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Click here to go back to the main page. Thursday, July 28, 2005 6:07 AM CDT Morning everyone, sorry I didn't update on Monday after the CT but the days are too short and the tasks to many sometimes. Well we had a rough Monday. Nikki has such a problem with her veins for the CT's that it is extremely difficult for them to get a line for the CT's contrast. 3 Nurses and 5 different locations until they finally found a spot. They try everything to find them but due to so much bruising, scarring and just having veins too deep that it is tough. They did finally get a spot and kept it in for the labs to be drawn. Counts were fine. We saw the scans and the abdomen is still good, the area where they just did surgery looks fine but now there are a few small areas around the lungs. They are small and at this point they need to talk to the radiologist to find out if this area will be radiated. We talk all the time of options we can try. Interferon is one drug that we are looking into. At any rate we are going to go with the radiation starting Tuesday-unless the radiologist changes something. Monday, July 25, 2005 5:38 AM CDT Good morning all, things are going okay right now. We have to go in today for a overall CT and to visit the oncologist. They just scheduled it Friday but I believe it is due to my contacting them to find out what we were doing and letting them know that we don't like this waiting time. Last Monday they did the preliminary CT for the radiation which did not include the whole area just the chest which we thought they would do so we knew we had to do another CT. I just don't like to wait and neither does Nikki and Mark. We need to keep on top of this. I will let you know how today goes otherwise summer is going well but fast as we start to approach August and then school again. Tuesday, July 19, 2005 7:51 AM CDT Good morning, it's been a bit but things are going good. We finished girl scout camp last week. Hottest week of the summer so far as every day was in the 90's. We faired well and had lots of fun. If you have girls it is a great place to be and all the kids do plenty of things. The days go fast and everyone is tired by the end of the day. Great Job Queenie and all the volunteers, I hope you had as much fun as I did. Thursday, July 7, 2005 7:02 AM CDT Morning all, Wednesday, June 29, 2005 3:14 PM CDT Hi all, just a quick update so you know we have not forgotten about all of you. Sunday, June 26, 2005 4:04 PM CDT Good afternoon all, things are going well here. Nikki is back to Nikki, just another scar to heal. We still have not heard more from the doctors but hopefully this week. We will keep you all posted. Thanks everyone for all the prayers and support. We are a very blessed family. Wednesday, June 22, 2005 4:56 PM CDT Hello everyone, Sunday, June 19, 2005 10:32 AM CDT Well hi all, we are still in ICU at Children's Mpls. Nikki JUST got he tubes out of the nose and throat and is breathing okay on her own with just a little oxygen. This surgery was tougher then we said and tougher then we knew. She is tough but the surgery lasted 4 hours. It is the same incision she has for the open heart surgery and the tumor was also a bit on the heart and in a nerve area that they have to watch. They DO believe they got it all but will need to know for sure after a CT. Keep praying as we still will not know for a while. I am not sure how long she will be here or we will be here but I hope tomorrow to be out of ICU. Those rocking chairs are not made for sleeping. I will let you know more as the week progresses but know we are doing good at the moment. SHe uses her sign language again to communicate what she wants. Mark and Em are on their way to Green Bay to get Hillary. They stopped this morning and will be home tomorrow to come back again. Thursday, June 16, 2005 2:02 PM CDT Hi all, Monday, June 13, 2005 6:01 AM CDT Good morning all, Wednesday, June 8, 2005 5:24 AM CDT Good morning all, Monday, June 6, 2005 8:12 AM CDT Good morning all, Friday, May 27, 2005 7:37 AM CDT Morning all, Saturday, May 21, 2005 9:35 AM CDT 5/25/05 Update- no information as of yet. I call daily but they have nothing for us. I will let you all know as soon as I know something. I am sure that we will not be in until next week at this point. THANKS!
Monday, May 16, 2005 5:20 AM CDT 2/17/05
Friday, May 6, 2005 6:20 AM CDT Sad news to report, I just found out that one of our greatest advocates and fellow patient Patrick Scanton pasted away last night. Please remember him and his family. To find out more about his fight go to the sight he maintained and you can find out about him and many others www.dsrct.com. Though I have never met him personally I don't know if I have ever know such an inspiration. God Bless him and his family
Monday, April 25, 2005 12:01 AM CDT Hi all, Nikki is doing well and goes in for a new PET/CT on May 9th so please keep the prayers coming. One of the other DSRCT patients I follow just had tumors again appear after being clear. His name is Keegen so please remember him in your prayers as well as the others that have this rare Cancer. I will add some names to this website so you can see who and where they are located around the country. There are one or two in any given state and other countries that I am aware of. I will let you know on the 10th how things are again.
Monday, April 18, 2005 5:52 AM CDT Good morning all, Tuesday, March 29, 2005 12:33 AM CST Good afternoon everyone, time flies these days. Things have gotten much more normal for us these days. Nikki has just had some checks on her phos since her last scan. She is still doing the PhosK and Gleevec and will continue. Her next CT will be early may. She finally returned to see her cardiologist again. She hasn't really seen him since the she was diagnosed. He has been involved and gotten reports but no actual visits so we are getting back on track with that. Things were good there with nothing really changing in the last 2 years as far as her Aortic Stenosis. She will go back in 6 months for an Echo and a EKG. Our biggest worry used to be her heart as she grew and that seems to be doing fine and trust me she has grown. She is about 5'2" right now. (Without the heals she likes to wear) She will probably bypass me. Monday, March 14, 2005 5:50 AM CST Hi everyone, sorry again for the lapse in time here. Things get so busy it is hard to find time for everything. Nikki had her scans again last week and all again is good. This was the first time going to clinic without her hickman so they had to access that wonderful vein of hers that is so tough. (They have tried numerous areas) This time is was quick and worked very well. When we go in now it is a strange feeling from being a part of the clinic daily to almost being a stranger as the faces are different coming in (patients) and you no longer need the suites in there (those rooms that the ones spending the day for chemo use). We now go to one of the smaller out of the way rooms since it is a quicker visit. They basically now ask us how long we want to go before the next scan. Being the situation with DSRCT we do not feel comfortable yet with going a long span so we will go 2 months (we did 6 weeks this last time) and do another. This will be May just before they are done with school. Hard to believe school is almost up. Next year will be Nikki's last year in middle school (8th grade) and Em's last year in Elementary (5th grade). They grow up to fast. Monday, March 7, 2005 5:59 AM CST HI everyone! Thanks so much for continuing to follow Nikki and the rest of the Minnesota Schauts. Tomorrow is the next CT for Nikki. As usual we always stress about it. We pray things continue to go well and we will see tomorrow. Nikki is doing good and is happy to have her hickman out. She healed up really well and is now able to do whatever. We are hoping to do a vacation again this summer and she will really enjoy being able to get back in the pools. (Haven't done it yet) It seems there is always something to be done or going on. We can't wait for spring and as you know yesterday we had a taste of it. 60 degrees and it was beautiful. Back to reality today but it is March so spring is on its way. You all take care and I will let you know how tomorrow goes. Thanks again for all the prayers. Friday, February 18, 2005 5:50 AM CST Good morning, I have become one of those who forgets to update all of you and I apologize. We are now running pretty much a normal lifestyle now with no more heperinizing and fewer and fewer visits to the clinic. Nikki is doing awesome and now our concern is just making sure the homework gets done. Her hickman is out and healed nicely. She still keeps a bandaid on it just because it has a scab and she is preventing herself from picking at it. She had to have a CBC at our regular doctor and they had to draw from her arm and we have had trouble with this before but sometimes one can get those veins better then others and the nurse we had was great and had no problem. Nikki's next CT will be on March 8th. I will always be nervous and unsure but I can pretty much put it in the back of my mind on most days. It will always be there however. Nikki has done so well through everything and I can't believe where we have been the last couple of years. We have and always will appreciate all the prayers and support we have gotten, please don't stop the prayers we truely believe that is what has gotten us this far. There are also more and more people with this form of cancer. They have begun trials on nude mice to help find a cure for it. Thanks to a fellow patient Patrick who has been working vigilantly to help us all. Monday, January 31, 2005 5:22 AM CST Good morning all, I added a note at the intro page please read it as it is a good reminder to all of us about life. Nikki news is good. Today we go for a H & P (History and Physical) so she can have surgery on Thursday to remove her hickman. For those of you who may not know or remember, her hickman is the line they have been using for all the blood draws and chemo. It comes out her chest. It is about the size of a pencil eraser in diameter and it comes out one line and then seperates to two. It is called a double lumin. We heperinize these lines daily. The lines hang down to about her waste so they are pretty long. She is very excited to get this out so she can be more active and really get into a pool and swim again. She will have her next CT in the beginning of March and have a clinic visit mid February. Things are really looking good thanks to all our support from you all and especially those prayers. I will let you know how things go on thursday. Have a good week and take care all. Tuesday, January 25, 2005 7:00 AM CST Morning all, well thanks again. All the prayers have brought us another good CT. Now she can get rid of her hickman and also another one of her meds. She is very happy. Not sure when we can get surgery scheduled yet to remove the hickman but it is an outpatient procedure so sure not be anything we are concerned about. They will just put her to sleep and remove it and it will be done. The whole time is about 4 hours I believe we were told. She is adding another class to her schedule today the start of the 3rd quarter. If all goes well next quarter maybe she will go the whole day. Our plan is to get her into a pool swimming once the hickman comes out. What a good thing for her to do. Her next CT will then be in about 6 weeks, the beginning of March.
Thursday, January 13, 2005 5:27 AM CST Good morning everyone, well we finally have something to report. Nikki had her electrolytes checked yesterday and most are good. She continues to still need to take KPhos daily to keep the phosphorous levels near where they are suppose to be. Yesterday just confirmed she still needs that. On the 24th she will have her next CT and they will check again at that time. We continue to pray that the CT's continue have the same positive results. If all is good again on the 24th we are going to look at getting rid of her hickman. This would be a great thing for all of us. Yes it means that anytime they have to draw blood they will have to find a vein but no longer will we have to herprinize her (every morning) or change the bandage over the site and best of all she will be able to get into a pool again and swim. It has been about 2 years since she was swimming. What a great exercise to get her into again. Monday, January 3, 2005 9:43 AM CST Hi everyone! I hope you all enjoyed the holidays. We definitely did. With the news that Nikki is still doing good we could be very thankful and very joyous during the holidays. We are starting the year good and now have a bit of a direction or plan for Nikki. She goes back monthly for a bit with CT and GFR to make sure the kidneys get back up to speed and the CT continues to look good. Then they will start to spread things out as we look at the CTs continuing to be good. We continue to be thankful for the prayers that have brought her this far and keep her on the wonderful path she has been given. I will update as we more information and just to give a quick note on the Schaut happenings. Thursday, December 23, 2004 5:46 AM CST Good morning and Merry Christmas and Hopefully a very Happy New year to you all. We got her CT on Tuesday and it was again good. We are thrilled to get the news in time for Christmas. This time of year is so CAOTIC and I really sometimes forget to sit back and enjoy and be SO thankful for all that I have in my life. We have gone through many struggles and still we are all here and we should be more thankful for that. So amidst all the hussle and bussle always remember what matters is being with friends and family. Enjoy them all. Don't worry about messes, wrapping paper everywhere, dirty dishes and any other little things that come with the holidays. Try to just sit there and watch the excitement with the kids and be thankful. (This is really tough for me to do, I thought if I wrote it, it will happen) God bless you all and always remember in your prayers those families out there who are not having such a joyous holiday either because of being apart from their families or are less fortunate then we are. Monday, December 20, 2004 5:27 AM CST Good morning, hope you all are ready for the holidays. We are not but hey we have a few days. Nikki has her test tomorrow GFR and CT. They always make me very nervous. Please throw in a few extra prayers tonight. Saturday, December 11, 2004 7:48 PM CST Happy Holidays everyone, well all is good here. Nikki is doing really well and becoming more and more of a typical teen. She is still going to school half days and that seems to be enough for now. She will get tired quicker but everyday is better then the one before. They will continue to check her counts on a weekly basis. They seem to stay fine. Next CT and GFR will be December 21st so please continue the prayers since we know that has gotten us this far. We continue to pray for all the others out there that have this rare cancer. Just to let you all know that there are others throughout the country and other parts of the world that have DSRCT with little studies and research on this. There are some good people out there that are continuing to push to have more studies done to find out more about the DSRCT. I will try to put some more information on her page as I get it. Thursday, December 2, 2004 5:11 AM CST Morning all, well things are moving along pretty well as the holidays approach. Yesterday Nikki went in and saw her doctor and things are going well. She continues all her meds as well as the Phos. Her counts are all really good. I didn't even take note of the numbers because they were something we just aren't worrying about right now. They are trying to put together some sort of timeline for us so we can know when tests will be and what they will be. Right now we know that she will go in on December 21st for another CT and GFR. The CT will determine the frequency of the tests and any others they would like. Since this is a different and not really known to much about cancer they don't have a set protocol they just go with it on a case by case basis. It was different being one of the checkup families verses the families that are going through the long chemo days. We are extremely greatful to be where we are now and to look back on the last year and a half and really not believe all that has happened in our lives. Now it seems like such a long time ago. We have many things to be thankful for in our lives and our friends and family are a huge part of that.
