the school nurse called again, yep rt side pain again. Called her primary and talked about it. Then this am severe rt side pain. we spent the morning in the er as clinic was not open. They did labs (looked good) UA (slight blood there) abd x-ray has poop still on Lt side. So they did a abd US and everything looks fine. Sent us home to follow up with primary next week. I am so frustrated. We are thinking appendix, but at what point do you say if you think that is it take it out. Jeff wants us to take her to a specailist at Children's. I plan on calling primary tomorrow and give a update. Oh an all of this with Jeff out of town.

So there is the latest update. Cancer wise she is great, stomach wise not so good.

Take care and hugs

Wednesday, October 31, 2007 1:06 PM CDT

Wow, 4 years ago today Alexis' was dx with cancer. There are days that it seems like yesterday and then others that it was forever ago.

Alexis does not remember much about tx. which is good. She knows that she has/had cancer and is a survivor and that not everyone is. I am so proud of her she has such a good heart. I love you Alexis.

She is looking forward to trick or treating tonight. So are Rachel and Trevor although Trevor does not want to wear a costume.

Alexis is doing good, her cough is back, but it is that time of the year. She goes back to the Onc. and Pulmanologist in December. We will see what happens then.

We just got back from Jeff's sisters wedding. It was good and the kids did fine. I wll try to put up some pictures soon.

Thank you for continuing to check up on us. I really do appreciate it. HUGS to all.
Karen

Thursday, October 4, 2007 7:31 AM CDT

HI Alexis is doing good. She is over her ear infection and had clinic a few weeks ago. We saw Dr. Messinger. He said she looked great and he counts were good too. He told us to watch for night sweats and such (she had those before dx) and to call right away if she had any. It makes me nervous but......

She had 2 teeth pulled on Monday. She did great and even went to school after. She has 2 adult teeth coming in and there was no room, so they were high and a little crooked. The dentist said that the 2 baby teeth next to them should come out, so we went to a specialist. We had a consult on Monday and they said they could pull them that day, so we did. He thinks she will have "space" issues from now on.

So she is doing good. School is going ok, she is in Title again. Which is still in the air if she likes it or not. She misses Star of the week time so she does not like that.

Rachel and Trevor are doing good. Any tips on couch jumping????? Trevor is all boy and be a little .....

Jeff got back from England fine and we are back to our normal routing, for the most part.

My brother and his family are coming this weekend and the girls are so excited. Then my parents come the next and then I need to shop for the wedding and then it is the wedding.

Well thanks for checking in I need to go get Alexis moving faster for school.
HUGS,
Karen

Wednesday, August 29, 2007 7:13 AM CDT

Time just flies by. Alexis is doing good. Having some allergy issues especially with all of the rain we have had lately. Other than that she is doing great. She does not want school to start. Funny that when school ended she did not want it to end and now she does not want to go back. She has Mrs. Koch for a teacher this year.

She goes back in September for another check up. I can not believe that we are almost ready (by time line) to go to every 6 months next year. Not that I don't worry, but wow.

Rachel is so ready for preschool to start. She will be going 3 days a week, and is looking forward to it. Her open house is tonight.

Trevor, well is Trevor. All boy and has no desire to wear underwear or pull ups. I think after Jeff's sisters wedding in Oct. I will work on it hard.

Jeff is doing good, busy at work. He is going to England again next month. I think my brother is going to come up for a quick trip in Oct and my parents too.

I am doing good too. Today 15 years ago Jeff and I were married. I love him more today than back then. He is my support, my rock, my shoulder to lean on, my friend, I appreciate him so much for all he does for us. I love you. Happy anniversary.

Thanks for checking in.

I will try to get a new photo up soon.
Karen

Monday, July 23, 2007 3:09 PM CDT

Sorry it has been so long. WE were back seeing family for almost 3 weeks. It was nice, but it nice to be home.

We went to Jeff's brothers first. We swam in their pool almost everyday, saw fireworks. (I stayed back with a cranky Trevor, but could see the high ones), went to the park, a jumpolene place and saw a IMAX 3d dino movie. It was a lot of fun. We also got the girls flower girl dresses for his sister's wedding this fall.

After about 6 days there we went to my parents house. We did not go anywhere, but had a good time. Jeff and Alexis had to go to urgent care for sinus issues. WE went to Roger's house one day too. Pam seems to be doing ok, they don't tell us much. John is working in Monmouth full time now, (he worked at a factory for 20 yrs and the up and moved to Mexico).

Jeff, myself, Roger (my brother) and Stephanie all went to the Chicagoland NASCAR races. It was fun, well Roger and I thought so. We saw the Racin'the Bases, ball game for Charity and 3 days of races. Mom had the kids, and it went well, or so I was told.

Alexis is doing well. She is nervous about 2nd grade and has learned that playing at home all day is more fun than school. We have tutored her 2 days a week all summer and will do so until school starts. She likes being tutored, partly because Aletha has horses and we pet them afterward. She is doing good.

Rachel is good to and looking forward to preschool again.
Trevor is good, but no school for him this year. We pulled him out as he has no interst in wearing underwear, at least for me.

Take care,
And thanks for checking in.

OH I will try to get a pic posted. When we were home, my old beautician cut our hair. Alexis was done and she wanted it shorter. We had 7 inches cut off. She said she wanted a "new me".

Karen


Please excuse the quality they were taken on my cell phone.

Tuesday, June 26, 2007 12:48 AM CDT

Hi wow Summer is flying by. I can not believe it is the end of June already. WE are getting ready to head back to Illinois to see family for a few weeks. It should be good. We are also going to a NASCAR race, no kids though. : )

Alexis is doing good. We think she may have some eye allergies, but not sure. She had a check up last Friday and it went well. Counts are perfect and she also saw her pulmanologist. WE are trying to take her off her Advair and see what happens, so far so good. He thinks her trouble taking a deep breath is from reflux. Which makes sence especially since off and of for several months she has complained of stomach aches, but only right after she goes to bed. Makes sence if it is reflux. We are trying a over the counter for now and will see what happens.

thanks for stopping by.
HUGS.
Karen

Monday June 4, 2007

Well school is out and Summer is here. Alexis will start being tutored tomorrow, 2 times a week, just to keep her going on her reading.

She is doing well. Had pink eye twice now and a cold, but.....It does not mean that I still don't worry, I think I always will.

She goes back later this month for her Onc. apt and to see her pulmanologist. It will be a busy month, with tutoring, play dates, and the routine (hair cuts, dentist) and getting ready to go see family in Illinois.

Rachel and Trevor are good, T is into hitting, not good.

Thanks for checking in.

Aug. is just around the corner and once again I will be walking in the Relay for Life, if you are interested in helping the cause just let me know.

HUGS
Karen




Monday, May 21, 2007 7:49 AM CDT


AS I have said before wow time flies.

Things here are going good. Alexis has 8 days of school left. Rachel has one.

Alexis is doing good. She has her next pulmanology apt and oncology apt the end of next month. Jeff was to go as he has lots of questions for the pulmanologist. But we just found out he will be out of town. Oh well. I know he would like to try to get her off her meds.

Alexis has pink eye and is home from school today. She has been on antibiotic eye drops for almost 24 hours, but her eye was still goopy this am.

The girls are in swimming lessons right now. They started last week. Rachel is in a preschool class, it is for just getting used to the water, more fun than anything.

Alexis is in level 1, she is doing good. She told me she would do anything but get her face wet. Well they get their face wet the whole class, they do a lot of going underwater. She is doing it for her instructor though.
They have class this week and then done for now. I will sign them up again though.

Hope all is well.
HUGS,
Karen

Saturday April 14, 2007

Alexis pulmanology apt. went well. We did increase her meds. We increased her Zyrtec and Singular. Her ears were retracted to she is on Omnicef now too. He said if her ears are retracted then she has fluid in her sinuses most likely and that if it was draining into her stomach that would make it upset. So we are giving the Omnicef to see if that helps. I will see how she feels in a few weeks. Also if she keeps having issues we may increase her Advair. Time will tell. WE had talked about decreasing her meds and trying to get her off them, but not yet. Jeff was not thrilled at all. He wants her off her meds. I told him that next time he needs to come with then, so he can talk to the doc. I agree with the doc that if she is having issues then not to try to take her off YET.

We have a friend, Dave, in the hospital right now with unexplained dizzyness. I have another friend whose co workers newborn is having platelet issues. Please keep them all in your prayers.

Also I have a on line friend, April and Logan, Logan has relapsed in his CNS and will restart chemo.

Please pray for all of them, thanks,

Thanks for checking in.
Karen





Tuesday April 10, 2007

I hope everyone had a great Easter. We had a quiet on here at home. We had ham, potatoes, g. beans and rolls. It was yummy. The kids got some toys from the Easter Bunny and candy,of course. We went to church that morning, it was nice.

Alexis goes to the pulmanologist this afternoon. She is doing good. Has been getting lots of stomach aches. Not sure why. The Onc thought maybe constipation, but I don't know. I will give her exlax again and see if it helps, if not then a visit to her reg. doc. She seems to be doing good.

Rachel is doing good too. Trevor is starting to use the toilet once in awhile.

My sister in law has cateracts due to her cancer tx. so she is to have surgery next week. Please say prayers for their family. It has been rough. The factory my brother worked at for 20 years, went to Mexico. They said they would send them to school and get umemployment. Well after a lot of issues, he finally got to go to school. But unlike he was told, his unemployment ran out a few weeks ago. He will graduate in May, but.... with little to no money coming in it is hard. And now the cateract surgery. He is working some and will go full time when done with school.

My Dad is doing good. They are planning to come up the first weekend in May.

Well thanks for checking in.
Karen





Thursday, March 29, 2007

Hi everyone. Alexis is doing well. She has the usual cold stuff, or maybe it is the start of allergies. Who knows. She goes back to the pulmanologist on April 10th.

She is doing good. Enjoys school and is finally getting extra help with reading at school. We plan on having her tutored during the Summer. She has her first school music program on April 16th. She is excited and is also excited about a field trip on the 20th. I am going as a chaperone. It should be fun.

Rachel is doing good. Trevor is better now. He had a temp of 104 earlier this week and we could not get it to break, so they had us take him to the ER. We finally got it down they said he was fighting something but not sure what. He is doing good today other than the fact he fell off the kitchen chair and bit the inside of his lip really bad.

Jeff is doing ok. It has been a rough week at work as a co worker suddenly died. He was on Jeff's team and Jeff worked with him daily. He was Jeff's age and had 5 kids between the ages of 3-14. It is just so sad.

My Dad's pacemaker surgery went well. He was going back in today to have it looked at. But he is feeling good.

Thanks for checking in on us.
God Bless,
Karen

Friday, March 16, 2007 3:07 PM CDT

Wow time is just flying. Alexis has her first 3 month apt. next week. She is doing well. She will go in early April to see the pulmanologist.

Not much new. She is doing ok in school. She does struggle with reading, but I think that is improving. We have confrence next week. It was suppose to be earlier, but we had a snow storm.

So all is going well. We have the usual childhood issues as in friends, not friends stuff going on, but this too shall pass right? Rachel and Trevor are doing good. Gettting bigger. We have not been able to convince Trevor that diapers are a bad thing yet, so he is still in them. I know he is only 2 1/2 but..... It would be nice to go home this summer without a diaper bag. I am looking forward the the Chicagoland NASCAR race. The last time we were to go, we had pit passes, but Alexis was would have just finished DI#2 so we opted not to go. This year no pit passes, but we do have tickets to the race.

Jeff and I are even going out for a evening the end of the month and Cindi and Warren are taking the kids. We have to talk to them about times yet. I think it will be late Sat. after their church and then we will pick them up on Sunday sometime. It will be nice to get away. Maybe a early Anniversay thing?? It will be 15 years this Aug. Also Jeff's sister is to get married in Oct. and all 3 kids are in the wedding. It should be a fun, yet quick trip.

Well not much else. Thank you for checking in on us and Alexis.
God Bless,
Karen

Wed., February 28, 2007

Hi well we got a lot of snow last weekend 12-15 inches and we are to get the same or more starting tonight. Sounds fun, oh well it is still Winter.

Karen



Friday, February 23, 2007


Hi again, we are all doing good. Kids all have colds with a cough, but....not much new to say.
We are gearing up for a Winter storm. We have had such a mild winter, so we will see if they are right or not. Last time they did this we only got about 4 inches here but more in the Twin Cities. They are saying that we could have 12 plus inches by Sunday. Time will tell. It is to start sometime tonight. As long as the roads are good by Monday. I am taking the van to St. Cloud on Monday and a apt. that night in Elk River.

Thanks for checking in.
Karen




Monday, February 12, 2007 11:53 AM CST


Wow seems like I just posted, then I look and it has been almost a month.

Not much new. Alexis is doing good. She has been using her inhaler more, but not in the last few days. So that is good. She is doing ok in school. She struggles with reading, but is doing her best. I think we are going to get her a tutor for this summer.

Rachel and Trevor are doing good.

Like I said not much new. Oh Thank you to Kyla and Ms. Richens class from Ca. for the Valentine for Alexis she loved it.

well take care and thanks for checking in.

Karen

Wednesday, January 24, 2007 8:12 AM CST

Time is just flying by it seems. Alexis has not been feeling great this week. She has still went to school, but has complained of a upset stomach. I know she has a cold yet again too, me too. Last week she said she was having trouble breathing, so we had to use her rescue inhaler several times. That seems better for now. So we will see how things go.

Other than that she is doing good. Asking about summer already. I think she wants to see her cousins in Illinois.

Rachel is doing good. She still likes her preschool and is doing good. She still has oral fixation issues, bites her nails and puts everything in her mouth. Has done is since she was about 2 when we took her blanket away. She sucked on the corners. Oh well this to shall pass.

Trevor is getting bigger everyday. He is ALL boy. He loves to jump on or over things, including Rachel. She got the hard end of the deal, esp. last night. He stood on her neck,ouch. He is talking more and is now in a big boy bed. Now potty training...he has no interest yet.

I am doing ok, getting over yet another cold. I have to start my WW (weight watchers) back up. I have gained a lot back. Jeff's sister is suppose to get married this year and his brother has a pool so that will be my motivation I hope.

Jeff is doing good. He is headed to Europe again later this week. This will be his 2 trip overseas in 2 months. I don't know how families do it when their spouse travels all the time and esp. the millitary families. Hats off to you all.

Alexis does not go back to clinic until the end of March. It is hard to get used to that. The Winter Carnival for the clinic is this Friday and Alexis and I are going. Jeff did not want to, so he will have the other 2 that night. I think it will be fun.

Please pray for all of the people and kids fighting cancer, and to the families who lost a child to it. We lost another little one to this beast this week. He was just 2 and had been fighting this beast like a champ since he was 3 months old. I can not imagine what Melissa and her family are going through. Please send them extra prayers. They gave everything to Donnovan. They moved to get the best care and so much more.

Thanks for checking in. Hugs.
Karen

Tuesday, Dec 19, 2006

Will the sickness ever end. aghhh. WE have all been sick. Seems like the last month someone has had something. Alexis, Trevor then last week Jeff and I both got it and this morning Rachel has a temp of 101. Of course her Christmas program for preschool is tonight. And we have the never ending gunk in the throat and running nose here too, including me. I KNOW if could be so much worse.....

Please continue to pray for my on line friends who are battling this beast and for all of those who lost a child or loved one to cancer too.

I hope everyone has a HEALTHY and Happy Holiday Season and a Very Merry Christmas.

Karen




Wed. Dec. 13, 2006


Sorry it has been so long again, seems like time is just flying by.

Alexis had neruo/psych testing done last week. We will get the results after Christmas. I don't expect any major issues, although we have some things to work on for school in the word area.

She also saw Dr. Shreeve last week. We decided to keep her on all 3 meds again and put her back on a anitbiotic for a sinus infection.

On Friday she woke up sick, no fever but throwing up. She was sick all weekend, so we had to cancel Rachel's birthday party. On Sunday she felt better, but is still not 100 percent. Monday her stomach hurt and yesterday her ear. We will see what today brings. Right now I am up and have been most of the night with Trevor, who now has it. Two days ago he had nasty stinky poops and since about 2 am he has been throwing up. It is now 5 and I am on my 3 load of laundry from throw up and he is on the couch, which is coverd by towels. He now knows what the bucket is for too. I hope we can get more from clinic later this month as we are down to 3 and 2 have cracks.

Hope everyone is doing well.

HUGS and thanks for stopping by.

Karen who is very tired





Wed. Nov. 29 2006



I hate cancer, it is so unfair to these kids. There have been lots of new parents join the all list and tonight we found out that Baby Donovan has relapsed for the 2nd time, and it does not look good. So please say extra prayers for him and his family and all those fighting this beast.

AS for Alexis she is doing good. Had counts on Monday which were great. WE are keeping her on zyrtec for now along with her other 2 meds for Asthma.

Thanks for checking in on her.

Here is a poem I found on another CB page. I put it on the top of the page, but I want to make sure you read it atleast once.

Little Children, Big Problems


There is a very special place
I have within my heart
It holds the little children
Who know what REAL PROBLEMS are.
I know we all have problems,
We all have a cross to bear,
But I'm talking "bout the little ones
With a GREAT BIG world of care.
A world of pain and treatments,
And a fear of the UNKNOWN
Sometimes these little children
Call their hospital room "home."
They often suffer daily,
But they rarely will complain
About the treatments they endure
Which cause most of the pain.
Sometimes these treatments are much worse
Than the sickness in itself
And can cause some complications
Which could jeopardize their health.
Although these little children suffer
And are often ill from drugs,
They always have a smile to share
And they give the BESTEST HUGS.
So, next time you have a PROBLEM
which you feel you cannot face,
Just think about these LITTLE ONES
And try to have just half their FAITH.
written by Rachel's mom, Susan!


Karen








Saturday, November 25, 2006 9:03 PM CST


I hope that everyone had a great Thanksgiving. We did. It was beautiful up here, around 50 degress. We spent the afternoon at Cindi and Warren's and their family. It was fun, and had way to much to eat.
The kids just love Chanda's fiancee Randy. They can not get enough of him, he plays with them. It was nice to be invited over to be with their family and included as family. Thanks Cindi and Warren we love you two.


On Friday we had our annual Thanksgiving with Kevin and Michelle and family. It was a lot of fun. They came to our house this year, as we had a new table and we thought it would be easier with Trevor's nap. We both split the meal so it is not too bad to cook. We eat and visit, then everyone goes home and naps, and then we all get back together that evening. We usually play cards, but Kevin started feeling bad so we played phase ten and uno. It was still a fun time though. The girls turned into a bunch of giggle boxes, as they don't see each other as much since they do not live across the street from each other anymore. Trevor was in awe of Jasper (age almost 14). Jasper was so good and tollerant with him. It was soooooooooooooooo cute.

We are all doing ok. Fighting colds yet again, will it ever end. Alexis is doing well and has clinic on Monday. I can not believe that it has been almost one year since she went OT (off therapy). It will be one year on Dec. 26th. We are so Thankful and blessed that she is doing well.

Thank you for continueing to check on Alexis and our family. HUGS to all.

Karen

Friday, November 17, 2006 10:11 PM CST

HI sorry it has been awhile.

We had a good Halloween. I took the girls trick or treating. It was chilly, but not bad. We went around our block. The girls were flying unicorns, or as Alexis would say no mom a pegasus. I will try to get pictures up soon.

Alexis is still eating her suckers from it. They did not get a lot of chocolate, which Alexis did not mind, but Rachel did. Alexis is not my chocolate child. I don't know if part of the reason why is we gave her a lot of her nasty tasting meds in chocolate syurp, but she does not really care for it. Trevor and Rachel on the other hand LOVE it.

Alexis is doing good. We have put her back on her Zyrtec and her cough is gone. We will try to take her off again later and see what happens. If it comes back and we put her back on it again and it leaves, then we will know for sure she has to have it.

Jeff's insurance is changing in Jan. and not for the better. I am glad that Alexis is done with all of her treatment part... We will now have a detuctable and then have to pay 20 percent of the bill instead of a flat copay. Lots of things with Jeff's benifits are changing next year, from sick time, vacation, benifits, how often he gets paid.... It should be interesting.

As I said Alexis is doing well, we are so blessed by that. She even likes school now and got a award today during Pod celebration at school. It was for showing respect which was the theme this month. Not everyone got one.

Rachel also loves school and would go more it she could. She will be 4 in just a few weeks and is so excited. She is doing good in school too. She has been kind of clumsy the last few days and has a few bruises on her forehead, but ... She also got her hair cut up to the top of her shoulders last night. It was her choice to do so.

Trevor is doing good too. He is ALL boy. He loves his cars and trucks. He can be a brute though. He is talking more and more. Before we head back to see family next Summer I would like him to be in a big boy bed and no nuk. No diapers would be nice too, but that might be asking a bit much as both girls were not completely trained until they were just over 3. WE will have to decide soon whether or not to reserve a spot for him next fall in pre school. They will only take him if he is NOT in diapers, we have until March to decide.

Jeff is doing good, has a ear ache that he may get looked at next week if it is still bothering him. It is Friday, so he will be on the computer with Art tonight. He really enjoys that.

I am doing good. Have gained some of the weight back so I need to try to crack back down. Jeff's sister got engaged so that may be more incentive as she may be getting married sometime next year. The date is not set yet.

We are going to Warren and Cindi's for Thanksgiving next week, and then of Friday will have Kevin and Michelle and family here for Thanksgiving and card playing. WE can not wait. We are blessed to have such great friends.

WEll I have rambled on long enough. Thanks for checking in on Alexis and the family.

God Bless and Happy Thanksgiving.

Karen

Oct. 30, 2006

Monday, October 23, 2006 11:01 AM CDT
Alexis was sick for 3 days last week. She is doing fine now. They are excited about Halloween tomorrow. I have mixed emotions of course. It will mark her 3rd dx anniversary, and one year since Heidi passed.

We will go trick or treating and enjoy it.

Next week Jeff is heading to jolly ol England for work. He will be back just in time for me to do a girls day with Kim. I am looking forward to it. WE are planning on doing Body World at the Science museum and go shopping and eat at Bennihana's. YUM TUM.

Well supper is almost done and Jeff just called and is still at work.

Thanks fro checking in.

Karen





Hi well we got over the colds for the most part.

Alexis had clinic last Friday, things look great. He counts are perfectly normal. She was not very cooperative with Dr. Messinger today. She found out she was going to get her flu shot and was not a happy camper.

We had a good weekend. I went to Nunsence 2 to see Michelle. It was great.
Sunday was church and a quiet day.

Rachel, Trevor and myself all got flu shots this morning. Jeff had to stay home until we got back, as Alexis was us in the middle of the night throwing up. I am glad I asked Jeff to stay home as she trew up several times while we were gone. She is on the couch right now. So far she has kept 2 crackers down, we will see how the rest of the day goes.

Hugs to all and thanks for checking in.

Oh I almost forgot, Dr. Messinger told me that once you get to the 3 year dx date that the chance of relapse goes down some. It will be three years on Halloween. The next big time frame will be the 5 year mark. At that point she will have the same chance of getting leukemia as the general public, not that she can not relapse after that, but it would be less likely. She does have a higher chance of a secondary cancer from all of the meds, but she is here with us and doing good, well except that she is sick right now.

Karen

Monday, October 9, 2006 10:18 AM CDT

Here we are in Oct. once again. A month of mixed emotions for me. I am thrilled that Alexis is doing great. She is getting a cold, figures as Rachel, myself and Trevor are all sick right now.

On Halloween it will be 3 years since her dx with cancer. There are days it feels like yesterday and others forever ago. We are trying to adjust to "Normal" life, but I must admit that I still feel my heart jump when she is not feeling well or complains about a leg or arm hurting.

She is doing well other than a cold right now. She does not like school, but we are dealing with that.

I want to thank again all of you who continue to stop by. It really does help still knowing a few are still out there checking in on her.

September was a bit frustrating again as it was Childhood Cancer Awareness month and you never hear anything about it. But in Oct. you get bombarded with breast cancer awareness, don't get me wrong as a mammographer I know how important it is, but....... Maybe people don't want to think of a child with cancer, neither do I, but there are so many out there and not all of them make it.
OK done rambling for now.

Thanks again and hugs and prayers to all.

Karen

Friday, September 29, 2006 7:47 AM CDT

Wow it is already the end of September. Alexis is doing well. Her last Onc apt was last week. Her counts look great, completely normal. The only thing is she had yet another ear infection. This is like her 3rd or 4th one this year.

School is going ok. She does not care for it that much. She says it is long and hard. She likes her teacher though, which is good.

Rachel loves school. She gets mad when she does not get to go. She goes 2 mornings a week.

Trevor is doing good too. Getting big and saying and doing more things.

thanks for checking in on us. Although Alexis is OT, it still helps knowing you are still thinking of her.

HUGS to all,
Karen

Friday, September 1, 2006 1:59 PM CDT

Wow how time flies. Alexis is doing well. School starts next week.

Here are some pictures of Relay for life this year.




Alexis' luminary. This was in the local paper along with a picture of her getting her balloon.




Walking the surviviors lap. The person in the blue is Beth, she is a good friend of mine and a survivor.



Here are several of Alexis' luminaries and a girl named Savannah who I "met" on line.







We also went to Duluth. It was a lot of fun other than Jeff hurting from a hernia. He had surgery yesterday and is doing ok. In pain but ok. We were in Duluth for 4 days. We went to Canal Park, on a train ride, the Superior Zoo, to Enger tower (Alexis and I went to the top), and swam in the hotel pool. It was a lot of fun.



Kids at the lift bridge on Canal Park in Duluth. Trevor did not want to stop throwing rocks to take the picture.





Getting rocks on the Lake






I added more in the picture area too.


Hey Alexis where are your teeth????




She lost both in about a week and a half. She got them out on all her own.

Well thanks for chekcing in and stay safe this Labor Day weekend.

Karen

Aug. 24, 2006

Wow where does the time go. I can not believe it is the end of Aug. already.
Alexis is still doing well. Her Asthma meds have really helped and she notices it too.

We just got back from 4 days in Duluth. It was our first time back there since she was dx. It was a lot of fun. I will try to add more about that later. I just wanted to let you know that we are all doing ok. Alexis is great and excited and nervous for school to start in a few weeks.

Thanks for checking in on her/us.
HUGS
Karen





Monday, July 31, 2006

Alexis had clinic last week. It was a morning apt, so we did our old routine of Hardee's if traffic was not bad. So we went through Hardee's drive through and took it to clinic. If was fun to get back to the "old" routine. We may get to do it again in Aug. too. As for her apt. her counts were great completely normal. They gave me a chart of her height and weight since dx too. She is right where she should be. They did say that they were concerned last fall when she was chubby. Kids have a tendency to get heavy (obese) after treatment. Somehow she corrected it. They said we did it, but we did nothing different, I think that going off of her steroids and chemo helped. She is still on Zyrtec, Singular and Advair, for allergies and asthma. She goes to a Allergist on Aug. 7th. We know that she has a high mold allergy, so we will she what else there is if anything and if there is anything we can do to help it.

Dr Messinger was just thrilled with how she is doing. Her calves are tight, so we need to work on that (chemo issues Vincristine), but otherwise great. We are hoping to repeat the Neuro testing next year if our insurance will pay for it. Jeff's insurance is going to change in Jan and we do not know to what yet. She did the testing shortly after dx, within the first 6 months or so.

WE are also going to catch her up on her shots too. She is NOT thrilled with that either. HE told us that we are to act like it never happened when it comes to giving her meds for colds and such, so we can give her Motrin again. Like we can act like it never happened yeah right, NEVER.

So things are going good. NOW if we can get Rachel to go in the toliet all of the time again. For some reason she has decided that she will go in her pants and does not care, if she is at home. She does not do it all of the time, but UGHHHHH. She says she knows she has to go, just does not want to. GREAT. And if we can get Trevor to not scream at the top of his lungs, hit, kick......

Thanks for checking in on us.
HUGS to all.
Karen





Friday, July 14, 2006 3:24 PM CDT


Hi everyone, sorry it has been so long. We went out of town for the 4th of July. We had a nice time. We left on June 30th and drove to Cedar Rapids Iowa and saw friends that we have not seen in way to many years. They cooked us dinner and surprised Alexis with a birthday cake. After being there a few hours we drove the last 2 hours to my parent’s house in Illinois.

Sat the 1st was not only Alexis’ 6th birthday but my brother’s wedding. So that was a busy day. The morning was not too bad, relaxing and giving the kids baths and getting ready. Then off to the wedding. It was really nice. It was small, 40 to 50 people. They served salads and sandwiches after and cake of course. They also had a table with balloons and a dino cake for Alexis. They even sang happy birthday to her. She got presents at my mom’s later that night. (note that was cake number 2 not including the party we had at home which there were 2 cakes).




Roger and Steph







Our family






Miranda Jordan and the girls





That night we played cards at mom and dad’s, well all but Roger and Stephanie. My sister in law Pam looks ok, she is pretty skinny, always has been, but ….. She received her full Zebulon treatment last week. (she has non Hodgkin’s lymphoma that has returned and spread after her first round of relapse protocol) So now we wait and see what happens. John said that this is it that there is or will be no more treatments. (sounds like there are no other options at this point) She is allergic to the thyroid meds so she can not go on anything stronger, so I am afraid that the prognoses is not as optimist as we would like it to be. So please keep her in your prayers.

Sunday Roger’s Church had a luncheon to celebrate the wedding, more food and cake. It was nice. That afternoon we went to mom and dad’s and hung around and ate. The kids played in the small pool and we played some cards and tried to stay cool.

Oh Trevor decided he was not going to sleep in his port a crib so he was sleeping between Jeff and I in a double bed, that was fun. Once he was asleep we would put him in it, but as soon as he would wake up, he would SCREAM. It was like that the entire trip. Nap time we would get him to sleep and put him on the air mattress on the floor. And at Jeff’s brothers we had the set up the crib thinking ok he would sleep in it, yeah right. No go there either. So we did the same thing. The one night we stayed in a hotel we put him between us then when everyone one was out, we put him between the girls. I think we will do that when we go to Duluth in Aug.

Monday we took the girls and Logan to see the movie Cars, it is really cute. They had a good time and thanks to Aunt Stephanie I got to see the whole movie. She took Rachel to the bathroom as they had already seen it. Rachel even informed me that Aunt Stephanie was going to take her. I thought it was great that she was calling her Aunt already.

Tuesday we packed and hung out. That night we went to the fireworks, hoping for the best as we had never taken them before. Alexis went when she was like a year. They did great, even Trevor. Uncle Roger bought them ice cream and Uncle John glow necklaces. They watched the fireworks and Rachel only plugged her ears once. Trevor never cried in fact he even fell asleep. They loved it. I was impressed.



Fireworks








The next morning we got up and finished loading the van and went to Hardee’s for breakfast. Alexis’ loves their croissants egg and cheese only please. After that we hit the road toward Chicago to go to Jeff’s side of the family. We stay with his brother Art who lives just over the border in Indiana.

We got in early afternoon. Jeff’s parents came to visit that evening. The next day we went to a local park. The kids had a blast. They had lots of slides even Trevor got in the act. It made me a little nervous, as he was going down some really big ones. The enclosed ones did not bother me but the straight ones did, if he lost his balance there was no way I could reach him. Jeff at the top and even with me reaching up along the side I could not hold his hand until Jeff hand let him go. We were there about 2 hours or so the off to DQ for ice cream and lunch. I guess I should have said lunch and ice cream, but oh well. I went to WW about 10 miles away and weighed in. I just wanted to break even and did. I was a little nervous with all of the cake I have been eating. We went swimming in their pool that afternoon. The water was nice once you are in, since they have a pool heater, but it was windy and only in the upper 70’s. The girls had fun though, but it was cold. Jeff’s parents came that evening again to visit.

POOL time

Alexis, Rachel and Aunt Mary








Friday the kids went swimming, I took a nap with Trevor. (NASCAR qualifying was at Chicagoland Speedway only a hour away but Jeff did not want me to go by myself, boo hoo.) Jeff’s parents and his sister Theresa came over that evening to visit.

Saturday Jeff’s other sister, Rita, and her family came. Art and Mary had ordered Chicken and fixen’s and a birthday cake (cake number 3 on the trip or 5 total not including the one just because ) for the family. (There are lots of birthdays in June and July) We ate and then swam that afternoon. Jeff’s parents and Theresa came too. That evening we did a bomb fire and smores. It was fun.

Sunday the girls wanted to go back to the park so Jeff and I took the kids there. By the time we got back ate a late lunch, gave the 3 of them baths and packed and loaded the van it was almost time to leave. We were going to leave on Monday, but did not want to deal with Chicago traffic, so decided on Sunday at around 7 then realized it was race day. So I told Jeff we needed to be gone before race traffic. I don’t think he wanted to, but he finally agreed with me. We avoided most of the destruction, I mean construction, on the major road ways in Chicago by taking back roads that Jeff’s dad had given us. Jeff’s dad did not think that taking us with in 15 miles of the speedway would put us in any race traffic, but I still beg to differ, but it does not matter since we left before the race was over. (Hopefully next year I will be in the stands watching it)

We stayed in Rockford that night and finished the drive on Monday. It is nice to be home. Jeff took Tuesday and Wednesday off, just to kick back. And we got back just in time for 90 to 100 degree days. Thanks goodness for central air.

As for Alexis she has a slight cough. She is going to see an allergist in early Aug. for a high mold allergy and high IgE level. Not sure what that will bring??? Maybe special furnace filters to help time will tell.

She has 2 more weeks of Summer school left. She likes it but says it is long. It is 4 hours, just wait until 1st grade. Rachel is signed up for pre school two days a week for this fall. Trevor is saying more and more.

Jeff is doing well and so am I. In fact some how I even lost a pound this week. I am not sure how with all of the cake, cookies, ice cream (DQ twice), French toast, pancakes, and other things I have not ate in 16 weeks. So I am back to trying to hit it hard again. Oh for those that don’t know or have not figured it out by now I joined Weight Watchers. So far down 42 pounds and I am not done yet. Thank you Angie for watching the kids, while I am at the meetings.

So now you are up to date on our clan.


Alexis striking a pose.



Thanks to all who wished Alexis a happy birthday and who keep checking in on us.

Also thank you to Alexis’ birthday Angel for the great toys for all of the kids they loved them.

God Bless,
Karen

Friday, June 23, 2006

Hi Alexis had counts done yesterday and some allergy lab work too. It will take about 4 days to get the allergy test back. Her counts were fine. We found out Monday that she has a ear infection and her counts reflect that, which is good. It means that her marrow is working how it should be. I guess sometimes the marrow gets lazy and does not do its job, but hers is working just fine.

She is doing great. We did add singular to her other meds, so she is now on 3 daily meds. So I guess we won't get rid of daily meds once chemo is done in fact she is doing more now. She is also taking omnicef for her ear infection. We found that on Monday when I took Trevor in for a fever and ear pulling, he is fine, and the girls could not be left out so Marilyn looked in their ears and yep Alexis had a infection. Figures right.

It has been a busy week. Alexis also started Summer school this week, which so far she loves. We are having a early bday party for her on Sunday, her birthday is July 1st. We will be at my brothers wedding. So if you can wish her a happy birthday.

Thank you Vera for being her so much this week and last. What would we do without you.

Well supper is almost done.
Hugs to all.
Karen




Friday, June 16, 2006 12:13 AM CDT


Hi not anything new. Alexis is doing well. She goes in next week for her routine apt. and also to see the pulmanologist. She is still having sinus issues, I am going to call today to see about possible allergy blood work? Why not right.

Rachel is doing good. whinny but good. Trevor is saying more and more.

We took the kids and Emma, a friend, to Build a Bear last weekend for their birthdays. They had a blast. I will try to add pictures soon. It was a good time.

Jeff is still at Cat. They are going to close another plant, so at least he is still employed. There are days I worry. We have a friend that will lose his job in Nov after 20 years, seems like companies are downsizing or refiguing things. Makes me nervous.

I am doing good. After no luck with the ENT I am now going to a Allergist next week. Time will tell.

Thank you all for checking in. Even though Alexis is off therapy, it still helps knowing you are thinking of her.
HUGS to all of you.

Karen

Tuesday, May 23, 2006 5:06 PM CDT

Alexis had clinic today. Things look great, other than her sinuses, but what else is new right. We are keeping her on the Zyrtec and are to add nasal saline to see if it will help. Her counts were great. Dr. Moertel checked her out really good. So other than those sinuses she looks great.

We are all fighting some sort of cold/sinus thing right now.

My sister in laws Lymphoma is back. She is to start a new drug called Bexxar. It sounds promising on their web site, but time will tell as she was to start treatment almost two months ago and has not started back up yet. I want to see her for myself as John says she is doing good, and she says she is fine, but my Mom and Dad and brother say she is really skinny, so I want to see for my self. So please keep her in your prayers.

My Dad went into the hospital today to have his heart meds adjusted and monitored while they do it. He should be there 72 hours or so. There is a posiblity of a pacemaker is needed.

I need extra prayers for on line friends, Bradley lost his battle with cancer and Ethan Super Ethan’s Page


is not doing well at all. Please keep them in your prayers. Also Ben is struggling with his cancer and pain med addiction, he is waiting for a bed in a adult tx center(he just turned 18).


Thanks for checking in.
Karen

Thursday, May 4, 2006 8:28 AM CDT

Wow where does the time goe these days. Alexis had clinic on the 25th. Her counts were great. She was getting a lot of headaches, which they were not sure why. Well on Thursday night she was up with a temp of 101 and throwing up and yep a headache. On Friday morning she felt better. I kept her on tylenol. She would be up a little and then all of a sudden I don't feel well and grab her head. She seems fine now.


She went to the dentist this week, NO cavities. She loved it and can not wait to go again. Rachel goes today.

We have all be sick lately. Trevor is finely feeling good. He has had diarrhea the last 5-6 days. Rachel has a "tuffy" nose. I am having sinus issues ? allergies not sure and Jeff is fighting something.

My parents came up for a few days last week. The girls loved having them up and so did we. I will try to up date sooner.

We have finally seen the sun the last few days after 4 days of solid rain, it has been in the 50's to low 60's but windy. but at least sunny. It is to get nicer I think, but at least it has been sunny.

Thanks for checking in on Alexis.
HUGS to all,
Karen

Tuesday, April 18, 2006

I hope everyone had a great Easter. Ours was uneventful. Jeff ran the sound board for sunrise service, so the kids and I met him for the 9:00 service. After church we came home and the kids ate candy for lunch. I started the ham for a early dinner. We sat to eat at 4ish and Trevor fell completely apart, so he was put to bed. He did not wake up until 11:30 and kept me up off and on for the next 4 hours.

We also had birthday cake. It was my birthday. I will spare you how old I am. It was a good day.

Alexis is still doing well. Today she told me that I had to come look outside. That someone must be on their way to Heaven. You know how the sun breaks through the clouds and you can see the light. That is what she was looking at. It was beautiful.

Rachel has a cold, but is doing good.


My sister in law, Pam, has some more spots (lymphoma) we are waiting to see what the next step is. She was already on chemo when they showed up.

Please continue to pray for Keith and my on line family. We have had about 5 new families join in the last few days.

Thanks for checking in on Alexis.
Karen




Thursday, April 13, 2006 10:57 AM CDT

Wow where does time go. I can not believe it is almost Easter.

Nothing new going on here. Alexis is doing good. She does have a cold and lost her voice on Monday, but otherwise uneventful.

We took Rachel and Alexis to see Ice Age 2 a few weeks ago. They loved it and had a lot of fun.

Trevor is doing good, trying to talk more and more. He got his hair cut last night and it was the first time he did not scream and sat still.

Like I said nothing new. Aleixs next apt. is on the 25th.

Hope everyone has a great EASTER.

Karen

Sunday, March 26, 2006

Hi Alexis clinic apt went great. She did so good with the needle stick. I used Emla to numb the area. They also knew it was her first time. They had her lay on the table and put a pad under her arm. She was nervous and wimped a few times, before the stick. I just told her to hold her arm still. She watched the whole thing. They told her when the needle was going in and when it was coming out. They did use a butterfly needle, which is a small needle. She did great. She told me that getting her port accessed hurt worse than the needle stick. Kim saw her. She looked at her really good, had her walk and tested her muscles. We put her on Zyrtex for her sinuses to see if that will help. Time will tell, yes we are still having sinus isssues. Her counts were great. When I was told her ANC I had a breif panic mode, thinking that is way to high. Then I remembered she is done with chemo. Her ANC was 4850.

She is doing good. She was at a birthday party today, they went to Build a Bear. She had a blast.

Please continue to pray for Keith, and Ann. Ann is not doing well. Also for my online friends and for my friend Kim. She is a great friend and just over a year ago Cameron, 4 now, was dx with Autisim. Now her 2 year old Carter, is being tested. They think he will be on the spectrum we are just not sure where yet.

HUGS to all.

Karen



Wed. March 22, 2006


Hi nothing new to tell. Which is good. Alexis goes to clinic tomorrow. It will be here first time there without her port. I hope it goes well. She is feeling pretty good. Has bruises on her legs and such, which makes my mind run. but.....

Thanks for checking in. Please pray for Keith, and Ann and Pam all of who have cancer. Pray for my on line friends who are stuggling, we just had another CNS relapse. Had port removed and her clinic does a end of treatment spinal and BMA and "it" was back. I hate cancer.

Karen


Thursday March 9, 2006

Wow March already, where does the time go. Alexis had her 2nd Kindergarten conference last week. She is doing ok, struggling in a few areas, but....
She still has her steri-strips on her incission, but it is doing good and so is she. She is excited about seeing her cousins this summer, especially Miranda and cutie-pie Jordan. (her words) She has a hard time understanding that we will not leave for 4 more months.

Rachel is doing good. I have NEVER had competition for the Mint Girl Scout cookies before, well this year Rachel has ate more than me, I know hard to believe, but she did and they are GONE. It is or was cute as she called them the breath mint cookies.

Trevor is doing good, getting bigger. He is trying to say more things too.

This fall Alexis should be in 1st grade and Rachel in preschool two days a week this will be good one on one time with Trevor . WOW then in 2007. I could have 2 kids in preschool. If Trevor is potty trained he could go Tues/Thursday and Rachel Mon./Wed/Friday. Time will tell.

We have had good and bad news on my on line support group. A few more have went Off Therapy, Keegan received second remission, after a relapse, but then today we learned a sibling is having a BMA today to rule out leukemia. So keep all of them in your prayers along with Ann and Keith.

Thanks for checking in on us.
God Bless,
Karen



Tuesday, February 28, 2006

Hi Alexis had her port removed yesterday. It went really well. She did great. Is a little sore, but doing good. I could not believe how small it was. I thought it would be a little bigger. I will try to get a picture up soon. So no more port. She will go back in March for a check up and get her first labs from the arm. could be interesting.

The surgeon put a really cute covering on. I will put a pic up of that too. I wrote a little poem that I am going to put with the port along with some pictures in a shadow box.

This is my port cath.

Put in 11-1-03 and removed 2-27-06



This port cath may be small, but it did a very big job.

It gave me most of my chemo and was also used for blood draws

They used it for my sleepy meds and for spinal taps too.


We put emla on my skin to make it nice and numb,

And then Linda put a needle in and then all my work was done.

My port did all the rest, I just sat there brave and strong.

I think it did a great job and now it’s work is done,

and I won’t ever forget how it helped me give my meds

right through my little chest.

So thank you port for helping me through the last few years,

But now I must move on, so stay safe here in this shadow box

To keep the memory strong.





So all is going well. Please pray for Keith he was dx with Lymphoma, my Mom's friend Ann, who was also dx with cancer. All of my online support group, some are having a really rough time right now. And Kristie's husband, Blaine, whose surgery did not go as planned and now needs radiation.

HUGS,
Karen

Alexis with port accessed.



Alexis with animals after port removed. She got the animals for being brave for the removal.


Alexis and her heart bandage. Is that cute or what. We need to leave it on for a week, and the take it off.



This is her port.



Friday, February 24, 2006


Hi well Alexis had her 2nd OT apt yesterday. It went well. Her counts look good. She is still having sinus issues, but what else is new right. She has been getting lots of headaches, but not sure why. She is going to be deported on Monday. She is nervous, but I am sure she will do fine. I think she is more nervous about not having a port for blood draws. They will have to use her arm now. So far all is going good. That does not mean that I don't worry, but..... They said she can start back on vitamins, so we plan on getting some for the kids this weekend. She can also start getting her vaccinations. We do need to wait 3 months for non live and 6 for live. So I think we will wait and do them in July after we get back from Illinois. That will put her at 6 1/2 months.

She also saw her pulmanologist yesterday. She is doing good and he was impressed on how she responded about the medicine being strong. We are going to keep her on the Advair for now and he gave us a script for Albuterol to use if needed. I asked if we should say she has asthma, he said for now yes. We would like to try to take her off the Advair in 6 months to a year to see if the cough comes back. If it does than we will start the advair back up and repeat the procedure in another 6 months to a year. At that point if her cough comes back she HAS asthma, if not then it was asthma brought on by her chemo, not that she would not need treatment for it later in life. So time will tell.

We are all doing good.
Thanks for checking in on us.
Please pray for my online friends, my Mom's friend ANN who just got a bad cancer dx, and Keith from my church who is undergoing lots of tests right now. Also Blaine, Kristie's husband, was to have surgery today to remove more cancer. We met them in Florida last year. Kendrie also has ALL like Alexis.

God Bless,
Karen


Here are a few pictures. Enjoy.

Alexis easy to take pictures of when she does not ham it up.






one of Rachel sleeping, how cute is that.





Trevor




Trevor driving on the computer. He even ooo's and aww's when the cars crash (demo derby)





Alexis with her Valentine doll from the Cali Ali Valentine Project.

February 21, 2006

Well Alexis ran a fever off and on all weekend. Not high, but still. She is still getting headaches. I will ask on Thursday when she goes in. She did go to school today, we will see how she feels when she gets home, as she was up most of the night. She said her animals were alive and that there were bugs in the house. I assured her her animals were NOT alive and that there were no bugs in the house, but we were still up about 3 hours. UGH.

Thanks for checking in.

HUGS,
Karen




Wednesday, February 15, 2006 9:24 PM CST


Well it is Friday night. Trying to stay warm, in this 8 below without wind chill temp. Alexis started running a low grade temp. I called in (after hours of course) as I was not sure if we could give tylenol. She still has her port. I talked to the Onc and we decided to give it.

Then as Jeff at supper. He worked late again. He goes "what's that? Hair?" I went over and sure enough it was. Rachel had been cutting paper, yep she cut her hair. She took about 3 inches off her lt side. Luckily it is hard to tell, but wouldn't you know we got hair cuts LAST NIGHT. ugh. For now we are going to let it go and decided if then next apt. to even it up, right before Easter. 3 inches, ugh.

well got to go.

hugs,
Karen



Hi wow mid Feb. already. Not a lot new on this end. I guess we are getting into a new "normal" yet again.

Alexis is doing good. Has been having a lot of headaches, not sure why. Trying not to worry about it. She still has a cold, but I think it is getting better. She still loves Kindergarten. She has confrences in March so we will see how she is doing there.

She goes to the Onc and Pulmanologist next week and then has her Port removed on the 27th.

She recieved a Valentine from the first anual Cali Ali Valentine Project. She loved it. She got a pony tail holder doll and card. Cali Ali is a college student who has (had) leukemia. Her mom is on my on line support group. She took it upon herself to have her Kindergarten class make Valentines for the kids on the list who asked for one. I asked for Alexis as she LOVES getting cards in the mail. It was so cool to see the look on her face. So thank you Marey. She is very active in raising awareness and funds for cancer. She is training for the Leukemia and Lymphoma Society bike ride and other things.











Rachel and Trevor have been sick for the last week. I took them in today and they both have ear infections. They are now on antibiotics and cold meds and tylenol. I hope that they will get feeling better soon.

Thanks for checking in. Please take a few to sign the guestbook even if it is just HI.

Karen

Thursday, Feb.9, 2006

I will try to get new pictures up in the next week or so.

Not much new. Alexis and Rachel have colds. Alexis' bad cough is back. She did go to school today. She seems to be feeling ok, but..... Rachel has a very stuffy nose.

Other than that we are doing ok. Just 2 more weeks and Alexis will get her port out (27th). She is excited and nervous.

Jeff got reasigned at Cat and will be working on engines now, or something along that line. I hope it goes well. He should start it later this month.

I am doing good. We just made reservations in Duluth for Aug. Just a few days to get away with the kids.

Thanks for checking in on us.

Karen




Thursday, Feb. 2, 2006

Well we made it through the weekend. Rachel never got sick again, although she did have a bloody nose again this week. She has been telling me to take her to the Doctor because she is sick. So far I have not done so but did call in. She has no fever and acts fine, has complained off and on about her ear but.....

Rachel made a huge step today. She threw away her "blankies" yep. Boy is it going to be a long day. For those that don't know, she uses her blanket like a pacifier, she sucks on the corners and wants them most of the time. IF she is tired, upset, in the van, everywhere.

Trevor is trying to say more and more.

Oh you might have came to see how Alexis is right. : ) She is doing great. Has a cold. When does she not have sinuse issues though. She is still on her 2 day a week antibiotic and Advair daily and her nose spray. She is loving being OT. She is doing good in school and loves her teacher. She does struggle some, we will find out in March how she is doing and whether we need to consider holding her back or not. I am hoping that we won't but time will tell.

Please pray for my online friends, we had yet another relapse on the list. I have lost count how many we have had in the last few months, maybe 6, not good. They have been CNS relapse not BM. So please say a extra prayer for them.

Thanks for checking in.

Karen


Friday, January 27, 2006 10:05 PM CST

Ok it has been a long day. Don't get me wrong it started ok, but...Morning went well. Then I got a call from a friend about her insurance and how much they won't pay. ugh. Then Betty called. Emma's grandma and the bus had not shown up yet. It was over 20 min late. So I gave her the teachers number and I called the bus company. We thought maybe she was put on the bus to daycare and not home. Well the bus had got stuck somewhere and was running 25 min late. I called Betty and told her and while on the phone the bus showed. (Mich been thinking about you a lot, talk to you tomorrow). OK all is well Emma is safe and home. I e mailed Mrs. Edgar to make sure she knew Emma was home in case Betty did not call back. I got a email back that Alexis was crawling on the playground outside and had a few friends helping her walk/crawl. Well about a month or so ago the girls fell on the ice and Cindi's and this week Alexis wiped out on the driveway on the way to the bus. Yep she was crawling because it was slippery and she did not want to fall. OK that gets me to afternoon and things are still going fine.


3:30 get ready to go to the Oncology Winter Party. Jeff did not want to go to beging with, but.... we talked him into it. We went to Cat to get Jeff, while waiting the girls decided they needed to go to the bathroom. So I call Jeff to meet us in the lobby and not the van, as I try to get 3 kids out and into the building. WE made it. So we wait inside, Jeff comes and we leave. We go to Cub to get a dessert to take. Traffic was not that bad and we were there a little after 6. The kids were "starving" so they picked out gifts and we filled plates. They barely ate anything. Off the girls were to play games and do crafts. We won a cert. to a steakhouse. I got to see the Hurley's which is always great, and talk to Sarah, Mike and Luke who we only see at clinic functions. Luke just went OT too. It was fun but stressful too if that makes sence. It was time to go. NO problem we load up and head out. We have to drop Jeff off to get his car. Trevor was asleep and so was Alexis. Rachel was trying to get comfortable or so we thought. Then it happened. Rachel started throwing up. WE were just a few blocks from Cat so we went there. WE pulled her out of her car seat and tried to clean her up and the car seat. I had spare clothes, so Jeff took her and Alexis into Cat to clean up and go to the bathroom. I cleaned the van out and put blankets in bags and got Alexis bucket ready for Rachel. When I saw them come out I got out of the van and Alexis was crying. Well I guess she tripped and fell face first into the floor. She has a scratch on her nose and there is a good chance that it will be bruised. So we load back up with Alexis crying and nervous whether or not we can make it the 30 miles home without Rachel getting sick again. I did. Rachel is still on the couch asleep. Alexis is next to me with a ice bag and tylenol has been given. Did I mention that Jeff did not want to go in the first place, and YES he reminded me of that. So next year it most likely will be just Alexis and me.

Other than that things are ok. Rachel was fine the rest of the way in fact she told me several times she was hungrey and sang from Rogers the rest of the way home. Go figure.

Well hope you all have a good weekend. Thanks for checking in on us.

Karen

Sat. Jan.21, 2006

Wow were does time go. I am so sorry it has been awhile since a update and for those that have checked and esp. those that signed the guestbook THANK YOU.

Alexis had her first OT apt. last Thursday. Her counts look great. She has been sniffling a lot, so we are trying a nasal inhaler. It is a nose spray, but she has to sniff it in. So she is still on her antibiotic, until March sometime, and her Advair and the nose spray. The Advair and nose spray are both steroids, so still joy in Sternville, not as bad a oral, but I do notice a little moodiness.

We scheduled her port to be removed on Feb 27th. She does NOT want it out as she does not want blood draws from her arm. But it must be removed, and YES we are keeping it. (gross I know, but it has been a huge part of treatment the last 2 years).

She loves school and struggles some, we don't know whether it is from being young or from chemo, problably will never know, but oh well we keep working with her.

Rachel is doing good and it using the potty chair for everything, whohoo, ok we do pay her to poop in it. She has not caught on that it is the same pennies or that we owe her yet. She is still a little petite thing and loves keeping up with Alexis.

Trevor is almost 18 months old and into everything. He is starting to say more and more. He is a little stinker.

I am doing well. Recovering. Not on pain killers anymore, still taking Advil/Tylenol as needed. I am just sore. WE will see how next week goes as my Mom heads home early Tuesday and I will have to start lifting, cleaning, cooking, well everything again.

Thanks agian for checking in on us. It really does help knowing that we have not been forgotten yet. Even though Alexis is OT we still worry.

Karen



Jan 8th (I think I deldeted before I looked)

First a very belated Happy New Year. this is going to be a short update. Alexis is doing well and loving being OT. We went to Camp Snoopy on day one. I will try to add pictures soon. She is doing well. She loves the fact that she can eat whenever and whatever she wants.


Rachel is doing great potty training and has been pooping too, with a cost. She gets money everytime she poops in the potty.

Trevor is doing good.

I am recovering. I had surgery last Thursday and got home late afternoon Sat. I am doing good. My Mom is up until the 24th. I am not to lift anything. My doc told me 2 weeks, my discharge papers say 4 weeks. Mom leaves at just over 2, so could be interesting.

Thanks for checking in on us. Like I said I will try to add photos of our camp snoopy trip soon.

HUGS and God Bless in this New Year.

Karen



Monday, December 26, 2005 8:52 PM CST


The butterfly represnts the life cycle of a child with cancer. From a caterpillar, to a cocoon, this is while they are going thru treatment. When done they come out all new as a butterfly. Alexis is a new butterfly, and oh what a beautiful one she is.


Well Alexis is officially OT (off therapy). She took her last dose of chemo about a half hour ago. She made a face, as it also had her "icky" antibiotic. I can not believe that she is done.

The kids all had a great Christmas. The, of course, got way to much, but.......

Alexis is doing good, getting a cold, but tis the season for that too.

Rachel has had a fever today. We hope she is better soon, as we are to go to Camp Snoopy either tomorrow or Wed. If all else fails one of us will take Alexis and the other stay home.

Trevor is either getting a cold or more teeth.

I still have my cough, even after antibiotics, so I will call the Doc again either tomorrow or Wed. I have 10 days to get better.

Jeff is off all this week. He has a virus on his computer so he is deleting eveything and then has to load everything back on.

Anyway, she is OT. I have so many emotions. I am no Kristie, so No 12 days til done or OT analagies but....... SHE IS DONE. Let the new roller coaster leave the stage now. WooooHOOOOO

Please keep praying that she does well, and sign the guestbook.


Here are some pictures of tonights event.



Before the last dose.





Open Wide






What a face. Last time.







Empty spoon. Way to go.





Happy arms, flailing....




Thumbs up.








Thanks for checking in on us.


FUN IN THE SNOW

Friday, December 20, 2005

Last night Alexis took her last dose of steroids. I can not believe that she only has 6 more days of chemo. Not that I don't have fears of relapse, because I do. How can you not, but for Alexis the worst is over, chemo wise anyway.
She can not wait for Christmas and then the next day her last dose of chemo. We are going to Camp Snoopy either Tuesday or Wednesday to celebrate. It should be a lot of fun despite the after Christmas crowds.

Please sign the guestbook, it really does help, even though we are almost done.....

Prayers to all who need them, especially my ALL kids friends.
HUGS and Merry Christmas.










Karen


Friday, December 17, 2005

Hi everyone. Alexis had her last dose of Vincristine through her port on Thursday. I still can not believe that she is almost done with treatment. Her counts were good. If she would not have been so close to being done they would have increased her chemo to 75 percent, but decided to leave her where it is, at 50 percent. She will have her port removed before the end of March next year. She will continue on her Bactrum for 3 months. We are going to keep her on the Advair for now as it seems to be helping. She will go back to Dr. Shreeves, the pulmanologist in Feb. She is on her last round of steroids right now, oh joy, yeah oh JOY. So just what, 9 days left. I think she thinks all of her meds will end, but not so. Like I said she will stay on her antibiotic, Mon, and Tues. and her Advair 2 times a day, she has mild Asthma, we may try to take her off of the meds sometime next year to see if her cough is gone since she won't be on chemo. Time will tell what will happen.

So she is doing good and can not wait until she is done and for Christmas.
Rachel is doing really good using the potty chair. Yeah.
Trevor is doing good too.

Please pray for my on line computer friends some are having such a rough time now.

God Bless,
Karen


Friday, December 9, 2005

Things are going good. Rachel has been in paties (off and on) the last 2 days and doing ok. Keep her in diapers at night, nap time and if we leave the house.

Yep Alexis lost her first tooth today. It has been loose for a looonnnngggg time. I finally talked her in to letting me work on it, as the new one is coming in behind it and the gum area was looking bad. Well we did it. It is out and she is soooooo excited.

I am going to TRY to add pictures again. It has been awhile since I did it, so it may take several tries or hours. Haha No really. I may need to resize too. So Please be patient.




no tooth






Making Christmas cookies, NO making DINO cookies.

Note the tackle box, it is full of meds and there are meds on top of it, but not much longer. : )









Trevor 15 months







Thanks for checking in on us.
Karen




Wednesday, November 30, 2005


Hi well Alexis' counts look good. Her ANC was over 2500 so they upped her chemo to 50 percent.

We saw Dr. Shreeves a pulmanologist. Alexis did great with her x ray and PFT test. She passed her PFT test, but she hyper inflates her lungs (on x ray) which is a sign of asthma. We talked to the Dr. a long time and he listened to her lungs really well and said he heard something. After talking we decided to put her on Advair twice a day to see if it will help with her cough. We are still not completely convinced that her cough is not from her sinuses, but ..... with the sound of her lungs and her x ray we thought we would try the Advair. If it helps we will leave her on it until sometime next year, then take her off and see what happens. The cough can be from a combo of chemo, sinuses and slight asthma. Lots of kids get this cough on chemo and after about 6 months to a year it goes away... OR if we ever get her sinuses clear it could go away or any of the aboove.

She is doing good overall though. Just 26 days to go. NOt that I will stop worring, cause I won't. She will be watched closely for the next 5 years, yes 5 for relapse. We will have to watch for a secondary cancer and learning probblems that the chemo might have caused.

Please pray for my on line friends there have been way to many relapses and posible relapses on list lately.

Karen

Tuesday, November 22, 2005 12:55 AM CST

HI sorry is has been so long.

Alexis went in for her routine apt. last week. Her ANC was up to 1375, I did give her her steroid that morning. Some say not to give it until after counts as the steroids raise counts. Anyway she is on 25 percent chemo again and back on Omnicef. She still has that bad cough but what else is new right.

She goes back for counts next Tuesday along with going to yet another specialist. This time a pulmanolgist on that same day. She will get a chest x ray and a PFT and then the exam. WE will see what happens.

Trevor and Rachel had apts. today. Trevor went in for his 15 month check up. He wts. 26.1 pounds and got 3 shots and his last flu shot. ONe was the chicken pox which makes me nervours with Alexis, but they gave it anyway.

Rachel was in for her 3 year (Dec 7th) she wts. 27.4 pounds. She has been complaining of stomach aches and has had nasty very smelly poops since Sat. Which they think is from the rotovirus and just has to run it's course. I asked about her hearing as she does not like the shower running to my hair dryer. She covers her ears and says it is to loud, but at times has trouble hearing the TV. Her ears don't hurt. Her tempanogram was flat but her ear drums look normal so we need to take her to a ENT.

We are lookking forward to Thanksgiving with the Thompson's this year, but we will miss the Pederson's. We have a tradition with the Thopmson's that we get together either Thanksgiving day or that weekend, depending on what their families are doing.

I do have a heavy heart, first my Mom called and my Aunt Audrey passed away last night, services will be either Friday or Saturday. Then there is my on line support group. There have been many relapses and possible relapses this last few weeks. It is very scarry. Alexis is alsmost done, but the worring will never stop. Just 35 more days.

Thanks for checking in on us.

God Bless and Happy Thanksgiving.

Karen

Wed. November 9, 2005

Well we made it through the interview. I was sooooooo nervous. All day long Alexis has told me she is a brave girl. She was, even though she hid behind her blanket the whole time. She was to sit next to me and with 8 secs to air she wanted on my lap.

I do have one regret though. I wish I would have stated at the end when they said that 75 percent survive is good. Yes it is, but someone is in that other 25 percent and that is too high. What about those families. Dr. Messinger told me that Alexis has about a 90 to 95 percent rate, but what about that other 5-10 percent. Soneone has to be there and for them the odds are not good enough. So I don't think very good on my feet, but that is the only thing with the interview I wish I would of said. Darn live interviews. But at least the word is out about kids getting cancer.

Not only is it a rollercoaster ride that NEVER STOPS, when you take away chemo it is like taking away your security blanket. In heavy treatment you are at the clinic a lot and though it is hard, you know they are being taken care of, then LTM (long term maintance) comes and they take away part of that blanket then OFF CHEMO and "what you are taking away our blanket" and it scares you to death. No chemo means "it" could come back. Yes they have clinic still, but no chemo and for the next 5 years, yes 5 you are scared. Every bruise, fever, sore joint or anything makes you think "it" could be back.

So for the child "normal" might come back but not for us parents. We will always worry about "it".

Karen




Tuesday, November 8, 2005

Not much new, but if you want a good read and know how us parents feel go to Kendrie's site NOV 7th Journal. Kendrie's site

We will see if my linking skills work. I had the pleasure of meeting them on Alexis' MAW to Florida. What a great family.

K


Friday, November 4, 2005

Well we will try this agian, I just lost my last entry for some odd resaon it showed up then was gone. HMMM

Hallowee was a day of mixed feelings. That night we went trick or treating and it was fun. What a difference a year makes. Last year Alexis was tired. I pulled the wagon and she walked from the wagon to the door and back to the wagon. WE only went to about 10 houses and then she was to tired and wanted to go home. This year we walked to the same 10 houses, then took Rachel home as she was cold. Then Alexis and I kept going. We went around the block and walked the whole time. It was great. The neatest thing was around 7 we looked up and the stars and saw a shooting star. It was beautiful. I thought of Heidi. Alexis made a wish and was thrilled, as we had talked about how rare and special shooting stars are. It was soooooo cool.


Heidi's visitation and funeral were beautiful. I can not even imagine what Mike and the kids are going through, but I will continue to pray for them.


Alexis had clinic yesterday. YEP you guesed it she is OFF chemo yet again. At her last apt. we took her off the omnicef which she had been on for 4 months. I knew that her cough had gotten worse, but not that bad. Her ANC went from over 2500 2 weeks ago (not even on full chemo) to under 500 in 2 weeks. So off chemo again. UGHHHHHHHH. We put her on a different anitbiotic for the next 2 weeks. They do not want to see her until her next routine apt. in 2 weeks. We are going to try to have her see a lung specialist about the cough. She has had it for over a year now. So we are going to have them look at her and rule out asthma and such. We are also going to talk to a diatitcian (sp) about her wt. She has gained more and we want to get the jump on it. I have my own wt issues and am on the verge of being a full diabetic so we are just going to talk to them.

So here we are on no chemo again. Most people don't undestand that it is NOT GOOD to be off. We only have about 2 months to kill off any hidden cancer cells and she will be off chemo and then low chemo for most if not all of that. Please pray for God to find all of those cells and get them out of her. Pray for my on line friends too and my sister in law Pam and Aunt Audrey and Heidi's family.

Thanks for checking in.

Karen


Friday, October 31, 2005

Halloween has such mixed emotions for me, as Alexis was dx 2 years ago today. I am doing ok with it, but....

This morning I learned my friend Heidi is in Heaven this Halloween. She passed on at 2:05 this morning. She was a loving wife, mother, daughter, swim coach and friend. She was a inspiration to so many and will be missed. Please pray for all of them. Mike, Shane (17), Colton (13), and Caley (11).

Please pray for all of those suffering that they may find peace.

K




Friday, October 28, 2005


Hi Alexis is doing well. Has her cough, but what else is new. She goes in next Thursday for counts as she is not yet on full chemo.

Halloween is fast aproaching. I have such mixed feelings. I am doing much, MUCH better than last year. It will mark 2 years of this .... She luckily does not remember much from the first year or so, which is great, but I do. I have looked back at pictures and it is amazing how much she has changed. She now has hair and has gained 10 pounds. Last year she was bald and only about 40 pounds, which for Alexis is low. She has her round face back. She is soooooooooooooooo excited to go trick or treating. She is going to be a black cat. So I will try not to dwell on the fact that Halloween is her dx date, but a day to go trick or treating and eat candy. I can not believe that she will be done with all of her chemo on Dec. 26th talk about a Christmas present. She only has 2 rounds of IV chemo left (Vincristine), but will take oral chemo until the 26th.

I do ask for prayers for my sister-in-law Pam whose lymphoma is back and she started treatment today. Also for all of my on line support group friends, many are struggling. Also for Heidi and her family. She is in hospice care and her family has told her it is ok to go. She is still fighting, but close to going to Heaven, so please keep all of them in your prayers.


As for me I had a great time in Vegas, in case you were wondering. I did get motion sick, at the Top of the World restraunt that goes around in the tower at the stratosphere. I felt bad the day before. I did a water massage and almost passed out when I got out. Ok the drink I had prior might of had somehting to do with it, but not the next day in the tower. Never sit backwards in a revolving resturant if you get motion sick. NOT GOOD> WE saw the show "O" it was great. I met a friend that I have not seen in 8 years there, we do not want to wait another 8 years again. She now lives in Oregon and we have know each other since Kindergarten.


Well I have to get kids changed so we can go to Cindi's tonight for Chineese.

OHOHOH the KARE 11 thing. I will let you know when we have a official date, but it appears it might be the week of the 7th. I will let you all know for sure, when I do.

Thanks for checking in.

Karen

Tuesday, October 18, 2005 2:13 PM CDT

Well Alexis had her LAST SPINAL TAP today. As ususal she did great. She is fighting a cold, but otherwise doing good. She will go back in two weeks for a count check as she is not on 100 percent chemo yet. We met a new ONC today, Dr. Chu. She did a great job with Alexis spinal. Alexis was more upset about her flu shot than her spinal. She wants another spinal, and was upset when I told her this was her last one.

Also KARE 11 was there taping footage of her. We have agreed to do a interview to bring awareness to childhood cancer. I initally wanted it done in September, but better late than never. We will do a live interview with Dr. Messinger sometime soon. I will let you all know when.

I leave for Vegas tomorrow. Please pray for my safe travel and for Jeff and the kids. Alexis has a cold along with Trevor and she started steroids today. Boy did I time this right or what. At least Jeff does not have to get her on the bus for school.

Also please pray for Heidi, her liver is failing and it is just a matter of time. Also pray for her family.

K

I just recieved a call and Heidi is in the hospital. I was able to visit her last Friday. It was a nice visit. I am glad that I did not procrastinate. Please pray for her family. She has Mike, her husband, and 3 children between the ages of 17 and 12.
k

Friday, October 14, 2005 10:28 PM CDT

Hi everyone, I went to see Heidi today. She is very tired but doing good considering. Please pray for her and her family.