Monday, November 22, 2004 5:26 AM CST Good morning all and Happy Thanksgiving this week! Nikki is doing well in school and the KPhos is working. Her last counts we up where they need to be. They will check them again tomorrow. We finally have a plan as to how things will go for a while. They will continue to monitor her counts weekly until the Phos is doing okay on it's own which will mean her kidneys are back on track. She will go to the clinic once a month to see the doctors and then every 6 to 8 weeks between CT's. Right now her next appointment will be next week to see the doctor and then her next CT will be December 21st. So a bit more stress before the holidays but we will keep praying for good news to continue. She is doing really well and has the hair coming in fast and furious Mark and I think. The head is getting pretty dark. It will take some time to get it long enough for her but time flies. Monday, November 15, 2004 9:33 AM CST Good morning, latest Nikki news is still good. Her counts are good except again for the Phos. She continues to take her supplemental powder but they are not sure why they are still low. In case of a bad draw or something they will check again on Tuesday. School went good last week. She was pretty tired too. She went to a birthday party on Friday night (first one in a very long time) She went to a rollerrink and learned the hard way she was not exactly as strong as she thought she was. She took a spill before she even got on the floor and scrapped her elbow and bruised her wrist and knees. Luckily the counts are good so it took a bit longer for the bruises to appear. She is just fine and had a good time. Ready for another week. I will let you know how things go. Wednesday, November 10, 2004 5:45 AM CST Good morning, well the tough day is done and she is back to school half days. She was so nervous and a little ticked at me for having her go back to school. Once we got to school I knew that things would be fine but I had to leave and just let her be. She had a good day. She even did her wig which I never thought she would but she looked good. She remembered some of the kids and had some friends in a couple. I think as the days go on and she is able to spend more time talking to friends the better it will be. She said she likes the teachers but they are more harsh then in elementary but she also said they just get upset when everyone is talking and not listenening to them I guess that happens more in middle school (go figure right) She will have her counts checked again Friday morning so we can see then how everything else is going. Thanks to her home school teacher Lynn for helping getting her ready to start back and for taking her to school 3 days a week. Thanks also to the school for all their help. Friday, November 5, 2004 9:20 AM CST Good morning all, well yesterday was quite a busy day. We were at the hospital by 7:30 am for the wonderful contrast Nikki has to drink an hour before the CT. Funny how that no longer is an issue. Things seem to just roll along now like second nature. I, of course, have gotten a bit superstitious. I have pretty much every angel pin I own on and an angel in my pocket, my frog pin (fully rely on God) an lastly I make sure Mark is always with. We had a couple times when I didn't get such good news and Mark was not there so now he has no choice, with any test he is required to be there. She also had her counts done and all is good. The CT was again good. No tumors! Her hemoglobin was 10.9, her WBC 5300 and ANC 4340 and her platelets were 153,000. That is good for her especially since she is taking the Gleevec. Her Phos and Pot still just hang in so she will continue to do 4 packets of KPhos daily. They are also uping her Gleevec to 400 from the 300. After our chat at the clinic we went to lunch and then to Nikki's school to get situated for Tuesday. All is set and Nikki knows where everything is. She will need to build up her stamina again so she will start by going to school from 12-2:30. I will pick her up each day since the day itself will probably exhaust her. We will add more as she can tolerate. It will be nice for her to be around the class again. Big change. Hard to believe that a year and 7 months ago this all began. Thank you all for the prayers and the support. Take care all and I will keep you posted. Next CT at the end of December. They will monitor counts probably weekly.
Tuesday, November 2, 2004 1:54 PM CST Afternoon all, thought I would drop a line and let you know the latest news on Nik. She is doing good at home and still is on supplimental meds for her potassium and phosphorous. She had counts on Friday and they still need help in fact they increased the dosage. She gets through it but doesn't exactly like it. This Thursday she will have her next CT. Keep your fingers crossed and the prayers coming. With each CT the nerves get going and it is hard to focus on some things. I think I will always stress before a CT. I have been working with many people to get her back into school. Right now if all goes according to plan miss Nik will be back in a week. Next Tuesday the 9th for 2 1/2 hours. She has not been in school since April 2003. She was in 5th grade and now she is a 7th grader. I feel like I am sending her off to kindergarten, actually I think I am more anxious then I was then. Things have changed and friends have changed. It will be a transition for all of us. Thanks to her wonderful teacher Lynn, who is helping get this all in order and will even take Nikki to school 3 days a week after she has her home school time. We have a great group of friends and neighbors so in that way we are extremely fortunate.
Monday, October 25, 2004 6:48 AM CDT Good morning, just a quick note this morning. Nikki continues to be off of fluids with most counts doing well with the exception of the electrolytes. The kidneys are the problem they are still letting too much potassium and phosphorous out so she was given the option of the fluids with the electrolytes or find an oral supplement. Well you all know Nikki by now and the first choice was getting old, so Friday we took her in for her flu shot and discussed the other options. With a HUGE discussion we decided to give the supplements a shot. This is not a perscription so you get it from the pharmacist over the counter. I don't like the fact that we have to pay for it and no small co pay but it is necessary and still less then the fluids so we do it. It is a powder you mix with 3 oz of fluids. We tried and succeeded with Root Beer. It has to be a strong flavor to hide the meds but it worked. Hopefully this will be the fix. They will check again at the end of the week. Things sound good so far. No more information at this time. Have a good week and God Bless all! Thursday, October 21, 2004 6:44 AM CDT Morning all, sorry it has been a few days since the last update. Nikki had counts on Monday and all was good. She again went off the fluids with the Potassium and Phos still not seeming to do it all on their own. We have really pushed the bananas this week and Nikki has been good at following that. Nikki and I talked about how in our to keep these things up she will have to add more things in her diet or do suppliments. I don't know we will keep working on it. She has counts done again today so then we will know how it is working. She had her first H2H at our house last night. This is our form of confirmation at our church. They basically have group discussions. Now remember Nikki has not been very exposed to groups of kids since she was in school which at that point she was in 5th grade. These are now 7th graders (her same age). Conversation has changed considerably. Much more teen talk. I think this will be great for her to become a part of her age group again. Wednesday, October 13, 2004 8:04 AM CDT Good morning all, well she finally got off the fluids if not for just a couple days. Monday when they did labs they decided to see how she would manage on her own. Boy was she happy. All the basics WBC, ANC and yeh platelets at 106,000 as of Monday were good. Hemoglobin actually came up to 7.9. Today they will check again so lets hope the come up even more. The electrolytes remain about the same so today they will be curious to see if they go down or up off of the fluids. Miss Nikki is starting to want to go out a bit more and even clean her room up. School at home has been later so she gets a bit ansy as we are all gone during the day. If she continues to get stronger I am hoping to get her in to school for part days 2nd quarter (that starts November) We will do our best. Keep your fingers crossed and your prayers going her way. Every little bit helps. Take care all and I will update once todays counts come in. Saturday, October 9, 2004 6:10 AM CDT Good morning all, well another week has passed and things continue to ride about the same for Nikki. Most of the counts are doing okay. WBC and Neutrophils and ANC are good, Platelets slowly make their way up last count on Thursday was in the 70,000 range. The hemoglobin was 7 again. We go from counts on Monday's to the counts on Thursdays to see how things are going. Most days the routines are the same with fluids and Gleevec for her. She still maintains the electrolytes with help from continual hydration that contains what she needs. We are told that the chemo hit the bone marrow hard so it is taking lots of time to get back to working on its own. Not sure when the next tests will be. We will keep you posted on hour happenings. Thanks for the continual thoughts and prayers and as we know with DSRCT it seems to be about the prayers that really helps these kids too. Monday, October 4, 2004 5:23 AM CDT Good morning all, well Nikki still struggles to get back to feeling like her old self. Most counts are good and on their way up, her hemoglobin is still struggling. She again was low on the Phos and Potassium so we ran fluids all weekend. We all know she hates it but it is a necessity. They are doing labs again this morning and if the hemoglobin is still in the 7 range I think I will as them for the transfusion. She just needs some more energy. She doesn't feel terrible but she is extremely tired. I can't get her up to do anything. We will see this morning. Wednesday, September 29, 2004 5:04 AM CDT Good morning all you devoted followers of Nikki. I know some of you check daily and that is great. Well she finally go off those nasty fluids she has been on for a month now. Monday the drew her labs and things were okay, still not great but okay. Her hemoglobin was only 6.9 which 7 is usually when they say, hey she needs some blood, she has now been called a hemogoblin by my boss. Great idea for Halloween don't you think. Anyway, I talked to the doctors and home care and they both said "what do you think" Well being it was already later in the day and Nikki did not look any different then she did every other day, just tired. We all decided to wait until Tuesday and do another blood count and see what happens. So yesterday they drew again and she was a whopping 7.1 for her hemoglobin. I know not a big diff but enough to show she is going up. They will check again on Friday. She is staying off the fluids and she is eating and drinking and taking her Gleevec. She is still having school daily. She misses about 1 day a week if she is too tired. We will give her that if she needs it. SHe does good with getting all her homework done. We will see on Friday where she is at. Thursday, September 23, 2004 5:43 AM CDT Good morning all, well we made it through all the tests and things look good. She still appears to be tumor free. They still see that little area that they believe are sists and not tumors. So it is good. Put Dr. Dave on the spot and asked "What's next?" Tough one. We still have stem cells to use but being the last two chemos were very hard on her and she is still trying to recover her counts from the last one. That is not going to happen at this point. I know you all ask if she is tumor free then why more chemo. This cancer is so rare and basically not much known as far as how to keep it from reoccuring that they do all they can to make sure nothing could be there to grow and come back. She is still taking the oral chemotherapy Gleevec which is also experimentory and not sure if it is working but we will continue it because it could be helping and we know it isn't hurting. They did decrease the dose to 300 mg instead of 600 till her counts come back up. Her platelets continue to lag and she went in for a transfusion Monday. That brought them up but they came up and then dropped again so they will do counts again tomorrow to see that they are still okay. So what next you ask, well they will monitor her counts and her electrolytes since her appetite is just coming back, probably start once a week once they see they are at good levels then once the platelets come up they will again increase the Gleevec back to 600 mg and then do another CT in about 4 weeks. They will not go to long before they check because they need to keep a close rain on it. So Nikki continues to be home schooled. Until the counts and the strength are back this will have to work. I will keep you posted at least weekly, once they do counts, to let you know what we know. Thanks for all the prayers and support without them we would not have gotten through this week or the last year and a half.
Thursday, September 16, 2004 4:43 AM CDT Good morning all, been a very busy week at home this week. Monday they did Nikki's counts again and her Phos and Potassium were still low and WBC were only 200. Nikki was really tired and worn out and the nursing staff that came saw a Nikki they hadn't seen in months, she was so burnt out from everything she just sobbed. Her main complaint was carrying around a bag of fluid 3100 vas the volume. This is very large so once the clinic and home care got together they decided since they needed a new mix for the Phos and Pot they would adjust the bag size. They dropped the volume to 1090 which is some much lighter and smaller. We change this out every 12 hours. This helped and they decided to check her again yesterday. They did blood work again yesterday and not the Phos is okay and the Potassium is too high. Again they adjusted the mix. She is not eating or drinking yet which is typical for her while on fluids but it is also what keeps her on fluids. Tough one huh. Then her platelets again had dropped to 10,000 transfusion level so she went in again late yesterday for a transfusion. She made it home by about 7 last night. She continues with all the antibiotics and meds daily which at this point will not end until Sunday. Mon/Tues/Wed are all the tests. Home care will be out again today to see if the adjustments made have made things better and if she is eating and drinking today maybe they can cut the fluids. We hope. Monday, September 13, 2004 5:21 AM CDT Good morning, boy do things change overnight at the Schauts. Last Monday I wrote things were good. Well 1 am Tuesday morning the fevers started and we were off to the hospital. No counts and we were at the low point. We got home yesterday (Nikki's 13th birthday) and she has gone through a few transfusions of blood and platelets. She still has no WBC and still a low grade fever so she is still on many I.V. drugs. Since I am now officially in the nursing biz I got to take her home and continue all of if at home. She is doing 24/7 hydration with extra Potassium and Phosphorous. I do a drug called Zosyn 3 times a day through I.V. 5 am (Mark gets that one) 1 pm and 9 pm. From 2-4 each day we will run Fluconizol/Diflucan. Then she still continues GCSF and Gleevec (the chemo pills) The Zosyn is different being it is in powder form and must be mixed prior to giving it. I am learning so much about these things. Hopefully a week more of them and we will be done. Next Monday are tests and we will see then. They will check her counts all this week to make sure she is coming back up with the counts. Monday, September 6, 2004 7:03 PM CDT Hi all, hope you all had a good holiday weekend. We enjoyed just hanging around home. Nikki made it through her "last chemo" we hope and is very glad to be done. Since she got a fever last time we have made a few changes by adding more phos. and potassium to her fluids and we are continuing fluids at night for about a week. Since she doesn't seem to have appetites after chemo this should help. She is also on the GCSF right away. They did a CBC today but with the holiday we have not heard the results. I will get them in the morning. She continues to make me aware of how much she has grown up during all of this. She is still taking her pills and some days it still is tough for me to get her to take them. But today she told me she knows we only push because we love her and she also knows that if we didn't push she wouldn't take them and then it may be just the thing keeping cancer from coming back. Friday, September 3, 2004 5:45 AM CDT Good morning all, well today is it, it is suppose to be her last chemo. I say it with hesitation because you just never know. This week is tough again, like last time it is a very high dose of chemo and she uses her BAD drip often to keep from getting sick but in turn she is completely out of it as far as being tired. She sleeps 2/3rds of the day, with the exception of getting up every 1/2 hour to use the restroom since the fluids are also of a high volume. We have been counting down all week so now tomorrow morning we will stop the fluids during the day. Since her Potassium and Phosphorous dropped and she had the high fever before we will continue to do the fluids at night to make sure she still gets enough of what she needs. As I have stated before as her counts go down so does her appetite. This week during chemo she eats all the time, once the WBC start to go down the appetite is down and as they come back so does the appetite. We will have to watch her close again. Friday, August 27, 2004 5:47 AM CDT Good morning all, not much happening this past week. Nikki will have labs done again today to see if she is okay for hopefully the last chemo to start next week. I not sure what will follow but Nikki is happy to think this could be the last. We are preparing for the onset of school too. With Eagle Point under contruction it should prove to be interesting for Em to start. We don't know for sure how things will go for Nikki. She has open house on Wednesday next week. It will be a busy week at our house with chemo all week (maybe) soccer practice for Em and open house for Nik and Mark will be heading to Decator Alabama on Wednesday for work (I believe that is where he is headed) at least he will only be gone for a night. Then the holiday weekend will give us some time to rest after everything. Nikki's birthday is coming up 9/12 the big thirteen (a teenager is a BIG deal). Her counts will most likel be way way down so not sure how much we will be able to celebrate that weekend. She wants family to come but I think we will have to keep an eye on her. Monday, August 23, 2004 6:24 AM CDT Good morning all, well Monday is here and Nikki will not start chemo this week. Actually we found that out on Friday. After discussing with her doctor and nurse, it would probably be pushing to have her counts high enough for them today so today they will do the counts and then probably again at the end of the week or Sunday. We will plan to do chemo on Monday thru Friday next week. It will be a pretty caotic week for all of us. Mark will be going out of town for work, Em has her first soccer game, practice and Nikki has open house at her school along with the chemo. There is never a dull moment. I enjoyed a great weekend with some good friends at my sisters cabin. Four moms that did really nothing but veg out. It was such a good feeling not hearing the phone ring or having to get up every time someone needed something (Thanks Kim). Problem is we loved it so much that we now want to continue a few more times. We did however really miss the families. This week shouldn't be too busy so we had better rest up for next week. School is almost upon us and the summer will be done. The State Fair starts this week, a sure sign summer is almost gone (the weather over the weekend suggested it was already gone). Enjoy what is left of the summer and I will keep you posted on her counts and the next round of chemo. Thursday, August 19, 2004 5:57 AM CDT Good morning all, counts were done again yesterday and the platelets did come up to 20,000 from 14,000. They are still talking chemo next week but they need to get to 100,000 and if things go normally for Nikki she will not be that high. They will do the counts again on Sunday and say yeh or neh. Both Em and Nik are doing good. They get a bit bored now during the days. Em still is challenged in the room organization skills. We are working on that, I am just hoping that as Nikki did, does a complete turnaround and becomes much more organized. Em is starting soccer now and again Mark is helping coach. I am glad they both are doing this together. School is coming fast and Em got in a class with both Meg(h)ans. She is excited about her class this year. We still haven't gotten the final word on Nikki's schedule but with chemo next week or the following counts will not be good for starting. I have talked to the social worker and also emailed the school so all are aware. I will push more within the next week or so and talk to her home school teacher from last year too. If all goes well we will be able to get her in for part of the day. It is a weird feeling when you are nervous about a 7th grader going to school as if it is her first day of school. It has been a while since she has been in that atmosphere and it has changed so much since she was in 5th grade. She does not seem to be nervous at all about it. Time will tell I guess.
Tuesday, August 17, 2004 6:03 AM CDT Good morning all, well it is now the 3rd week since Nikki's chemo and they did CBC yesterday. She just finished the GCSF and the fluids on Sunday night so she was happy. Her WBC were 8500, hemo 9.7 ANC 7225 but the platelets still lag behind with 14,000. Transfusion level is usually 10,000 and below so they will check again on Wednesday. This is normally the time now that the platelets come up and being the GCSF is done she should start to come up. She may have chemo next week but the platelets would have to get to 100,000. Could be tough but we will no more later in the week. She has gotten her appetite back with a vengence. Usually the case at this point. We would like her to get some more exercise, we are pushing to have her get outside more. That one is tough. I will keep you posted on how things are going.
Friday, August 13, 2004 7:48 AM CDT Hi all, Nikki had her counts done yesterday and the WBC are finally coming up at 1.1 or 1100 this is good and should be steadily improving, the hemoglobin is 10 and platelets are 29,000. Not great on the platelets, not transfusion level but we are hopeful that now they will come up, we will just have to watch her. The neutrophils are not all there either with ANC of about 800 so we continue the GCSF to help the neutrophils. They will do counts again on Monday. She is still low on Potassium and Phosphorous so we also will continue the IV fluids at night. Everything will continue through Sunday and see on Monday with the counts. Nikki is really unhappy about having the fluids going but I know that now that the WBC are up so will her appetite and she can naturally help bring everything up. We did also learn that they will do one more chemo round the same as they just did. They will try to have her counts higher at the time of the chemo so she won't get hit as hard. Still we don't know what will follow but we will keep you posted. If all goes as planned chemo will be the week of 8/23.
Wednesday, August 11, 2004 5:34 AM CDT Hello all, sorry I have not written for the past week. We have had a busy week. Last Wednesday when I returned from work little miss Nik had a bit of a fever, approximately 102. This was not a common thing for her so we called the clinic and of course we were told to go to the ER. Mark and I took off with Nik while Em was able to go to her friend Meghan Jo's (thanks Mary Jo and Tom). We had been in the hospital ever since, returning home Tuesday afternoon. She kept a fever going until Monday. She spend about 24 hours in the ICU due to her blood pressures being extremely low. They had her on 3 antibotics first then switched on Sunday to another one. All were IV. They checked for infections in everything. All tests were negative. They are thinking there may have been a slight infection but mostly they are contribution it to the neutropinia (I am not sure of that spelling). That is the very low blood counts. She had no white blood cells, no absolute neutrophil counts her hemoglobin was very low. While in the ICU she received 2 units of blood, plasma and 2 units of platelets. This all helped and brought the blood pressure back up. Actually they were going to give her additional meds to bring up the blood pressure but by the time they got her to ICU her blood pressure had already come up to a level where they did not have to worry. The additional blood products brought her up more. It was hard for them to understand because of course Nikki felt fine and showed no signs of being sick except for the fever. The fever finally broke and they took her off antibiotics and said she could go home. During all this her phosphorus and potassium and calcium also were low so in the IV fluids they took care of the Phos and Potassium and then she has been living on 12 tums a day which in turn is causing a terrible case of diarrhea. They are cutting back on the tums a bit to 8 and I am hoping that the appetite will be back now that the counts are coming up. Yesterday she had about 450 white blood cells and an ANC of 112 which are all up. The platelets had dropped again to 11 so they transfused before we left. It was nice being back at home and as I left this morning everyone was sound asleep. Just another bump in the round I suppose. With all of this they are not sure if they will try that chemo dose again. We will be back at the waiting game to see what is next for Nik. We thank you all for the thoughts and prayers and know that with out them we would not have made it this far. Monday, August 2, 2004 12:05 AM CDT Hi everyone, well its another week off of chemo. Start of about 2-3 weeks while the counts go down and back up again. She is on the GCSF and will be for about 10 days. We went to Green Bay on Saturday to take Hillary back and the girls came home yesterday and were already bumming. Emile was in tears. I guess they want her back. Home care came this morning to draw labs so we can see what her counts are and move ahead from there. We talked to the social worker (Theresa) at clinic on Friday and she is going to start to look into the school issue for Nikki this year. We would like her to be able to go in part time but do the bulk of the main subjects with Home School. Things need to be put into motion since there is only a month before school starts. Too many things happening and summer goes to quickly. I will let you know what her counts are. For now, this will be a more of a home week. Thursday, July 29, 2004 5:34 AM CDT Good morning all, Today is day four of chemo and I have to say this is the worst week in a long time for Nikki. She is not getting really sick but sick of the whole thing basically. They have increased the amount of the Ifosfamide (I believe this is the one, the other is Etoposide that she gets) anyway she started out getting a headache and feeling dizzy so she is taking more of the BAD drip (Benadryl, Adivan, Dexamethazone) so she is more tired and hungry. She sleeps lots more. She hates it. She is really having a week where she says this sucks. She said she wants to be normal and have a normal summer. How I wish she could. There has been many tears and she has even said she hates hormones. She will be 13 in September and there is one thing normal about her life, she is a girl who is emotional. She is also upset that her cousin is going home on Saturday. We will be spending time at Mark's sister Shelly's when we take Hillary back home. I don't think Nikki will want to leave. It has been great having Hillary around. Monday, July 26, 2004 4:59 AM CDT Good morning all, well today we start the next round of chemo. They did counts on Saturday and her platelets were over 100,000 and her ANC was good too. We went to the zoo on Saturday. Como and it was extremely packed. The girls had a good time and then we went home to start scrapbooking. All the girls a making albums for there week at camp. Hillary and Nikki are working on it but Em is not too focused yet. We will be taking Hillary back to Green Bay after being with us for almost a month. I think she misses home but if the girls had there way she would probably stay all summer. At this point it sounds like she will come back next year if it works for everybody and if we can get her parents to let her come again. We should have another niece/nephew in a couple days. When we got back we will get to meet the newest member the the Schauts. Hope everyone is doing good I will let you know how chemo goes this week again. It will be a long week but we will be glad when it is done. Wednesday, July 21, 2004 7:36 AM CDT Good morning all, well Nikki had her counts done yesterday and she is finally coming up a bit. Platelets were 85,000 and hemoglobin 9.8 and then the WBC 2500 and ANC was also good. They will do counts again on Friday to see if she has hit that ever so important 100,000 in platelets to run the chemo next week. We do believe that will happen so chemo is scheduled. The girls (all 3 with Hillary still hanging around with us) are doing good. Some days more boring then others. I am going to get together some scrap booking things for the girls to do albums of there girl scout camp so they can do that this weekend and next week. Hillary is still planning on staying until Mark's sister Saucey has the baby. I think that if she doesn't have the baby before August we may have to take her back before hand. I think she gets a bit homesick and realizes that Nik and Em are just like all sisters and fight pretty good. She is having to tell them to knock it off on a regular basis. We are really glad she comes to visit and stay, she has really become part of the family. The girls do not want her to leave. It will be good if she is here again for Nikki's chemo so Em has someone with her at home next week. Saturday, July 17, 2004 5:49 AM CDT Good morning, well it took almost the week but I got some answers. (Our doc was having to cover many areas and everytime he tried to call we weren't there and vise versa) I emailed my questions(I have gotten pretty good at guessing email addresses). First question was how was the CT. Things are the same and a bit better. This confused us since we didn't believe there was any tumor left so how does it get better. Well there is a little area around the liver that has been there that was not considered tumor I understand by the surgeon that has gotten smaller. They are not sure what it is but it could be lots of things. Then the Gleevec. At this time since there has been no problems with it and things are not showing up they will continue with it, hoping that it is helping. So how long? Undetermined.