I told them that Alexis was doing good. I may have spoke a little to soon. She has started coughing more than normal and her nose has been running. She told me tonight that her stomach was upset and took a Zofran. First one in a long time. Then she said she was hot and cold, NO fever though. I hope she is doing better tomorrow. Her cough sounds deep. NOT good, partialy selfish as I am to go out of town next week. I would feel so guilty leaving her sick. Please pray that she gets feeling better and the rest of us don't get it.

K

Monday, October 10, 2005

Alexis had a field trip to the fire station today. I got to go along. It was a lot of fun. She is doing well.

My friend Heidi is in need of prayers. He liver is failing due to the cancer. Please pray for her and her family during this difficult time. They have told the children it is just a matter of time, but please pray for a miracle here on Earth.


Please take a few to sign the guestbook,

Karen


Friday, October 7, 2005


Hi can you believe it is Oct. The leaves are changing and it is getting cool. I want to say cold, but I know Winter is on its way so it is only getting cool. Alexis had clinic yesterday. It was just a count check. Things are looking good. Her ANC was 2640 so they increased her 6MP a little. She is on abut 75 percent of chemo right now. She goes in on the 18 th for her LAST spinal tap. Just a few months left until the chemo is done. That does not mean that the worrying stops. With her type of leukekmia, Pre B ALL, the chance of relpase is greater while off treatment than while on. She is doing good now and acting like a typical 5 year old.

Rachel and Trevor are also doing good. Trevor weighs about as much as Rachel. So she better not pick on him to much or else it won't be long and he will take her.
Rachel is having a hard time since we are out of choclolate. She is my chocoholic at age 2 1/2. She keeps telling me that we need to buy some. I will once we get to the store.

My parents will be up next weekend for a visit. They will arrive either Thurs (mom's chioce) or Friday (dad's) and leave on Monday. Then Tuesday is clinic with spinal tap and on Wed. I leave for Vegas.

Halloween is just a few short weeks away. The girls are looking forward to trick or treating. For me it is mixed emotions, but nothing like the last two. Two years ago we were at Children's and Alexis was getting her first bone marrow biopsy. We were told that she has Leukemia. Last year was the 1st anniversary after diagnosis. I am not dreading it this year like last. But I am sure as it gets closer I will.

Please continue to pray for my on line friends. Several children have lost their battle with Childhood cancer in the last week. Also pray for my Aunt, who is now in a nursing home but doing ok and Heidi. Also my sister-in-law's Lymphoma has returned and we are waiting to see how advanced it is to determine which treatment she will undergo.

Thanks for checking in.
Karen

Thursday, September 29, 2005 9:47 AM CDT

Can you believe that it is the end of September already. Boy does time fly. Alexis still loves school, well most days. Her favorite day is Friday. That is a more relaxed day at school. They have recess on Friday and it is also sharing day. Yes she only gets recess on Fridays in her Kindergarten class. She goes half days.

She is doing good health wise. Knock on wood. She has her last spinal tap on the 18th of Oct. and just 3 doses of Vincristine left. Wow it is amazing that she is almost done. She still gets chemo at home everynight, but her last dose of that will be Dec. 26th.

The KARE 11 thing is coming along. It sounds like maybe the end of Oct. They are thinking about coming to her spinal tap on the 18th to video some footage to use. I just emailed them, as I will be out of town the 19-23rd. (going to Vegas, no kids, no husband) How lucky am I that my husband is letting me go to Vegas without him. When I get more info about it I will let all of you know.

Please continue to pray for Alexis. Even though she is almost done with treatment and things are going well there is always a chance that she could relapse. Also the last I heard about Heidi was she was back at Mayo. Not good news. I also just found out that my sister-in-law, Pam's lymphoma is back. So she is undergoing tests to see what they will do, radiation or radiation and chemo or what.

Thanks for checking in.

I don't know why the guestbook looks like it does so I am not sure I will be able to fix it. But please take a few to sign in it really does help.

Karen

Monday, September 26, 2005 10:50 AM CDT

Hi well Alexis is still doing well.
I found out that Heidi is in ICU at North Memorial. PLease pray for her and her family.

Sorry about the guesbook. At least on my computer it is not showing up how it used too. NOt sure why. I you know let me so I can fix it.

Thanks,
K



Friday, September 23, 2005


HI Well we survived the storms on Wed. We have some minor damage to the siding and a few shingles were bent backwards and we will have to be replacing some ripped screens, but it could have been sooooooooooooo much worse. We had hail. Jeff was in a airplane during this time, so I was worried about that. His plane circled Wisconsin for a hour waiting for the storm to pass, but he made it home safe.

Alexis had her routine apt. yesterday. Her counts have came back up so Dr. Messinger increased her Methotrexate a little and left her 6mp the same. She is to go back in 2 weeks for another count check. I can not believe that on the 18th of Oct is her LAST spinal tap. Wow time has flown by. She only has 3 rounds of Vincristine left. I am going to take the camcorder the next few apts.

Dr. M says she looks good. She still has that sinus cough and will continue the Omnicef for another month and reivaluate if she needs it.

Alexis loves school so far, but today she told me she did not like the bus ride. They have assigned seats and I think she wants to sit alone. She sits with 2 other kids. I asked if they were mean or teased her and she said no. So I think it is a want to sit alone thing, but I will see how it goes over the next few weeks.

In just 4 weeks I head to Vegas for a long weekend. I can not wait. I am meeting a friend there that I have not seen in about 8 years. It should be fun.

Thanks for checking in on Alexis. Please continue to pray for Heidi, my Aunt Audrey and my online friends.

Karen

Ssturday, September 17, 2005

Hi not much new... Alexis is doing ok, the usual stuff. Jeff will be back on Wed. his trip is going well so far. He is in London today, then off to France tomorrow.

Please continue to pray for Heidi, my Aunt Audrey, and my on line support group. So many are struggling right now. Please say special prayers for baby Donovan as he has not yet recieved remission after a relapse.

OK now to vent a little. October is just around the corner and already all you hear about is Breast Cancer Awareness. Don't get me wrong I know how important it is. I am a mammographer, but.... NOT ONE MENTION ON CHILDHOOD CANCER IN SEPTEMBER. Did you know that September is Childhood Cancer Awareness Month??? Most don't. Here are some stats on Childhood Cancer.

. Each day, 46 children are diagnosed with cancer.

. One in 330 children will develop cancer by age 20.

. The incidence of cancer among children is increasing. Each school day, enough children are diagnosed with childhood cancer to empty two classrooms!(*NCCF)

. Although cure rates are steadily increasing, 35 percent of children will die.

. Cancer remains the number one disease killer of children; more than
genetic anomalies, cystic fibrosis, and AIDS combined.

· Cancer is the #1 disease related killer of children under the age
of 14 years next to accidents.

· Causes: Largely unknown. Currently, there are no established guidelines for childhood cancer prevention.

· Childhood cancers are mostly those of the white blood cells (leukemia's), brain, bone, the lymphatic system and tumors of the muscles,kidneys and nervous system. Each of these behaves differently. Cancers in very young children are highly aggressive and behave unlike malignant disease seen at other times of life. The median age for childhood cancer is six. Children frequently have a more advanced stage of cancer when they are first diagnosed. 80f children show that cancer has spread to distant sites in the body when the disease is first diagnosed.

· Combined, the cancers of children, adolescents and young adults to
age 20 are the sixth most common cancer in the U.S.








Sunday, September 11, 2005


Good Early Morning. It is about 4:30 AM. Trevor is up after falling asleep at 5:30 yesterday. So I am up too, UGH. I am asking for prayers. First for Jeff to have safe travel, as he heads to England and France for work today. Also that things go well here at home.
I also found out that my Aunt Audrey is not good. She has cancer that has spred to her brain. In the last week she has went down hill and is now in a nursing home on constant pain meds. They have given her about 2 weeks.

Please also to continue to pray for Heidi and all of those affect by Katrina. I can not imagine what they are going through and then to have a child or family member with health issues. Many of the children being treated for cancer have been taken in by surrounding towns and states. I know that St. Jude, hospitals in Baton Rouge, Shreveport and many in Texas are treating children from the region.

Karen


Thursday, September 8, 2005

Hi well it was a long afternoon today. Alexis had clinic, for counts. They were sooooooooo busy. We waited a half hour to be roomed. OK I know that if this was a reg. clinic a half hour would be nothing, but here it is usually not that long. After we were roomed it was another half our before she was accessed thru her port for labs. Linda was so busy running between patients. Part of her labs came back so she asked if we could wait, plus I had asked a few questions for a doc. Alexis has been having some RUQ pain on occassion. Dr. Messinger came in and looked her over good and said to keep a eye on her. Plus some of her liver test have been abnormal they think she has Gilbert Syndrome. It could be gallbladder, but not sure as her exam was fine. I also asked about her wt. she has gained 3 lbs in the last 2 weeks and about 5-7 lbs in the last 6 or so. He said to have eat healthy. She is our fruit eater, rarely eats sweets (unlike her mom) but does like chips. He asked if she was constipated, nope fine there. He said that some kids will eat a lot for awhile then slow down or grow. She is not on steroids either. So we will see what happens in the next 2 weeks. Her face has gotten so round and she is alreday in size 6 pants. I can not imagine doing 7 as the 6's are to long. We will see.

AS for her counts. They have dropped again ANC of 666. (I do not like that number) anyway they are taking her down to 50 percent chemo. If she would have been below 500 she would be off. So we will she what happens there too.

Thanks for checking in on her.

NO news on the KARE 11 thing yet. I will emai them again middle of next week if I have not heard anything.







Tuesday Sept.6, 2005


Hi wow does time fly. Alexis had her first day of Kindergarten last Friday. I am not real sure what she thinks. Friday she liked it, but asked the teacher when she can go home. She goes half days. Then all weekend asked when can she go to K again. Today she said it was ok, but a lot of work. I tried to get her to tell me more, but she would not. She rides the bus to school. She has a great teacher, so far. I think that it will be a good mix. Mrs. Edgar has talked to us about Alexis and we gave her a letter to give out. I think that it will be a good school year, maybe a lot of work too.




getting off the bus the first day of Kindergarten
She is doing good other than the sinus cough. She goes in on Thursday for counts.

Rachel and Trevor are doing good. Trevor now has 4 teeth. Other than school ii is pretty quiet around here.

Please pray for alll of those affected by the Hurricane.
Also pray for Heidi, my Aunt Audrey and all of my on line friends too. Some of who are affected by the hurricane and have lost so much.

I will try to add pictures of the first day of school. I have to download them and resize them yet.

Take care and God Bless,
Karen





Alexis waiting for the bus on the first day of school.

Sunday, August 28, 2005

Jeff took Alexis to Valleyfair on Friday. They went with a friend of Jeff's from work and his family. They had a lot of fun. Alexis even rode some rides. She even tried out the Mild Thing. She made it one time around,usually it is 3, but she gave a thumbs down and got off. They ask after every ride if anyone wants off.
She also "won" a prize playing a game. Jeff and Alexis were the only ones playing. They did not get home until almost 9.

Saturday we went that evening to Michelle's for a party. Alexis was out of sync. She did not want to play, just go home. We did not stay very long, maybe a hour and a half is all. She came home and went to bed.
Today she was again out of sorts. She was very moody, we thought is was her steroids. She is on them right now, but she has complained of a headache, then a stomach ache. Finally at 6 she asked if I would go lay down with her. So I am in bed with her and she is out cold. It is only 7. She still needs her Omnicef and chemo, so that will be fun. If she feels like this tomorrow I will call the clinic. They told me they thought her counts were on the way down and to keep a eye on her. I hope that she is just tired, but....she is just out of sorts. This is just what we need with the first day of school this week.

Karen







Taken in Aug. 2005 Yes Trevor is eating a spider, good thing it is only plastic.

THANKS KRISTIE, I DID IT. WHOO HOO.

Thursday, August 25, 2005

Thanks for stopping by. Alexis did ok at the b day party. She did not ride the pony. Told me she was to nervous and that is ok. She did like to play a few of the games. She said she did not like the running ones and she does not run fast, but did like the bull rope game.



She had 2 apts. today. First she had her routine Onc. apt. It went ok. She has been complaining of ankle pain, but they thought it was ok. Her calfs are not tight so no PT, but she has NO reflexes in her legs at all. He said she looked good. Her counts came back, they knew that her WBC was low, so they were waiting on her ANC. It was down to 1066. NOt bad, but not good considering where she had been, and knowing that her counts drop pretty fast with anything. So she will go back in 2 weeks for a count check. One of her liver tests came back high again so there are going to run some hepatitis tests just to make sure. And then said not to worry, yeah right like that will happen.

From there down to the pharmacy. Where we wait and wait and wait. Hey we were only there about 30 min today I think that is a record.

Then OFF to Noah's (before the next apt) It was great to get to spend some time with them, although it was not near long enough, about 45 min was all. I consider Lori a good friend even though we have not know each other long or see each other near enough. Thanks for letting us drop by and see you. You are always great to talk to.

Then off to the ENT apt. It went ok. He talked about doing surgery and then decided to wait. I had already talked to Dr. Messinger about that and did not want urgery unless the ENT, ONC and us all agreed it was in Alexis' best interest. So for now we are going to continue with the profalatic antibiotics, increase her nasal steroid to 2 times a day and yes do the nose rinse twice a day too. yuck.

We made it home by about 4:30 after leaving at 8:15 not too bad at all. Thanks Vera. Don't be mad at us for the gift cert. we owe you so much more than we could ever repay.

Well supper is on the table.

Please continue to pray for my Aunt Audrey, Warren's dad, my on line suppport group and Heidi who is back at Mayo again. Her sacrum tumor has grown again and is causing great pain.

Karen


We all got our hair cut last week. I had noticed that Alexis' hair was thinning on top, but she still has a lot there. Our hair dresser noticed it too. She says she has thinned a lot since last time and that her hair is a different texture again. I have told Alexis as so far she is ok with it.




Alexis and Rachel at Relay early Aug.









Alexis and Beth at Relay in Aug.





Could not leave Trevor out.




It may be fuzzy but I liked it anyway.

Sunday, Aug. 21 2005

It has been a busy week, with Rachel not feeling good. I think she is going to have my allergies. So we have been giving her meds. Trevor has a nasty nose, better today though. We were giving hime meds, now just tylenol. He is getting his top 4 teeth in. Alexis is doing well. Has a slight cough, what else is new. She goes in for her routine chemo apt on Thursday and also to the ENT that afternoon. Thanks Vera for the very long day.

Alexis has her 1st no parent birthday party today. AND it is a pony party. I will be nervous but also excited for her. I trust the person she will be with. It is a mother of a friend from school. We get together almost every week for them to play.

Jeff will be going to England and France for work next month. Please pray that he will have a safe trip.

Continue to pray for Heidi and her family and also my Aunt Audrey. And also my on line support group.

Cindi called and Warren is on his way to Arkansas. His dad is in the hospital please pray for his safe travel and his dad.

Thanks for stopping by. Please take a few to sign the guestbook, even if it's just Hi.

Karen








Monday, Aug. 15 2005


Wow we made it back from our weekend. It was a good time. Thanks Warren, Cindi and Dee for letting us invade. We made it up there on Friday around 5 ish. To be honest I cann't remember. We unpacked the van and just relaxed, then it happened. Trevor had a stinky. We wanted the cream for his butt, it was packed in the suitcase. I got the suitcase and opened it. "Jeff, where is it again" he loaded the suitcases. Jeff "it's in the big suitcase" Me "um the only thing in here are your clothes". Jeff " no the big one". Me " this IS the big one".. Jeff "no there should be a bigger one" Me to myself oh please don't tell me we left it. ME "there is no bigger one, we must have left it at home" After a brief discussion on who's fault it was.. Alexis goes "I think they are argueing". We decided that after Trevor's cake for his 1st birthday, that I would go to Wal-Mart and buy clothes. So off I went shopping to buy jammies, shorts, shirts, pants, socks, panties, toothbrushes, comb, and swimsuits for the weekend. Yes toothbrushes and stuff, we I mean Jeff packed everything child related in the suitcase for the kids. We had only the clothes on their backs and diapers and wipes, which did not go in the suitcase.
so that is day one. oh boy.

Sat. was better, but cold. I borrowed a sweatshirt from Cindi. Good thing I bought summer and warm clothes last night. I was up alot with Trevor, but this seems usual lately. Sat. we ate and Warren and Jeff went to work on the boat lift. They got it working, after a few trips to Fleet Farm, so that afternoon we went fishing. The girls liked it. Alexis held the pole a bit then said I will just watch the bobber. Rachel had us cast, Of course, then she would go "I got a big fish and reel it in." OK the line had just went in but she had fun reeling the line in. Every time she did the same thing, but she liked it. She also would say when it was a few feet from the boat, "there's the bobber". We caught a few small sunnies.

the rest of Sat. we relaxed, or Jeff and I thought we did. We tried to get the kids to bed that night. Trevor and Rachel were crying. Cindi was trying to ignore them but I knew what was to come. I waited a little while, even Cindi said we are going have to get them. I said Alexis won't last much longer, with 2 of the screaming, as it was no longer a cry, but full out screaming. Just as those words left my mouth, here comes Alexis she opens the door and says "I cann't take these KIDS anymore." We about lost it trying not to laugh. We got Trevor and Rachel and Alexis was out in 5 min. We were on the porch playing cards. A new game called "Bless your neighbor" previous know as "sh*t on your neighbor". It was cold, we were all in sweatshirts or coats, and before we stopped I had a blanket and coat too. Did I mention the only table they had big enough for all of us to play cards was on the deck. It WAS fun though.

Sunday Alexis had begged for Hardee's so off we went. Cindi, the non morning person, took a break from us and had some time for devotion and herself. We went swimming, if you can call it that. We we there all of 20 min. maybe. The girls got in the lake, with life jackets, but the water was cold and Alexis was scared. We did the paddle boat. OK it took longer to get all of us in than the ride we did, but oh well. We then collect MORE rocks. Yeah we got rocks everyday sometimes twice a day. That I think will be Alexis' highlight. We went fishing again on the boat. Again the girls decided not to do much. Then it started Rachel wanted to go back to Cindi's and Alexis want to just go home. They both finally fell asleep in the boat, so we fish ahile longer, then headed in. We packed and got ready to leave. Alexis then said " when are we going to relax" or something like that. we said we have been. She did not think it was very relaxing. I guess when you are used to watching movies and cartoons, and then go fishing and get rocks, it might not be concidered relaxing. WE had a great time, and who knows Warren and Cindi might forget and invite us back sometime. Poor Warren lets go fishing and then I want to go home and Cindi here watch my son over and over. I am sorry for that even though you said you wanted too..

So it was a good time.

I am also excited. I was hoping to go out of town with Michelle, but she was waiting to see about whether or not she could go. Play might be that weekend. I decided not to let the opperturnity go by, as Jeff does not want me to go that much, so I am going with a friend that I have not seen in Oh 7-9 years. We are meeting up in Vegas. I am so excited to see her. I will tell Michelle today. I hope she is not mad and understands.

Alexis is doing ok, but was a bit pale yesterday. NOt to bad today. Trevor and Alexis have reg. doctor apts. tomorrow. If she still looks pale I will have them do a CBC.

well it is after 8 and we have a play date at 9, so I better get busy. Only one dressed so far and it's not me.

Thanks for checking in.

Karen



Friday, Aug. 12 2005

Happy birthday Trevor. Wow one year old.

Well it is early here. I have been up with Trevor since 4:30 ugh. He decided it was time to get up. He was already in our bed, thanks Jeff. Alexis was in our bed and at some point, yep there was Rachel. Don't know what time she came in she went to Jeff's side atleast, but that did not last as when Trevor woke up Jeff moved her to the middle, which means she ended up on my side. So when Trevor decided not to go back to sleep, but Jeff did, that's right 4 of us on my side. NOT good. So Trevor and I got up. He has had a bath, thanks to a NASTY poop. He is teething. Right now he is playing and I am sure that he will go back to sleep just in time for the others to get up so I can not get more sleep. (yes I know the first sentence was a very long run on but hey I am not getting graded AM I???) but hey that is life with 3 kids 5 and under right. It does get better right. HA HA LOL.

We are off to the lake this weekend. Sure we decide to go and guess what the weather changes. We have been in the 90's, so sure now it is to be in the 70's and rainy. Oh well. So I am not sure we will even get in the lake, but it is a get away, and we will be there with Cindi and Warren. It should be a good time.

k




Thursday, Aug. 11 2005

UPDATE: ok thanks to Cindy C. we may have some luck with the KARE 11 thing. I have been emailing her and they might interview a family and a ONC from the clinic. I have said I would do the interview, and have contacted a friend to see if they would too. They are on vac. right now. I was at Children's today and talked to Dr. Messinger. He said he would be honored to do the interview. So it is back in KARE's hands, to see if they run with it. I hope they do. Thank you Cindy C. for all your help in getting this going over there.

As for Alexis she had her CT today. I went to talk to Dr. Messinger and he saw the CT and thought it was about that so we did discuss Alexis. He said no surgery unless he aproved it after a 3 way pow-wow, also no more CT's unless he aproved it, as she has had to many and it can cause cateracts. He did decide after looking at the films that we should fo profolatic antibiotics. So today we will start up with the Omnicef again. She just went off a 3 week course yesterday. She will agian take it daily for 42 days then he will drop it to about 4 times a week. It sounds like she will be on it until she is done with treatment. We discussed doing the bactrim (she does thes 2 times a week now), but it tastes terrible and can cause low counts, so we decided to stay with Omnicef, which tastes good. That is about it for now.

Please pray for Heide she was back down a Mayo with problems. She had a stent put in her liver as a bile duct was blocked. Did not say what was blocking it but...... Her tumor has grown in the last 3 weeks so they decided not to wait on chemo and so she started that. PRAY PRAY PRAY PRAY.

Thanks
K



Tuesday, August 9, 2005


HI everyone. Well Relay in Elk River was last Friday night. Jeff and the kids came along with Alyssa. Alyssa was a tremendous help with the kids. I held up fine, only fought back a few tears. Alexis was to shy to say her name and how long she had been a survivor so I did it for her. She then wanted bug spray so while holding a crying Rachel I ran back to the stroller to grab it while the survivor lap started. By the time I got back Beth had taken her hand and said let her do this. She walked the track with Beth, a friend of mine that I used to work with and a breast cancer survivor. I was so proud of her.

Jeff took the kids home around 9 and Alyssa and I stayed until about 11. If you have never been to a Relay you should go. Every one is a bit different, but you will be moved.

I decided to go home that weekend. I got all of one hour of sleep Friday thanks to Trevor. I was up before 5 to hit the road to Illinois. It took me about 7 hours to drive home. I did not go more than 5 miles over the speed limit, but only stopped twice and ate in the car. My cousins were having a suprise party for my Aunt Donna's 70th birthday. Since all of my cousins would be home, I decided to go. Seems like we only see each other at funerals now, so a celebration would be good. And it was. To say how long it had been, my cousin Helen thought I was kitchen help, until I hugged her. Had her thinking, then she reconized my voice. Ok I have gained wt, but .... Anyway, Mom and Dad were supprised too since I did not tell anyone I was coming back.

My dad had some family coming up from Kentucky, so we went out to eat with them for supper, then back to my Aunt's to visit. I was in bed by 10 and up just before to 7 the next morning to head back to Minnesota. Jeff and the kids did fine. So I may have to get away again soon. It was exhausting, but I am glad that I did it.

Alexis is doing good, darn cough might be returning, she is still on antibiotics for a day or two more. She has a CT this Thursday. We are headed to the Lake with Warren and Cindi this weekend. It should be a good relaxing time. I am looking forward to it. It is up by Alexandria.

Please continue to pray for Heidi she is to start chemo back up on the 17th. Also for my Aunt who is very tired and getting weaker. Also all of my computer friends. They are a great source of support. They truely understand the worries we have. I have learned a great deal from them.

Hey if anyone has any ideas. I have contacted KARE 11 to let them know that September is Childhood Cancer Awareness Month. I am to let them know of any events scheduled. The sad part is I do not know of any in our area. I hope that they do something with it. It sounded like they would cover any event, but not sure if they will do anything else. Cindy gave me a idea that I told them about, but nothing so far. I may ask one of the docs if they would be interested in talking to them and see what happens. (this is what Cindy suggested) Maybe if I get a doc to commit they would do it. I hope I get this to work, but time will tell. I stepped way out of my comfort zone on this one.

Thanks for the continued support and prayers. Please take a few to sign the guestbook it really does help and when Alexis is older I plan on showing it to her.

God Bless,

Karen

Friday, August 5, 2005 10:18 AM CDT

No new news today. Alexis is doing good. She has her CT next week.

Rachel has went potty in the toilet a few times. yeah.

Trevor is teething and is a full time walker, now to conquer going DOWN the steps.

Relay is tonight. We are all going. It should be a good time and the weather is going to be GREAT.

I will try to update early next week. I may go out of town this weekend. My aunt is having a surprise b day party and I will have cousins in from all over. I usually only see themat funerals now so a b day party would be nice. To make the party I need to leave tomorrow morning by 4:30 am. So we will see.

Keep those prayers coming for Alexis, and our friend Heidi, my Aunt Audrey, and my computer friends.

thanks,

Karen

Thursday, July 28, 2005 2:54 PM CDT

Hi everyone. Alexis had her 2nd to last spinal tap today. It went well. She is such a trouper, of course getting versed and morphine helps. Dr Smith saw her today, or as Alexis said "Dr. Silly". The spinal went well, except she has some fibrous tissue built up which makes it a little harder to get fluid. It is from all of her spinals, and nothing can be done, but hope the Doc has patience.

Her ANC is still a little higher than we would like, at 2052, seems we are never happy huh, either it is to low or too high, neither is good, as to low go off chemo, to high not enough chemo. They left her chemo as is for now. She is finally back to 100 percent of 6mp and methotrexate. She also started her steroids today.

Her other labs looked ok, except one of her liver tests. He thinks she might have Gilbet's syndrome. They decided to run full liver function tests to make sure everything is ok. He said it is nothing to worry about, yeah right, but from what he told me and what I have googled, it is nothing major, just a bilirubin thing, but I still worry.

She still has a slight cough, she does not cough much but when she does it sounds bad. We will do a CT in a few more weeks. Then see what happens.

I have bad news about Heidi, she is back a Mayo today. She is now having pain in her mid/upper back area. This is new so she went back down. She just received bad news on Monday that the experimental chemo she was on did not work and the tumors have grown. She was to be off chemo for 4 weeks then start yet another new one. It will now all depend on what happens at Mayo. PLEASE, PLEASE PRAY FOR HER COMPLETE HEALING AND PAIN RELIEF.

Also please pray for my computer friends and my Aunt.

Well the girls are fighting so I have to go.

Thank you and God Bless,

Karen

Tuesday July 26, 2005 5:34 PM CDT

Hi everyone, Just a quick update on my friend Heidi. Her tumors are continueing to grow despite the chemo and radiation. She is in a lot of pain, but her spirt is NOT broken. They are going to try yet another experimental chemo, but she has to be off all chemo for 4 weeks first. Here is her site www.caringbridge.org/mn/heidioquist

Please pray for her complete healing.

Also pray for my on line support group friends (computer friends) many are struggling right now, with side affects from the chemo, relapses, relapse scares and other complications.
Thank you.

k



Sunday July 24

Hi well a quick Relay note. I will be trying to get all of the donations and luminary bags by next Tuesday the 2nd of Aug. this way it will be deposited into the bank and not at the track and also so we can prep the luminaries for the track. IF you can not get me the donation by then that's ok I can take them until the end of Aug.


Kids are all doing well. I went out with Michelle Sat. night. It was so much fun. WE went to Bennihana's then shopping and to see the movie MR & MRS. Smith.

Hey if anyone knows how to get rid of a bedroom set, kitchen table and mattress let me know. I have called Goodwill and depending on who you talk to depends on if they will take them or not. We will call again this week, we would hate to borrow a truck and then not be able to get rid of it. (if Alexis knew I said hate, I would be in trouble, as we do not use that word) If I can get rid of them without putting a add in the paper I can get new ones. But Jeff will not even consider new ones unless I can dispose of the old, I told him give me a match. HAHA Update, I have our garbage company coming on Mon to pick up the matress and a old screen door. I called Goodwill and they said they would take the rest, so now to find what we want.

Thanks for checking in on Alexis. She has a spinal this Thursday. We need to leave at 6 am thanks VERA what a early morning. We can NEVER repay you for all that you have done for us, and THANK YOU just does not seem enough.

karen




Thursday, July 21, 2005



Hi again, well replay the previous journal entries about sinus problems and you will get todays. YES they are back again. Alexis saw her ENT on Tuesday and she is back on Omnicef. She will take it for 7 days while we waitfor a nose culture to come back. They want her on antiboitics for 3 weeks. Then repeat the CT and then????? It was mentioned about going back in (surgery). We will only do that after a confronce with us, ONC and the ENT to see what is in her best interest.

Alexis did so good when he took the culture. HE stuck a long thin Q-tip like thing up her nose a good 3 inches. ugh. So we will see what happens.



After that apt. off to the next one. She had a ONC apt next. She saw Dr. Slomiany. I explained the ENT thing and he said that was a good plan. He said she looked good, besides the sinus infection. Her counts were a little to good. Her ANC was almost 3000. They like it lower than 2000 and higher than 1000. So he increased her Methotrexate to 100 percent. She has not been a 100 percent of meds in 6 or more months. She goes back in next Thursday for her "routine" chemo and spinal tap. I can not believe that she only has 2 spinals left. It seems like we just started this journey, but here we are almost 2 years into it. Is it any easier somedays yes and others no. I can not tell you the fears I have with Dec. coming up. That is when she will go OT (off therapy). Chemo has been a security blanket for me. As long as she was on chemo and being seen every month I new she was being watched carefully for a relapse. Now no chemo (which fought the cancer) and clinic not as often. IF she relapses will I catch it in time, will they. Until she is 5 years yes 5 she has a chance to relapse after that she has the same chance of everyother child to get leukemia. Yes she could get a different cancer from all of the chemo she has taken or will she have any other problems from being given poison for over 2 years. (learning, eyesight, growth.....) I know of kids on my list that have relapsed after being OT for more than a year, so the fear will NEVER leave.

Anyway thanks for checking in on her, and me. Please continue to pray for my aunt and Heidi and all of my computer friends.

Relay if just a few more weeks away. Please help find a cure and donate. Thanks

Rachel has a cold/ cough with hives still off and on. Trevor is now a walker.

Jeff and I went to Valleyfair yesterday. Yes just the two of us. It was a lot of fun. We are showing our age though. We left by 4 yes 4. The lines so short, I mean 5 min or less. By 4 we had rode all we want to. We rode the High Roller (white one) 5-7 times and the Wild Thing 8- 10 times, plus others, seen the Imax movie NASCAR (loved it) I mean how many times can you ride the wild thing, if they would of had more than 2 coasters that we liked we would of stayed longer, but we left and went shopping. It helped that we had free tickets to get in too. We did not get to Cindi's until 9 still. Thanks Cindi and Warren and D.

Well Trevor is crying, supper is almost ready so I have to go.

Karen

Saturday, July 16, 2005 9:02 AM CDT

Last night was the Relay in Buffalo. Heidi had invited us to come and walk with her. Yesterday morning Heidi was still in the Hospital at Mayo. She managed to get released, get home and come to relay. She looked amazingly well, as usual. I can not imagine the pain both physically and emotionally that she is enduring. Her cancer has spread from her original site to her liver, lymph nodes and now bone. She always has a smile on her face and a positive attitude. I have such admiration for her and respect. She is so strong, couragous and has tremendous Faith. Heidi you go girl.

The Relay was great. Different from the one in Elk River that I will be in. (donations still being taken : ) ) Alexis did well despite the heat, there were several other kids there too. All of the survivors had teal shirts so they stood out. We left during the last survivor lap due to those darn mosquitoes. We had walked a survivor lap earlier and this was one while they lite the luminaries. The mosquitoes came out in force and Alexis wanted out of there. Remember to bring Deep wood OFF next time.

As for Alexis she is doing good. Her cough is back, ugh, but her sister is sick right now. Rachel has a bad cold so it makes sence that Alexis will get it too. Alexis goes to the ENT and ONC on Tuesday, so we will see.

Rachel has that bad cold so she is NEEEEEDYYYY. Well after running errands this morning I came back to RAchel itching. Looks like she has hives again. Good luck Vera and Cindi. (Vera here Tuesday and Cindi is to watch them on Wed. while Jeff and I go to Valleyfair.) She was a little stinker this week. She got mad a me, because I would not let her do something right that moment, I was on the phone setting up a play date. Anyway I thought she was going to give me a hug, should have know better, and the OUCH she bit me. I have bruise on the back of my thegh. HMMM maybe if I did not have so much to bite into she would not have got me so good.

Trevor has 2 teeth and is walking some. He has made it down the hallway, but crawls more than her walks still.

I hope that everyone is staying cool.

Please continue to pray.

Karen


OK I am totally pledgeurizing (SP) here. This is from my friend Noah's CB site. www.caringbridge.org/mn/noahhurley

I think Lori's speach is amazing. She spoke at the Blaine relay for life last night.

I must add that one of the "good" things about this is I have met some great people and call some of them friends. Lori is one of those friends. We never would have met if was not for this blasted cancer.

They had some opening words and introductions, a prayer and a pigeon release, and then it was our turn to tell our story. Joshua's role was to introduce the kids and their ages (and he told my age too, while he was at it), and he shared how he was glad that our family was doing as well as we were. Then Joshua handed the microphone to Noah. He said something to the effect of "Hi. I'm Noah. I'm 4. I have Leukemia. I have to go to the clinic a lot. I am brave and strong, and when I grow up, I am going to be an astronaut." People clapped for him, and then it was my turn... I was weepy, but I made it, and it felt really good to talk about what we've been through. I ended by having Becca read the poem she wrote for Noah last year. The group was so far away from us that it was hard to see or hear their reactions, but when we were through, the reception was really warm, and a lot of people asked Becca for a copy of her poem.

The funniest part of the evening happened next... After they introduced the Relay teams, they had the Survivor's Lap. One by one they named the survivors, who gathered on the track to walk together. I thought I would have to accompany Noah, but he had a few fellow Survivors offer to take him, and that was fine with him. I no sooner had taken my place back at the fence, when I noticed that Noah was in his starting position, you know, the position runners assume when they are ready for a race... Sure enough, it was time to start walking, but not for Noah! He ran the whole way! I believe the track is a quarter mile, and he ran his little heart out!! It was a good thing that my sister had the video camera, because I just cried (and then laughed, and then cried again). Seeing him run with all of the freedom and energy of a "normal" boy was amazing. It was as though he was saying to the world, I am gonna beat this Cancer! Of course, that's my idealistic adult perspective being projected onto my 4 year old. What Noah was really saying (with his hands in the air like a champion)was, "I won!! I won the race! I was faster than everybody!" Yes, Noah... you did win! :o)

Then it was time for the caregiver's lap, and Noah ran it again! On his way out, he asked every person he passed if they noticed how fast he was. I think he won everyone's heart.