Wednesday, July 14, 2004 6:44 AM CDT Good morning all, well just a quick update. Nikki's counts were up, Hemoglobin 8.9 from 7.1 last Thursday and 49,000 up from 27,000 for the platelets. They are slow but surely coming up. Dr. Smith explained that since her last chemo was so long after the previous chemo it would be expected to hit harder and keep her lower longer. (Kinda like starting from scratch) We were not able to get results of the CT yesterday. They wanted to have time to compare with all the previous before they come and talk to us. The CT itself went okay. Nikki had been nervous since she had thrown up last time but this time went fine. She had the nurse Sue who always gets the I.V. the first time for the contrast. Nikki and I know that face and appreciate when she can come and do it. The girls (I do mean girls) who run the CT are great with Nik. They are young and one has a nose ring if that tells you anything about their ages (or maybe I am just getting old). They are always there and treat Nikki really well. Well I will update you later when I hear. Friday, July 9, 2004 5:16 AM CDT Good morning, well today is the last day of day camp for the girls. I think they have had a good time. I know I have done a lot met a lot of people and learned a bunch of things. I also know we are all tired. It has been a good week. They drew labs after camp yesterday and called us late last night with the numbers. I am still not happy with the numbers. WBC are up and good. ANC is good. These are good since they are vital to the fighting infection so being out in public is good if these are good. What I don't like is the Hemoglobin has dropped again is just 7.1. The doctor tells me that this is okay and Nikki should be at the bottom with that and on her way up now and will not need counts again until we do the CT on Tuesday. Okay I guess that since we have been doing this for so long and they now KNOW Nik they know by history she does okay with this. Me on the other hand have also learned and know that at the beginning they would be really concerned and would be transfusing her. I have to train my way of thinking and not get so uptight about it. The platelets are also still low. Only 27,000. They also believe they should continue to come up.
Tuesday, July 6, 2004 4:38 AM CDT Good morning all, well the latest news is Nikki's counts are still not to MY liking. The hemoglobin is still really low and so are the platelets. The platelets are coming up but extremely slow ant the hemoglobin just drop little bits but really not enough to transfuse. I guess when you deal so much with it you start to get obsessed. The homecare people were not concerned. The girls and I are at Girl Scout camp this week so I have told Mark to call the clinic and talk to our regular nurse and see what she thinks. I know with Nikki's counts the way they are she will be moving pretty slow this week and not have a lot of energy. We will just make the most of it. It was quite buggy at the camp so we will have to O.D. on the bug repellant. The girls should have fun and hopefully meet some new girls. I am going to do a few hours of work each morning. It will be a tiring week but fun too. Hope you all had a good holiday weekend and are ready to be back at the regular drills. Friday, July 2, 2004 5:24 AM CDT Good morning everyone, hope you enjoy the slideshow. Another caring bridge mom gave me a tip to enhance the pictures. Pretty cool huh. Well Nikki is still trying to recover from the chemo. She is basically fine but the counts are not coming up very fast. Monday the WBC and the ANC were good and but the platelets and the hemo were low. Yesterday the WBC and the ANC went down so did the hemoglobin but the platelets went up. That would probably be because they discontinued the GCSF. The GCSF will help everything except it will hinder the platelets. I am sure they will be back on Monday to check. I tried to talk to the clinic yesterday but they were busy and all the regular people for Nikki were gone. I will have to research things more today and try to get a few answers on what we should be looking at doing. They have another CT scheduled for the 13th. Needless to say each one still gets me a bit on edge.
Monday, June 28, 2004 12:49 AM CDT Hi all, well we had a great time with Nikki's Make a Wish. Her counts were low and she was tired but everyone involved was great. We had a great limo driver Peter and he told us all the celebs that he had driven around and the goods and the bads. Of course, one of our favorites Kenny Chesney was one of the nicest. Then our waitress at TGIFriday's June was also a great person. She told me about another family who she is following so I have already emailed them. Then on to Nik's favorite Best Buy. She was really tired by this point but within a half hour she had her laptop and TV. The people there were all great, Chris, Chris, Brian (Best Buy and Make a Wish) were great. They gave Nikki a bunch of computer supplies and the GEEK SQUAD is even coming to set up everything and get her wired, wirelessly. She is excited. I will tell everyone to go to Best Buy in Woodbury since they are great to work with. The even had Reba playing I'm a Survivor when we came in. (Nikki caught that). By the time we got home she was ready to get on the computer and she played the games all weekend. Emile was happy with the money she also was able to spend.
Friday, June 25, 2004 5:49 AM CDT Hi everyone, hope you enjoy the new feature. It is more fun and I will really try to add many more photos. I am having trouble with the home computer that has all my photos but that soon will be fixed.
Tuesday, June 22, 2004 5:33 AM CDT Hi everyone, well chemo finished and Nikki is now doing GCSF at home. Her blood counts are going down with her Platelets being pretty low already. They think the Gleevec is really hindering the platelets and they will watch them closely to see if they need to stop the Gleevec for a short time for them to come back up. At this point they will just watch and see. They continue to monitor counts on Mon/Thurs till they come back up. We will have to be cautious on Friday for her make a wish. We will keep the touching to a very minimal for sure. She is so excited. I will keep you posted.
Thursday, June 17, 2004 4:45 AM CDT Morning all, hope everyone is enjoying the start of summer. Well Nikki is going on day 4 of chemo. She will be extremely happy with getting rid of those fluids at the end of the week. I found out this week that there are only about 5 families who do this chemo on an outpatient visit. Most still have a hospital stay. I was not aware but our nurse, Caron, told me we really were the first to do this at home. Nice to know that we have caught on a bit anyway. Nikki got the call she was waiting for yesterday, Make a Wish has set the date for her so next Friday she will get her wish. She will have the limo rid and the shopping spree at Best Buy. It sounds like there could be quite a bit of hoopla with this. Mark and I are not the best and handling lots of attention (not to mention Nikki) but I think in this case it will be a good thing. Monday, June 14, 2004 3:49 AM CDT Hi all, well it has been a bit since I was able to write. We made it through our vacation. It was great, and apparently timed right. As it rained here we only had a day of rain and it only caused us to miss Mark's event the races. We hit Wisconsin Dells, Sears tower, six flags, and Door county. I would have like to do more in Chicago but Nikki just couldn't do that much walking. The girls really enjoyed the view though. Door county was my favorite but not the girls. Em really thought it was a very boring drive. Mark and I will have to go solo sometime to really enjoy that. The dells were all of our favorite. Riding the ducks was fun for all of us and the hotel with a huge waterslide outside our window was good for Em. Nikki was not able to enjoy as much as we hoped. We just could not cover the port well enough. She did go in waste deep and seemed to enjoy that. Now we are home and back to the same old drill. Home care came to draw labs yesterday. I am off my game and did not get the results but we are suppose to start chemo this morning. I am doing the early shift at work to get in a few hours each day. Didn't help that the system is locking me out of some things. I will update as the week goes on and as I get some more information while I am in the clinic all week with Nikki. Tuesday, June 1, 2004 5:37 AM CDT Good morning all, hope you all had a great Memorial weekend. The weather did not stay real nice but it has got to get better. I am looking forward to some summer weather SOON. Things are good for Nikki. She had a CT on Tuesday last week and still no signs of anything new. She still has those little areas around the kidneys that she has had from day one but the are saying those are probably just cists and not tumorous. They are planning on starting chemo when we get back from vacation on the 14th. It will be another 5 day treatment. I am not sure and I don't think they are either how long they will continue with all of this. Her platelets were lower but not at the point of concern. They will do counts this week to see where she is at. We painted a beautiful sunset on her wall this weekend. Taking all those stuffed animals out was a chore. It took a bit of time but the whole room got painted and the biggest wall has the sunset or sunrise whichever your perspective gives you on it. Thanks to mom and my sisters for the help. It was fun and rewarding. Nikki also got her letter from Make a Wish and she gets her shopping spree. Along with her shopping spree (which she gets to go to in a limo) she gets to take her family to dinner. She is really excited about it. We have to call to get all the details on when but I will keep you posted.