He is a little achy and crabby today, but I'd do it all again! (and I'm sure he would too!)

By request, I am posting my "story" that I shared last night, below. For the full effect, put salt water in your eyes before you try to read it, so it's nice and blurry for you, too.
:o)

"The Ride"
Someone once asked me what my most life-altering experience was. My answer came quickly: I lost my mother to cancer when I was 9 years old, and my life turned upside down as I was forced to grow up overnight. My Mom was 34 when she died, and that always seemed really old to me… that is, until I turned 34. In fact, even 9 years old seemed old to me, until my own daughter, Becca, reached that critical, needy and still very young age.

Ironically, it was on her 9th birthday that I encountered my next most-life-altering experience, one that would prove as tumultuous as a rollercoaster ride. On December 10, 2003, on a whim, I brought my 2 year old, Noah, to my 9 year old’s annual physical. He had been coughing, and I just wanted to be sure it wasn’t serious. The physical was uneventful, except that our pediatrician kept staring at Noah. I asked him to listen to his cough, and this is what he said: “he sounds fine, but I don’t like the way he looks”. He sent Noah for some bloodwork, and at 10:00pm that night, we got a call that we were going to be seen the next morning at Children’s. My husband and I didn’t sleep well that night, but Noah and I were at the hospital bright and early for more tests. “Lori, your son has Leukemia, a cancer of the blood and bone marrow.”

I think it’s safe to say that everyone here has been affected by cancer. Do you remember how you felt when you first heard those words “So and so has cancer…”? Maybe it was your friend… or a family member or even you… How did you feel? I felt scared, shocked and profoundly, intensely sad as the rollercoaster started it’s creaky, unstable ascent up the long, long hill ahead, and I would have given anything to take my son’s place.

Even though many well-meaning people told me that Leukemia was a “good” cancer, somehow that didn’t cheer me up.
Even though our oncologist said there was a 75-80ure rate for children, I wasn’t comforted. That still means that 20-25on’t make it. If soccer or piano lessons or hockey had a 25ortality rate, would you sign up your child?

In spite of all of the supposed good news related to this diagnosis, I heard “Cancer”, and I thought of my mom, and at the time, all I could think of was that he would suffer and then die. Little did I know that my then 2 year old would soon become one of my greatest heroes…

We fastened our seatbelts and gritted our teeth and held on for dear life for this thrill ride. We’ve had ups and downs, and now, a year and a half later, I can even laugh at a good portion of our journey. For example, I marvel at how my husband and I learned to hear the grumble in Noah’s stomach, and could leap across the room with a vomit bin right before he projected breakfast and lunch all over the couch and how thankful I was for the times that Noah would throw up all over Mark, that we had blinds on our windows so that no one else could see 2 naked bald guys running frantically through our house.

I giggle at how Noah would insist the entire family gather around and sing in honor of his bowel movements. I grin in remembrance of our Dr. Seuss-like moments, trying to give Noah his prescriptions:
“Will you take this in the chair?”
“I will not take it in the chair; I saw you hide it in that pear. I will not eat that anywhere!”.
“Would you, could you in your bed?”
“I would not, could not in my bed. I will not eat it squished in bread. I will not let you give my med, and I will scream ‘til I turn red!”

Yes, we’ve had a surprising amount of laughs, but if you’ve lived with Cancer firsthand, you probably also understand the despair, loneliness, and the isolation this disease brings. I didn’t understand it when my mother was sick, but I sure know about it now. People I thought I could count on vanished, but then others came out of the woodwork and sustained us in ways we never could have imagined.

I became profoundly aware of other people in my shoes, many of whom in worse situations…and it was almost as though God had put them there to remind me to count my blessings and be thankful for what I had. I’d be lying if I suggested that it’s been easy or that I’ve been joyful during this entire time… But any time I have felt the urge to say “Why me?”, a little voice in my head has countered with “Why not me?” Why NOT me?

Because Noah’s hair has grown back, and because his personality has returned (which many of you have seen), many people assume he’s fine and out of danger. Even I feel that way sometimes…. But we’ve got the all day pass on this rollercoaster, so our ride is far from over. Leukemia is systemic and exists even in places that cannot be seen, so the treatment plan for a boy like Noah is just under 3 ½ years.

We have 2 more years ahead of us with daily oral chemo, monthly IV chemo and steroids and quarterly intrathecal chemo directly into his spine. This doesn’t include all of the other meds he takes to counteract the side effects of these meds… the bactrim, zofran, singulair, prevacid, miralax and zantac. But if you didn’t know that Noah had cancer, you might not know he was sick at all. Sometimes we even forget ourselves… that is, until something dreadful happens like Noah getting the chicken pox or RSV or a blood infection. And lest we should ever really forget what we’re going through, there are some tell-tale signs that serve as our reality check.

And we call these "Mark and Lori’s Top ten list… how you know you have a young child with cancer"
1.Your toddler’s vocabulary includes words like “heparin” and “neutrophils” and “oncology”
2.When your life is measured not by the days of the month, but in 28-56 day treatment cycles.
3.The last words before “goodnight mommy” are “do I get Methotrexate tonight or just 6MP”
4.When your kitchen table is covered with resources for wholistic health and nutrition, and you read them while comforting yourself with a pint of Ben & Jerry’s ice cream.
5.Where constipation is a regular dinner topic, and every poop is a celebration!
6.When time is referenced as BC or AD… Before Cancer or After Diagnosis
7.When your own PMS is rivaled by your 3 year old on steroids.
8.When your child asks if the hair falling out of his head is going to grow on his back, just like daddy’s did.
9.When every cough or fever means xrays, antibiotics and at least a few extra trips to the clinic.
10.When a date with your husband includes hugging, kissing and visiting caring bridge websites.

And probably the most notable way to know that you're living with Cancer is when you long for the way life used to be…

Oh…the way life used to be! Now, in all honesty, even with as hard as it has been, I don’t really know if I want life the way it used to be. Sure, my memory of my life BC, before Cancer, is that the grass was a lot greener, and things were easier. Living with cancer is like trying to concentrate with the television on…even on the good days, it’s a dull noise in the background which never goes away. But without this scary, stomach churning, mind numbing rollercoaster ride, I might never have learned the true meaning of the words love, compassion, charity, generosity, selflessness, gratitude, endurance, strength, faith and most importantly, hope. Tonight’s event embodies all of these qualities, and I am thankful that they gave me this chance to be a part of it and tell our story.

My husband couldn’t be here tonight, but I need to express my gratitude for him. His humor, his strength and his partnership have kept me afloat. And, my older children, Becca and Joshua… I have never met kinder, more patient, compassionate and strong children than these. They too are my heroes as they have endured and overcome this rough period…and they can still smile. Finally, I am thankful to God for all of the miracles He has provided us during this time.

You have heard from my boys, but I’d like to end by having my daughter Becca share a poem she wrote last year for Noah, which won national honors and was published. It’s called “And if you go”.

"And if you go" by Becca Hurley
(reprinted by permission) :o)

In life there are steppingstones and rocks,
Rocky was our course.
And then our life took a turn
for the very worse.

We came to a rock we could easily step over; and then the ground rumbled,
and you're the one that stumbled.

Now we're trying
to get you back on your feet.
Feeding you poison to make you well
isn't easy.

And if you go
and leave us here alone,
we'll just hope
that you had known
that we love you.

In all of us
you earned a place in our heart
And in our family,
you play a very important part.

But you're almost on your feet now.
We're sure you'll be okay.
And all that we'll ask God for
is at least another day.
To ask for another,
and another and another
and maybe a couple miracles
for my little brother.
----------
Thanks to all of you for your support and encouragement!!

Tuesday, July 12, 2005 1:12 PM CDT

Hi a quick update. Alexis had her Onc apt back on June 30th. It went well. Her counts were starting to drop some, but we had started her on antibiotics and a anti-fungal on Monday. If we had not started it then, then the Onc clinic would have put her on something Thursday.

We left on Friday afternoon to head to Illinois to see family. Cindi and Warren took all 3 kids on Thursday night, brave souls. Jeff and I loaded the van and topper up. I went and got the girls and left that afternnon to get Jeff. We stayed at a hotel that night and finished the drive to Jeff's brothers on Sat. We stayed with his brother thru Wed. then went to my parents (another 3 1/2 hour drive). We stayed with my parents until Sunday morning when we came back home. The kids did really well with everyone and the drive. Although I have said that we should go home everyother year (went to Grandma's every year growing up) I think that we will go back next year again. Hey I might even get to go to the Chicagoland race next year. Ok no pit passes, but oh well.

Alexis is doing good. Her cough seems better and she is done with antibiotics, except her normal Mon., Tuesday one. She is growing like a weed and has a huge appetite for certain foods.

Rachel is doing good and Trevor now has 2 teeth. Guess what all 3 kids slept in their own beds last night wooohooo.

On a very sad note. Heidi has some tests done and she has a tumor in her tail bone area. She is at Mayo, I think, getting radiation. She has been having major leg pain and this is most likely why. Pray pray pray.

My Aunt is doing ok, she has hospice now.

So please continue to pray for them and my online friends.

Relay is only 4 weeks away now. So let me know if you would like to give or just give me a check to the American Cancer Society.

God Bless,
Karen

Sunday, June 26, 2005 8:44 PM CDT

Well today we had Alexis' birthday party, July 1 is the actualy date but....
It was a great time. We had cake and icecream. Cindi, Warren, Michell, Emma, Sean, Kim, Bailey, Mike, (Karen was at work), Emily, Ben, Charlene, Barry, Matt, Alyssa and Dave and Vera were all here. Alexis got lots of great stuff, books, puzzles, craft things, clothes, hopscotch blocks, movies, dino stuff (of course) and a new bike.

She has played with lots of it already. She did the puzzle all by herself and she RODE HER BIKE, it does have training wheels, but the last bike she got never got rode, because she was scared. Rachel wants to ride it but we have to see if we can find a helmet small enough. Anyway it was a great day. I asked her what was the best part, cake, friends... she said no the presents. A true 5 year old.

I will be calling in tomorrow to get her antibiotics. She still has a slight cough, she does not cough much now just a few times a day, but it sounds bad when she does. We are also still getting some gunk out when we flush her nose so we are going to call in. Plus I now have a sore throat so we are not taking any chances.

She goes to the Onc on Thursday. I hope things are good as we will be visiting grand parents soon.

Please continue to pray for my computer friends, Kendrie, who we met in Florida, is in the hospital right now. Also pray for my Aunt and Heidi.

Thanks and God Bless,

Karen

PS I will give you a break about Relay hahaha

Thursday, June 23, 2005 4:45 PM CDT

Alexis had a ENT apt. today. It went as usual, keep up the nasal flushing. We are getting lots of gunk out lately, so if we are still getting stuff out on Mon. and still has a slight cough then I am to call to get a antibiotic. The ONC said if she was put on a antibiotic they want a anti fungal given too. I am not to optomistic that her sinus will be cleared by Mon. but time will tell. If she needs the anitibiotic we are to call in and then see him in 2 weeks, if not then no more than 6 weeks.

After her apt. we all went to Noah's house, yes I had all 3 kids with. Noah is a friend from the Onc office, he also has leukemia. It was great to see the Hurley's in a non clinic setting. We have to do it more offten. The kids had a lot of fun together, and I hope that they had fun with mine too. It was great to spend time with Lori. Like I said we need to do it again. : )

WOW is it hot or what. I was ready to get rid of the rain, but not ready for this. We are in the upper 90's with dew points in the mid 60's yuck. I prefer the 70's. But I guess it is Summer and if it never got hot how would we appreciate the 70's and low 80's right.


IF anyone is interested in supporting Relay for Life. I will be doing it again this year. Just let me know.

Thanks for stopping by and please continue to pray for my computer friends, my Aunt and Heidi.

Karen

Wednesday, June 22, 2005 8:59 PM CDT

Hi, nothing new today. She sees the ENT tomorrow. The kids went to Cindi's yesterday, thanks Cindi. I ran to St. Cloud to get our cargo box and run a few errands. The kids had a lot of fun. They love Cindi and Warren and can not wait to see them again. They wore Rachel out as she fell asleep on the way home and did not wake up until this morning. Alexis wants to go back soon, without mom. She will get to go next week if Jeff can not find a ride to work that Friday. I don't know if Cindi will be ready for that though (overnight) or me. I have not been away from all three kids ever. It won't even be for a romatic night with my husband. It would be for packing and then taking Jeff to work the next morning to save the kids the extra ride time.

Hope all are having a good week.
Karen



Monday, June 20, 2005

ALEXIS WILL BE 5 ON JULY 1ST : )


Hi not much new. We had a busy Father's Day. We went to Church and had Emma's Birthday party that afternoon. It was a lot of fun. The kids played and played. Emma got 10 inches of hair cut off and is going to give it to Locks of Love.

After we left we took Jeff to the Lakeside Cafe for supper and his free father's day rootbeer float. By the time we got home it was almost bedtime.

Alexis is doing good other than that DARN cough. It sounds pretty rough, but she does not complain about it. She is up almost every night with it. We are still doing the nasal rinse twice a day. We are getting lots of gunk out too. Jeff still stays away when we do it, but we make sure we let him know if we get any gunk out. WE will see what the ENT says this Thursday.

I am doing the Elk River Relay for Life again this year. If you are interested in helping with a donation or to do a luminary let me know.
New picture in photo's picture #2.


Please continue to pray for my on line friends and my Aunt Audrey, and Heidi.

Thanks for checking in. Take a few to sign in please, I check it everyday.

God Bless,
Karen

P.S. Vera, Rachel is asking when you are going to come back over. HMM do you think she misses you?

Friday, June 17, 2005 8:56 AM CDT

Hi well Alexis seems to be ok in the throwing up thing, but her cough is worse and she is constantly sneezing. HMMM cold #...... She has been busy with play dates this week, Marissa on Wed. and Keeley yesterday. Shell (Michelle) is to come today, I have called and left a message about Alexis' cold though.

The next few weeks will be busy. Errands to run tomorrow. Church on Sunday then if Aleixis is ok to Emma's birthday party, and of course it is father's day. Next week she has a ENT apt and play date with Noah. Jeff is running the sound board Friday and Saturday for a wedding. Then on Sunday church and Alexis' birthdday party, early her birthday is July 1st. Then Wed. Ben's birthday party, Thursday Onc apt and hair cuts, then we leave on Friday for Illinois to see family.

I pray that Alexis' cold goes away and that it is not affecting her counts to much, since we will be going out of town soon. ALways something to worry about.

Please continue to pray for my Aunt Audrey, Heidi, and all of my computer friends. My computer friends are the only ones that can truely understand my worries and concerns over the small stuff that most of you would not think twice about. Maybe someday I can relax, yeah right. I was ready past journal history last night. It is amazing how a year can make such a big difference. I pray that every year this gets farther from our minds to a more "normal" life again.


Again this year I will be doing the Relay for Life on Aug. 5th if you are interested in helping the cause let me know. You can do a straight donation or do a luminary in memory or honor of someone. It is all tax deductable.

God Bless,
Karen

Wednesday, June 15, 2005

Hi everyone. If the weatherman is right this should be our last rain/cloudy day for atleast a few days. I hope so.

Yesterday I had yet another eye apt., contact fitting again. I took all 3 kids with. I also went shopping, as all 3 kids needed jammies. Anyway, it went well considering... we met Jeff for supper at Applebee's, one of Alexis' favorite places to eat. Everything seemed fine until 2 am. Alexis came into our room saying that her stomach hurt. We have learned that when she says this to get the bucket ready. About a 1/2 hour later she was throwing up. So we got the couch ready.. She got sick one more time then fell asleep. I fell asleep about 5 am, so far so good today. I don't know if it was because she ate so much at Applebee's or what. She did the same thing about a month ago. Anyway so far she is doing ok, she did ask for a Zofran and that seems to have helped. We have a play date today and infact everyday this week.

Hope everyone is doing good. Please take the time to say "hi" in the guestbook, it really does help.

Karen



Friday, June 10,2005

Hi I saw Heidi today. We bumped into each other while out. It was so good to see her. I gave her a big hug. She looks great and says she feels good too. So keep those prayers going.

I stopped by Kendrie's site today. I met Kendrie and her family while in Florida. I "met" her mom on other CB pages and on my support group. It has been a topic lately about losing hair in LTM. Well Kendrie's has started to thin. I mentioned it to Alexis that it may happen to her and she said "no big deal mom it will grow back". She is truely amazing. I am so proud of her. She handles things better than I think I could. There are so many times that I have to remind myself that she is only 4, although she will be 5 on July 1st.

We had a play date today. It was a lot of fun. Eight kids from her preschool class were there. She was just like a 'normal' kid. I can not tell you how that makes me feel. She has been through so much, less than other All kids, but wow, she handles it so well.
On the way to drop Keeley off at home they were talking. It was funny as Alexis told Keeley that she was going to get the movie "The Incredibles" for her birthday. Yes she has asked for it, BUT we have not bought it. I don't think that we will as she has enough in Jeff's car trunk (where we are hiding her presents). So we will see how that goes. She does know some of the things she is getting, as she picked them out and wrapped them and helped hide them (not in the trunk).

AS for Rachel, ok not like you really care about the rest of us but.... She has been CRANKY. Not sure why, but wow. Trevor has been walking along the furniture the last few days and is getting braver and braver with letting go when standing.

Hope all is going well with you. Please take a few to sign the guestbook.

Thanks,
Karen



Thursday, June 9, 2005

All I can say is how PROUD I am of Alexis. She has done great with the nose flushing. She just goes right up to the sink and says "let's get it done". Jeff won't even come around the sink when we do it, it grosses him out. She says she can smell better, so this may be a long term thing. She goes back to the ENT on the 23rd.

Trevor got his first tooth this week. He still has me up in the middle of the night and was up a 5 this morning.


Friday, June 3 2005


Well here we go yet again. Last week I took Alexis to see the ENT. Her cough was back and was slightly worse. He said that she looked great, but wanted a CT to see what was going on. So on Friday we switched vechiles at Cat and Alexis and I went on to get her CT done. She did great as usual. I used to do CT's many many many years ago, so when they gave me the films to take to the ENT I looked at them. Well it did not look good. Her follow up apt. was Thursday along with her routine Onc. apt.

So Thursday we were up early to go to the ENT first. He said she still looked good, but that there was a lot of mucosal thickening throughout all of her sinus cavities. He decided NOT to put her on antibiotics, yet. He wants us to do aggressive flushing. GREAT... and use a nasal steroid at night, and see him in 3 weeks, unless she gets worse.

OK done with that and onto the Onc now. Her counts were ok. Her ANC was 1092. So they are not going to change her chemo dose. I asked for them to look up her CT report to see what it said. Dr Slomiany looked her over and said she looked good. I asked about her CT he read it over and said "they did not put her on antibiotics" Nope none. He said we would let them do that for now, but to keep a close eye on her. Oh yea her CT this time looked worse than the one she had in Jan. She was on antibiotics for that one for several weeks, but none so far ugh. He read Dr. Messingers last report on her and said he would have to look something up, as he wants her on a antifungal the next time she is put on antibiotics for her sinuses. So we are hoping that those sinuses get better. They have been a thorn in our side for quite awhile now. In fact it has been the one consistent problem that we have been dealing with. She gets a sinus infection and her counts drop, so she goes OFF chemo, NOT GOOD. Everyone thinks that it is good, but it is not. The more she is off chemo the more likely it is that a cell could be missed and she will relapse. Dr. Slomiany said that he cough would most likely get a lot worse during the flushing, since it is clearing out her sinuses, well it is suppose to. So we will see.

Ok the flushing you ask... Well we have a special bottle and saline type packets. WE mix water and the packets put it in the bottle, have Alexis lean over the sink with her mouth open and squirt it into one nostril, as the water comes out either her other nostril or her mouth. It is not fun. She did a little better this morning, but ugh how much can a kid go through. WE are to do this twice a day for 3 weeks. I tried it and it is like getting water up your nose when swimming only worse.

So there you have the latest update. AS for the rest of us. WE are doing ok. Rachel has been moody, cranky lately but doing ok. Trevor is crawlilng all over the place and stands up along anything. Jeff is good only fighting a cold right now and as for me I am doing ok. I am a emotional eater, not good and have gained a lot of weight since all of this has happened. So other than feeling very stressed and overweight I am ok.

Jeff's brother and family were up over Memorial Day. It was great to see them. We had a lot of fun with them. I am waiting to hear as I guess their dog did not do good being boarded.



I am taking donations for the Relay for Life in Elk River again this year. You can do luminaries if you wish to honor of in memory of someone. The donation is tax deductable. The proceeds go to the American Cancer Society. The Relay is Aug. 5th.


Please continue to pray for my computer friends, Noah, who we saw yesterday at clinic as he was sick, and Heidi. Heidi is now on a experimental chemo.

Please take time to sign the guestbook, it really does help knowing you are thinking of Alexis.

God Bless,
Karen

Wednesday, May 18, 2005 4:03 PM CDT

Hi So far so good. Alexis is starting to cough in the morning which has me a little concerned, but otherwise she is doing great. Pre school is winding down. Alexis just loves pre school, and has said that she will miss it and not just her friends but her teachers too. She told me that she likes Mrs. John and that she has teached her a lot. So next Thursday the 26th is her graduation.


To say what a difference a year makes would be a understatement. Last year she still in intense treatment and not feeling well at all. This year she has hair and is feeling good. Not that I don't worry, because I do. How could I not worry. I mean there is a chance that she could relapse, this cancer is only at a 80 percent "cure" rate not 100. And really it is NOT a cure she is in remmission. I pray to God everyday that she stays that way. NO one knows why a child relapses it is a crap shute. And lately there has been a lot and I mean a lot of relapses in my on line support group. Yet another one yesterday. I HATE this D@#$ancer. The girl that just relapsed was 16 months OT (off therapy) YES 16 months. Why I will ALWAYS worry.

But for now Alexis is feeling good. Rachel is still a little spit fire. She is all of 26 pounds full dressed with diaper. Her onc has said feed her anything she wants, even butter once in awhile. She loves muffins, well she loves the butter on it. Other than being petite she is good and loves to repeat after her sister. NOw that Trevor is off she has had run ins with him, as he wants to get into whatever he can and usually it is on the floor where she is playing, so we need to keep and eye on that as Rachel will head butt when she is mad. (ok I know one big run on, but hey English is NOT my stong suit) Trevor well he gets into everything. He is crawling and pulls himself to a stand on any and everything, and yesterday he even stood for maybe 3 sec. without holding on to anything. He can go up the stairs, but luckily does not do it on a reg. basis.

So we are all well. Tomorrow we are going to a Hem/Onc party at the Pine Tree Apple Orchard. They do a tennis tournement every Aug. to benefit the Children's Clinic's. It should be a good time if it does not rain.

Please continue to pray for my on line friends, my Aunt Audrey and especially Heidi. We need to be rattling Heaven with prayers. Heidi has shown such strength and courage during this. She is a amazing person. She goes to Mayo next week. Pray Pray Pray.

Again this year I will be doing the Elk River Relay for Life. It is Aug. 5th. So I am asking for pledges or donations to raise money for the American Cancer Society. It is tax deductible. If you would like to help, please e-mail me or call give me a call. Thank you.

God Bless,
Karen

May 12, 2005

Well I have bad news. Heidi's scans did not turn out good, the tumors have grown. They will now go to Mayo to see about experimenatal things to try. Please send lots of prayers to her family and her.

karen




Sunday May 8, 2005


HI everyone and Happy Mother's Day.


Alexis had clinic last Thursday. It was a spinal tap day. She saw Dr Messinger. He is the best. We talked about how she was doing. He said she is doing great and looks good, weight wise. I guess that kids can have a big problem with getting obese. He said it is something we are going to have to watch. Great, I have weight issues which I hope she will not have to strugle with and now we really have to watch it. We also need to keep a eye on her cognative skills as they do not know if the spinal chemo will affect her learning ability. One more thing to worry about. ANyway her spinal went well and her counts looked great. So he increased her 6mp to 100 percent and left her methotrexate at 75 percent he also increased her Dex (steroid) and boy has that been fun.

We do not have to go back for a month unless there is a problem. Alexis wanted to do Applebee's so off we went. We went to Roger's about 20 min from home. When we got there she said her stomach was upset. I asked if she wanted to go in and she said yes. We went in and ordered our drinks. She got very quiet. I went and sat by her and asked how she felt. After a few min. of me trying to get a answer she said, well not much I asked several times if she wanted to order and take it home or just leave. Finally she said just leave. I flagged down our waitress and said she was not feeling well after getting chemo that morning and we needed the bill for the drinks so we could leave. She said not to worry about it and I picked her up and ran out. I feel so bad that I forgot to even leave her a tip. Alexis laid on the couch until about 3 and then got up and said I feel fine can I eat Rice Krispies and bananas. She has been fine since, except for the steroid roid rage thing. And the hunger for certain foods and the fit that follows if we don't have it.

So today we went to St. Cloud just for the pretzel maker ( yes you can say SPOILED) Boy for just going up for pretzels it sure did get expensive, Mall, target, Wal-Mart, out to eat and Sam's.

So she is doing well, right now she is wanting me to go upstairs, not sure why.

Rachel is doing good. Has a really bad diaper rash. I thought it was a yeast thing, but boy does it look sore. I am trying Butt Paste on it. hope it gets better soon.

Trevor is doing good. He is all over the place. He loves to pull himself up on things. He will be 9 months on the 12 and has his apt on the 13th.


Please continue to pray for my computer friends, there have been lots of problems lately and many relapses. (why I will always worry). Also my Aunt Audrey and Heidi who has some scans scheduled for Tues. to see if the tumors are shrinking. PLease pray that they are.

Thanks for checking in on us.

God Bless,
Karen

Thursday, April 28, 2005 2:51 PM CDT

Alexis had to see the ENT today. She goes all the way to Maplewood. Tori watched the kids, thanks Tori. Her apt. went well. Dr. Karlan said that she was all healed and it looked really good. Her cough is slightly better and since he did not see anything did not put her back on antibiotics. He said that if she has any problem we are to see him. So if I think she is getting yet another sinus infection and she is not scheduled to go to the Onc. we are to see him and not our primary, because he wants to see what is happening. So that was good. One hour to get there about 20 there and one hour to get home.


Alexis also had a spagetti dinner fundraiser at Agape tonight. It was good and I think a pretty good turn out too. They had a balloon maker there who was amazing. I got his card just in case.

WE are all doing well. I still have a cold (sinus infection ?) but have not called the doc yet, maybe next week.

Please continue to pray for Heidi, my on-line friends, and my Aunt Audrey.

Thanks for checking in.
Karen



Wed. April 27th 2005


Well tomorrow Alexis goes back to the ENT again. She still has an occassional cough so we will see. I guess it figures as I have a bad cold, probably another sinus infection and if it was one to the kids I would of had them at the doc by now, but it is just me.

I am curious to see where her counts are since her ANC was over 7000 last time. Yes, it makes me nervous, but I guess I always will be. Rachel has bruises all over and I start to think, but I have to tell myself that they are just "normal" ones.

So ALexis is doing ok. We will see over the next week of so what her counts are as she goes to the Onc next week on the 5th for her routine chemo and spinal tap.

Rachel has been very cranky and needy lately. I know she has a slight cold, but....

Trevor is crawling now. So it is a constant battle to make sure small things are picked up and little pieces of paper etc....

I talked to Lori H. today, AKA Noah's mom. It was great to talk to her. Noah has a sinus infection so he is on meds and his ANC was up so they increased his chemo.

So I guess we are all doing ok. I am always tired, begining to wander if it is normal, as I have NO energy at all, just TRYING to keep the house semi picked up seems to be a battle which I never win. Ok enough rambling.

Please continue to pray for Heidi, my Aunt Audrey (lung cancer that has spread to her brain), and my computer friends. May are having problems and some just relapsed and I found out today that one passed on last night.


I will be doing the Elk River Relay for Life agian this year. It is Aug 5th. If you would like to support this cause please let me know.

Thanks and God Bless,
Karen

Monday, April 18, 2005 7:56 PM CDT

Alexis had clinic today. She has her cough back, not good. It started on Sat. this morning she was running a fever of 100 so no school. She was not happy about that, but....

Linda was not there today but she did fine with Jim. They did counts and cultures, because of the fever. Amy looked at her and thought she looked good. Her lungs sounded clear, so it is either a virus or yet another sinus infection. She has been on anitbiotics since Feb. yes Feb. We are going to increase her Omnicef to twice a day to see if that will help. She goes back to the ENT on the 28th. She will go back to the Onc on May 5, which is also her spinal tap day.

We left before all of her counts were in. Her WBC 9.7 RBC 3.98 Hemoglobin 11.7 Platelets 354 and her ANC 7760 This is the highest her counts have ever been. I forgot to ask the results of her last tests next time if I remember. So she in going up to 75 percent chemo.

Other than that she is doing ok. Slept on the way to and from clinic today. We will see what happens. I am so sick of this cough. UGH

Thank you for checking in and please take a few to sign the guestbook.

Also please pray for my on line friends as so many are having problems right now. ALso please pray for Heidi and my Aunt Audrey who has been dx with lung cancer and it does not look good.

God Bless,
Karen

Friday, April 15, 2005 10:41 AM CDT

ok I keep losing my connection so I will try this again.

Well Alexis had a ENT apt yesterday. It was a one week post op. It went well and she does not need to go back for 2 weeks now. We do need to flush out her nose several times a day to get rid of the crusties, or else do surgery again.

She goes to the onc on Monday the 18th

Not much else going on. Jeff and I are taking Vera and Dave to Bennihana's tonight. Vera watches the kids on all of the clinic days. WE did not want to go by ourselves so we asked if they could go. I do not even mind that we are paying as we owe them so much...... It is also a birthday dinner for me as my birthday is tomorrow.
Cindi and Warren are watching the kids. Alexis is so excited because Chanda will be there.

Well not much else, I guess we have a boring life which at times is not that bad.

Please pray for all of my on line friends as another child has relapsed yet agian.

God Bless,
Karen

Thursday, April 7, 2005 4:36 PM CDT

Hi everyone. Alexis wants to say "I love you" and "I wish we can play together and eat together" and "thank you for saying prayers."

Alexis had her surgery yesterday. It went well. It took about an hour. We were suppose to stay over night but they decided that she could go home if she was doing good. So we came home. : )

We could not get her to eat or drink anything yesterday. We did finally get her dex, pepcid, antibiotic and tylenol with codine down her over a 2 hour peroid. She did get a very bad headache shortly after getting home, I am sure it was from no food and the surgery. We gave her the pain meds and that helped after awhile. We put her to bed, yes ours. In her words "I have had a rough day so I can sleep in your bed" At about 10:00 I heard her yell "MOM" I go upstairs and she goes I threw up... and I hit the bucket (to my relief). It was not long ago that she would of yelled and threw up on whatever was there, now she gets a bucket, which of couse we had put next to her just in case. Gross talk ahead..... it was basiclly blood from the drainage after surgery.

She went to sleep and at about 2 wanted some water and then at 4 decided it was time for breakfast. I held her off until a whopping 4:15 as she keept saying her stomach was rumbling, which I am sure it was since she did not eat the day before. So she ate cereal and we tried to lay on the couch until morning.

They did culture some pus that was in the rt side. Ok she has been on anitbiotics for 5 weeks and there is still pus there not good. We will see what that shows. She is also not suppose to blow her nose for a week and sneeze though her mouth. She has been sneezing and doing a good job. I also have to put nose drops in every few hours (they say 2 but I am lucky to get it in every 3).

She seems good today, eating and drinking. She is to take it easy for a couple of days. She goes back to the ENT next Thursday and then to the Onc on the 18th for a count check and exam. She is back on 50 percent chemo now. YEAH

We just got back from the park. It is 7 which is Alexis' food cut off time when she is on chemo. We said if you hurry you can have a snack. She has been off chemo for 2 weeks and will start back up tonight. She said "I wish my counts were low so I can eat anything I want". Jeff and I started to laugh.

So it went well I just pray that it helps.

Rachel is doing good, clumsy, but good, as she did a header into the coffee table last week. Trevor is starting to scootch everywhere. He has learned to sit up from a laying position, most of the time.

One of these days I will add more about our trip.

Please continue to pray not only for us but my on-line family (friends) and for Chrissy, Donna, Kristie's husband Blaine and for Heidi.

Thanks and please take time to sign the guest book it really does help.

God Bless,
Karen

Thursday, March 31, 2005 3:53 PM CST

Hi everyone. I just want you to know that Alexis will be having surgery on April 6th on her sinuses. She is nervous but I hope that things go well we would be home that same day.

Friday April 1st I just talked to surgery and at this point and time they have her scheduled to stay overnight. I am fine with that as she is scheduled for chemo the next day. This is NOT a April fools joke. ; )

I need a lot of prayers for some people right now. Chrissy, on line ALL friend, her husband had a accident where a tree fell on him.
Donna, on line ALL friend, her husband was killed in a freak subway accident. www.caringbridge.org/ny/mollyg
Heidi, friend from church, her cancer is back Stage 4.

If you will pray for all of them and my other on line frineds I would greatly appreciate it.

Also if you don't mind, pray for my sanity as my kids have been terrible lately. Well Rachel is having another melt down.

Thanks and God Bless,
Karen

Friday, March 25, 2005 7:57 AM CST

Hi I do not have a trip update, but here is a Alexis/family update.

Trevor and Rachel have both been sick this week. I thought they were getting better, but now they both have coughs.

Wed. had to put Shale down. Much harder on me than the kids. Alexis has asked when we are going to get a new one, not for awhile. She has said that there are probably shoes and coats and things that Shale was not suppose to chew on here that she can in Heaven, and that she is now playing with K.C..

Ok as for Alexis. Her cough has gotten slightly worse, but she had a Onc apt and ENT apt yesterday. As I expected her counts (ANC) is low 320 so she is OFF chemo yet again. They did not do much else as she was to see the ENT (ears, nose and throat doctor) in the afternoon.

The ENT was running over an hour behind schedule UGH and as expected she needs sinus surgery. I am to call later this morning to schedule it. They are making her a priority so it should be sometime in the next 7-10 days. She is nervous, but should be fine.

Our highlight of the day was seeing Noah and Lori. They are friends that we met at clinic. We ate lunch with them. It was so good to see them wish we could do it more often. It was so cute to see them hug each other and ask to get together again to play. Then on the way to the ENT Alexis asked if that was a "new Noah". I said no it was the same Noah. He has hair now and looks a little different. It was so cute.

Please pray for my on line friends so many are having hard times right now. We met a CB family in Florida. Kristie and Kendrie and family. Blaine, Kristie's husband, had surgery in Seatle, they live in Georgia. So the family has not been together and I just found out that Blaine's mom passed away and he can not go to the funeral because he is not cleard to travel. \

Also please pray for a friend form my church, Heidi. She just founnd out that her cancer is back and it does not look good. She is young (41 I think) and has 3 chilldren.

Thank you and God Bless,

HAPPY EASTER!

Karen

Sunday, March 13, 2005 7:07 PM CST

New pictures on view photos.


Sorry that it has been so long. Alexis had clinic last week. Her ANC has dropped to 780, darn sinus infection. yes she has another one. The clinic called the next day to drop her chemo to 50 percent and come back in 2 weeks instead of 75 percent chemo and see ya in a month. I feel better knowing she will be back in two weeks as those sinus infections really take a toll on her counts. She has a ENT apt that same day and we expect that they will want/need to do surgery to correct the problem. The clinic finally said that they are a little concerned that she has been on low chemo or off all together for so long now that a stray leukemia cell could be missed. I have thought that for awhile now. So we will see what happens on the 24th.

Here is another update from our trip. Again I will try to do more soon. Sorry it has taken so long.

God Bless,
Karen


Ok I know that it has been a while since I have updated. We were on our way to eat at the Gingerbread house. It is so neat inside. The tables are kid sized, but not to bad for a adult to sit in. I do not want to give to many secrets away, as there are others out there that will be going.

GKTW is staffed by volunteers. They range from young to old and in between. It is just a amazing place and amazing does NOT do it justice. Anything they can do to make your stay better they will, from just carrying your food tray to anything.

There is the Castle of Miracles, which has a carrousel that the kids loved, especially Rachel. Who still talks about it, she says it goes “ up and down, up and down”. It has inside a several play areas and the ceiling has stars on it. Each star represents a child that has been there. I can not remember exactly when they started it, but one room is full and the other is about half and YES Alexis now has a star there too.

There is also 2 pools and a movie theater and Amberville Station. Amberville station is a train station with a arcade and a mini golf course. The golf course is dino themed which Alexis loved, BUT do not go there for the first time at night. She ended up scared of it. There are arcade games, pool, ping pong, remote control boats, a huge train set up and even a train to ride.

Again I can not even begin to tell you what this place does for the children and their families. So please consider it as a charity to give to.

The first night you arrive one adult has to go to orientation. That is where you get a lot more info and your park passes. It was Christmas the day we arrived so Jeff and mom took the kids to see Santa, and I went to orientation. Alexis even sat on his lap and told him what she wanted, some of you might remember what happened last year at Santa day. You see every day at GKTW is themed in some way. Each morning you get a planner of what the next days activities are.



OK Feb 18th , Friday, we were off to the beach to see Vera and Dave. Vera watches the kids while Alexis and I go to clinic and she is….I can not put into words what she means to us. Rachel asked this morning if we were going to church and about seeing Vera. Then she said “I love Vera”. It took about 2 hours to get there. They stay on the Gulf side, at Indian Shores. It was not the best beach day. It was warm IF you were in the sun and out of the wind. We walked the beach and looked for sea shells. Dave was not feeling well, but did come with us part of the way. We walked down to a bird sanctuary and saw pelicans and other birds. Alexis did not want to stay there long as it did not smell the best.

On the way back to the house we took off our shoes and socks and walked in the water. BBRRRRRRRR the water was soooooooo cold. Alexis walked/ran the whole way back in the water. She loved it. We had to change her clothes when we got back and she wanted in her swimsuit. Ok we might have been bad parents, but we let her and her sister put them on. I stayed at the house with Trevor and Jeff took them down to the water. Rachel stayed out, but Alexis went in. She did great until a wave knocked her balance off then that was the end of that. But she had fun she ended up soaking her feet in the pool with Dave. Later that day we went to a place to eat, I can not remember the name but it was good. We left to head back to Orlando, but wait Trevor started to cry so we surprised Dave and Vera and fed Trevor before we headed back. They even brought back all of the shells we collected for us. The headed back to MN the next day.

Sunday, March 6, 2005 6:38 PM CST

Hi everyone. We're back. Ok we have been for several days, but we got in late and all 3 kids and myself are sick. So I am just now trying to update, as Rachel is trying to climb on my lap saying pick me up¡¨.

Our trip was great, and I am sure there are already things that I have forgotten. I finally got us packed with everything, which ended up being way more than we needed since we had a washer and dryer. Anyway the Limo picked us up at 7:00am on Thursday the 17th of February. The limo was a stretch limo and Alexis was so cute, as the mood colors kept switching she would tell us what color it was. We all liked the limo ride. We got to the airport and got checked in and then we went to security. You should of seen us, 3 adults (Mamaw came with) 3 kids, 3 car seats and 6 carry on bags trying to get through security. By the time we took our shoes, coats, put the car seats and 6 carry on bags to go through ugh. We got to our terminal and did not have to wait long for pre boarding to start. Jeff got the car seats installed and we got everyone in there place. Then we switched seats because Rachel was hollering for Mom. It did go well though. Alexis was a all star flyer. Rachel did fine as long as I was next to her and holding her hand. Every time the flight took your stomach or hit a little turbulence she squeezed on tighter. Trevor did well too. I did have to find a place to stand and bounce him for about 15-20 as he was overly tired. But it went well and before we knew it we were on the ground in sunny Orlando sweating. It was 85 degrees. : )

Our GKTW (Give Kids the World) greeter was Miss Amanda. She was great. Ok I do not like the Orlando airport. There are no baggage carts near the terminal, so here we are hauling everything yet again. You walk, what seems like forever, then take a train (tram) to the main terminal. UGH That is where Ms. Amanda was. She had a sign with Alexis name welcoming her to GKTW and a cart. : ) She got us baggage claim and to our rental van and helped us check in and gave us directions to GKTW.

Off we went to find GKTW. We showed up and had to punch a pad to let them know we were there, as it is gated. To say the place is amazing is such a understatement. I mean where do I begin. You check in and they go get the kids shirts and stuffed animals. Alexis got Magician Mickey and Trevor and Rachel both got Shamu. They give you a packet of stuff and then take you to your Villa. The villa is nice. It is a 2 bedroom 2 bath villa with a full kitchen and washer and dryer. The kids room has the master suite. The bathroom was huge and had a whirlpool tub. It became our home away from home for the next 6 nights. Everyday someone came and left toys and things for the kids. It did not take long for them to ask when we got back what was waiting for them. Oh I almost forgot. When we got to the villa on the table was a gift basket filled with snacks and a few toys and a book about the founder of the Village. They also had frozen meals in the freezer and pop and water in the fridge.

We left to go eat at the Gingerbread house.(it is run by Perkins). Well Alexis is wanting someone to snuggle so I will post this and try to write more soon. Hum for not remembering much I sure do have a lot to say and to think we just arrived. : )

Wed. Feb. 16, 2005 4:22 PM CST

Hi Everyone, thanks for stopping by. I may not be able to update the site for a few weeks. Alexis does not go back to clinic until 3-10. Yeah.

Please continue to hold her and us in your prayers and also please hold all of my on line friends in your prayers too. Some of them are having a really hard time right now and some have just relapsed.

I will update when I can. Please take the time to sign the guestbook. It really does help even if you just say "hi".

Thanks and God Bless,
Karen





Thursday Feb 10 2005

Hi everyone, Well here it is Thursday again which means clinic day. Alexis had her "routine" apt. today. This was her spinal tap day. She did amazing as usual. We saw Dr. Slomiany, her primary, although we usually don't see him. Anyway she did great and her counts were great too. ANC 0f 1764 so he increased her chemo. I reminded him that we are goning to GKTW next week, he increase it to 75 percent. Funny how all of the docs do things different. Dr. Messinger said a small increase, but did not say exactly what he would do. Amy (NP) said would only increase one of the meds, but she was upped to 75 percent of both. They said we did not need to come back for a month, well we are going to be gone for 2 weeks so it was either next week or not for 3 weeks so he said keep her routine apt.

He was also supprised that with all of her low counts over the last month that they did NOT take her off her Bactrim (SP). I knew, thanks to my support group, that it can cause neutropenia. He said that he would of taken her off of it, but that again is the difference in docs.

We are all excited about Florida, well I am not sure that Jeff is yet, but the rest of us are. Vera it won't be long now until we see you.

Oh yeah, Jeff had to take the day off today. All of our sitters and back ups were sick and we did not want them here to infect us before we leave. So Jeff stayed home. I don't think he minded to much as he has been and is working on the other computer he has been putting together.

Well the kids are calling so take care for now and thanks for stopping by.

Karen

Thursday, February 3, 2005 4:45 PM CST

Well another week has gone by. Yes, it was clinic day again. No not her "routine" one but another extra one to check counts. It "luckily" WAS a quick day today. I kept her accessed last night so they would not have to do it today so they drew blood and deaccessed her. Then Dr. Messinger came in and looked her over well. He said she looked good and that the only difference between him and Amy (NP) was she is aggesive with sinus infections and he is not. Alexis has an apt. with a ENT on March 3. We decided it will not hurt to talk to him, but not do anything unless she keeps getting sinus infections.

Her counts are good, so she will start chemo back up tonight at 50 percent. Her WBC 3.9 RBC4.47 Hemoglobin 13. Platelet 355 and ANC of 1794 It is good to get her back on chemo. She goes in yet again next week for her routine apt and spinal tap. If they decide to increase her chemo I am to remind them that we are going to Disney.

Thank you Jo and Bill C. for watching the kids the last few times. Vera I know you are reading this enjoy your time in Florida. We will be there soon enough to bug you and when you get back you can take back over you sitting duties. : ) I know that we miss you, but you and Dave needed to get away and relax. By the way Trevor rolls from his back to his tummy now and Rachel is deffinetly 2.

So Alexis is back on chemo and can not wait until we leave. I am excited too. We will get to meet someone from my support group, Kristie and Kendrie and familly. Plus get out of winter for a little while, although today is beautiful. upper 40's and sunny.

Thanks for checking in on Alexis.
God Bless,
Karen

Friday, Jan. 28, 2005

Well yesterday was yet another clinic day for Alexis. It was suppose to be a routine counts and exam. So she could get started back up on chemo. Well her counts came back, her white count was up to 2. something and her platelets were slightly high, BUT her ANC was 69 she has not been that low since dx. They do not think that she is relapsing as her other counts are good. They think it is this blasted sinus infection. Don't get me wrong she feels fine, but 69 ugh. So we decided to do a CT of her sinuses to see what is there and switch her meds. We decided after the CT to go with IV anitbiotics. So she needed to be reaccessed. So we put emla back on and went to lunch, the back upstairs and waited. They reaccessed her and started her antibiotics. We are to give it at 6 AM, 2 PM and 10 pm. It takes over an hour to go in and then we need to flush the line. So it is a late night and early morning. We are also suppose to set it out 3-4 hours prior to giving it. So you figure it out, to be given at 6 AM so out of reg. at 2 or 3. Sounds like fun huh. Alexis is doing well with it. It is in a plastic bottle with a balloon of medicine in the middle. It is pretty neat. She will have this done for the next 7 days and then go back to the clinic for counts next Thursday again. She is also scheduled to see a ENT. It was scheduled 2/10 but she has a spinal tap that day the next apt. was the 17 and we will be on a plane so she will go 3/3. Right after we get back.

Thurday night was her MAW party at Applebee's. YES we went. It was great. We got there and there was a sign that said "Welcome to Applebee's Alexis". We said we were the Alexis party and got seated right away. This was at 6:00 and it was busy, but we did not have to wait. : ) They had lots of balloons weighted down with candy and a basket of toys. We ate and had the best service ever. Her wish volunteers were there too. They had a Disney themed cake and she got a mixer for her kitchen, dino book, dino cards, dino finger puppets, a bucket of dinos', do you see a theme here, and a 2-3 foot stuffed dino. We also got our itinerary. Applebee's paid for our meal, gave us a tour of the kitchen, gave the girls a goodie bag, made Alexis a honorary Applebee's employee with her own name badge and about 100 free kid's meal certificates, no joke. It was a great night.

Tonight was the clinic winter party. We kept Alexis home from school, but let her go to the party as everyone there knows the protocol and have kids with low counts. It was a lot of fun. They all get a toy to pick out. Alexis got a dino puzzle and Rachel dino figurines and Alexis picked out a toy for Trevor. They had the fishing game which both girls did twice and Alexis had a blast with the crafts. We also got to see some friends. The Hurleys were there. It was great to see them and Noah looks great. I hope we can get together with them soon. I miss seeing them. We also saw Paige and her parents. Alexis and Paige have colored together at clinic before we swithed days. I also talked to a mom that I met there last year. A lot of the employees were there too. Linda and other nurses, Kristen who Alexis saw all of the time before switching days and most of the Doctors. It was a lot of fun. We even won 2 prizes. Some flowers and a gift cert to dinner. We traded out certificate with the Hurley's as it was in the East metro and theirs was to Timberlodge. It worked out fine. Alexis had fun and that is the main thing and I enjoyed seeing my friends again. I guess I need to call and order some clowns, but tell them no need to dress up or entertain us, just get together.

Well I am tired and it is late. Thanks for checking in on Alexis Please pray that her counts go up and she gets over this sinus infection.

Pray for my computer friends too especially Lexy.

God Bless,
Karen


Wed. Jan 19, 2005


Well I took Alexis back into clinic today. Her cough was not any better and she has been complaining of a headache the last few days. She saw Dr. Messinger today. He looked her over good and asked me a lot of questions. After looking at her and pressing on her sinuses her agreed that it was a sinus infection. He thought that for now the CT can wait. He wants her to take Augmentum for 3 weeks to see if that will help. Then if neccessary a CT and ENT visit. He said that it can take up to 6 weeks to clear up a sinus infection, and when he heard that all of us at home were sick with similar things he said to be patient. So we will try to do that. They did NOT do counts as she was not accessed yet, so he said not to do them. He also put her on another anitbiotic 3 x's a day for a week, due to chicken pox. It was NOT a direct exposure, as the child broke out on Sun. or Mon. and she had not been around her since Wed. but since she was on steroids he wanted to play it safe. We are to keep a close watch and if she gets any spots take her in right away for the shots. Please pray that she does not get them.

Rachel and Trevor were at our primary clinic yesterday. Rachel has the runny nose/ cough thing so they put her on anitbiotics and Trevor has a double ear infection so he is also on antibiotics. They also switched mine to a z-pak to see if that helps. So 4 of us are on them.

Rachel gave us (me) a scare yesterday too. She got into what at the time I thought was my make-up again. This time, while I was on the phone to the onc clinic, she used a step stool to reach Jeff's safety razor. She came down the steps with red all over her lips. I thought it was make-up. I took her upstairs to see what kind of mess she made when I noticed the razor with the cap off and blood on it. That is when I realized it was blood. She did NOT cry, not even one tear. It took me almost 15 mins. to stop the bleeding. It could of been sooooo much worse.

So there is another up date on the Stern household of germs. We leave in 4 weeks, please pray we all get better by then.

God Bless,
Karen



Thursday, Jan 13, 2005

Well Alexis is OFF chemo yet again. HMMM Just when you think things should get easier here comes a bump in the road. This is her 3rd time off chemo since LTM started. I knew that she had been fighting a cold/ear infection. Back on Dec 28 I took her to the reg clinic and it looked like she had a ear infectioin. She seemed to be getting a little better, but it never quite went away. The cough and runny nose. Today at clinic I told Amy (NP) and she said she probably has another sinus infection, once I described her headaches and on occasion stomach aches. So she will go on Augmentum (sp), that is when we get it. Cub did not carry it so they have to order it. It will be in tomorrow, so I will have to take 3 kids out in sub zero temps. sounds like a lot of fun.

Anyway, other than her sinus infection she looked ok. Having slight foot drop on one side when walking on heels thank you Vincristine. As for her counts... well they are in the tubes. a WBC of a whopping .6 yes .6 and a ANC of 240. I will have to talk to Jeff tonight about school tomorrow. Our clinic says it is fine, but....

WE finally got a little snow up here, maybe 3 inches. So last night I took the girls outside. Luckilly Trevor behaved and fell asleep. I shoveled the driveway. Doesn't that sound like fun. The girls played and then Alexis helped me with the drive. She did a good job too. How come Jeff goes out of town when we finally get snow...He should be back Friday night.

We were lucky. I did have friends call to say they were coming over. Cindi to play with the kids and Warren to shovel. Poor Warren. BUT I had already done it, if I had only known. But how nice is it that they were willing to come and do it knowing Jeff was gone.

So Jeff is out of town, feeling better after his antibiotic. Trevor seems to be doing better, knock on wood. Alexis will start anitbiotics again tomorrow. Rachel sounds bad again today, we will see what happens there. And my antibiotics have not started working yet. I will give it until Monday. Don't we sound like a fun bunch. Oh yeah Alexis started her steroids today. : ) If you want to include the dog she is on her own set of meds.

Other than that things are good. We heard from her MAW coordinator and volunteers. We will be going to Applebee's in 2 weeks to get our itinerary and a few gifts. Alexis LOVES Applebee's. Just 5 more weeks but who's counting.

Alexis will go back in 2 weeks to get her counts checked again.

Thanks for checking in on her. Please pray for my computer friends. I do not know what I would do without their support, as they truely understand the fears I have.

Please sign the guestbook it really helps.

God Bless,
Karen

High tomorrow of 8 - 10 below zero. sounds like fun huh.

Thursday, January 6, 2005 7:53 AM CST

WE BELIEVE WE HAVE SOME SORT OF VIRUS, AND ARE HAVING LOTS OF INTERNET PROBLEMS, SO IF I HAVE NOT BEEN TO YOUR CB SITE TO SIGN IN IT IS BECAUSE MY COMPUTER WILL NOT LET ME.
HOPE TO GET IT RESOLVED SOON, SO MUCH FOR ZONEALARM.


HI everyone, I hope this finds your new year going great.

We are all doing ok. We have a cold going through our house. Rachel, I think, is about over her's, as her nose is not running as bad. Alexis had a ear infection, and is off her anitbiotic now. Her nose is running a little and has a slight cough in the am usually. Jeff just finished his anitbiotics and is feeling better. Trevor has a cough too. And yes I am also fighting it. If Trevor and myself are not doing any better by next week we will go into the Doctors next. Other than that we are all good.

We had a great Christmas and New Year's Eve. We spent both with friends, Warren and Cindi, and Chanda too. The girls just love them so much. We have not seen much of Kevin and Michelle lately with their busy schedule, then with all of us being sick. We hope to see them very soon as we miss them.

Alexis is doing well, other than the cold/ear infection. She still loves school and Rachel would stay with her if she was old enough. The girls get along most of the time, but they already have that sibbling rivalry going.

Trevor is turning is circles on the floor.

It is just 6 weeks until Alexis' MAW trip. It is comming up so fast. Watch we will finally get snow while we are gone. Not that I miss it, but Alexis wants to go out and play so bad. Last year we had snow and she did not feel up to going out, now this year she feels up to it but NO snow. We just have to pray for good weather the week we leave so we do not have trouble getting my mom up here or then down to Florida and back of course.

Please keep all of my computer friends in your prayers too. Some are doing great, some are having some problems, some have just relapsed and some families are missing their little ones.

God bless,

Karen

Sat. Jan, 1 2005

Happy New Year. I hope that 2005 is a great one.

I wrote this in Noah's guestbook and copied it here.

I sit here writing wandering what to say
I have three kids screaming
oh what a day
a husband in the basement without a care in the world
and here I am sitting trying not to explode.
still 3 kids screaming, stop chasing I say
but they do not listen hmmm what a day.
Trevor still screams... hold me I think or maybe I'm dirty or feed me...
Well I hope all is well on this New Year's Day.
I just want you to know you are thought about everyday.


Well Trevor still screams so I must go get a bottle ready.
Thoughts and prayers to you all.
K


Thursday, Dec. 30 2004

I hope that everyone had a Happy Holiday Season.

It has been a busy few weeks. We had a great Christmas. Alexis got a grill from Santa (pretend, of course) and some food to go with it. She also got some books and a walking and roaring T-rex. Rachel also got the T-rex and a mini telescope/view master, and books. Trevor got some floor toys and odds and ends.

We had Warren, Cindi and Chanda over for Christmas dinner (lunch). It was a lot of fun and they got very full of grilled food, pretend of course. : )

Alexis is doing good except for the colds that all of us have. I took her to the Doc. this week and she is back on Zithromax, for a ear infection. Jeff is also on anitbiotics for a cold that has lasted 3 weeks. Rachel is doing better but still has a runny nose. I have a runny nose and slightly sore throat and Trevor just came down with a bad cough and is hoarse. Hmm don't we sound like a fun bunch. Other than that we are all good.

Rachels new thing is "leave me alone" mainly said to Jeff. Oh those terrible twos.

We got together with Olivee (sp) and his family. He is working in the US right now with Caterpillar. They are from France. It was a lot of fun. The kids played really well, even with the language barrier. We hope to get together with them again soon.

I can not believe that in just 7 weeks we will be on Alexis' wish trip. I am so excited and so is Alexis. If I don't get busy and lose some weight I guess I will have to buy some shorts in Florida when we get there. OH well.

Please take time to sign the guestbook, I may not update that often, but check the guestbook everyday. To all of my CB friends out there, I am sorry that I have not stopped by lately, but you are always on my mind.

Please also pray for all of my CB friends and on-line support group friends. Many are have a hard time right now, a few have relapsed and some have passed on.

Thank you and God Bless,
Karen

Tuesday, December 21, 2004 9:51 AM CST

I have included our Christmas letter at the bottom. Thank you all for checking in on Alexis. She is doing well. She has been very tired this last week. I think that being back on 100 percent chemo has just wore her out. She is taking naps and going to bed early. If all continues to go well they will increase her chemo in Jan. to fit her height and weight. So she is on 100 percent of her height back in Oct/early Nov. Other than being tired she seems to be doing well. That does not mean that I do not worry. She was sweating in her sleep a few nights ago and the alarm went off, please no. She sweated a lot during her sleep before dx. I will never stop worring. This morning as I check my emails, from my on line support group, I learned of another one of the kids has relapsed. My heart is just aching right now. With ALL the odds are good, but not perfect and you never know if they will relapse or not. I hate cancer, it is so not fair for these kids to have to deal with this. So please take time to pray for all of my on line friends and especially those who are facing relapses.

Rachel is doing good. She is now 2 and all of 23 pounds. She loves chocolate and cookie dough, just like me.

Trevor is doing good too. He is 4 months old and is 15 pounds. He will be bigger than Rachel in no time. He reminds us so much of Alexis as a baby. I hate to say it but I have had those thoughts. (will he get IT too). Jeff said the same thing not to long ago. WE try not to worry....

Well I hope you all have a GREAT Christmas and Holiday Season.

Please stop by and sign the guestbook.

Love,
Karen

2004 Christmas Letter


Wow, I can not believe that another year is gone. It has been a roller coaster of a year, to say the least. Jeff is still at Caterpillar. He has been there for 10 years now. I am a homemaker and am trying to keep my license up so I can go back to work someday.

Alexis is doing well. She started LTM (long term maintenance) in Aug. of this year. Not to say she has not had any bumps in the road, but considering everything it is going well. She has been off chemo several times since starting LTM, which should be the easy part of treatment. For those that may not know she was diagnosed with ALL (acute lymphocytic leukemia) on Halloween of 2003. She has handled it well, not that she had a choice, but it is just a part of her life to go to “clinic”. www.caringbridge.org/mn/alexisstern
She is in pre-school and just loves it. It is amazing how much she has learned in only a few months. She has come such a long way in the last year and I could not be prouder. She is such a brave girl.

Rachel is still the adventurous one. She loves trying to keep up with her big sister and does a good job with it. She will try almost anything that her sister does and sometimes things that Alexis would not try. She is also still very petite. She loves anything Alexis does from dinos to dolls.

Then there is Trevor. Yes we had a new addition to our family along with everything else going on. He was born on Aug 12th. He is going to be a big boy, as he is 3 ½ months old and in 3-6 or 6-9 month clothes already. He has started to smile and coo, which the girls just love. Alexis tells me that she knows what he is wanting. Rachel tells me to give him his nuk, or put in crib, or he crying again.


We still have Shale too. She has had her own problems in the last year, but that is a different story. Even with everything going on we still feel blessed. Blessed that we have 3 beautiful children, blessed that Alexis is doing well so far, blessed that we have great friends and family and blessed to have God carrying us on this journey.

May all of you have a safe and happy holiday season.

Karen, Jeff, Alexis, Rachel & Trevor Stern

Friday, December 17, 2004 9:44 AM CST

HI this is going to be short for now. I will try to add more very soon.

Alexis had clinic yesterday. Things went well and she is staying on 100% chemo.

I'll Write more soon,
karen

Friday, December 10, 2004 9:43 AM CST

Yesterday was clinic day again for Alexis. She said that it was a quick trip. Anytime she is accessed, blood taken and deaccessed right away, she says it is a quick trip. Even though we were still there 2 hours, and did not have all of her counts back. Linda let us leave after getting her WBC (5000) back. She called us later that afternoon to let us know that Alexis is back on 100 percent chemo. Her ANC was 3550. That supprised me as we had talked that she would probably go to 75 percent. I think that since she goes back next week again for her routine monthly apt. they decided to increase it to 100. She saw DR Messinger today (he is the main ALL doc) He said she looked great, and that we would probably get sick of the up and down chemo thing. He said that he would rather have a patient that is on and off chemo and ANC between 1000-2000 than one that has a high ANC all of the time. He said that the prognoses is better if the ANC is kept below 2000. Of course evey little cold will make the ANC drop too. So we will keep playing the roller coaster game. I told him we had her MAW trip planned. He wants to see her the week before, which she is scheduled for a spinal tap that week anyway. He wants to check her counts to make sure that everything is ok.

Not much else new here. Still no snow. They said we were to get some last night, but it did not stay cold enough so it was mostly rain. Alexis and Rachel want snow so bad. They want to build a snowman. I just hope that when we do get snow that it will be wet enough to make one. Most of the time the snow up here is dry and fluffy.

Jeff is home sick today. He does not have a voice to talk. Rachel has already asked him to play Putt-Putt on the computer (childs car game, non driving). Maybe this afternoon he will feel up to it. He is still in bed right now.

Well I will let you all go. Thanks for checking in and please take a few to sign the guestbook.

God Bless,
Karen

Sunday Dec 5, 2004 7:22 PM CST

New picture (first spot) on photo page.



Hi again. Well another week as passed. Alexis and Rachel both had colds this week but are doing fine now. Other than the 4 year old demanding things and the 2 year old tantrums. Boy has it been a fun week.
Trevor is currently having a screaming fit, that I am letting Jeff deal with. Luckily this did not happen during church or while shopping.

Yesterday was Santa day at Jeff's employers. We thought it was going to be a good day, but well.... Let's see Alexis was thrilled that morning, but decided that when we got there she did not want to play any games. We did get her to play a few, but not all of them. We went and ate. Then went to see what # they were on for Santa as Alexis was ready to leave (we had been there an hour) They were only on 90 and we were 120, so we asked if we could be in line. They let us but it did not go well. Alexis decided she was to shy and did not want to talk or sit by Santa. So I was having her stand in front of him and handed Trevor to him and turned to help Jeff with Rachel who wanted nothing to do with Santa. Well in the process of trying to get her to move to see Santa the camera was dropped and needless to say broke. Then Rachel went into histarkes (sp) and did the death grip on me. So we have a picture of Trevor, pouty face Alexis and no Rachel. JOY oh joy. We spent the rest of the afternoon looking for a non digital camera. I am not ready to go completly film free. We finally found one, just like our old one, the sales person told us for that you could buy a nice digital. I know but I am just not ready yet.

We finally made it home. I went to give Alexis a quick bath, using the shower head on a hose and guess what it broke so today we went to Menards looking for a new one.

Well I should go as Trevor is still screaming like a banchy.

Alexis goes in for counts on Thursday.
karen






Sat. Nove 27 2004



Hi everyone, hope you all had a great Thanksgiving.

Alexis went to clinic on Friday. Her counts are good (to lazy to go upstairs to get the numbers). So she is back on 50emo. She will go back in 2 weeks for a count check to see if it can be increased or not. Then in the following week for her routine apt.

After clinic we (Mom, Dad, Alexis and Rachel) went to the Science Museum. The Chinosaur exhibit is there right now. (dinos) Cindi and Warren took Trevor, so it would be esier on us. Thank you. :) Anyway it was a good time. Ok we did (I) had to have a talk with Alexis about staying with us and not pulling. So it was a rough start, then she had to wait in line for the dino dig and that did not go well. So we left and went back to it later. Disney should be interesting, so we are working on we will have to wait in line there.

We went and got Trevor, ok we visited with Cindi and Warren and did Chinese for supper with them. They are great friends to us. They had us over for Thanksgiving. We had a great time. Imagine we were one of the first ones there and one of the last to leave. Not that I like to talk or anything : )

Today I did a little shopping, not much and got groceries. When I got home we finished putting up the tree. We ate supper and gave all of the kids baths. I had just got Alexis out of the tub when I heard Jeff say we needed to look in Rachel's mouth. He said he heard her crunching on something, well it was NOT dog food. It was a glass ornament from the tree. GREAT.... Luckily no cuts. So that has been our evening so far. I stole the computer while Jeff was upstairs. Hehehehehe. Is is waiting for me to get off to get back on, when will that other one be done.(He is building one and something for it is not out yet???)

Anyway I hope again that all of you had a great Thanksgiving. Please pray for my cyber friends a few of them are having problems and worring about posible relapses.


Please take a few to sign the guest book as it really does help.
God Bless,
Karen

Monday, November 22, 2004 2:13 PM CST

Tuesday Nov 23

Alexis is feeling better so far today. I had a hair apt. last night and when I got home she was off the couch and doing much better. So far so good this morning. Just wanted you all to know that she is feeling better.

K




Well we had Thanksgiving with the Thompson's on Sat. it was great to get together with them. The kids played well and went to sleep so we could play cards.

Things are going ok today. Alexis went to school today, when I picked her up she said she had a headache. She wanted DQ for lunch. So here we are sitting waiting to get our order. "Mom I don't feel very well". ME 'is it your head' "NO, my stomach hurst" 'do you feel like you are going to get sick?' "yes", ok quick grab the bucket and get it into the far back of the van. She made it home YEAH, but shortly after we got home she got sick. She threw up twice and then went and ate some DQ. She has been on the couch since. She says her stomach hurts and she has a headache. Then she says "can we have Chineese for supper" I don't think so. She is trying to eat an apple now, that is what sounded good to her, I gave her crackers, but she wanted an apple. So I hope that she gets feeling better soon. Trevor and Rachel had a 24 hour thing last week with both of them throwing up so I hope it is that. NO fever which is good. Counts on Friday, but who knows what they will be if she is fighting something.

Thanksgiving day we are going to Warren and Cindi's house. We are looking forward to it. I hope eveyone is feeling up to it.

Happy Thanksgiving.

Karen




Thursday November 18, 2004


Well who said that LTM (long term maintance) would be easy. Alexis has proven that it won't get us off the coaster just yet. Today was her scheduled 3 month apt. It included a spinal tap and IV chemo. The spinal went well. I make sure that the NP or Dr. is in the room when meds are being given. It is a fine line of starting to early or to late. Alexis did great and I am so proud of her.

Her counts were not as good as she is OFF chemo yet again. WBC 2.o RBC 4.11 Hemaglobin 12.8 Platelet 237 and ANC 740 So because she was already on 50nd the protocal says with that ANC to drop to 50o they have pulled her off chemo. They said it was that or give her chemo every other day and hope it does not get to low. So no chemo and back next week. So much for only going in to clinic once a month in LTM, which has only happened once for us. We have been in every other to weekly except for tlhe fist month. She is feeling good and looks great.

She LOVES school. She was upset that she did not have school last Wed. due to FOG. Many of you do not know but we signed her up as a cancer warrior. It is great. She gets cards and things in the mail and prayers too. Her "angels" are great. She started out with one, Sarah and now has 3, yes 3. ( www.cancerwarriors.org ) It is a great program. The angels even are kind enough to send things to Rachel and even little (or not so little) Trevor.

We are hoping to get the plane tickets to Florida booked tomorrow. I am so excited, I think even more than Alexis.

The rest of us are doing ok. Jeff is out of town, should be back tonight. He just left yesterday so a very short tirp which is fine by me.

Trevor had a little tummy bug on Sat. night into Sunday and Rachel had it on Tuesday. (thowing up ) So far the rest of us have not gotten it and hope that we don't. We are to do a early Thanksgiving with the Thompson's this Sat. I am so looking forward to it. We have gotten together with them the last, I think, 9 years except last year. Alexis' counts were to low. We play cards when the kids get to bed, it is a lot of fun. Then on Thanksgiving Day we are going to Warren and Cindi's house. OK I am looking forward to that to. Hmmm won't do the diet I am suppose to be on much good. OH WELL.

I tried to give blood for the fisst time yesterday. I was sent home. : ( My hematocrit was to low 36 and needed to be at least a 38, but hey I tried right. Still felt like a loser walking out without giving. NEXT TIME.

Well thanks for checking in on Alexis.
God Bless,

Happy Thanksgiving,

Karen

Thursday, November 11, 2004 2:17 PM CST

Chemo here we come, again. Alexis had clinic again today. Her counts were high enough so tonight she will start her chemo back up at 50%. HEr WBC 4.3 RBC 4.08 Hemoglobin 12.8 Platelets 387 and ANC 2494 So she will be on 50% 6MP and MTX.

She saw Dr. Messinger today. He is the main ALL doc. He decided to hold off on the CT of the sinuses today. They are going to run another blood test next week, immuneoglobulin (SP). I will have to try to look up what it is for. So no CT today.