Wednesday, May 26, 2004 7:58 AM CDT Good morning all, we had the CT yesterday. No change since surgery/radiation. All is still looking clear. The few areas that are there they still just consider a cist or something of that nature. No concern. Still pretty unsure of the direction but we do know we will be able to take our vacation and then start chemo on the 14th. Probably the 5 day chemo. Basically the reasoning is to make sure nothing starts up and because they just don't know how to proceed so it is trial and error. We take each day by day and as things stay good we are happy. Nikki pretty much feels the same way. School ends for her on Friday. This weekend we are doing her room. Make a wish meets I believe next week so we should hear in a couple weeks. Wednesday, May 19, 2004 5:41 AM CDT Hi all, sorry it has been so long since my last update but our lives almost seem normal again as normal as they can be anyway. Nikki has still not had any treatments or anything since radiation ended (except for a blood count done) but not even that. She has a CT next Tuesday and then we will see and hear what is next (keep your fingers crossed and prayers going for that day) we just want to see a clear scan just like after surgery and during radiation. She is doing good and met with Make a Wish foundation last Thursday (Craig and Brian). They were great people and brought little goodie bags for both girls. Nik's main wish is for a shopping spree at an electronic store and gee guess where Brian (from Make a wish) works, uh Best Buy. This happened to be his first wish to work on and he is already got ideas. He checked out her room since she wants a computer and a flat screen TV. I may never get her out of her room again. Em is not happy and gets it but still doesn't think it is fair. We have told her she will have something special too so we are working on that. Both girls want to have there rooms done and justifiably need it. We will start with Nikki since we should have that done before the wish is fofilled. I have my mom and sisters going to help with that. Then we will do Em's. There is always a project or two that needs to be done. Monday, May 10, 2004 11:41 AM CDT Hi all, well this is the first week with nothing at all scheduled medically for Nikki. She has tests (CT) scheduled for the end of the month. 3 Weeks without anything. She continues to do her meds daily. Gleevec, Bactrim, Prevesid and Zophran as she needs it. Talking to other parents, Zophran is everyone's favorite. It works well. We are busy with the end of the school year, sports (Em softball with her Dad and best friends Dad coaching), and girl scouts. I can't wait for summer for hopefully some fun. Monday, May 3, 2004 12:03 AM CDT Hi all, well just got done chatting with the clinic and now that radiation is complete they are not planning on doing anything until w/o 5/24. Surprised me. They will schedule some tests that week. I am really not sure what tests and neither was the nurse at this time. I will get a call later letting me know. Counts are looking good so no concerns there at all. As far as Nikki herself is doing. She is doing good. She got trained to a program aid for girl scouts so she can assist with camp and meetings. We will have some more training for her before she is able to fully do camp but she will be ready for summer day camp. The year has gone by fast so far and I don't know what this next quarter of the year will bring. We just keep hoping that nothing appears on the next tests. I will keep you all posted as I hear things. Take care and thanks so much for the support. Nikki is doing well thanks to all of our friends and family supporting and praying for her. Thursday, April 29, 2004 5:47 AM CDT Good morning all, well hopefully only a couple days of radiation left. I have not heard a definite from them since Monday when they talked about doing a couple days next week. I will check once we are in today. Nikkis is doing better with it this week. Could be just because she knows this part is close to an end. Yesterday being it was SOOOO warm, we had to get the girls some squirt guns. Nikki and Em and friend Megan were out getting wet last night. It may have been just one day but it almost felt like summer. We can handle watching the girls out running (well not quite for Nikki) around and having fun. Emile is doing quite well with playing ball. She may have found the sport for her. She has two more practices and then her first game next week. She has two pretty good coaches, Em's friend Megan's dad and of course Mark. With the two of them they should do alright this year. Tuesday, April 27, 2004 5:45 AM CDT Good morning everyone, we may be on Nikki's final week of radiation. I will be so glad when this is done. She has lost her appetite again and since she started she has lost about 12 pounds. They don't like to see the weight loss but the dietician always checks in with us. She basically nibbles during the day, never much. We did give her more fluids on Saturday night. I know now that whenever I think she needs them I can request them. I used to get nervous that they would have her in the hospital if I even suggested something but I now realize that they know we can handle things at home and I think that they would much rather her be at home too. She has had some shoulder pain which I am not sure where that is coming from but it could be she just was sleeping wrong. She is awfully tired and really just wants to hang out on the couch. It will be nice to get her a bit more energy to get out, if the weather decides to stay warm for a while. Basically a little more then a month left of school and Em will be home all day with her. That could be good or bad. They are sisters and sisters tend to pick on one another quite frequently. After radiation we are expecting to do more chemo, I think they will give her a couple weeks before they start. Her counts have been good. Platelets were under 100,000 and they usually want those over 100,000. I will let you know how the week goes.
Thursday, April 22, 2004 5:06 AM CDT Good morning, hope everyone is doing well. Nikki is at day 14 today with only 7 treatments of radiation left at this point. (Unless they change their minds again) Things are continuing to go okay. At the end of last week she got sick and lost her appetite. She had some bad stomach pains. Over the weekend we gave her fluids at night. This kept her from getting dehydrated. She is doing better but her appetite is not as big as it was. This is okay she is still eating just less. The appointments go quick some days and others are longer. They started blocking the kidneys this week and next the liver. This is to keep from damaging them. Not sure what is next for Nikki. They have said chemo again so I am sure that it will be at least 2 more rounds (this was on her original plan) Time wise I am not sure. They had stated that it would be a couple weeks after radiation to give her a break. We will see. If I were to take a guess I would say probably around the 17th of May. Saturday, April 17, 2004 7:17 AM CDT Good morning, well another week of radiation down. This was not as smooth a week. On Thursday she started feeling sick and throwing up. Nikki was having lots of stomach pain and really didn't eat or drink much besides her medications on both those days. She was able to get through the radiation treatments but was uncomfortable. We talked to the doctors and made a trip into the clinic after radiation on Friday. They gave her a liter of fluid which seemed to help. In talking to Dr. Dave as Mark and Nikki call him (easier them Slomiany) we discussed what would be the best way to handle it since it was surely the radiation causing it. Surprisingly it was not just them telling us we should do this, it was more like what do you think. We came to the descision to give more Zophran since that has helped in the past and maybe we just need Nikki to take it regularly and then we will give her fluids every night. That should keep her from getting dehydrated if she does not feel like eating or drinking. They will have home care draw the labs on Monday morning again before we go into radiation. Hopefully this will get Nikki through the next couple of weeks. I will let you know how things go the next couple of days. Wednesday, April 14, 2004 4:51 AM CDT Good morning all, well we have gotten through the first week and a half of the radiation with no ill effects. We have found that the Zophran before does the trick and she doesn't get sick. (We found out because the day of the PET scan (I) forgot and she was sick during the whole thing). Anyway the PET scan came back negative so there was no tumor there. What a relief that was to hear. Nikki is doing good and spending more time outside in the evenings. It is really nice to see her getting around and being outside. We had a good Easter at my mom and dad's in Cannon Falls. The girls really missed there cousins who were at their dads but they plan to get together this upcoming weekend. I can hardly believe it is half way through April and the school year is almost done. Nikki continues home schooling and we hope she will be able to go back in the fall. We just have to see how treatments go this summer and into fall. Maybe we will even find something fun to do in between treatments this summer.
Wednesday, April 7, 2004 4:50 AM CDT Good morning everyone, hope you are enjoying the weather around here. It is nice to get out and walk. Well we have been going at this officially for a year now. Currently Nikki is doing her radiation. Approximately 20+ days of this. No problems thus far with the treatments. We talked to the radiologist/oncologist yesterday and when they did the baselinc CT for the radiation they noticed something in the Pelvic area. It was there in the beginning but looks larger. I am not getting to uptight about this right now because the surgeon did not see anything else so according to the doctor this could just be a deposit from after the surgery of fluid/residue for lack of the right terminology. They are planning a PET scan soon to check it out. She has not had one of these tests that we are aware of both what it is like is a bone scan but of the soft tissue. An injection is given, I am understanding it is like the contrast for the CT, then a couple days later the scan is done. Takes time to get into all the tissue. I should find out today when that will be. If this is tumor they will adjust the radiation and give higher doses in that area. We will just have to wait to find out. We just found this out yesterday so sorry to the family that is reading this and we have not called yet. The day goes by fast and Mark and I don't always get to the phone calls. We will talk to you all soon, after we find out more information. I have noticed that Nikki is one of the youngest by far of those getting radiation at the clinic. I think Grandpa Olson would just enjoy the social aspect of what goes on there. You get to see the same people daily and some of the people there have really gotten to know each other. Some of the conversations we hear are very enlightening to say the least. Wednesday, March 31, 2004 5:10 AM CST Good morning everyone, well since my last entry we again had a change of plans. We went in for radiation as planned on Monday and when we got there, they decided she needed another CBC (complete blood count) so we went to childrens for that (accross the street) Once we got the results which showed all of her counts as being fine. They decided that they wanted to wait a week so they would have been at a good level for a longer time. So home again and back to the waiting game until next week. They decided to be prepared this time and are sending home care out on Sunday to do another CBC and then our nurse at the clinic will come in Monday and get in touch with Radiation and see if the numbers are okay and then call us to come in. We still have appointments in the afternoon so that helps me out. I can get there and still be back in time for Emile to get out of school and still get the time needed in at work. It gets to be long days some days with the running around but not too bad. We have also rearranged Nikki's schooling so she will have school in the morning after Emile goes to school. This will be better for her being less tired in the morning and better for the radiation schedule too. Not much time left in the school year but I believe we will have Nikki working on something during the summer. Wednesday, March 24, 2004 5:02 AM CST Good morning all, well since my last entry we have been busy. We did go to Green Bay this weekend. Nikki and Emile had a good time seeing cousins and friends. As usual we kept moving from place to place to be able to see as many of Mark's family as possible. We got to see the majority of the family. Monday we saw the radiologist and had a CT. Nikki enjoyed the staff at the radiologists. They were very amusing. It was a long day but she is all set up to start radiation on Monday. It will go on for about 3 1/2 weeks. They do the best they can to accomodate our schedule so with there help in talking to someone else, I can get in in the afternoon. This will allow me to work in the morning and Nikki to have school in the morning. Then we will be home in time for Emile to get home from school. Nikki is not to concerned about it. Just another step in her treatment. The meds are going good. Every once in a while she gags as she takes the pills. Only once in a while so most of the time it goes well. We have found with the Gleevec she needs to eat right away after. She gets an upset stomach otherwise. I was so excited yesterday when I got home to find her outside. Her and Em had been out shooting hoops. She has not been able to do that since she was diagnosed. Then to make it even better we went on a family walk at her request later. The last time she tried to walk around the block was over a year ago. She got sick not even making it half way around. She made it around the block. She was tired but it won't be long and she will be running it again. Hopefully we can get her back on her bike. Anyway things are good. Take care all and thanks again for the prayers. You can see each day is a new accomplishment for her and the rest of us in the family. Wednesday, March 17, 2004 5:01 AM CST Good morning all, things are going pretty well. Nikki is at home and following a normal routine again of her meds and home schooling. She is doing good. The Gleevec seems to be going okay. She has noticed that if she takes it and does not eat she gets an upset stomach. She has an appointment today with the surgeon to make sure she has healed good from the surgery. I have not seen any problems there. Now on Monday they have scheduled us for another appointment with the radiologist and then for another CT. It is sounding like they may start radiation the later part of next week. We have started the GCSF to help bring up her counts but I wasn't sure if they would start the radiation until the counts were at a good level. Apparently they feel they will be okay. I will know more probably later in the week. I will touch base with the clinic to make sure we have a heads up. We have decided to visit the family in GB before she starts the next treatment. The girls have been looking forward to that. Thanks everyone and I will let you know what is happening when when they tell me. Friday, March 12, 2004 5:15 AM CST Good morning, well one day left of chemo. Nikki counts down every day. Things are going well. We now have no problem taking the pills. Each day now Nikki reminds us to give her the pills. She grows up more and more each day. She will start the GCSF on Saturday to help the counts come back up once they come down. The Gleevek will also keep the counts lower. Nikki and Emile are hoping for a trip to Green Bay in the near future. Look for us back there in a week or so (if they have it there way). Mark has been working a lot so I think we need to get away for a bit. Hope everyone is doing well. Keep in touch, we love hearing from you too so drop a note once in a while. Take care all. Wednesday, March 10, 2004 4:43 AM CST Good morning, well we are going into our third day of chemo. Things are going okay. Monday was the long day of course. One thing good about that was we missed all the accidents that happened due to the snow no one knew was coming. By the time we left and got home it was after 4:30. We didn't get to start the Gleevek until yesterday. We didn't get the perscription until yesterday. We got in and it was not capsules as expected nor was it not just one. Turns out she needs 300mg twice a day which is a total of 6 pills a day. This is a challenge. They said they could be disolved in water or apple juice. I wouldn't recommend that. Tried it and failed. She threw that up before it even got to her stomach. (Along with everything else she had had). Then we discussed it and said there is only one way to do this and that is to swallow it. She got herself calm and one at a time took the pills last night. I told her each day would be easier and she knows the importance of them so we will manage. It really helps when she reads about what the medication is for. See the link below for information on Gleevec. She also needs to take Prilosex for her stomach. This is to protect her stomach. They have dissolvable tabs that work really well. Today should be a shorter day. Caron is always trying to keep things moving so we get out of there quickly. (Thanks Caron)
Monday, March 8, 2004 5:17 AM CST Good morning all, today we start her 5 day chemo. This is the same as the other 5 day chemos. It is outpatient we just spend the day at the clinic. Not so bad. They are suppose to be adding in a new chemotherapy drug Glevick. We will see how that goes today. This week will be a long week just because I try to get a few hours of work in before chemo and Mark is working many hours. Since he started his new job, he has been working almost every weekend. We are not complaining (at least not too much). I like having him around I guess. If you haven't checked in in a while, please look back at recent journal entries to see what will be going on for Nikki in the next couple of months. As things get firmly into place I will update everyone. Have a good week everyone and I will let you know how things go. Thursday, March 4, 2004 5:03 AM CST Good morning everyone, well we did now have a plan to start with. Our schedules will again get busy. This Friday Nikki will go in for a CT to get a baseline to start the next part of her journey. Monday we will go in and start another round of the 5 day chemo (outpatient). She will also start Glevick. We will have to see how that helps or what side effects there is with that. I will get more information on Glevick from her oncologist Monday. Then it sounds like radiation will follow this round. I am guessing that will start either the end of the week of the 15th or the week of the 22nd. This will be a 3 1/2 week process. This will probably be followed with another round of the 2 day chemo and then a 5 day chemo. Those last two rounds of chemo were all part of her original treatment plan. By the time this is done we will now be into Mid to end of May so we can see what is in store for us after that. All we can do is keep praying that whatever they do do will prevent her cancer from coming back. She is handling all the information she receives very well. She knows that we just have to continue to do whatever is necessary to beat this. All I have to do is keep watching her smiles. As you can see it is a pretty powerful smile. Tuesday, March 2, 2004 6:02 PM CST Hi everyone, I am sure you are all curious as to what was decided today. We did a bunch of talking but no definiative plans yet. We came out of there a bit down since we realized that we are only part of the way through this journey (for lack of a better way to put it). We really don't know how long it will go. Surgery was better then they expected and sounds like it was better then what they would have thought last year. Now the focus is on making sure whatever can be done will be done to make sure this does not come back. This cancer is known to come back and usually quickly so they will start things soon. What did we find out? Well, they will probably try a new form of chemotherapy called GLEVICK. I have tried to look it up and have not found much on it yet. It is new and in a capsule form. As you are all aware, mention the word pill to Nikki and that is worse then any surgery. We have discussed it and she knows that this would be something that could go in a drink. This would be something that will be taken daily for who knows how long could be months. Yes, this will affect her counts and they will go down but it will be monitored just like the other chemotherapies. Will we know if it is helping? Probably will not have anything confirming that it is doing anything right now. We will have radiation and it will be about 3 1/2 weeks. This will have minor side effects but will not be anything to be overly concerned about. Hair loss is not a side effect except on the radiated area. Other chemotherapy will probably happen too. Monday, March 1, 2004 2:24 PM CST Hi all, thought you might like to see Nikki since surgery. She is doing really well. Tomorrow we will find out what is next. Hopefully we will get a new treatment plan. It will be a long day by the time we are done. Just an FYI on the whole family. Mark is enjoying MANY hours at his new job. Nice for him to be working again. Emile and Mark are signed up for ball this spring. Mark will be assistant coach along with a friend/neighbor of ours. I am still working and now with Mark back to work my schedule will again depend on Nikki's treatment. I will update tomorrow after we hear the plan. Take care all. Here is a prayer sent to us from a couple at our church that have been faithfully praying for Nikki with so many others. Saturday, February 28, 2004 6:21 AM CST Good morning all, it has been over a week since Nikk's surgery and she is doing extremely well. You would never even know she had surgery. We still have no definitive plan for the next course of treatment, but we have appointments on Tuesday with them to hopefully know where we are headed next. It is coming up on the year since she was diagnosed. We still have plenty of road to go but with our great support system, we should get through that too. Nikki basically is not worried now since the surgery was the one thing she dreaded and now realizes that was not as bad as she thought. The tape is starting to come off the incision now and it looks pretty good. Thanks everyone and I will update on Tuesday after we find out the plan. Probably Tuesday evening. Keep checking in and have a great weekend.
Tuesday, February 24, 2004 8:46 PM CST Hey everyone, Nikki is doing well being at home. We have heard bites and pieces of information from the oncologist about the results from pathology. At this point he is saying about 99% of what was remove is dead cells. There were microscopic cells that appear to be live cells. This is better than what was expected from the oncologists. We have appointments next week with both oncology and radiology to discuss things further. The oncologists are still looking at chemo, radiation and stem cells before all is said and done. No order is determined yet but hopefully by the end of the week. We will wait patiently to see where we go from here. We are just so blessed to have such a strong young lady. I will keep everyone posted as we find out more information. Monday, February 23, 2004 2:32 PM CST Hello everyone, well we made it home, about noon today. Nikki is doing well. Still she has taken no pain meds since Saturday night. She is pretty amazing. They can't figure her out. The nurses continued to ask thinking she was just not telling them but I don't believe that is the case. She has been walking around okay. Short distances, no marathons for a while. She can't doing any wrestling with Mark for 4 weeks. They have still not received the pathology reports yet. Hopefully late today or tomorrow. We will see the oncologist next week to discuss the new plan. Again, we can see the power or prayer brought her through another step in her treatment. With the cancer removed, (at least that is what we know now) we can go to the next step of preventing it from coming back. I will keep you posted. Friday, February 20, 2004 10:17 AM CST Good morning everyone, well we are on her third day here and everthing is going good. She is in no pain. The epideral they still have in is doing good. She got up and walked yesterday and sat in the chair twice for about 20 minutes each time. She is doing so good in my opinion. So many doctors and staff check in all the time it is hard to keep track of who is who. She got rid of the NG tube about an hour ago and is much more relaxed. She like the oxygen and still needs that until here breathing gets a bit stronger. She is using an aspirator to help her with that. She is funny, this morning when Mark came he stood and was making faces at the door so needless to say she pulled out the old loser sign for him. We know that miss fiesty is all there. The epideral and the cathater should come out tomorrow. Once they know the pain is manageable and once she is moving around enough. She has dates with the nurse at 11 and then every odd hour until 7 tonight so that should get her moving enough. Like I say, she is doing so much better then expected. What a tough kid. Mark and I could not be prouder of that girl. Emile is also doing good as long as she doesn't have to spend much time here. Her friends keep her busy. We are hoping that by the end of the day or for sure before we go home next week to have a game plan for what is next. I will keep you posted. Thanks everyone for the prayers and the support once again. Wednesday, February 18, 2004 12:14 AM CST Hey everyone, it is noon and we are already in a room on the 4th floor. Nikki is doing awesome! No ICU. The surgeon believes he has gotten everything. They sent a few pieces to the lab but all looks like the chemo did what it was suppose to and killed it all. The areas around the liver were no attached so it went so good. Better then we could have expected. She had an epideral to help with the pain because of the huge incision. She also has no staples just a lot of stitches. She has been talking to me a bit and moving the toes. She said she was happy. As are her parents. Tomorrow she should be up in a chair. Thanks all for the prayers. Now we can get her recovered and on the road to keep this from coming back. Saturday, February 14, 2004 7:47 AM CST Good morning everyone, well we had another CT on Tuesday. Things are stable so it is the right time for surgery. We go in on Wednesday at 6:30 am surgery at 8. Should be a long day. Surgery should take about 4 hours. She will be in ICU for at least a day or two then in the hospital for at least a week. I will stay with her the entire time with a trip here or there to home while Mark is there. He will be there much of the time but he will be at home in the evenings with Emile. She is doing good. She really doesn't think to much about what this is. I believe she understands but just doesn't think deep enough to have it faze her. That is good. We will keep her busy. She hates coming to the hospital. She is like her dad and needs to be busy so sitting for any period of time is a chore. Getting a bit nervous myself about this but I don't have any problem knowing this is a good thing and they will get the tumors. I just really hate the seeing Nikki after surgery weak again. When we discuss it, it is always, this will come and go fast and you will be right back on your feet again. She is doing good with it but we are not there yet. I will update Wednesday night once surgery is done. Wish us luck and keep the prayers going, we will be needing them this week. Take care all and hope you have a great Valentine's day. Friday, February 6, 2004 5:40 AM CST Hi Everyone, hope everyone is doing good. We are doing pretty good. Nikki is enjoying this time off she has. On Tuesday we go in for a CT. This will be the surgeon's last look before the surgery on the 18th. So really Nikki has nothing but some good time to enjoy until the surgery. We are trying to keep her working on strengthening until surgery. The stronger she is the better it will be for surgery. Mark is finally back to work so Nikki is running the house. She gets Emile off to school each morning and then I come home right after Nikki has school. This works well for all of us. Nikki will be enjoying her first sleepover in a long while to her friend Alexa's. She is very excited. She really likes hanging out with the girlfriends. It was fun when we went to the cabin 2 weeks ago with the girl scouts. It is nice for her to get lots in before surgery. It will slow her down again. Tonight we are going to a dinner put on by the oncology department at Children's. We are looking forward to meeting some more families. It is great to be able to talk to others that are going through similar circumstances. Thursday, January 29, 2004 5:35 AM CST Hello everyone, well we finally met with the surgeon on Tuesday. Everything was explained and we now have surgery set for the 18th of February. There are three areas that have to be removed. One is in the pelvic area, one is on the underside of the liver, (that does not look like it is adhereing to the liver, it is the larger area) the last is on the top of the liver and they cannot tell if that is connect to the liver or not. Either way it is on the outer edge. None of the area are of big concern for removing. The surgeon feels it should not be too bad. The problem for Nikki will be the huge incision down her middle to be able to get to all the areas. After the surgery there will be a week or so at the hospital and then about 4 weeks recovery at home. Then there is still the possiblity of the radiation (very probable) or even more chemo. She is only part way through this but she is doing awesome. She is tough and I know that she will get through the next steps just as well. Thursday, January 22, 2004 5:42 AM CST Good morning everyone. Well at this time we believe Nikkis is done with chemo and should be moving on to