She goes back in next week for her scheduled spinal tap and IV chemo. So much for only going in once a month.

Anyway other than her cough, still, she is feeling just fine. Loving pre school and that fact that her hair is coming back.

Well I will try to write more soon.

Karen

Friday, November 5, 2004 10:37 AM CST

Well we made it through the first year with only a few minor bumps, one which is happening right now. Alexis is feeling good, but still has a cough. She had a clinic apt. yesterday. They had not gotten any info about our trip to ER. So I told Linda about it. She asked what counts were then said they took her off chemo right. Thank goodness they did. Anyway a count checked turned into a 3 hour clinic visit. They repeated the chest x-ray, which looked clear and had Amy a NP check her over good. Her counts were better. WBC 2.2 RBC 3.88 hemoglobin 12.2 Platelets 604 and ANC 660. Her chemo is on hold until her ANC is 1000, so we go back in again next thursday so much for the once a month clinic visits. They swithed her antibiotic she is now on Zithromax. She was still coughing so they wanted something different. If she is still coughing on Monday they want me to call in and will see about sending her to a pulmanologist and a ENT. She is feeling fine except for the cough.

She had her first school confrence today. It went well. She says she plays well with others and shares. Is independent and listens and her writing is ok. Wish she would do better picking up her toys at home and sharing with her sister.

We also heard from MAW and we are going to DISNEY. We do not have exact dates yet, but asked for Feb. I hope we get the dates we wanted and to stay at GKTW.

Thank you for checking in on ALexis it means a lot. Please pray for all of those fighting cancer and especially my cyber friends.

God Bless,
Karen

Monday, Nov. 1st. 2004

Well we made through "D" day. It went well. I think I was still tired from Friday night.

Since counts were low, I went to church by myself and Jeff stayed home with the kids. We did the alter flowers and cake. i brought enough cake for 100 people, but we ran out. Ok 1/2 to 3/4 of one of the cakes was gone before church got out thanks to some sunday school kids. Anyway I felt terrible about running out, but they said bring enough for 100 so I did. Usually we do not have that many at "sip and chatter".

Afterwards I came home and listened to Alexis pester us about if it was time to go trick or treating. Finally at 3:00 I said ok. We had a few places we were going to drive to. We did those then came home and went to a few houses. I pulled the girls in a wagon. Alexis got tired so we headed home. We only went to maybe 10 houses. She said that trick or treating was harder than it looked. She was thrilled that she got to eat candy up until bed time since she is off chemo for now.

I will keep her home from shcool this week. She goes back in on Thursday for counts. We will see. I expect that they will still be low, but hopefully high enough to go back to school.

Thanks and God Bless,
Karen








Sat. Oct. 30th 2004

Hi everyone, well the big day is tomorrow. But today I am so tired I don't care. Last night when I was up with Trevor around 1:00am I decided I would go check on Alexis, which I never do, of course usually she is in bed with us. Anyway she was hot. So I took her temp it was 101.8 so down to make the call in the clinic answering service. After talking to the Dr. we decided we would wait a half hour or so and retake her temp, if going up go in if not tylenol and stay home. Well we decided to take her temp while still on the phone with the Dr. Guess what it was going up, so off to Children's ER. Thank you Cindi, again, for coming over in the middle of the night.

In the ER they did labs, blood cultures, chest x-ray and a sinus CT. The chest x ray showed something questionable and the CT showed a major sinus infection. She had already been on 2 weeks of anitbiotics a few weeks ago for one. Guess it did not work. Anyway, they gave her antibiotics through her port and a script for Augmentin (sp). When her counts came back they were low. WBC .8 and a ANC 144. So she will be home bound this next week, until we recheck counts on Thursday in clinic. Tomorrow we got flowers for the alter and cake and she will miss it. Jeff is going to stay home with the kids and I am going to Church and do the cake. We have decided to still let her go trick or treating at least to a few houses. Can not let her miss it 2 years in a row.

Her fever broke on the way into the ER and you would never guess that she feels bad now that the fever is gone. She has been playing all day and is mad at us because she did not get to go to Cindi and Warren's today, Jeff and I were to go Christmas shopping.

Well Rachel is crying so I better go.

Karen


Monday, Oct 25 2004

Notice all that hair.(ok hard to do with dark background) New picture of all 3 on photo page.



If you want to know how Alexis is doing, please go to past journal entries. (ANC 630, which is lower than 2 weeks ago. Chemo dropped to 50

Ok we had the interview tonight. I am still nervous. I think it went well. She said her wish was to go to Dino World and Disney. They said that would be considered 2 wishes. So we picked Disney (Disney is a lot more expensive to get into than Dino World and we were no dumbies to that.) We also hope that if we get to go to stay at GKTW. Her 2nd wish choice was a new computer, like we need 3 in the house. I reall really REALLY hope we get the 1st wish. It sounds like usually the 1st wish is given. Now we have to wait for our cordinator to call us. They said it may take up to a week. UGH more waiting. So please wish for the 1st wish for us.


Sorry this is so long. :)


HI everyone. Well here I sit, Halloween is this weekend and I am going to try to put into words some of my feelings of that day. At times it feels just like yesterday and others it feels like it was years ago.

Back in Sept. of 2003 is when the symptoms first started, of course I did not know it, or how it would change our lives. Alexis had fallen and had been complaining of elbow pain since then. After several trips to our PC and x- rays, they sent her to ortho. He did not think it was anything, by now it was Oct and she was having off and on lowgrade fevers. He said it was nothing. Good thing my instincts told me different. Alexis had also been having night sweats and taking naps, which is not like her. On Halloween I called our PC and talked to a nurse to see if anything was going around. Nothing was. I took her in, it was the worst she had looked. Dr Wineinger looked at her, took a brief history and said it was either Leukemia or a very bad infection. Something inside said to prepare for the worst. After a x-ray and labs we waited.

I can still remember him coming in and kneeling down in front of me. He said he was sure it was Leukemia and we needed to go to Children’s today. We decided which one we were going to go to. I chose the one that I knew where it was, Children’s in St. Paul. We both started making phone calls, me to Jeff and to find someone to watch Rachel. I was fine until Amy, the nurse, asked if I was ok. I said no and started crying. (I think I told my on line support group that I did not cry for about a week, but I was wrong). Anyway, after getting a hold of Jeff to come to the clinic right away and several other phone calls to try to get a hold of Kevin and Michelle I was still numb. Kevin dropped everything to come get Rachel and they kept her until my mom made it up the next day.

It was a long drive to the clinic or at least it seemed it was. I remember Linda putting her hand on my back. She did not say a word but it spoke volumes, especially now when I think back on it. After some discussion on when the last time she had eaten was it was decided that she would have her bone marrow biopsy that night. In less than 2 hours she was in the PICU having it done. There were probably 5 Dr.’s and nurses in the room. They explained what was going to happen and tried to explain the paper work to us. After they put her out we went to find a phone to start making calls to family.

We did not sleep at all that night. The next morning as they were getting her ready to go to surgery we got the true confirmation. They told us after the biopsy that it was, but that was not the official report. So on Nov 1 she had her port put in and her first round of chemo. Dr Wineinger came and found us at the hospital that morning. It was so nice to see him.

You would not believe all the people that were in and out of her room over that week. There were many Doctors, NP, social workers, nutritionalists, psychiatrists and med. students. They gave us more paper work to look at and sign and books to read.

You just feel so helpless and numb. You can not believe that this is happening to you. What did she do to deserve this? NOTHING it is notfair. I remember that she was to get to go home on Tuesday, that Mon evening she started to run a fever. It got to 104. They called the onc. They were going to give her Motrin since the Tylenol did not work. Ok they just spent the last 3 days telling us NO Motrin, now they want to give it to her. They said they had to get the fever down, so Motrin was given. Thank God it worked. Jeff left when her fever started to go down, to take mom and Rachel back home. That was the 2nd time I broke down. I felt so alone. Alexis was sleeping and there I was sitting in this room all alone. I was so scared, I called a friend and just started crying. You just feel so helpless.


We have been lucky that Alexis has done so well. Yes there have been some bumps in the road, but it could be so much worse. She has made it (almost) through her first year, only 14 more months to go. I don’t think many realize that she is still on chemo(EVERYDAY) and will be until Dec of 2005.

To say that the last year has been a roller coaster ride would be an understatement. It has been a full amusement park. Some days you are on a carousel others the octopus or the scrambler and yes a roller coaster.

You see your child evolve from one that screams when the nurse or Dr. comes into the room, which even though they tell you it gets better you don’t believe them. To one that asks when do we go to clinic because she misses Linda (her primary nurse). You see them go from fighting the medicine to taking it pretty good, most of the time. Sometimes she even reminds us that she needs her medicine or to wash our hands good. She makes sure she has her hat on if she goes outside. A four year old should not have to worry about those things, but it has become just a part of her life.

Halloween this year will bring back many memories. I hope to make it a good day, but I am sure that some tears will fall. She does not remember much about her treatment in the beginning, which is good. This year she can go to as many houses as she wants to, because last year she was being admitted into the hospital. She has come such a long way in this last year and I am so proud of her.


How would our lives be different if Alexis would not have gotten leukemia, it is hard to tell. Maybe she would be talking about dino’s and dolls and not dino’s, ports, medicine and Dr apts.

We have learned a great deal with this too. Some people that we thought would be there for us have not been. Then there are those who we did not know that well and they were a big support for us. Although we may have drifted away from some, others have stepped in. Many we could not have gotten through this without them. (Vera, Cindi and Warren, The Lommel’s, Carol, Kim and Kevin and Michelle to name a few and our church family for the prayers).


I have “met” a lot of great people because of this too. Lori and Noah, Noah also has ALL. All of my ALL-Kids support group. The only ones that can TRULY understand what we are going through.

Many people have told us that Alexis got the good cancer. Is there a good cancer? I don’t think so. Yes there is a 80-85 percent success rate, but I doubt the parents of children in the other range think it is a good cancer. The truth is all cancer sucks. I will NEVER stop worrying about her. Every sniffle, cough or bruise makes me wander if she is relapsing. Yes she looks good, but it does not change how I feel. I look at my other kids different too. Are they going to get it or not. Is that a “normal bruise”? I try not to sweat the small stuff anymore. Don’t get me wrong I still get upset, just sometimes it does not matter. I remember early on in treatment just to see a smile on Alexis’ face I would cry. To hear her sing off key to a song on the radio, tears would roll down my face. A simple smile or her singing was a gift. It made my heart smile, when it was so hard to do then with so many unknowns. There are still unknowns ahead but she made it this far and we plan to win this race.

I am not sure what this next year will bring, but we will face it head on whatever it is. Many people say they could not deal with this, well you do not have a choice. You find the strength and courage because you have to. You have to be there for Alexis, your other children and each other. I am not sure why God has taken us down this road, but I pray that he keeps holding us in his hands on this journey and beyond.


Besides dealing with Alexis’ cancer dx, we had other trials albeit small in comparison. Shale, our dog, blew out her knee around Christmas. We had just put our other dog, K.C., to sleep in July. Then Shale relapsed in thrombocytopenia, a platelet problem after her knee surgery. She has had other blood problems in the past. So she was put on high does steroids, nothing like having a dog and child on steroids. She now has a skin disease and will be on steroids the rest of her life. Oh yes I found out I was pregnant. I had just told a friend that I would cry if I got pregnant right now, I did not think I could handle it. God had other plans and we now have a beautiful boy. Which the girls just love and it was and is a good distraction.

Last year at this time I had almost all of my Christmas shopping done. This year I have very little done. Maybe deep down I knew something. I never had my shopping done that early before. I don’t know.

Anyway, thanks for checking in on Alexis and for all of the prayers. She goes back to clinic on Nov. 4 for counts as they were low last time. We will see if they increase her chemo or not.

Someone from my list reminded me that this is also a day to celebrate how far Alexis has come. AMEN to that.



Another friend sent me this in a e mail.
Celebrate that Alexis is in remission and has done an excellent job of battling this disease

Celebrate that you pulled together as a family and were able to do what needed to be done

Celebrate that you taught Alexis how mommies and daddies fight for their children and protect them always

Celebrate that in the middle of all this pain, God gave you Trevor

Celebrate that after all the treatment is over, Alexis will not remember this as the year she fought leukemia, she will remember it as the year her little brother was born

Celebrate that God will watch over you and keep you safe as you finish this journey

Celebrate that you have been able to find lots of help and knowledge through all the other families you’ve met

Celebrate that this ordeal has not left any of you broken but made you stronger in your family, faith and friends

Thank you Michell Z for this, hope you don't mind that I posted it.


Funny, I think of a lot of things I want to say then I get down here on the computer and Poof it is gone. Go figure. I guess looking at what I have wrote so far maybe, I am not at a loss for words.

Please take time to sign the guestbook it really helps.

God Bless,
Karen

Thursday, October 21, 2004 5:26 PM CDT

Well, it seems like it was a long day today, no longer than usual though. Alexis went in for her day 56 in LTM chemo and counts. They clinic was soooooooo busy. It is MEA week here. (no school on Thurs or Fri). They drew her counts and Dr. Messinger came in. He is the main ALL doc and we just love him. He said she looks good, but sinse she had a cold/sinus infection and her ANC was only a 800 2 weeks ago we would probably need to adjust it. He said it is common during cold and flu season to adjust meds. I had also heard that counts can bottom out around the 2nd or 3rd month of LTM, thanks to my on line support group. I was ready and said I was ok with it. What would I do without all of their support and advise. Well after 1 1/2 hours only her wbc, rbc, hemogolobin and platelets were back. So we left and they were to call us. Her wbc was .9 so Linda said she would either be no chemo or lowered chemo and back in 2 weeks. Well her ANC came back at 630 so she is now on 50hemo for 2 weeks. Then she goes back in to have counts rechecked.

We also went to have her semi custom shoe inserts fitted. That took about 45 min. of put them on, walk, take them off, look at her feet, adjust, put them on, walk, etc. She is suppose to wear them on a hour off an hour for a few days to get used to them. HMMM I need to get her shoes back on her.

We are very lucky we have all got our flu shots. Rachel and myself along with Alexis got ours on Tuesday, and Jeff got his today. We were able to get Alexis at our PC after our NP talked to a few people. Rachel did not cry at all. Alexis on the other hand. Screamed as soon as she got on the table. Trevor also had his 2 month shots that day. Sounds like a fun day huh. (Alexis started steroids today oh boy get ready for the big eat and scream, that is what we call it on line)

Trevor was baptized last Sunday. My parents came up and it was a nice visit. It went very well.

When we all were at clinic on Tuesday I had everyone weighed. Alexis came in at 41 lbs. Rachel 23 1/2 lbs both fully dressed with shoes. and Trevor 13.6 naked. What a big boy. He takes after Alexis, solid. I won't tell you what I weighed : )

Trevor slept all night last night. I am sure having the shots helped as he has slept most of the day today. He went from 8:30 pm (bottle)and I did not feed him until almost 7:00 am. WOW huh to bad the girls did not sleep all night.

We hope to go pick pumpkins this weekend. To get ready for Halloween. I can not believe it has been almost a year sinse DX. As I said before I will write more about that soon.

Many of you know that I belong to a on-line support group. I can not tell you what they mean to me. They are the best. And of course they completely understand everything, because they are in the same boat. So Thank you cyber friends. : )

I also signed Alexis up as a cancer warrior. She has a cancer Angel named Sarah (Brian and Rachel). It is a great program. They send Alexis cards and even presents in the mail and keep her in their thoughts. Sarah has been great she thinks of Rachel and Trevor too. She does not have to, but does. So thank you Sarah I know you check up on her and will read this.

Well the pizza is done, so I better go.

Thank you for all of your support and prayers.

I will try to write more soon.
Karen

Sunday, October 10, 2004 7:31 PM CDT

Wow it is hard to believe it is almost mid Oct. This month has just flown by. Here is the latest. Alexis is doing well. She had a bad cough last week so on Mon. I called the Onc office. I spoke with Linda. They had no room at the inn so to speak, so she said we could wait until Tues or go to our ped. I was ok going to our reg Dr. so that is what we did. It turns out she has a sinus infection. She was put on antibiotics for the next 14 days. She still has a bad cough, mainly in the A.M. or when she runs around. I may call the doc again just to see. She says she feels fine and the way she is singing and dancing tonight I know it is true.

When Alexis has had a bath the last week or so we used SHAMPOO. That's right SHAMPOO. OK her hair is only maybe 1/2 inch (if that). But she was so excited. It took more than one glass of water to rinse it out. When she did not have hair it only took one glass to rinse the soap off, now it takes more than one. : ) Oh the little acomplishments. Just think in another month or so she will be complaining about needing to keep rinsing because there is still soap in her hair and then complain about combing it again let alone all of the knots.

On Tues. of last week, she had a apt. to see if she needed AFO (ankle, foot, orthotics). My sitter had to cancel so I took all 3 kids there. It went ok considering I was trying to keep Rachel entertained and Trevor from screaming. She does not need full AFO, but is getting semi custom shoe inserts. I also had a apt that day and got my hair cut. It was a busy day.

All of us are either fighting or hopefully on the up swing on getting over colds. So far Trevor has not caught one. Rachel and I are to get flu shots on the 19th, if there are any left. Trevor also has his 2 month shots that day and I have a post op apt. Sounds like a fun day huh. Trevor is also to be baptized on the 17th. My parents are planning on coming up for the weekend. On the 21st Alexis has chemo and hopefully her flu shot and that afternoon we are going to have her shoe inserts fitted. So that will be a long day in the cities. Jeff is to get his flu shot on that day too, of course if there are any.

That pretty much sums up the last week or so. Alexis still loves school and is starting to learn everyones names. It is so cute that Rachel is so excited to see her when we go pick her up.

Rachel and Trevor are doing good. Rachel is talking more and more and it is so cute when she calls Trevor "Trevy". Trevor is getting big. He must be at least 12 lbs.

I can not believe that Alexis' one year mark is almost here. It seams like just yesterday. I can still remember all of the emotions and uncertainness. She has come so far, yet she has such a long road still ahead. Here OT (off therapy, or no more chemo) date is not until Dec. 26th of 2005. Yes 2005 that is 14 more months.

I will try to update the sight with all of my mixed emotions of the upcoming date. IF you have not read past entries her dx date is Halloween. Lets just say she can go to as many houses as she wants to this year. We have ordered cake for church that day, enough for 100 people (4 cakes), and will do the alter flowers. I am trying to make it into a celebration on how far she has come. I have such mixed feelings. We also wanted to thank our church for all of the prayers and support. A few people like Vera and Cindi we will NEVER be able to thank enough. Vera has done 95f the sitting for the kids. This includes my OB apts too. She has been there for us and we will never be able to show her how much she does mean to us. So if you know her please let her know how much we love her. (I don't think they have the internet to read this). Then there is Cindi oh and yes silly Warren. They have also been great friends. They have watched the kids so Jeff and I could go out to eat and get away for a little while. Cindi also helped out this Summer with apts. We will never be able to thank them enough either. They have become great friends and are going to be Trevor's Godparents. Cindi never minds when I e mail her numberous times a day or gives her a call just to talk, even when it is about nothing. We love both of them a bunch too. Our friends Kevin and Michelle have been there too. Giving us support and a shoulder when needed and a year ago dropped everything to come and get Rachel so we could get Alexis to Childrens.

Well I could go on but you have had enough, ok more than enough today. Thank you for hanging in if you made it this far. I will write more about those mixed emotions soon.

One more thing. Last week I heard that the entire MAW (Make a Wish) of MN board members resigned. I am not sure what will happen. I am going to send in Alexis' paper work in the next week. I hope that it gets approved. We are hoping to go to Dinosaur World in Florida and Magic and Animal Kingdom. I also hope that we can stay at GKTW (Give Kids the World). It sounds like such a cool place. I am hoping that we can go in Feb. and if it works out meet another CB/support group friend. (Kendrie and her family, Kendrie has ALL like Alexis and her mom is a hoot on her CB page).

Yesterday, Oct 11, MAW called to see what was going on. I asked them some questions. I am now so excited for our, hopefully, trip. It sounds like most 1st choices are granted and Alexis is choosing Dino World. She said what she wanted is age appropriate so it should not be a problem, and that we should be able to stay a GKTW. We can move dates a little to stay there. We can also extend our trip which we plan on doing. So I will mail the paperwork this weekend and wait. We have to do an interview and the wait again. They said they like to book things 3 months in advance, which would be Mid to the end of Nov. I hope it all works out, as it should be so much fun. And just think getting out of MN in the middle of winter. : )
KS

Take care and God Bless.

Please sign the guestbook. It really does help.
Karen

Thursday, Sept. 30, 2004

Hi everyone Alexis had her very fisrt field trip this week. Her pre-school class went to the Deer Lake Apple Orchard. Vera watched Trevor and Rachel so I was able to go with. It was also her first bus ride. It was a great morning. Our group started with a tractor ride through the orchad and a small "forest" area. They had fake animals and scare crows and ghosts in it. She said she like the tractor ride but not the smell of the tractor. Which I totally agree with.

Then our group went to the peting area. They had 2 donkeys, peacocks, bunnies, a pig, sheep and goats. I bought some food, but Alexis did not want to feed them so I did along with some of her classmates. She did pet the donkeys though.

From there our group went on a tour of the barn. First they showed us how they pick the apples and how to be careful not to bruise them. Then we went into the barn and saw how apple cider was made and how they sort the apples. Then it was up to the loft of the barn to taste apple cider, yummmy, and some apples. It was a lot of fun. It was a sunny day a little cool, but not bad. I got to ride next to Alexis on the way home. She said she had fun and is talking about going again. Local news channels have been talking about orchards and she keeps saying can we go there. I would not mind trying to go again as a family, maybe to pick pumpkins for Halloween. Wow Halloween. That will mark Alexis' one year. It seems like so long ago, yet just yesterday. She has come so far in a year, but has so far yet to go. Hmm I will write more about that and all the emotions that go with it soon.

Take Care,
Karen



Friday Sept. 24, 2004



Alexis went into clinic yesterday. IT was her 1st trip in since starting LTM. She saw Dr. Messinger (main ALL doc). He said she is doing great. Her counts were great. Right where they want them. So she got her Vincristine and made an apt. for next month.

It was a long day though. Alexis had PT evauation for her legs. The chemo can cause foot drop. They thought that was fine, but in watching her noticed that she was flat footed, things turned in, and hyperextended her knees. After having her "play" it was suggested that we get her AFO splints. I gave them her history of not walking until 18 months, never did crawl (but scooted) and kind of uncordinated. He watched her some more and had her try to do specific things. He said her balance was off and that after doing a simple test on her that she probably had loose ligaments and that is why all of the problems. Ok after he did the one test on her hands, guess who she gets it from, yep ME. He suggested the AFO's because this can cause problems when she gets older and with the hyperextending she can get a knee injury easily if she plays sports. So she will be fitted for the AFO's. Sounds like she could be in them for awhile and they are expensive since they are custom made. Hope the ins. will help pay for them, but either way she needs them.

So after PT we were told that our friends Noah and Lori were in clinic, so we went there to see them. It was great to see them. Noah just finished his last round of ARA-C the week before and wouldn't you know his counts were low. So he was getting a blood transfusion. Lori said he was doing Ok sort of, but he looked great considering. Alexis was pretty quiet, but did like seeing him again. I know I enjoyed talking to Lori albit was not near long enough. Alexis was hungry.

So we went and ate, yes hospital food. I must admit the food there is not that bad, ok not great but not bad. Anyway. From there we headed back up to clinic for her apt. She was happy to see Linda. Saw Dr. Messinger got her chemo then headed to the pharmacy to get meds. Needless to say we were in the pharmacy for an hour. UGH. At least this time I have refills so I can call a few days ahead and not have to wait. So we did not even leave the clinic until almost 4 pm. RUSH HOUR Ok why do they call it rush hour when you can not rush and it takes waaaaaaaayy more than and hour. It took us 50 min to go from St. Paul to Lowrey tunnel in Minn. not good. We got home around 6 pm. Thank you so much Vera, what a long day.

My brother, Roger, and his kids, Miranda and Jordan are coming up for the weekend. It will be great to see them if only for a little while.

Thank you for all the support and prayers, please stop by and sign the guestbook.

God Bless,
Karen

Monday, September 20, 2004 2:40 PM CDT

Hi everyone, Alexis is still enjoying school. She says that she misses me though. I get to go on her first field trip to an apple orchard thanks to Vera, for watching the other two.

Alexis' cold is getting better. She does still cough every once in awhile, but not often. She goes to the clinic this Thursday. She has PT that day also to reivaluate her legs (trouble with heel walking). She constantly is asking me when we are going to go to clinic. She says that she misses Linda.

Rachel is doing good. Trevor is getting big. I just bought his Baptism outfit and hope that it will fit. They did not have a 3-6 month one only the 0-3 month which is only good to 12 lbs. I am sure he is at least 10 and we have 4 weeks before his Baptism. Hmmm what to do.

Well thanks for checking in on Alexis and God Bless,
Karen






Tuesday, Sept. 14, 2004


Wow how time is flying by. Alexis started school last week. She goes 3 days a week. So far she loves it. The last 5 min. of class is spent with Mrs. John telling us what the kids did that day. Usually Alexis will tell me a little more when we get home. She really seems to like it. I hope that continues. She can not wait for next year, because she wants to ride the school bus. I have told her that next year when she is in kindergarden she would ride the bus. So now she can not wait. She has a field trip later this month. I am not sure but I would guess they would take a bus. So Alexis is excited about that.

It is funny. There are things that she used to want help with like getting out of the van, but now she does not need help because she is big. Ok I hope that soon she will be BIG enough not to want my help getting dressed in the morning and BIG enough to SLEEP in her OWN BED. I must admit at times I do like it, but every night gets old. And now her sister is doing it. UGH. I know someday she won't want me around so enjoy it while I can.

She is doing good. Fighting a cold and now a cough at night. I called into the clinic today to see what I can give her. It makes me nervous not knowing where her counts are. I have heard that around 2-3 months of LTM that counts tend to drop bad. Time will tell I guess.

Rachel is so cute. When we go to get Alexis from school she says when she sees Alexis 'there sisste' I think she misses her at little, but enjoys the dino's all to herself without Alexis telling her no.

Thank you all for stopping by and checking in on Alexis. Please take time to stop by the guestbook and say hi it really does help, even with things going good.

Thinking of you, especially my computer friends, all of the time.

God Bless,
Karen

Monday, September 6, 2004 3:25 PM CDT

Wow I can not believe that it has already been over a week since my last post. Alexis is doing great. She is outside right now with Rachel and Dad racing each other. Of course she always wins. (reality check when school starts).

She has been doing a great job taking her medicines. In fact she usually just puts it (them) in her mouth and chews them up. She says that they do not taste like anything. Then she takes a few sips of juice and is done. We used to crush them and put it in a little water so we know that we lost some of the meds. in the crushing process, now we know that she gets it all.

She had pre school open house last week. She is so excited. Her first day is this Wed. Ok reality check for mom to have herself and three kids out the door before 9:00 am. They addressed the chicken pox issue and told them if they have any questions to just ask and that child life is going to come and talk to the kids at some point. I forgot how much work pre school is. Everyday she either has to wear or bring something to school. We have a monthly chart to tell us what( something with the letter A , wear a certain color or clothes to big, bring a fav. toy, family collage, picture of self). And she will have homework, reading (ok me), looking for letters, or pictures and other things along that line. I have a good friend and her school does nothing like this at all. I think this is going to be a lot of work for ME, but she is so excited. I hope that things go well, as she is very sensitive and moody and gets upset/mad easy. I think she is 4 going on 14, but from other friends with girls the same age it sounds pretty normal. She only goes to clinic now once a month unless there is a problem or she gets sick.

Rachel is into repeating anything and everything. It is cute at times, but not others, like when Alexis is having a fit. Rachel has the arm cross HUPH thing down (Cindi we did not need the extra help on that :) ). And is excellent at the big pouty lip.

Trevor is getting big. As for him lets see he eats, sleeps (during the day), and poops. That is about it. Oh he has stolen his sisters hearts ok ours too. They both just love him so much. They are always wanting to hold or kiss on him.

Thanks for checking in on Alexis. Please take the time to sign her guestbook. Even though things are going good it is nice to know you have checked up on her. Even if you just say Hi I was here. Thanks

God Bless,
Karen

Thursday, August 26, 2004 8:40 PM CDT

HI everyone, Well she made it. WELCOME to LTM. WOW I can not believe it is here, just 16 more months of treatment. For those of you that don't know LTM means Long Term Maintenance. Her scheduled end date for Chemo is Dec. 26 of 2005.

Things went well today. We had a different NP but things went well. I told her about the problem with the spinal last time and said I was pretty sure it was due to the versed wearing off. She stayed close and when the versed was being given she came into the room so we were ready to go. It went as usual. Alexis says that she likes spinals again. We will only get them every 3 months now. She only goes in every month now for exam, counts and Vincristine (chemo). Which is a bit nerve racking. She will get a 5 day pulse of Decadron every month which we give Pepcid chewables with instead of Zantac now. She likes it better that way as the chewables taste better. She will get oral Methotrexate (chemo) once a week (5.5 tabs) except on her spinal day. And she will get 6MP every evening before bedtime (on a empty stomach so no bed time snack). That I think covers all of the meds. OH she will still get her antibiotic on Mon and Tues. too. So baring any illnesses and that this will be our schedule for awhile.

She has a P.T. apt. in Sept. to re evaluate her foot problem.

Well I hope all is going well. I need to go as Trevor needs fed.

God Bless,
Karen

Sunday, August 22, 2004 6:08 PM CDT

Sorry it has been so long since I have updated Alexis' sight. I have not been on the computer in about a week.

We were hoping to start LTM on the 19th but her counts were not high enough. Her platelets were fine, but her ANC was only 680 so we will try again for this week.

Things are going well. I think Alexis' has been blessed with my allergies. Mine are getting bad and Alexis has started to complain about her nose being ishy and sneezing a lot. I will ask this week about it.

Alexis and Rachel just love their new brother. They are always wanting to hold him and kiss on him. If Alexis holds him then next thing I know Rachel is there saying hold too and vise a versa. He sleeps great during the day, of course, and I am up every 2 hours or so at night. I don't think he likes his bassinet. I may try to put him in his crib soon to see if this helps. We put him in his port a crib today thinking if he does not like the openness then he will be awake more during the day and tired at night. Well he has been sleeping in it fine, so his days and nights are crossed, so another sleepless night for me again.

Thinking of all of you, especially my computer friends.

Karen

Sunday, Aug. 15 , 2004 9:15 PM CDT

Mon. SORRY WE ARE HAVING TROUBLE WITH OUR PICTURE PROGRAM. IT WILL NOT LET US RESIZE. WE ARE WORKING ON IT.
KS




It's a BOY. We welcomed Trevor into this world on Thursday Aug. 12th at 2:34AM. He weighed 7 lb. 4 oz and was 21 1/4 inches long.

Many of you may know that I was to be induced on Mon. the 16th. Well I guess he decided he did not want to wait that long. Both Alexis and Rachel were induced. I guess he needed to be different. So those that do NOT want the details please skip down. : )

I woke to use the bathroom shortly after midnight to find when I stood up whoosh my water broke. I had been having some contractions off and on Wed afternoon and evening, but nothing major or consistent. So after trying to run to the bathroom and going ok my water just broke. I woke Jeff up and said I was going to call the hospital. He got out of bed, I went and called. When I went to tell him we needed to go in, of course, he was back in bed. Anyway I called Cindi at 12:20 and we loaded the van with the cord blood kit and stuff. By the time Cindi arrived my contractions were 3-4 min apart. We are about 45 min from the hospital. We got there in about 30-35 min and my contractions were 1-3 min apart. They put me in triage, not sure why they had a room ready. Checked me I was a 4. I told them again to call for my epi, which I did over the phone and that there was merconium (sp) in the water. After being in triage for 30 min I was moved to a room. I was now a 7 and not happy. They called for annestialogy (sp) again. 5 min later I was an 8. Ok now I am thinking, Not again, I really want an epi!!!! Finally he shows up. By the time I got it I was ready to push. No Dr. in the room yet though, so luckily the epi kicked in or else the Dr. may not have been there. He asked if things have been explained because of the merconium, I said yes. They did NOT want the baby to cry at all. They wanted the birth to be as quiet as posible so they could suction him out. They also had a neonatal NP there to work on him. I push maybe through 5 contractions and there was his head. They were able to suction really good, then delivered the body and handed him off to the NP and nurses to be worked on. The Dr. collected the cord blood and stitched me up. Trevor was having trouble maintaining his temp. so I did not get to hold him for awhile. They finally wanted me to kangaroo him, I did but his temp was still low so back under the lights. I took about 2 hours to get his temp up and then Jeff was able to hold him. It took us until that evening when my mom and the girls came to see us to name him. Ok we were leaning towards Trevor but Alexis made the final decision. She loves her brother so much already. She wanted us to go home that night, but I said no in a few days. They came again on Friday too. Even Rachel is interesed in him, but she still wants mom to hold her. So that is it in a nut shell, so to speak. I have to call first thing in the morning as the Ped Dr. wants us to come in to make sure he is not jaundice. We did start to supplemt him on Friday night and are still doing so. He eats 1-2 oz after nursing. Things are going well so far, but my mom will leave in a few weeks and then reality will be here.

Alexis of course did not make it to clinic on Thursday. I called and talked to Linda and we decided that it was ok since things are going good and I was not concerned about anything. We will go in this Thursday the 19th for counts and if high enough start LTM.

Thanks for all the thoughts and prayers,
Karen



Wednesday, Aug. 11, 2004



HI Alexis goes in for counts tomorrow, but I need to update about the Relay for Life. It was last Friday. Alexis did not go because of Jeff needing to run the sound board for church. She for some reason wanted to go to Karen's and play and not go to the Relay. HMMM. She did get a survivor shirt and pin. I hope (plan ) on her going NEXT year. It was a great night. NO I did not walk that much, but it was fun and I saw Terri and Bailey. Bailey HAD JMML and is doing great. It was nice to get to see and talk to them.

Our team will be getting a medal for the most money raised per person. (total $ divided by how many on the team). So a BIG thank you to everyone who was able to donate. I know who you are and can not thank you enough. I even held it together, last year I cried, ok more like blubbered, through the whole opening ceramony. This year I was prepared and did fine. I think it helped that Alexis was not there. Anyway if you have never gone to a Relay before you should. It will touch your heart in a way that words can not describe.