surgery. Tomorrow we will meet with the surgeon and oncologist and see where we head next and when. You could say we are a bit nervous about the whole thing. Nikki does not want us discussing this in front of her. She can deal with it but does not want to hear about it more then she has too. I can understand that. You don't have to drill it into her head. She is tough and getting stronger too. Now we have to try to curtail the feasting she does a bit. Getting stronger and putting on weight is good for surgery but going to the extreme is not good either so we try to watch that. She is on the GCSF to bring counts back up after the chemo last week. They have not gone down much but they were pretty high before the chemo so it may take a bit longer to get extremely low. We are going to a cabin with the Girl Scouts this weekend. We have about 12 girls ages 11 and 12. The cabin is fully heated and has a fully equiped kitchen and restrooms so they will not have to rough it to bad and so you don't thing we are completey nuts going camping in this cold and me with Nikki. It is not much different then a house with the exception of no bedrooms and TV. Mattresses on the floor for everyone. Thanks again for checking in and for all of you out there who are experiencing some of the same things we are, we send you our prayers and strength to get you through both the good and the bad. I know we are more aware then ever of the fact we are not going through this alone with Nikki, there are so many people dealing with cancer. Our prayers are with you all. Saturday, January 10, 2004 6:05 AM CST Good morning everyone, hey I want to thank everyone who continues to check in on the web site. I appologize when I don't get it updated frequently enough. I will tell you that I will make sure it is updated when anything changes. We finally got back results of the CT last night. We did know that things had appeared to get smaller but our oncologist himself did not see them yet so we waited until he verified everything. Things have gotten 1-2 cm smaller. This is the largest area of concern. That is amongst the liver area. It is about 1 /2 inches by 2. This was much larger before. She has a few areas that have some sort of mass but until they actually go into remove them, they will not know if all are cancerous. At our last CT in September, the surgeon's believed they could remove them all so the smaller they get the better it should be for all of us, especially Nik. They have determined that since they are in fact getting smaller they will do another round of chemo. So starting Monday she will do her 5 day outpatient. Then again we will wait till the counts recover from that and then in approximately 3 weeks again she will do the 2 day outpatient and then it would be more tests. So it looks like about end of February/beginning of March she will get the next CT and then probably surgery. That puts us right about the year mark. April 5th is when this all began, at least the road to recovery began. Nikki has continued to get stronger and we are looking at more intensive therapy to get even more strength going. She is happy to be doing more chemo. Weird for someone the want the chemo, but she has grown used to it so it is no big deal to her and she does not want the surgery part of it. No one likes surgery. She is a pretty tough kid and whatever she has to do, she does pretty well with. Tuesday, January 6, 2004 5:38 AM CST Happy New Year to everyone! Things have been going pretty well lately. We have no new news at this time on how things are going from the CT standpoint. Nikki however is doing good. With the cold weather we try to keep her in as much as possible. She gets stir crazy but better stir crazy then sick. She gets stronger everyday and now the therapists are suggesting weight training to help build up the muscles. Since we don't have a wonderful gym in the house we are going to try to get her out to one a few days a week. There are plenty of places around so that shouldn't be a problem. I have been thinking about the last 10 months and how things have changed. How Nikki has changed. It is pretty remarkable where we started last year and where things have progressed. We are just hoping that the next CT indicates what we see and that is Nikki is getting better. Keep the prayers coming because without them we wouldn't have made it through the last 10 momths. Thanks so much everyone and GOD BLESS. Monday, December 29, 2003 6:36 AM CST Good morning all, sorry it has been so long since I posted a journal entry. The holidays get so busy I forget. Nikki is doing very good. She isn't scheduled to have any more chemo. She will have tests the first week in January and then we will see how things have progressed and plan the next course of action. She is doing good both physically and mentally. She is moving all about and is eating very well and counts are going up. They will come out again on Wednesday and check again. She is done with the GCSF for this time. We have been discussing with her surgery and radiation as this could be next and though she doesn't want to talk about it very often she is understanding that it most likely will have to be done in order for her to move forward. She is pretty strong and for someone who has had open heart surgery and other procedures in her 12 years, she will handle things as she always does. We are looking forward to a GOOD year. Hope you all had a wonderful christmas and all are best for a VERY GOOD NEW YEAR!!!!!!!!!!!! Monday, December 22, 2003 11:20 AM CST Merry Christmas everyone, well chemo went well last week. Nikki did the outpatient and it went really good. She was so glad to be at home. It went a lot faster and did not seem to impact her any differently. We are home this week and looking forward to Christmas. Nikki's counts will be low so we won't do any big outings, just going to my parents on Christmas day for the day. Then being school is off until the 5th, Emile will be home and less likely to be exposed to all of the other kids. Next up for Nikki is the the CT in January. It will be the first week and then we will see how things have been going and where we are headed next. Nikki is aware that surgery is very likely to happen and could be soon and then radiation. Of course, nothing is set and we just have to wait and see. Until then we enjoy the holidays. All of you take care and we wish you a Very Merry Christmas and A Very Happy and Healthy New Year. Monday, December 15, 2003 5:43 AM CST Good morning everyone, well it has been a week and Nikki is starting chemo this morning. Took the counts yesterday and they were right where they needed to be. This will be a first for this chemo. Normally this chemo runs at 2 24 hour infusions. But, because of recent studies that have been done, they now can run it in 2 30 MINUTE infusions. We are excited because this means no more inpatient chemo. We also have an echo being done today and an EKG tomorrow. We cannot forget about her existing heart condition (Aortic Stenosis) Should be a good week. Nikki continues to get so much stronger every day. She is eating extremely well. We are very fortunate that she doesn't get sick with the chemo. Being chemo this week, I am expecting the counts to be low over Christmas so we will just have to be careful again. In 3 weeks time we will be running more tests (CTs) to see how things are going and determine our next course of action. It has been since mid September since our last scan and I am extremely anxious to see what is happening next. This year has been a tough one and I would really like to go into 2004 with a positive.
Monday, December 8, 2003 9:15 PM CST It's Monday and chemo did not start today. Counts (Platelets) are too low so we will again wait until next week. Nikki did have a good weekend. You can see she had friends over Friday night. A girls night was something she needed. She needs to keep in touch with friends. It was nice to have the girls giggling going on. Okay it can get a bit on the nerves but once in a while is not a bad thing. Emile hung out with them and I think by 10 they were all tired. Emile and Nik sure slept in on Saturday. Mark and I had to attend a funeral of a friend on Saturday. Barb passed away after battling cancer. We talked a few times about her cancer and Nikki's. To have that kind of strength is what we want for Nikki. She was a great person and we will miss seeing her around church. Tuesday, December 2, 2003 9:58 AM CST Hello everyone, good news we made it to Green Bay for Thanksgiving. We have a very nice time visiting Mark's family and the girls got to see quite a few of the cousins. The counts were low for Nikki but we came back on Friday and they still were not low enough for a transfusion. We had counts again yesterday and things are on the way up. This is very good news since now Emile has come down with the flu (even after the shot) and Mark is acky. We could be in trouble. I have told them to stay away from each other and as soon as Emile is better all bedding gets a good wash job and the whole room will be cleaned and lysoled. Same with our room. It sure is a good thing that Nikki is doing so well she can fend for herself. We will have to watch things close. We are scheduled to have chemo next week. Of course this depends on if the counts are high enough. They will check on Friday and I am sure again on Sunday. Then this is the last chemo before the next set of tests. We could possibly have that done before Christmas. Guess what our Christmas wish is, its a no brainer this year. You all take care and I will keep you posted. I guess our house is under a quarantine for now.
Monday, November 24, 2003 11:34 AM CST Well Nikki made it through another week of chemo. She did really well again. She walked in all but one day last week. She ate like crazy and is gaining weight. She is getting so much of her strength back. We pushed her a bit too hard on Friday. She walked into chemo and then wanted to make a stop at the Peter Pan Gift shop for gummies before we left. So if you know Children's layout. She went from the Garden view to Children's to the ramp at the Garden View. We got to the elevator and she just gave out. She basically calapsed in my arms at the elevator. Scared us both. I could not hold her up and her poor legs were like jello. We had plenty of people come to help and they got the wheel chair and we got her up and out without too much hassle after that. Learned our lesson, if she is going to do a bunch of walking we need the wheel chair. We also found out she has a kidney problem due to the chemo. They said it is Fanconi Kidney (I think that is spelled correctly) common with chemo. She has a leaky kidney. She needs to have phosphorus and magnesium, calcium and potassium levels monitored. (Others too I just can't remember them all) This should correct itself once chemo is over. Wednesday, November 19, 2003 5:54 AM CST Hello everyone, things are going good this week. Nikki is on chemo. (Outpatient this week) We have the 5 day chemo pretty much down pat now. Monday is the long day, in from 8:30 until about 4 is when she got home. Yesterday she was home about 1:30 and the rest of the week should be around noon. This is the first week that Nikki has been going in to clinic without the wheel chair. As her nurse Caron would say "Whoo Hoo". She is on the fluids constantly and hates it. She is having to use the bathroom every hour. Pretty tough when you have to wake up every hour. We have a comode in her room. She is being pretty good to mom and dad and not waking us up each time she gets up. Now are only concern is whether her counts will be good enough for us to make the trip to Green Bay for Thanksgiving. It is questionable and I don't want to take any chances. We have many, many neices and nephews back there and the girl really want to go but when the counts are low and infection could be bad. We will have to watch things closely and probably will not know for sure we can go until next Wednesday. Of course, that will come in to plan at Christmas time. Time will tell and we will have good holidays no matter where we are. Sunday, November 16, 2003 1:16 PM CST Hello everyon, We just found out Nikki is good for chemotherapy tomorrow. She will be doing the outpatient 5 day chemo. Days will be long but she will stay busy. The plan is for her to walk in and out of chemo this week. Leaving the wheel chair at home. She is doing much better with her walking so we will try our luck this week. I am very proud of how she is doing. She got her first pair of jeans since she lost all her weight. She thinks she is all it now. She does look pretty good now. She is at a good weight but she just needs to gain some muscle and she will be good. She is getting ready for christmas, the lists have started. Her and her sister have quite the lists. You can tell they are getting older because the items get bigger. The holidays are coming quick and hopefully we will get another CT before the end of the year and hopefully more good news. We will see. We will continue to take it a day at a time. Thanks for your continued support and prayers. Wednesday, November 12, 2003 5:48 AM CST Hey there everyone, been too long again. We are on an off week again with Nikki. She was too low on platelets again on Monday so we are on hold until next week and then in for another outpatient 5 day run. She gets so she kinda wants to go in for chemo. She just wants to get out of school. She still has school coming 4 days a week. Therapy still comes 2-3 times a week. She has been tired the last week and not done quite as much but she does try. I am seeing a change as far as attitude some days. Some of the daily routine in her life is finally starting to come back. She isn't getting around by herself yet but she is starting to ask us to help her get to the kitchen (she can do it by herself but is a bit shaky so she usually wants to get help). The other night I was on the phone and she strolled into the kitchen to get a snack. It made my night. I do know that if we pushed harder she may do more but I am not the one to push anymore. She has to WANT to get back to normal activities. I know she will it will just be in her own time. We have started to explain that she won't need therapy everyday if she does start to get around more. I think that may help motivate her. She doesn't hate therapy she just isn't fond of it either. All in all she and the rest of us are doing good. We wait for 2 more rounds of chemo and then the next CT. Hopefully before Christmas we will again know how things have been going inside of Nikki. Patience is not always a strong point with me but I am working on that. By the way, all of those who have been sending cards, notes and little gifts of cheer are doing just that. Nikki LOVES getting mail. We love seeing how far this has touched people. We CANNOT thank everyone enough (One because we don't know where everything is coming from). The world is filled with great people and we have been blessed to be touched by so many. God Bless all of you for being there for the Minnesota Schauts. Keep in touch. I will try to touch base with some of you.