Thank you again and God Bless,
Karen

Thursday Aug. 5, 2004

Just a quick update. Alexis went in for counts and exam today, no chemo. They said she looked good considering where she is in treatment. She is pale and still has a slight cough, but is doing good. Her counts are WBC .8 RBC 3.06 Hemoglobin 8.5 (at 8 they transfuse so she just barely made it) Platelets 254 and ANC 480. Her counts should be on the rise over the next week, although I will have to keep an eye on her still. So she is doing good and will go back next Thursday again for counts and exam.


The Relay for Life is tomorrow. I was hoping that Alexis would go, but Jeff has to run the sound board for a wedding on Sat. and rehearsal is Friday at 6:30. I have asked her several times if she wants to go, but she wants to go to Karen's and play, so I guess I will be going by myself. I tried to talk Jeff into bringing the girls after rehearsal, but he said it would be to close to bed time, which it would but I was still hoping. They did get her a survivor shirt.

I hope everyone has a good weekend. Wow Aug already.

God Bless,
Karen





Sunday, Aug. 1, 2004

Well Alexis had her last round of ARA-C tonight. I can not believe it was her last one. LTM (long term maintance) is just around the corner, then just 16 more months. YES 16. Her scheduled end date is Dec. 26 of 2005.

She has a cold right now, and her cough is worse in the morning, but no temps so far. She is still very moody, which I think is just her.

She woke up this morning and said she did not feel good and did not want to go to church. We said ok, then she said that she did not want to give anybody HER cold. Do you think we have talked about her not getting other peoples colds before?

Warren came over for supper Sat. night. The girls had a blast. I hope that Warren did. They would not leave him alone. We sent him home with cake, and this morning he told me to tell Alexis that is what he had for breakfast. I told her and she said that it was not very nutritious. She said he should have cereal or an apple before candy. HMMM do you think I can tell her this back when she is asking for candy in the morning?

Anyway I hope that her cold gets better soon and that the rest of DI#2 goes well. She goes back in on Thursday for counts and a exam.

Please pray for all of my computer friends a lot of them have had trouble this week.

We are so blessed that Alexis has handled things well with very few complications so far. It makes it so much easier on us as parents.

God Bless,
Karen






Thursday, July 29, 2004


Hi everyone. Well another day at clinic. Although this was a quick trip. Alexis and Rachel both have colds now, and Rachel is still getting hives. They looked Alexis over good before giving her her chemo. They said she had a cold, sneezing, slight cough and runny nose, but looked great considering where she is in DI. Her counts came back good. ANC was actually up. It should be nose diving here very soon. Anyway she got her ARA-C at clinic and we will give it at home the next 3 nights along with her TG. We are keeping her on Zofran at night and will probably through the end of DI. They told us to give her Nighttime Triaminc to see if it helps at night.

She has felt pretty bad all day, but since Jeff has gotten home she has been doing good. Amazing what dad's can do. In fact her and Rachel are in the other room dancing to the Shrek (first one) sound track. Well I am going to go join the fun.

Please keep all of my computer friends in your prayers many of them have been having a lot of problems this last week.

God Bless,
Karen

Friday, July 23, 2004 5:13 PM CDT

Hi Everyone,

Yesterday Alexis got started with the 2nd half of DI#2. It was a long day. We got there 10 min. late as traffic was bad. Then it took them 20 min. to check us in. I could see our nurse waiting, as Alexis does not have labs done until that day, and it was a count dependent day. So she got accessed and it took an hour to get counts back. She was a go for her Chemo. WBC 2.7 RBC 4.07 Hemoglobin 11.4 Platelets 405 and ANC 1080. Her platelets needed to be at 100 and ANC 0f 1000. Linda started to get the room ready and went and got Dr. Messinger. He looked her over and then left to check on another pt while Alexis started to get her morphine and versed. Needless to say it was about 11:15 when we got started with the procedure, a spinal tap. It did not go well. It has not been this bad since Consolidation. I think they waited a little to long after giving the versed. Anyway she felt the needle and jumped and then tensed up. She cried and cried and moaned it was terrible. The Dr. asked Linda if the versed was given, it was. He said he would try one more time and if he did not get in then we would stop and give more sedation. He finally got it. Then afterwards it did not close right away and started to get puffy and he held pressure on it and cleaned it with alcohol as he did not want it to get infected. I hope the next one goes better.

We were moved to another room for more IV fluids and her chemo. She got Cytoxan and more IV fluids, about 3 hours worth post chemo. Then before we left more Zofran and her ARA-C (chemo). Alexis was feeling pretty good. We went to the pharmacy to get her TG (oral chemo) and left the clinic around 4:00, just in time for rush hour. We got home around 6:00.

Dr. Messinger said we need to keep an eye on her bottom where the tear was and to keep her on the Lactulose and give soda baths for awhile longer. He also is going to send a referal in for PT as she has tight calfs. Can not really walk on her heels with her toes off the floor. This can be a side affect of Vincristine.

She is feeling pretty good today. Did take a nap and asked for Zofran this afternoon. Jeff and I will give her oral chemo for the next 2 weeks and ARA-C through her port through Sunday, then I will deaccess her.

On a side note. I was up with Rachel last night from 2 until 4. She would not settle down and was itching. I told Jeff it is like she had a rash. So I finally looked, yep had a rash. I even went and got Jeff out of bed to look at it. He took her then and we gave tylenol and I went to Google rashes (poison ivy etc.). She finally went to sleep so Jeff put her back in bed in the mean time Alexis woke up and I put her in our bed. It was now 4:45am. Jeff went back to bed knowing I was going to try to get Rachel into clinic in the morning, but can not call before 7:00. I jumped in the shower, yes at 4:45. Our church senior youth mission team was leaving for New York. So I went to see them off. I know a few on the team and am close the the leader or mother hen of the group, Cindi. I got home a little before 7:00. Rachel woke up and I looked at her she looked better. So a few min. later when Jeff got up we had to decide whether of not to take her in. I found a few spots left so I did. Well it was hives. yes hives. They did a strep culture on her which was Neg but they did see a few red spots in the back of her throat, so it is a virus. They think the hives is just a way her body if reacting to it. ODD. But at least Alexis can not catch the "rash" hives.

Anyway we hope to go to the Zoo (Como) tomorrow. Alexis can not wait. WE figured if we did not go this weekend then her counts would plumit and then the baby would be here. So we are going tomorrow. Alexis is usually very protective of her port so we were not sure if she would want to but so far really wants to go.

Well I have been rambling long enough. Please pray for all of my computer friends and the mission team.

Please sign the guestbook even if it is just I was here. It really does help.

God Bless,
Karen

Sunday, July 18, 2004

Alexis is feelilng pretty good right now. Eating everything in sight. Well sort of, she is still very picky. Been on a protien crave. Ate more steak tonight than I think Jeff and me combined. She has also been wanting Dairy Queen chicken strips with sauce. You would think she was on steroids the way she has been eating. Her face is round again and a littl pouch belly. I know though that the next part of DI can get rough and no bed time snacks with her going back on TG (oral chemo). Anyway things are going as good as can be expected I guess. Worried about how things are going to fall in the next 5 weeks or so with Alexis being in a critical phase of treatment where counts will be low and me being due to deliver. And then there is Rachel. Jeff rigged the dog food container so she can not get into it so far. She still likes to peel and eat crayons and has the dog eating them now too. She also likes to undress herself and take her diaper off. Only seems to do it for us though not Warren and Cindi, go figure.

Warren and Cindi came over on Sat to watch the girls so Jeff and I went out to eat with Kevin and Michelle. It was a lot of fun. Then we came home and played cards with Warren and Cindi. We are so blessed to have them come over and help out. I know Alexis loves it when they come. This morning she asked when could they come back. It is a great feeling to know she loves them so much. So Cindi and Warren if you read this there is no amount of apple pies or thank yous that we could ever give you to show what you mean to us.

God Bless,
Karen







Tuesday, July 13, 2004


Hi again, Well if you are checking in on us to see if we got started up on Thursday, our normal clinic day, the answer is NO. Yesterday, Monday, I called the clinic as Alexis (ok gross potty talk coming) had blood in her BM. She had it several times over the weekend. Bright red. I looked to see if I could see a cut, but did not see anything. So I called the clinic. At 12:00 they called me back saying they needed to see her, which I should of known since she is in the middle of DI. Anyway they wanted us there by 1:15. I said we live about 55 miles from clinic (so there is one hour) and I just put another hot dog on for Alexis. They said get here when you can. I did not tell them that I did not have a face on and that the girls were not even dressed yet. Yes I know it was Noon, but..... I tried to find someone to watch Rachel with no luck, I only had 15- 20 min to do so. So she came with us, now I know why I get a sitter for her. Anyway, we got to clinic around 1:40. Alexis had to go potty so off we went. Then they did the ususal height and wt. (she has gained 2 lbs in the last 2 weeks), BP and temp. Linda our nurse is on vacation so we had a new one. She was great. She accessed Alexis' port, Alexis did not cry or even sit on my lap, drew counts and then we waited. Amy (NP) came in and did an exam on Alexis. She said she looked good, but did find a small tear in/near her rectum. So she wanted to wait for counts to see if a antibiotic was needed. If her ANC was ok the no anitbiotic if it was low then she was to get one. Her other counts came good. Oh they also wanted a UA on her, so we tried to make her drink so she would have to go again. She finally did, and then complained that her stomache hurt. So Amy came and looked at her again. I gave her a Zofran (love the disovable ones). About 5 min later it happened. She threw up everywhere, of course I did not find a basin in time. We got her cleaned up and laying down. They decided to give her IV fluids and moved us to a different room. During this time her ANC came back. It was a 161, she has not been that low since Induction. So she is getting antibiotics. They gave her about 1 1/2 hours of so of IV fluids and sent us home (during rush hour of course).

Now I get to try to keep her meds straight. Let's see. She gets her usual anitbiotic on Mon and Tuesdays. Then Diflucan 1x a day for 10 more days for thrush, and zantac 2x's a day ( going to try chewable pepcid tonight) fror 3-4 days, Lactilose 2x's a day for 3-5 days (laxitive) until poop is mushy but not runny or I am to lower the dose to 1x a day,and her new antibiotic, metronidazole (also known as Phalygel)3x's a day for 7 days (horrid tasting) I think that is all of them. Plus I have to remember if I pilled the dog who is on Prednisone 2x's a day, and take my glucose tests and ketones and vitamins, and keep Rachel in a diaper or not eating crayons. UGGGGGHHHHHH

So needless to say with a ANC of 161 we cancelled her apt. for Thursday and rescheduled it for next Thursday the 22nd. Which pushes her low count time right about the time I am due. HMMM could get interesting. I think that covers it for now.

Thanks for checking in.

Please continue to pray for all of my computer friends and Lakota as they fight their battles too.

God Bless,
Karen

Thursday, July 8, 2004 4:07 PM CDT

HI everyone,

Although Alexis has been very tired this last week today she seemed to perk up. She had clinic today. NO chemo just for exam and counts. We are going to have her evaluated by PT again when she starts maintence, as she can not walk on her heels. Never really could, but they want to look into it. She also has thrush. So much for telling her she only had 2 more days of meds. She will take something once a day for a week then rechecked to see if she needs the 2nd week. Other than that she looks good. Counts were better than I thought they would be considering how she had been acting. I know that the Dex can boost ANC, so we will see if she can get started back up next week. Her counts today were WBC 3.1 , RBC 4.55 , Hemoglobin 12.6 , Platelet 371 , and ANC 1.860

She was a little chatter bug today. Which was great as she has not said much in the last 2 weeks or so. She was telling Linda everything she has done or was going to do. She even told Amy (NP) that her wish was to go to Disney World. They have not heard her say this much in weeeks and weeks. Linda finally just sat down and let her talk to her for about 10 min (don't know where she gets that from : ) ). She told her about 5 times that she was going to Applebee's for chicken and yummy french fries. So we picked Jeff up from work and went, you guessed it, Applebee's. She has had 3 snacks since we got home and keeps asking me to turn on the grill to make steak. OK she did just stop the Dex yesterday.


On a side note. This week and next was when we had planned to go back to Illinois to visit family (both sides) and go to the Chicagoland NASCAR race. Jeff's parents have NEVER seen Rachel so it would of been their first time to see her. And well me being a HUGE NASCAR fan had to give up the race and pit passes. It would of been our 2nd race ever, but the 1st time with pit passes. OK OK being 34 weeks pregnant in 90 degree heat would NOT have been fun, let alone worrying if Alexis was doing ok.

Anyway please pray for all of my computer friends and especially Lakota. She is still having some problems after her transplant.

Alexis has lost the hair on the back of her head. She usually sleeps on her back. So smooth in back and fuzz on the top and sides, at least for now.

OH yeah I AM STILL TAKING DONATIONS FOR THE AMERICAN CANCER SOCIETY RELAY FOR LIFE UNTIL JULY 30TH. : )

Take care and God Bless,
Karen

Wed. July 7, 2004

Hi just a quick update on Alexis. She has been very very tired this last week. I think that this round of chemo has hit her hard. Says she feels ok, just tired. Lays on the couch most of the time. We have went shopping a few times only to have her wear out after an hour or so. Then complain how tired she is for a day or more. She is upstairs on the couch laying down. She has been there all morning. She goes into clinic tomorrow for counts, NO chemo.



Friday, July 2, 2004
Hi everyone,

Alexis is on the rollercoaster of emotions. I know what else is new. It does not matter if she is on Dex (steroids) or not, although it is worse when she is on. So far this morning she has spent most of it in her room pouting. To start things off I would not go to Hardee's to get her a ham sunrise crossiant at 7:00am in my jammy's. The closest Hardee's is about 15 min away. I did say that we could go tomorrow as a family but that was not good enough. Then her cereal did not taste right. Then she did nap for about 30 min. and now back up in her room because the fruity pebble milk does not taste fruity pebblish enough. It may be a long day. She did start Dex up again yesterday, her 4th Birthday.

Her apt. yesterday went well. We saw Dr Smith he is so funny and will answer anything you ask. He said that she looked good. She is getting some mouth sores again. He gave us a script for Magic Mouthwash with Lidocane and Tylenol with Codine if needed. Alexis is on day 14 of DI#2. So she got her 3rd and FINAL round of Doxo and then Vincristine which she will get until she is completely done with all of her chemo and Zofran. Her counts were ok. WBC 1.2 , RBC 4.39 , Hemoglobin 12.4 , Platelets 243 , and ANC .576 . Time will tell what will happen with her counts. Next week she has a off chemo week, but we will still go in for counts. We are scheduled to start the 2nd half of DI on July 15th. Ususally you get delayed a week or two because counts are to low. Her platelets need to be at 100 and a ANC of 1000 or 1.0. During her 1st DI we were delayed one week, so we are expecting that this time too.


Oh yeah, at clinic they sang happy birthday to her and gave her a cute teddy bear. It was so nice of them to think of her birthday.

Matt and Alyssa came with Vera too. They decorated the house with birthday banners and balloons. Alexis did not appreciate it though. She told me she liked the house the way it was. One can never win.

She has been pretty tired this last week, which is to be expected. We had her party on the 26th, she had a lot of fun. It was a really nice time for all. On Sunday she did not want to go to Sunday school, which is unusual for her. She stayed with me in Church and fell asleep in the pew, and Rachel fell asleep on my lap. She has napped off and on all of last week. One night, can't remember when, she fell asleep at 5:00. We thougth for sure she would wake up, but at 9:00 she was still asleep so we carried her to bed. She slept until 5:00 the next morning.

On Tuesday I had a OB apt. so Cindi came to watch the girls for the entire day. It was a great get away. I went to my apt., had lunch with a good friend, did a little shopping and got my hair cut. Alexis said she missed me. (BIG SMILE on MY face). When I got home Warren was here to, Cindi's husband. After they left Alexis told me how much she missed them several times. She loves it when they come over. OK so do I. : ) We will have to have them over again soon, who knows maybe next time we will stay home and visit or maybe we will go out to eat first. I owe them so many homemade apple pies. I pay them with apple pies.

I put 2 new pictures on. They are a bit blurry. I tried to scan them in and I am not very computer savvy. The first is of Alexis and her pink castle cake. No I did not make it. All I had to do is put on the sugar cones and the middle cones. Kathy left me the frosting to do it. It tasted as good as it looked. The second is of me and the girls. I have a lot of computer fiends and I just thought they might want to see what I looked like. Always helps to have a face with the name.

I AM TAKING PLEDES (DONATIONS) FOR THE ACS RELAY FOR LIFE UNTIL THE END OF JULY. THEY ARE TAX DEDUCTABLE!!!!!

Thank you for all of your support and prayers.

Karen

Thursday, June 24, 2004 8:19 AM CDT

The girls had me up bright and early again at 5:00. Only today they both fell back to sleep. Why can't they do that when we don't have to be somewhere.

Anyway, Alexis had chemo again today. She has been pretty quiet at clinic lately. She finally told me 2 reasons 1. she is tired of going to clinic, ok can't blame her there. and 2. her stomach was sleeping and she did not want to wake it up because she would of been hungery.

She got her Doxo and Vincristine and zofran. Her counts look good, so she asked if we could go inside to eat. We did, we went to Arby's. Seems like when she is on Dex she likes Arby's curly fries, or as Alexis calls them spicy fries. Things seem to be going good. Wish we could get her to sleep in her own bed all night. Yes we are whimps and cave in. We still take things a day at a time, sometimes a min. at a time. She should finish up this hard round of chemo right about when the baby is due. It will be close. The last 2 weeks is when they expect very low counts, hospitalizations and transfusions so we will see what happens.

Please keep my computer friends in your prayers, as they to have children fighting this monster. Also say prayers for Lakota. She has been through so much and has lost a brother already to this. She was to have a bone marrow biopsy today to see if it is all doner cells or not. She had a cord blood transfusion.

Thank you and God Bless,

Karen





Monday, June 21, 2004


Today was day 4 in DI#2, which meant Peg shots. Needless to say Alexis was NOT a happy camper. She started to cry when I put Emla on her legs. She did not talk to anyone at clinic and screamed when they came in to give her the shots. She did say goodbye once she was deaccessed and was ready to go.

They did counts today, as she has been complaining of being cold. It has been below normal here, but not that bad. Her counts were great. ANC of over 5000, which still makes me nervous. She had me hold her the entire time we were there and NO movie which is not like her. I had here wrapped in 2 blankets too. My lap is not big enough to hold her so my back and neck hurt now. Oh well.

We are going to try a new laxative as she does not want to drink anything, especially if it has Miralax in it. So we are going to try a liquid that is sweet. (to lazy to walk up to look at the name, it't like lactilose). We need her to keep intaking fluids, especially during DI.

Jeff heads out of town early tomorrow morning and will be back late Thursday. WE are having a early birthday party for Alexis on Sat with her pink castle cake. Her actual birthday is July 1st.

God Bless,
Karen





Friday June 18, 2004


Welcome to DI#2. That's right, Alexis got started with her last heavy round of chemo before LTM (long term maintance). She is now on steroids for the next 7 days then off 7 then on for 7 more. WE are going to try vioxx on days 6,7,8,9 to see if it helps with withdrawal. What little hair she has (peach fuzz) will fall out with this round of meds again. She goes in on Monday for Peg shots (another form of chemo) then every Thursday for the next 2 months.

Her counts were great, which still makes me nervous on whether or not they are to good. Her WBC 3.6 RBC 4.42 Hemoglobin 12.4 Platelets 446 and ANC 1.836. Her platelets needed to be at 100 and ANC 1000. She counts are expected to drop. Time will tell how low they go.

Jeff will be out of town next week for a few days. So please pray for his safe travel and patience for me. (Alexis is on steroids).

I am now taking pledges for the Relay for Life. Let me know if you would like to help the cause. (Tax deductible).


Take care and God Bless,
Karen

Wed June 9, 2004

Having a better day so far, it is only 8:30 am. I think that yesterday with everything going on it finally got to me. CANCER SUCKS!!!! If this is so "curable" then how come so many are relapsing and dying.

Alexis is doing ok. A few mouth sores but not bad, yet. We had thunder again last night so Alexis was in bed with us and wouldn't you know it at about 1:30 here comes Rachel running down the hall. Ok our bed in not big enough for 3 kids. Alexis did get sick around 5:00 this morning. Seems fine now. Not sure why. Took Zofran (disolvable) she liked it, a lot more expensive than the pills, but I can carry these with me.

Karen


Tuesday June 8 2004

Well, I have stuck my foot in my mouth today. I sit here now with tears rolling down my face. I replyed to the ALL list, which I get nervous doing as I don't want to offend or sound completely dumb. I was sent a reply off list. I thanked the person for all of ther great info, which I did not know, only to at the end say hope that so and so was doing good. I was sent another reply that their son had passed away several years earlier from ALL. I feel so stupid and my heart breaks everytime I hear of a child who has lost the battle. I just want to crawl into a hole right now and never come out. I am not sure when I will post on the list again as I don't want to make that mistake again. I will sign off as I can't see what I am writing anymore from all the tears.
Karen





Wed June 2 2004

I am now taking pledges for the Relay for Life, so let me know if you want to help this cause. : )



Well today was day 40 in IM#2 (Interm maintenance). Alexis was happy to see Linda, our main nurse. She got accessed and had labs drawn. We watched movies, as usual, while waiting for labs to come back. Kristen, a NP, saw Alexis today. We really like Kristen. She does a very good exam on her. She has her raise her eyebrows, stick out her tongue, walk funny and things like that.

When Alexis' lab came back she barely made the cut off. She needed to have a ANC of 1000 and she came back at 1008 to get her excalating Methotrexate. So she got all of her chemo again. We are expecting more mouth sores. They were pretty bad this time. She still has some and we expect it to get worse. She did not feel good most of last week. Took naps which she never does, and on Wed. started running a low grade fever. So we kept a close eye on her. We can not give Tylenol when she has a fever, as we need to see how high it will go. If it gets to 101.5 then we have to call the clinic and most likely go in. So NO Tylenol for fever. I know backwards. She complained that her throat hurt so we think she had sores in her throat too. She is scheduled to go back to start DI#2 (delayed intensification) on June 17. It will be count dependent. So we will have to see if she gets started or not. If she does it will mean the hard meds again and a spinal tap.


Just a side note on Rachel today. I had just given both girls a bath. Alexis had decided to go to bed. She gets to start out in our bed on clinic days. I was on the computer checking my e-mails. (I joined a support group on line so I have a lot to go through. Very Very helpful though). Jeff came down looking for Scooby and said "Rachel", I knew she was into something. And there she was, just bathed with clean jammys standing in the dog water. She is our little stinker. PS any advise on biting, she does that too. : )


Someone on line today posted this and I feel it is so true.

"Every flower must grow through dirt"

"Some of us just have a lot more *fertilizer* to push up through."

Oh so true.

Take care and God Bless,
Karen

Tuesday, May 25, 2004 7:26 AM CDT

Hi everyone,

Alexis had her day 30 of IM #2 yesterday. It went well as usual. She got another spinal tap. She did great. She is actually starting to like them. HMM maybe it is the morphine and versed they give her. By the time her spinal was done her counts were back. She was a go for all of her chemo. Even though she is at a higher dose, it is given over 10 min instead of 20-30, so we are not there quite as long. She did not feel good after her spinal, not sure why. Usually when they say she can drink and eat a little she does. Not today, she did not want anything. At one point she even told me she was going to be sick. Her chemo was done before we finally got her to sit up. She was deaccessed and her BP taken. Linda did not want us to go until she saw her eat at least a few bites. She finally did and we were on our way. She ate a little lunch then played outside for about an hour, then laid on the couch until 6:00 that night not feeling good. So far this morning she seems ok.

I must admit that having good counts platelets in the 400's and ANC of 1.9 makes me a bit nervous. I mean are they to good. The oncs say things are fine, but you know counts should be a little lower. Last time they were below 1000 or 1. and she was on a lower dose. For now I will have to trust them, but I will still worry. : )


Alexis is finally over her cold. Rachel is no longer running a fever. She had one for 4 days last week. Although she did fall into the coffee table last night and split her lip and bruised her gums. ouch. Because of her fever last week Rachel did not go to the circus with us. It was for the better, as I don't think she would of lasted. So thanks Cindi. About the circus, FIRST NO we were not there when the accident happened. Thank GOD. In fact we did not know anything had happened until we go home that night. We knew that 3 of the high risks acts were not done, but never thought about why. (one of the performers fell 30 feet, the acts she and her family were in were not done. Sad to say she did not surrive) We did have a good time. We sat with 2 other CK familys, in a Suite, one we did not know and the Hurley's. Alexis was ready to go find our seats when we ran into them. That was it. She wanted to sit by Noah. I think they all had a great time. She has talked about them a lot and has asked if we can get together with them again. It was so nice, the suite. We had a room with tables, big screen TV, and our seats. The seats were leather very comfy and had a snack tray. They also had brats, popcorn, m&m's, cookies, snack mix and pop and water for us. The kids could get up and move around and talk and play. Ok so could the parents. It was great, but the best part was being with friends and seeing the kids laugh and smile.

Please pray for all the kids fighting this monster and especially Lakota. She is to have a cord transplant today. Her sight is www.caringbridge.org/mn/laplafcan.

God Bless,
Karen

Monday, May 17 2004

Well it was a unexpected trip into the clinic today. Alexis has been fighting a cold, and today complained of a sore throat. She also told me that I was not a good mom and was not taking care of her. I knew right then that she did not feel good, and I don't know where she got that from(tv), I was upstairs trying to sort clothes to wash. I called in and they said to be safe we should come in. We all loaded up and headed in, including Rachel. Her counts looked good. She did have a red throat so they did a culture for strep, but so far negative. They will run it for 24 hours to be sure. They also did another UA as she is still having a lot of accidents and we are not sure why. If I remember I will have them ask the Main ALL doc on Monday. They went ahead and gave her IV fluids while we waited for labs and eveything to come back. They sent us home and told us to keep an eye on things. They do thnk that she is starting to get mouth sores. She has not complained as of yet. The NP look up from the last IM to see when she missed her Meth dose and started with the mouth sores. It was at her 3rd dose, which was last week. In fact she has already gotten a higher dose of meth this time than her highest dose of the first IM. (does that make sense?) Last time her highest does was 120, last week she recieved 145 and has one more round or is it two to go, next Monday.

As for taking Rachel, it was a adventure. She was good though. She wanted to explore everything.

I ask that all of you pray for my computer friends who are also fighting this battle, especially Lakota. Please check out her CB sight at www.caringbridge.org/mn/laplafcan

Thanks and God Bless,
Karen





Saturday May 15 2004

Hi Last Night was Noah's benefit. We got there early, as we were notsure on traffic or where it was. It worked out as we saw Noah and I got to talk to Lori for a few min. There was a huge turnout and it was a lot of fun. I wish we could of seen more of the entertainment. I saw all of 5 min of it, as Alexis was having a hard time with all the people and noise. So we left before it really even started. It would of been neat to see as there were clowns, magicians, jugglers and more. But Alexis just could not deal with it. She even refuse to take off her coat and hat, which never happens. She did have fun though. She got a flower balloon and spun the prize wheel many times. SHE LOVED the cotton candy.

I got to meet a lot of special people too. Many I know just from ther CB sight. Kathi (Tori Danielson's mom), Bailey Grace's parents, and Connor Stokes mom. I have to admit I did not know quite what to say to Connor's mom. I felt so bad that Connor had passed from this beast. But is was great to meet them.


Some of the talk on my on line support group is to try to get together at Give Kids the World/ Disney World for our MAW trips. I hope some of us can pull it off. I am a bit nervous about traveling with 3 kids under 4/5 years old. We were thinking of going next March/April. The new baby would be young enough not to care about being in the stroller. If it works with the ALL-kids group they are thinking Oct. 2005. Lets see Alexis would be 5, Rachel almost 3 ( our wild child, so far), and the new one 14-15 months. HM any travel suggestions. Alexis wants all of us to go as a family. We have asked my mom to consider going with us, but we will wait to see what she says. It would even up the odds, and make it a little easier. Time will tell.

Well it has happened. Be it lack of sleep, kids, or just getting older. We are constantly calling our kids and dog by the wrong name. Alexis said this morning " just like MaMaw" we all laughed. She was right. Even Alexis has done it. She called Shale (our dog) Rachel and just laughed. HMMM For now I will blame it on being pregnant as I can not remember anything. I can not remember anyone's names right now, even people I have know for years. Go Figure. Hey at least we are using names in our family. Jeff does it too. : )


Take Care and God Bless,
Karen





Thursday May 13, 2004


HI everyone, well it was another clinic day today. Things went well. Alexis counts were good. WBC 3.9 RBC 3.86 Hemoglobin 11.2 Platelet 608 and ANC 2.028. So she recieved all of her chemo. She still has her cold, but they are not worried about it yet. If it is not better by next week we are to call in. She would probably get anitbiotics then.

Other than the mood swings she is doing fine. I never know if it is meds., not feeling good, or just being a 3 1/2 year old. Probably the later but who knows. Either way it tries my patience, but I am working on that or trying to.


We got tickets to the Circus today at clinic. It should be a lot of fun. It is next Sat. (22nd) at the ExCel Center. She was not sure if she wanted to go, until they said that the Hurley's were going. When I said Noah was going that was it. She wanted to go. It sounds like we will be in a private box with the Hurley's and one other family. So plenty of room for the kids to move and not worry about viruses etc. They also said that there would be treats in our box. YUM YUM, I know I will have to watch all those yummy sweets.


Remember that I will be walking in the ACS Relay for Life on Aug 6th in Elk River. I can take pledges at any time, so if you are interested please let me know.


Thank you for all of your support and prayers.
God Bless,
Karen

Sunday, May 9, 2004 12:36 AM CDT

Hi Everyone, Alexis went to church today. She had a great time and, of course, loved the donuts. She sat in Sunday school with Laura and Lauren and Shelby. I think they all enjoyed seeing each other again. She is coming down with a cold, thanks to mom and dad who are still fighting one. So we will see how she does over the next week or so.

She has been having problems the last few nights with pain. What kind we are not sure as she will not tell us, but you know that she is hurting, we think either stomach or leg. The next morining she does not remember it, so who knows. Last night at about 2:30 she came into our room and said "mom we need to pray" I said what is wrong are you going to be sick, or in pain. (always thinking the worst) She said "no I had a bad dream" So into our bed she came and we said a prayer for no bad dreams.

Other than coming down with this cold she seems to be doing great. We went to the Minnesota Zoo yesterday. The girls had a fun time. We watched the dolphin show and they both just starred. No smile or laugh or anything just starred, but Alexis said she liked it. We were there quite awhile. We did a little shopping when we left, as I am looking for a mini blanket for Rachel. I was told they have been discontinued. NOT GOOD. It was made by Baby Morgan and/or First Momments was made of accrylic and had a silk type (but not silk) border and was maybe 15 by 20 in. in size. Hers is falling apart. Anyway we did not get home until 7:30. It was a fun day at the zoo and we hope to go to Como zoo later this summer.

Hope everyone has a Happy Mother's Day.




I am taking pledges for the ACS Relay for Life in Elk River which will be on AUg. 6th. If you are interested let me know.

Thanks and God Bless,
Karen

May 3, 2004 7:42 AM CDT

PUT NEW PICTURE #2 SPOT ON TODAY 5/7/04

Remember the American Cancer Society Relay for Life in Elk River on Aug 6th. I can start taking pledges at anytime or you can purchase a luminary bag to line the track. All procedes are tax deductable.




Today was day 20 (OOPS it is only day 10, but our 2nd apt in this cycle) in IM#2. Alexis was glad to have Linda back as her nurse today. Her labs were great. WBC 4.0 RBC 3.86 Hemoglobin 11.6 Platelets 431 and ANC of 2.720. So she recieved her excalting dose of IV methotrexate and Vincristine. It was a very routine chemo day. Still sounds funny to say routine but that is what is was. We will do Zofran every 4-6 hours for the next 36-48 hours then go back to just at night.


My mom and dad went home today after we got back from clinic. Dad was anxious to get back home. Alexis was disappointed but Mamaw will be back in Aug. She said that next time Papaw will stay at home and only Mamaw will come up. Mamaw will be up to watch the girls while we are at the hospital bringing in our 3rd. Jeff was sad too as he wanted to play more pitch (a card game). It was a good but very busy visit. We painted the kids rooms. Alexis and Rachel's room is now blue on blue and the baby's room is tan on green. Jeff and I also went to St Cloud to look for bunk beds. We found one, although we will keep them separate for a long while.

Alexis is now sharing a room with her sister. We were going to wait a little longer, but she wanted her bed in HER blue room. We were not about to tell her no when she wanted it, besides now we don't have to worry about how she will handle it later. Rachel was up a lot last night which woke Alexis up, so there will be a lot of adjustment for all of us. But it will be easier, I hope, in the long run.

Thank you for all of your suppport and prayers. To all of my computer friends (CB and ALL-kids) Sorry that I have not check in lately, but I think of you all daily. I will have to get busy very soon.

God Bless,
Karen



Thursday, April 29, 2004

Well it has been a really good week. Alexis has been doing great. Still having a few accidents and the chemo has her going back and forth from constipation to uh oh I gotta go. We still are giving her Zofran at night, for peace of mind hers and ours. She has been sleeping in her own bed, well most of the time. We do snuggle her for 5-10 min. She has been waking up at night and crying, usually because she is alone. So I lay with her for a few min and that seems to help. She still wants to sleep in our bed and will tell us "ok here your chance or here's the deal" hm wonder where she has heard that. She will say "I will sleep in you bed and Dad will carry me back to mine" and sometimes she will add in "ok no tv" in bed of course.

I am sorry if I have not gotten to your CB sight lately. I joined a on line support group and find myself going through all the e mails, but it does not mean that I am not thinking of you.

Well I need to go as my Mom and Dad are coming today and the house is a pit (as usual). So if you come over unannounced I hope it is to see us and not the squaller we live in.

It should be a good time with Mamaw and Papaw here. Alexis is so excited. It will be the first time my dad has seen Alexis and he is a bit nervous, but she is doing great, just bald. We are going to paint the kid's bedrooms. Alexis has picked out blue on blue for hers and Rachels. The baby's room will be tan on green. If the US is correct we will be having a boy, so the girls will have to share a room. We just want things to go well and for it to be healthy, but Alexis has told us all along that is WAS a BOY. She does not want another sister. HM wander if it is because Rachel is such a brute and is a go getter. So sharing a room could get interesting.

thanks for stopping by,
God Bless
Karen




Sat April 24, 2004

Up bright and early yesterday for our trip into the clinic. Our regular nurse was gone so we had a new one. I am looking forward to having Linda back. She just knows our routines. The nurse also questioned why we do not do labs the day before either with home health or coming into the clinic. Let's see. Insurance will not pay for just labs at home and we live an hour away and would need a extra sitter for Rachel that week. ( but I held my tongue about Rachel).

We are now in IM#2. Alexis' ANC was just high enough. It needed to be 1000 and hers was 1008. WBC 2.4 Hemoglobin 10.9 and plateles which need to be 100 were 601. So she got her IV methotrexate and Vincristine and Zofran and a spinal tap with methotrexate. She did so well, as usual. She does get afraid when she has to lie down as she thinks she will fall off the table, but the procedure went well. She got her morphine and versed and when she felt anything she would blow. She is such a little trouper. I am soooooooo PROUD of her. She told Jeff that she blew and did not cry at all.

That morning when Vera came to watch Rachel, Vera asked if she had ate breakfast. Alexis said "no I have a spinal tap today".
The day before clinic I tell her that tomorrow we have to go into clinic. If she thinks I am going to tell her she needs a spinal she says "I don't want to hear it" or some other wise remark.

I hope that IM#2 goes well as we have a lot planned over the next 8 weeks. From going to the zoo, museums, pictures in June, early b day party for Alexis (if I can get it together), and Mamaw and Papaw coming for a visit next weekend. Amoung other household things, painting and cleaning window tracks.

With her IM she does a every 10 day schedule so we do not go back until the 3rd of May.

Thank you for all your thoughts and prayers. Take Care.
Karen

Tuesday April 13, 2004 4:26 PM CDT

WE went into clinic today because they thought that Alexis would need a blood transfusion this week before our normal Friday. I pretty much knew yesterday that she would not need one as she was full of energy. She did take a 2 hour nap from 5-7 and still was in bed by 9:00. She usually does not take a nap. Her counts were really good considering where she is in treatment. WBC 1.4 , RBC 3.26 , Hemoglobin 9 , Platelets 446 and ANC .590 The Docs are very pleased with how she is doing. We are very lucky that she is tolerating things so well. We do have her back on her Zofran 2-3 times a day. Unless she has a problem we do not have to go back until April 23rd woohoo. That is when, if counts are high enough, we will get started with IM #2.

It worked out that since we went in early, we have some friends coming on Friday (Cindi and Warren) to watch the girls so Jeff and I can run errands and go out to dinner for my birthday. YEAH (the dinner out thing).

God Bless,
Karen


Well it has been a busy week. We finished up Alexis' last round of ARA-C at home on Monday. On Tuesday she decided that she did not need to drink much. By that early afternoon she had a headache. I called in and they said to try to get her to drink and watch the output. If she did not output at least 2 times a day to call back. Wed. she still was not drinking much, but was playing so I just kept trying and watching. That night she threw up and I was up most of the night, worrying. On Thurs she said she felt fine. That afternoon Amy (a NP) called to talk about the cord blood. We ended up talking about Alexis. Same thing keep trying with the fluids and watch the urine output. Friday was clinic day. Amy and I had decided on Thursday to go ahead and give IV fluids at clinic. We had labs drawn and starting watching a movie. Our usual, without a TV to watch it would be a long day. In fact the first room they took us to did not have one and Alexis said "Ut oh no tv" they moved us to a different room. Paige was there that day and ended up coming to our room to paint. Jeff came with as he had the day off, so I got to go and talk to Noah and his mom. It is always good to see them. Labs came back ok. WBC 1.1, RBC 3.16, Hemoglobin 8.9, platelets 265 and ANC of .641. They told us that they were probably a little lower since she was dehydrated. Alexis has a slight sneeze and cough, which we were told to watch. They also told us the usual, watch for fevers, paleness, bruising, but mainly fevers. Dr Smith also said that Alexis would probably need a blood transfusion sometime next week, but she looked good. We are lucky that she is doing so well. So we are going to go back on Tuesday to check counts. They did not think that she would make it until Friday. Friday night she threw up again. She told Jeff "I don't want to go to sleep anymore" We have started her back up on her Zofran. I guess we learned our lesson the hard way. She says she is fine during the day, but watch out at night. So we are making her take it to see if it will help.

thank you for all the continued support and prayers,


Happy Easter,

Karen










I usually don't express my feelings or adventures, as English and Creative writing are not my strong suits. I am a fact person, which probably has something to do with my medical background. There are many of you who I feel are gifted writers, like Kristie (Kendrie's mom) and Lori (Noah's mom) to name just two. Today I wll try to express a little.

Most of you don't know, but Alexis is our first miracle. We tried for a long time to have a family, and 5 years ago we were not sure it would happen. Then God gave us Alexis, miracle #1. We were so excited and overwhelmed. We had out human family. We had 2 dogs as kids before, one passed in July of last year. Then a new suprise, I was expecting again. This was miracle #2. So along came Rachel our adventureous little girl. The complete opposite of Alexis. Alexis is our observer and Rachel is our doer. Then it happened, Luekemia. Our world was (is) turned upside down You survive because you have to. You have to be there for your child. Rules, at least some, get put aside. Ice cream for breakfast is ok at times now. Starting out bedtime in mom and dad's bed is also ok. Although lately she comes back to our bed or I end up in hers as she wants to snuggle. Which I KNOW will be hard to break! A good night sleep, at least for me, is non existent. I'm sure it does not help that I am pregnant, or Rachel won't sleep through the night yet, or Alexis is up. If not one of those my mind races with worries. I find myself turning the radio stations because a song puts me into tears or going on line etc etc.

Then there is Shale, our dog. Who blew her knee out around Christmas, had surgery, and relapsed into thrombocytopenia. She is still on steroids because her platelets are still low. She may stay on them the rest of her life, as she is an old dog. She also is on her 2nd round of anitbiotics for a severe skin bacterial infection.

Oh yes, being pregnant, our 3 rd miracle. Although we thought our plate was plenty full with the leukemia, God decided otherwise. So then I think. God has given us many miracles, three of which are the best things to happen to us, and are true blessings. So will he give us a 4th miracle? Will He heal Alexis and let her stay here on earth. We know how blessed we are. She has been doing so well. I pray that he will give us one more miracle. I'm not sure I could handle it her He did not. Some people say I am strong, on the outside maybe. The inside is full fo fears and worries which only a CK parent can understand. I will pray that we all get our miracles here on earth, and that a cure will be found soon, so others won't have to feel the way CK parents do.
God Bless and thinking of you all always, especially my computer friends.
Karen

Friday, April 2, 2004

Friday, April 2, 2004

We had a quick clinic trip today. ( We, like have have anything hard to do.) Alexis had labs, of course, exam and ARA-C. Her labs were pretty good. They have not dropped much since last week. Her platelets are 208, but her ANC went up to 1.5. The only number that may cause a problem, at this point, is her Hemaglobin 9.7. Not low enough for a blood transfusion, yet. They are thinking that she may need one next week. Time will tell. They say that sometime in the next few days her counts will plummit. They told me what to watch for and to expect to come in before Friday.

We were ready to go home, after going to the prize box. Paige had it in her room, using it for a painting table. She let us pick a toy, then asked Alexis if she would like to paint with her. Alexis said yes and we were there an extra 1/2 hour while she painted. I talked to Paige's mom and the girls painted. She did not want to leave those paints. Child life said they would have them ready for us next week. : )

Home health is to delvier her home chemo sometime later today, I think, as we will be giving it to her again this weekend.

Thanks for all the prayers and support. Please pray for all of the children fighting this battle, especially Lakota.

Karen





Tuesday, March 30, 2004

Well Alexis had her last round of home IV chemo last night. Things went really well. Sat. we were all a bit nervous, but it went well. She was happy to get deaccessed, as she was extremely careful of her port. She did not want to use her arm for much of anything except to eat. She has been feeling pretty good. We have kept her on her zofran, and that is helping, I think. We go back on Friday for the routine stuff. Seems funny to call it routine but that is what it is. She will get another round of ARA-C. We will give it through her port over the weekend again. She is such a trouper.



Sat. March, 27, 2004


It has felt like a busy week. Jeff had the flu last Sunday and spent the entire day in bed. He did not go to work on Monday. I ended up going to the Dr. on Monday, so Jeff had the kids. The girls have been fine. Rachel is teething so she has been cranky, at least for us. Alexis has felt really good.

Friday came, so off to clinic. She had her labs drawn. They were high enough to get started back up. Her platelets were 411 and her ANC was 1.190. So they ordered her chemo and prepared for her spinal tap. As usual she did great. I AM SO PROUD OF HER. When she feels anything she starts to blow, like blowing out candles on a cake. Sometimes we have to remind her, but usually she does it on her own. What a smart girl.

After her spinal she was put on IV fluids. She was to get cytoxan. This chemo can cause problems with the urinary tract, so they give lots of fluids. We were moved around 11:00 to the comfortable beds. She wanted soup crackers to eat. I asked if Child life was here so I could go to the pharmacy and grab us some lunch. Kirsten came in and they watch the new Dora Easter video. Kirsten said it was good to hear her be so animated. She ate really good for lunch. Then Kirsten brought in sparkle paints and Alexis proceed to paint for the next 3 hours. I finally asked if she would stop because the pictures would not be dry to take home.

She recieved her cytoxan and zofran. Then got another 3 hours of IV fluids. More zofran and finally the ARA-C chemo. The ARA-c is the one we will be giving at home over the next 3 days. Linda showed me what to do, and tonight I have to teach Jeff. They do not want me to give the chemo or the flush that follows (beign pregnant). I can do the first saline flush and the heparin. So hopfully it wil go well. She also started her 6TG last night and we will keep her on zofran for awhile. The 6TG has to be on a empty stomach which will be hard for a girl who has been eating like she is on DEX. We tried to tell her, but I don't think she understands. We will see what happens tonight when she asks for a snack.

The ARA-C is making me a little nervous, as everyone has told me how sick it can make her. Also they said that in 10 days or so her counts will be pretty low and to expect her to need to come in or be hospitalized or need blood. Lucky for us it is right around Easter. The week before and the week after they said would probably be the worst. We will pray for the best, but expect the worst. I am trying to decide what to do with Rachel, just in case. I may ask my church to see if anyone can be on a emergency stand by. Worst case I will bring her with and get Jeff from work on the way in, until other arraingments can be made. I hope I don't find out if I need it. I hope she does not feel bad until after the 5th as I have a US and Dr apt scheduled and would feel bad leaving her with Vera. Vera is my regular sitter for Rachel and a true God send. I don't know what we would do without our church family. Vera is a member of our church and a friend. She has voluntered to watch Rachel as much as she can and is now picking up both girls for my OB apts. We will never be able to thank her enough.

Please stop and sign Alexis' guestbook to let us know you were here. I enjoy reading the entires and find a lot of support knowing you checked in on her. Thank you for you continued support and prayers.

Oh yeah, Alexis let me cut off her staglers, at least the ones in back. She wanted to keep her wispy bangs for now. I will try to get pictures of it in the next few days.
Karen

Friday, March 19, 2004 2:03 PM CST

HI again, it has been a busy week. Monday night at 3:00am Alexis woke me up needing to go potty. She said that her tummy was upset, but did not feel like she was going to get sick. Needless to say about 5 min. later it happened. We were up from 3 until 7:30 with her throwing up. I thought that on Monday her voice sounded funny. So after the episode, I called the clinic. They said just to keep and eye on her and if she runs a fever call back. They did ask me to check sometime that day for mouth sores. Guess what she has them. She has not complained about them though.



Today we went to clinic hoping to get started with the 2nd half (week 5 of DI). It is count dependent. Well needless to say we came home early. Her platelets were fine at 359, she needed to be at 100. But her ANC was a 286 and she needed to be at 1000 or a 1.0 depends on how you look at it. So after her exam and seeing Noah in the hall we came home. We will try for it again next week.

She is handling the hair loss just fine, which makes us handle it well. WE are trying to talk her into letting us cut off the few remaining hairs, but she says she will wait for them to fall out. There are a few new pictures too.

Thanks again for all the prayers, support and friendship. We have many new on-line friends which I hope someday I can meet.
Karen

Friday, March 12, 2004 2:46 PM CST

Monday, March 15, 2004

I just need to vent on how much I HATE insurance company's. I have been fighting them since last Nov. I was calling them about once a week to figure out why we were not covered. Finally, last month someone told me our refferal was only good for 6 visits in 6 months, Yeah right like that is enough. So I called our primary clinic and thought I had it straighted out. A few days ago recieved the explanation of benefits in the mail, guess what, out of network. So I called them again. This time I was told that only the Dr.s are covered not the nurse practioners. Ok who sees the Dr. every time. I mean, we mainly see the nurse practioners, which means since Nov we have not been coverd by the refferal. Why cann't they give you all of the information when you call. I mean, I'm finding gray hairs as it is, do they want my hair to fall out too. Well maybe this time they will get it right. I called my primary and explained what was need, so she said she would call them again. Did I tell you how much I hate insurance companys?
Thanks for letting me vent!




Sat. March 13, 2004

Alexis had a rough evening into the night last night. Around 5:00 she started having leg pain. I rubbed her legs, took her temp. and gave her tylenol. Things seemed better and she went to bed around 7:30. At about 9:30 she woke up crying. She said that her wrists, legs and ankles all hurt. Within a few minutes she was rolling back and forth saying make it stop hurting. She was in severe pain and at times even was shaking. We took her temp. and gave her tylenol. We also decided since it was so severe to call the clinic. Of course by the time you call, the nurse calls you back, then decides she can't help and has the DR. call, she was fine. We told Dr. Perkins that we think it was from Dex withdrawal. After taking history and such she agreed that it problably was. To keep an eye on her give tylenol as need and if no improvement by Monday to go the clinic. So far today she has been fine. YEAH Also yesterday I thought it would be a week or so before her hair is gone, well I think it maybe gone within the next 1-2 days. It is coming out fast right now.


If anyone has heard of the parents poem about the egg, could you please get it for me. A friend said it talks about the shell being strong and hard on the outside, but if it gets a crack everything comes pouring out. Also I know that a gold ribbon is the ribbon for childhood cancer, does anyone know what color the ribbon for Leukemia is. I saw it on a sight and did not write it down and now I can't find it again.
Thanks!



Friday March 12, 2004

NO chemo today just counts (labs) and exam. Alexis has been pretty tired this week. She did not want to talk to anyone again. She does talk a little to our main nurse, Linda. Her counts are down which is to be expected, platelets 407 (really good) WBC, RBC, and hemaglobin were all normal, but her ANC (immune system) was .658. This is lower than normal but not to bad. We are suppose to start the 2nd part of DI (delayed instensification) next week. It is count dependent so we will see. Linda said it may not happen. Her platelets need to be at 100 and her ANC of 1.0. WE will see what happens next week. If her counts are not high enough to start it will get push back a week and will do so until the counts are good enough.

Other than being tired she is doing really good. Her hair is falling out now. They have been telling us that she will lose it for the last 4 months, well it has started. The rate it has been going the last few days, I expect she will be bald in a week or maybe less. Which in a way will be nice, as there is hair everywhere in the house.

We will stay with Fridays as clinic days until interm 2, then we will switch to Thursdays. WE will miss our friends, Noah and Lori. It was GREAT to see them today. I just wish Alexis had felt up to playing with Noah, but it was nice to talk to them in person again. Sorry we did not get to say goodbye, but Alexis just wanted to leave.

We did get to do lunch with Jeff again. No roast beef chicken (which is Arby's chicken strips)today. It was E I O's (which is McDonald's. You know old McDonald had a farm E I E I O ) She ate the french fries and ice cream. Hey at least she ate. She lost another pound. So she is down 4 pounds in the last 3 weeks.

She also decided the last 3 days that she would take her meds. YEAH of course now we are done until we start next phase of DI, except for the anitbiotic on Mon. and Tuesdays.

Please sign the guestbook, I really enjoy the entries and try to respond to the other caringbridge sights. It helps a lot.

God Bless,
Karen

Monday, March 8 , 2004 4:46 PM CST

Hi We need some advise. We are having trouble getting Alexis to take her meds. This started a few weeks ago when we started up Dex again. We made it barely through the 1st week. We are 1/2 way through the 2nd week, but it is getting worse. Does anyone have any suggestions? She can not take pills yet. Earlier we tried the applesauce, yogurt, and found that chocolate syurp worked the best. Now she fights that. She will hold it in her mouth for hours. So it is early afternoon before her morning Dex is down. We may try marshmellows tonight. Any suggestions would help. Thanks






Friday, March5, 2004

Well it is Friday again and that means clinic day. It was a long day today. The clinic was very busy. We were there 4 hours for a routine visit.

Alexis is doing good. She is having a few mild side affects from the vincristine, ankles, feet hurting, and eyelids are just a little droopy. But it does not stop her from playing. She has lost more weight. She is down 3 pounds in the last 2 1/2 weeks. Her hair is just starting to thin. Rachel pulled it yesterday and got a handful. Alexis said that it did not hurt.

Her counts are dropping, but are still looking good considering we are in week 3 of delayed. Her ANC was 1.36 which is REALLY good.

We will probly switch to Thursdays for clinic starting after the 19th. Linda said it is usually a quieter day and the drive may not be as bad especially when nice weather comes with people going up North. So to the few people we talk to and missed today, like Noah and his Mom, we will have to try to get together another time.

Please keep Noah and his family in your prayers. We met him at clinic last week and he is 2 months behind Alexis in treatment. Also please pray for Lakota. She just relapsed into AML and has a brother who passed after relapsing.

Thank you for all the support and prayers.
God Bless

Karen

Monday, March 3 2004 11:55 AM CST

Well I am having a better day today, and Alexis, as usual, is a trooper. We are very blessed that she is doing so good. She is feeling good and loves playing in what is left of the snow. Her and Rachel are doing that sister thing of fighting. Rachel likes to pull all the books off the book shelf and Alexis does not like her making a mess in her room. If she only cared about keeping the rest of the house toy free, which I know will never happen.

Thank you to all have been visiting us and signing her guestbook. It has really helped.
God Bless,
Karen




Monday March 1

Hi everyone! Alexis is doing well. Her hair is just starting to thin a little. I met someone at clinic last week. Their son, Noah, also has ALL. I went to his caringbridge sight, which led me to other sights. I can not stop thinking about all the other kids out there. Some are doing well, others are having side affects from the chemo, others have relapsed and some have passed. Please keep all of the kids in your prayers. You don't need their names, just pray for all who need it.
We are very lucky that, so far, Alexis is doing good. You feel so alone, but I have realized that I'm not. The worst part is that I'm not alone. To many kids out there have cancer. No child should have to go through this. No one said life was fair, but a child.

I agreed last year, before all of this, to do the Elk River Relay for Life. It affected me so much then. It is Aug. 6th. I ask that, if you can, come and support it and Alexis, either by being there or with a donation. We need to find a cure!!!!!!!!
Thank you and God Bless,
Karen

Friday, February 27, 2004 3:47 PM CST

Well, another day at clinic. Alexis has been very tired this last week. She decided not to talk to anyone but Linda today. She was fine after we left. Her counts were good, so we met Jeff for lunch. She recieved 2 chemos today. I found out that during this part of the phase she gets her chemo even if counts are low. They said that her counts will drop off sometime next week. We will just have to wait and see how low they go. Other than that things are going well. Dr. Messinger (the main ALL Doc) said she is doing very well and they are pleased with her treatments so far. He said she may quit eating in the next week or so and that is ok. We are also going to keep her on zofran for a few days and then as needed. This med helps with nausea and vomiting. So far Alexis only has the nausea. We go back to clinic next Friday unless Alexis gets ill.
Thanks for prayers and support they mean a lot to us and so do all of you!
Karen

Friday, February 20, 2004 7:24 PM CST

Well, Alexis' counts were fine so we got started back up today. She had a spinal tap with chemo, her vincristine and a new one called doxo (for short). The doxo will probly make her hair fall out. They told us she may get feeling really bad over the next few weeks, and to expect her to be hospitalized. Time will tell. She did super great today. She is such a trouper. WE are sooooooo proud of her. We will go back on Mon. for her Peg shots (another chemo). Then our schedule will be every Friday again for a while unless she gets sick. Thank you for all the prayers. We added new pictures today too.
Karen

Wednesday, February 18, 2004 12:32 AM CST

We hope to get started back up this Friday. A home health nurse was to come here on Thurs. but our insurance will not pay for it. ( I have been fighting with them a lot about Alexis' refferals. I hope to get it straighted out soon.) So we will go in on Friday and hope her counts are good so we can start her next round. She says she is feelilng ok, but we think she has been a little pale so we will have to wait and see. This next phase might get rough only time will tell. Jeff and I have decided that while going though this next phase Alexis will be staying home from church. We don't want to take a chance that she will get sick when her counts are low. We may still let her go this Sunday since she should be ok.

Thank you,
Karen

Thursday, February 5, 2004 7:53 AM CST

Alexis has the next 2 weeks off. YEAH. Yesterday went very well. Jeff took the day off to watch Rachel, but Alexis wanted us all to go. It worked out well as we went out do lunch and did a little shopping.

The appointment went well. Her counts were great with everything within normal range, so she recieved all of her chemo. They talked to us a little bit about want the next phase may bring. We will have to wait and see what happens. I guess some kids have no problem and just fly through it and others feel very sick and many end up in the hospital. So we are hoping for the best yet ready for her to be hospitalized. During the next phase she will be in basically home isolation especially when her counts get low.

She is still feeling pretty good and has energy to play. She has not lost any hair yet which I guess is very unusual.

Thank you again for the support and prayers.
The Stern's

Monday, January 26, 2004 4:53 PM CST

Well, we actually made it into the clinic today and it only took us 2 1/2 hours. Things went well. Alexis had a spinal tap with chemo which she did excellent. Not a peep out of her. We have her blow (like blowing out candles) when she feels anything. She also gets good meds too like morphine and versed. After her spinal, her counts were good enough to get all of her chemo. So she recieved a total of 3 different chemos today. The Dr. told us she would probably start feeling bad in a few days. Without the methotrexate last time she has been feeling great. So she recieved the meth both IV and intratheiclly (spinal)and one other chemo. So we will see how she is feeling in the next few days. She has been asleep for the past 2 hours so I hope she sleeps tonight. Her official report on her Echo cardiogram was NORMAL. The Dr. had to go find it and then double checked with the Dr. who read it. So that is a relief. So far things are going well. If her counts are good the plan is to start Delayed Intensifiaction on Feb 20th. Thank you for all the support and prayers.
Karen

Thursday, January 15, 2004 8:47 PM CST

Alexis had Chemo today. It went ok. She was only able to get one of the meds as her counts (labs) are to low to get the other one. This sometimes will happen, but it is the first for us. Her counts are not extremely low (.400 ANC) but we have to be careful now. More than we have been. Poor girl does not go out to places anyway, and now even less, if that is possible. She is still active and emotional. She also had a echo cardiogram per protocol today. The Dr. was not sure on the preliminary results, so we will have to wait for the offical report. The technologist gave 4 sets of numbers and he did not like 2 of them. So we will have to wait to see what that means. She is doing good and seems to be adjusting well to the apointments. We are having trouble getting her to take her antibiotic (liquid) so we are going to try pills next time. We hope it goes better.

Karen

Tuesday, January 6, 2004 8:07 AM CST

Alexis had another apt. yesterday. It went well. She is so amazing. She even held her shirt up for Linda to take off her numbing cream. (She had never done that before) She only cries a little now when her port is accessed. She says that it hurts a little and is scary. After it is accessed she is fine. She used to cry during everything, flushing, lab, chemo and even when they listened to her heart and looked in her ears etc. Not any more. She still does not want to talk to them, but thats ok. So far everything is going well. The Dr.s are fine with how things are going. I did ask about her hair. They said most kids have lost their hair by now. Most likely she will lose it during delayed intensification. They said it is very rare that they don't lose it. So time will tell.

She went for her P.T. evaluation yesterday too. It went well. They are going to send us some games to play that will help with certain muscle groups. Mainly so we can stay ahead of things. Alexis had a lot of fun and asked if we can go back sometime to play.

Thank you again for all of you prayers.
Karen

Saturday, December 27, 2003 4:55 PM CST

Yesterday Alexis had another round of Chemo. She started her next phase, Interm Maintanance 1. She was randomized to getting IV chemo and double delayed intensification. So she started her IV chemo, which she will get every 10 days. One of her meds. she may not get every 10 days. They will have to check her blood counts prior to giving her chemo, if it is to low she will not get one of the meds. but will get the other. (Kind of confusing.) She will start her first round of delayed intensification on Feb. 20th. Delayed intensification is where they will hit her hard with chemo again. Her counts will get very low and we will have to be very careful. They will basicly wipe out her immune system.

Right now she is still feeling well. Not eating much still, but they are not overly concerned. She still is playing and running around, and has NOT lost any hair. With the chemo she just started there is a good chance she could lose her hair, time will tell. Because she goes every 10 days now her next round of chemo is not until Jan 5th.
We hope everyone had a Merry Christmas and will have a safe and Happy New Year.
Karen

Saturday, December 20, 2003 4:24 PM CST

Alexis had another round of chemo yesterday. Things went well. She stills cries when they (Linda) accesses her port, but she is getting better with that too. It was a routine visit. Her labs looked good, although we still have to watch all those flu and cold bugs. She did not cry when we took the heart monitor patches off or when Linda deaccessed her port. She always is much happier when it is time to leave, of course. That is when she will actually talk to everyone, when we are headed out the door.

We are going to have her evaluated by P.T., because of some leg weakness. It is not bad mainly going up or down the steps and getting off the floor. We are trying to stay ahead of the game.

We should find out sometime next week which treatment she gets randomized to. Depending on what she gets will also determine if her chemo day get changed. Two of the protocols call for chemo every 10 days.

We also took pictures yesterday of her going through the spinl tap and chemo. We will try to add a few of them to her photo gallery. (Jeff has to show me how).

Thank you again for all the support and prayers.
Karen, Jeff, Alexis & Rachel

Sunday, December 14, 2003 1:56 PM CST

Well we made it to church today. Alexis was so excited to go, although you would of never have known it. She acted as usual, not speaking to people when they said "hi". Pastor Dan asked for people not to come up to us because of her immune system is starting to get low again, and everyone did a great job, so THANK YOU. Her numbers (labs) are not extremely low, but with it being flu season we are extremely careful. She is feeling great with makes us all feel better. She has a little leg weakness that we are keeping a eye on, but it is great to see her play and laugh. Thank you again for all the prayers.

Karen

Friday, December 12, 2003 1:39 PM CST

Well we just got back from Alexis' 2nd spinal tap, without a bone marrow. It went well. She did much better today. She even let Kristen (one of the nurse practioners) do a exam on her. She did everything she asked, including opening her mouth, and pushing her hand away with her feet and having her walk funny. Her labs have dropped some but are still ok. We may try to go to church on Sunday, but will have to have people stay away from her since her counts are starting to drop again.

She is doing well though. She is back to playing and even running around the living room. She loves to play with Rachel too, except when Rachel gets mad and tries to bite her.

Karen

Friday, December 5, 2003 4:37 PM CST

Alexis had another spinal tap today with Chemo. This was her first one without a bone marrow, so she was given only very mild sedation. It went ok. Next time we are going to ask them to wait a few more min. after one of the drugs before they begin. Because she was pretty much done and then she was in la la land. So if we wait a little bit longer it should be easier on all of us. So far she is doing great. Up and around and playing with her sister and Dad. Her labs were good too. They did drop a little but that is to be expected. Take care and God Bless.

Wednesday, December 3, 2003 12:37 pm CST

Friday started out good. Aleixs felt great. That evening she had a headache. Saturday she had 2 more headaches then was up a lot during the night with her back hurting. Sunday more headaches. She did play a lot and laugh when she did not have a headache. Monday only one headache, but was very moody that night. She stopped one of her meds on friday that was supposed to MAKE her moody. She seems more moody now that she is off it. She has been playing catch with mammaw, and laughing a lot. Which is great to see. Tuesday she spit out part of her medicine so I had to call the Dr. to get a refill out here. She did not do it again,so far. She says the new one tastes better, in fact she even asked for it this morning. She only gets that particular one on Mon. & Tuesdays. The headaches we think are from her spinal tap and stopping her steroid on Friday, although she had some headaches prior to that. So far today no headaches. In fact she is in the next room laughing up a storm with Rachel and her Mammaw.
We go back to the Dr. on Fridays. That is her Chemo day.
Well I want to go laugh too, so thanks for all your prayers

Karen

Friday, November 28, 2003 3:58 PM CST

Today Alexis had another bone marrow test. Things went very well, as she is feeling great! The results are just as good with still less than 1 In fact her number was perfectly normal.

She also started a new chemo med. today at home that she will take by mouth. She even said it tasted not bad.
So that is great as her last medicine did not taste good at all. The hardest part is she has to have an empty stomach.
Thank you for your continued support and prayers.

The Stern's

Thursday, November 27, 2003 4:48 PM CST

We are finally going to get Alexis’s sight going. Today is November 26,2003, but our adventure began back in October. October 31 to be exact. Alexis had been complaining of elbow pain back in September. We took her to the Dr. and did x-rays. Everything looked ok. Two weeks later she was still complaining only now her ankles hurt too. So back to the Dr. for more elbow x-rays. Everything was still ok so they sent us to a Orthopedic specialist. We told him she had been running a fever off and on. He said everything look ok and not to worry. Still something did not seem right. The fevers off and on continued and after a few more weeks I called the Clinic. They said there were no viruses so I should bring her in. I took her in that late morning. The Dr. said she looked pale and because of her past history we would do the works (sinus x-ray, U.A. and blood work). He told me worst case leukemia or else a severe infection. The x-ray did not look to bad, but not great either. So we waited for the blood work to come back. Not long after that he came back in and said her blood work did not look good and he thinks it is going to be leukemia. He told me that we needed to go to Children’s Hospital that day. We decided which one to go to. I knew where the one in St. Paul was so that was it. He called the Oncology Clinic, and I started to make my own calls. The fist one was to Jeff at work to say we needed to take Alexis to the Children’s Hospital because they thought she had leukemia. Then I needed to find someone to come get Rachel. I made several phone calls. I left a good friend, Kevin, a voice mail to call me right away. In the mean time I called Michelle and Beth to see what I could do. Kevin called me back and I told him I needed someone to take Rachel and why. He dropped everything and came to get her. Rachel was now in good hands with Kevin and Michelle. They kept her until my mom got into town sometime on Saturday.
When we got to the Clinic in St. Paul they were waiting for us. They started a I.V. and did more blood work, and within a hour or so Alexis was having a bone marrow text done. They were pretty sure it was Acute Lymphocytic Leukemia. They were right, although they did not tell us until the next morning right before surgery. On Friday night she had a blood transfusion and a platelet transfusion also. Alexis had a port cath placed on Nov. 1st (where future blood work, I.V.’s, and Chemo is done through) and a spinal tap with her fist round of Chemotherapy. It was a lot of uncertainty and information in that fist 24 hours. She had a lot of pain on that Sat. so we asked for pain meds for her. That helped, and she perked up, ate and felt better, of course. Things seemed to be going ok. We had a few visitors come and that made Alexis happy. We were supposed to go home on Tuesday, but on Monday night she spiked a temperature of over 104 degrees. So she was started on antibiotics and had to stay a little longer. With the steroid she was on she can not run a temp or more than 101 or it is an automatic 2 day stay in the hospital. On Tues. she ran a temp over 101 so our 48 hours started up again. By now we had decided that we would stay until Friday, because she had another bone marrow and chemo scheduled. On Thursday night she had another blood transfusion and on Friday morning she received more platelets. She was pretty depressed while we were in the hospital. We watched a lot of movies. The only time she perked up was when Rachel and Mammaw came to see her. Her test was done that Friday and went well. She felt good for a little while after it. Although the Dr. had decided not to let us go home until Saturday. Saturday came and we were all very happy to be going home finally.
Alexis was very happy to get to go home, so were Jeff and I. My brothers (Roger and John) had driven up along with my niece and nephew (Miranda and Jordan). Alexis played for almost three hours before she dropped. It was great to see her moving and smiling.
Tuesday we went back to the Clinic for blood work and a general exam. Alexis screamed during the whole thing. Which we expected since that was what she did in the hospital too. Any time they wanted to do something she cried. Once in a while she didn’t but most of the time she cried. Her counts were very low, which is what is supposed to happen. On Friday we went back again for another bone marrow, labs and chemo. This was a very critical bone marrow day. She needed to be below 5ancer cells in her marrow. She was!!! (on day 1 Oct 31 she was 84on day 7 they like them to be below 25ut Alexis came back at 28 day 14 Alexis came back at less than 1 We were all very happy, although we had trouble with her port again. We have had trouble with it off and on in the hospital. So before they would give her chemo they used a clot buster on her port and so far it seems to have worked. She was in a lot of pain after this bone marrow. We called the Dr. several times on Sat. because her sight was still oozing, and it did until Mon. morning. Alexis did not like it when we changed her pressure bandage. I can’t blame her. (We have tape issues).
The following Tuesday we are back at the clinic again for more labs and general exam. She had been complaining of headache, so we did a head CT just to be sure. It showed no masses. Her labs were good enough that we got to go into Arby’s to eat. That was our fist time out not including the clinic. She was so excited. She said “My counts are good and we can go inside to eat”. We wiped the table down before she could touch it. We still need to be very careful, especially with that nasty flu going around and the chicken pox. So we are still keeping her at home with little contact for now. Maybe when the this nasty flu thing is better we will take her to church or have her friends over. On Friday we just needed labs, exam and chemo. It went better. She only cried and not screamed. So we are making progress. She seems to be feeling better, and is eating like a horse. The steroids will do that to you. In fact she eats all the time and is very specific on what she wants. There are times she will eat 3 platefuls of something and walk from the kitchen table to the couch and ask for a snack. It is great to see her acting sort of normal again and laughing. That puts us up to date so we will now hopefully be better at updating now that we are online at home. Thank you for all the continued prayers.
The Stern’s

Thursday, November 6, 2003 4:18 PM CST

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