Thursday, October 30, 2003 5:56 AM CST Hi there everyone, been a bit again since I have made a journal entry. Things are still going good. Seems that things have become routine with us. Not something you would like to have as part of your routine, but if that routine works, I will take it. Nikki is on her first of at least two weeks off. Her counts have come down quicker this time so we are back on the GCSF for I would guess about a week. The next treatment would be either the week of November 10th or 17th. She is also taking longer to get the counts up to a level that is okay for the chemotherapy. The next treatment will be the 5 day outpatient again. Nikki is doing good with everything else. She got a math test back with she got an A and is getting an A in math altogether. Math has ALWAYS been her weak point and so these are the first A's she has gotten. We are all happy about that. The rest of the schooling is going just as good. Sunday we had our first annual pumpkin carving. We have a bunch of families over and we carved pumpkins, had barbecues, smores, pumpkin treats and other goodies. We gave trophies for the best carvings. It was cool but we had hot apple cider keeping us warm. This was something Nikki wanted to do and it sounded really good to us. It was so much fun. The therapy is going okay. I think Nikki is getting a bit more ambious as far as walking around. She is finally getting herself into the bathroom to brush her teeth and stuff. I think that it won't be long and she will be much more independent. Tuesday, October 14, 2003 5:58 AM CDT It's been a bit since I have written in her journal. Sorry about that for those of you who are trying to keep up on her happenings. We were suppose to be on chemo this week but due to very low platelets, we are home another week. It is not so bad for Nikki, although it seems we get ourselves ready mentally and then we don't go. You just want to work through each treatment and each treatment to me is closer to the last treatment, which we have no clue when that will possibly be. We know we have to take things one step at a time but sometimes patience gets to be a very tough thing. Overall Nikki is doing good. We still have been getting out and about on drives and visiting family. Nikki is getting busier and busier with school and therapy. She misses her friends and is not sure about going back to school when the time comes. She doesn't want to feel different but she is missing the goings on. Friday night we had her girl scout troop meet at our house. It was fun but Nikki realized how much she is missing when the girls were all talking about who was seeing who. These are 6th graders and I guess its the time for seeing each other. They are growing up to fast for me. For those of you still checking in, meaning her friends from school, please call or stop in from time to time. Give us a call and we will let you know if its a good time. Friday, October 3, 2003 5:38 AM CDT Well we have almost made it through another week and already we are in October, just hitting the 6 month mark of her treatment. Nikki has been staying busy with school and therapy. Both go good. She has school about 4-5 days a week. She like it and feels she is learning more than she would in school. I think it is helping her tremendously. The therapists also work her hard. I came home from work yesterday and Nikki had made the family a great snack. (She went through one of many cookbooks and had Mark go purchase the ingredients) It was a red, white and blue desert. Strawberries/Raspberries on the bottom, then whipped cream and then blueberries, top with a bit of whipped cream and a cherry. She had to wash and cut the fruit. SHe goes in today to have a check up. We are doing the GCSF again and all is seeming to go good. Emile continues to enjoy school and soccer. So we are all good and into a routine now. Tuesday, September 23, 2003 4:27 PM CDT Hi everyone, Monday, September 15, 2003 8:32 PM CDT Hi everyone, Well the day finally came for the next CT. It started with a rocky start at home. Mark and I had planned to go together this morning but them Emile was not feeling well and got sick last night so one of us needed to be at home for her. She was fine and I suspect it was because of something she ate or because of the long walk we took wore her out. Anyway Nikki and I headed for the clinic and the dreaded CT and contrast that took 3 hours to handle last time. This time we were prepared and had our DR.PEPPER in hand. Mixed with the contrast she said she couldn't taste it and it was gone in a record 5 minutes. It helped she was in a great frame of mind and I think not having 2 parents breathing down your neck helped too. I know I know get to the results. Again the chemotherapy is working and the tumors are shrinking. One has shrunk another 3 centimeters. (It is about 7 right now) There are 3 areas they are watching with one they are not sure but they may just be sists. Anyway, since all is still working we will continue this for another 2 to 3 months. Nikki was happy that this means no surgery or radiation probably this year. She has gotten used to the chemo and can handle that. She told me today that she has even gotten used to not having hair, (I do admit I myself wouldn't mind seeing her with a head full of hair again). But, we got good news and I can now look at my calender and have a plan, though not set in stone, to follow for a while again. Friday, September 12, 2003 3:19 PM CDT Well it's Friday and only a few more days until the tests. I think I am more anxious then anyone else. Nikki is doing good. It is her birthday as you can see by the picture I added. She is happy and her counts are coming up. She had therapy yesterday and today and is doing good. She surprises herself on what she tries and can do. I think before long we will have her back to getting about more. I got to walk with her out the driveway and she seemed to really like it. She doesn't want to work to hard but she ends up still smiling. Birthday party and family here this weekend so we will be distracted until tomorrow. Keep the prayers strong this weekend. Hopefully Monday we will know how things are going (has to be good) and what way to go next. Monday, September 8, 2003 5:53 AM CDT Hello all, Well Nikki is starting her 2nd week off. She is doing well. Friday she went to clinic and she was at the point of her counts still being down. We are continuing the GSCF and they will check her counts again today. She should be starting her way back up. She really wants to get out more. We kept her in yesterday. Saturday she did go with to Emile's soccer game. She enjoyed that a whole bunch. I think she just likes the distraction and seeing everyone. Nikki will again have therapy twice this week and I hope that the school gets her started. We finally have the next tests scheduled for 8am on Monday the 15th. I will be extremely unfocused this week having to wait until next week to know how things have progressed. I know that she has many different treatments to have to undergo and I need to have a plan. At, this point there is no plan and we have to take them day to day. Not easy for a person who likes to have there plans set a year in advance. I can't even tell you where we could be at the end of the week. I am having to adjust to this. Mark can handle the schedule just like it is. He takes one day at a time.
Tuesday, September 2, 2003 5:39 AM CDT Good morning everyone, Saturday, August 23, 2003 5:12 AM CDT Hi all, It is Saturday and at this point chemotherapy is scheduled for Monday. Nikki had counts done yestday and all were okay for chemo for the exception of the platelets. They are on the way up and usually they will come up quickly once they start. They will come out again on Sunday to check the counts and make sure all is a go for Monday. If not, it will probably just get moved back a day or so. We hope it goes as planned. We will be inpatient in St. Paul again for the 48 hour infustion. Tuesday, August 19, 2003 3:00 PM CDT Hi everyone, well we are half way through our 2 weeks off of chemo due to start again next week. Time flies between treatments. As usual her counts have bottomed out over the last week. She kind of looks forward to chemo because she gains her appetite back. She told me the other day that she really does not dread but looks forward to chemo. (surprising huh). Therapy continues at least twice a week. Now as the counts are down she is weaker and we struggle to keep her on her feet. I know it will keep coming but I need to keep her focused. I will keep you informed. Thanks to all who keep her in their prayers, its working everybody. Keep your fingers crossed and prayers coming the next scan is about Sept. 15th.
Thursday, August 14, 2003 5:11 AM CDT Good Morning all, Tuesday, August 5, 2003 5:01 AM CDT Hey everyone, Just a quick note, today was another long day. Things just never get done as fast as I want but it is another day closer to done. We had a nice visit tonight as you can see by the front picture. I am still in aw by everyone. Take it from me never ever even think that the world is not full of wonderful people. I will write more later. Take care
Sunday, August 3, 2003 9:19 PM CDT Hi everyone, Sorry I have been slacking on filling you in on the happenings. Sometimes I get a bit behind on things. Nikki is doing good. We have the last week off of chemo and she had PT/OT some last week. She is still going slowly on getting on her feet. She can do more but seems to resist her parents. The therapists have more luck. We will keep working on that. Counts have been good so this weekend we went to Green Bay to see Mark's family. Nikki really wanted to go. The girls had a very good time and as usual we kept going most of the weekend. We brought home Hillary again to help this week since Nikki starts chemo again. It is 5 outpatient days. Hillary is staying until mid next week so the girls are already planning out evenings. Hillary and the girls are in need of school supplies and being it is August we may do some school shopping. Hillary came with money in hand for new clothes. I am not sure where Nikki will be in September for school but now is when we have to make some decisions and get her set for it. It will only get busier. We do have a more of a routine with the chemo but there is always something going on with blood counts, therapy or transfusions. Emile is doing good and as long as I keep them busy they are all good. I will update you later in the week on how chemo is going. Thanks so much for continuing to check in and for all the support. We cannot continue the way we do without all of you. God Bless and Take care Tuesday, July 29, 2003 4:55 AM CDT Hi everyone, Well we are on our 2nd week off of chemo which means next week is another round. We keep busy though. Last friday we had our first blood transfusion at home. (By the way, we do go through plenty of blood transfusions so please if you are a donor continue and if not seriously think about it. Each round of chemo she needs more) Anyway, it went good. Nikki was able to relax and we had a nice home care nurse that I got to learn a bit more about. They are wonderful people. Most of the weekend we kept Nikki in. I was not sure until yesterday where her counts would be. We need to make sure that she doesn't get exposed to anything. Her counts are back up except for her platelets so today we will have another transfusion of the platelets, at home too. I am beginning to get myself organized with all the things in our lives and know what to expect and when and what I should push for too. Nikki wants to head to Green Bay (Emile too) to visit the cousins and hopefully bring cousin Hillary back with us. The clinic thinks it is a good idea. For my piece of mind and the clinics, we will do counts again on Thursday to make sure she is fine and then again on Sunday when we get back to make sure that for chemo on Monday she is good. OT/PT comes twice a week now and that really wheres her out. She is continuing to walk with the walker and is getting stronger. She is nervous to try to do more but hopefully she will continue to push ahead. Thursday, July 24, 2003 5:37 AM CDT Hi everyone, We are now in the stage of the counts going down, so yesterday, Nikki and I ventured out to the clinic for a CBC and check. Her counts are going down as suspected so we have to be on the alert for the temps and low hemoglobin. Home care will come out today to do another CBC and type and cross for a possible blood transfusion tomorrow. We have done some more checking based on some information from a wonderful home care nurse and found out they do blood transfusions at home too. So of course I asked our clinic and they hadn't heard it yet but with some checking on there part, we now will get to do the blood transfusion at home tomorrow. The nurse stays for the 2-3 hours. It definitely pays to check into things.I have found that I need to be a bit more aggressive these days. Otherwise, Nikki and Emile are doing well. I am getting some time in this week at work with a bit of help from mom again. Nikki is getting stronger. Monday she had PT and worked out for about an hour. It definitely was a work out, sit ups included. She is starting to use the walker more and will walk all the way down the hall without me, just the walker. She really wants to start walking again, well except for the fact she doesn't want her dad to stop carrying her. His back is starting to get a bit sore. Sunday, July 20, 2003 9:19 PM CDT Wow what a day. The benefit was today and it was super! First I will tell you all the good news we got this week about the cancer. After the chemo we now know that again the tumors are shrinking. Things are going the right way with all the prayers and the treatment plan is going good. They will continue the same course of treatment as long as things continue to respond. They will evaluate again in September. So we have 20 days off and then another course and then 17 days off and more. We just keep watching her at home. Sunday, July 13, 2003 9:21 PM CDT Hey everyone! Things have been good. We had Mark's sister and brother in law here over the weekend and we had a very good visit. Mark's niece, Hillary, is going to hang out with Emile this week while we come and go to the hospital for chemo. They did labs today and it looks like we should be a go to start the chemo tomorrow. This is the 48 hour infusion so we will be there a couple nights. Nikki seems to be okay with that. She is looking forward to the benefit on Sunday and her counts should be okay for it. Everyone is putting so much into it. I am excited to see everyone. Tomorrow we will run another CT, xray and echo. It kinda makes me nervous because this will tell us where things are at and where we go from here. Nikki is really hoping that they will say the tumors are almost gone. We just know we have to take things one step at a time. Wednesday, July 9, 2003 6:29 PM CDT Hi all, I see I am slacking in getting some updates in here. I am not always getting them to work I see. Anyway, we have been home this week and all seems to have been going well. Nikki's counts have been low since the chemo and we have been doing the GCSF to bring them up along with some I.V. fluids to get some Potassium in her. We push the watermelon, bananas, mashed potatoes orange juice and a few other items to help that along. Today home care again drew labs and things are going up so we don't have to continue anything at home. They thought we would have to go in for a blood transfusion tomorrow and that is no longer the case since the hemoglobin is coming up. It is also good since Emile's birthday is tomorrow. We need to do some celebrating. Better sign off for now. Chemo starts on Monday and so do all the tests. We will be in the hospital at least Monday to Wednesday. Have a great weekend! Tuesday, July 8, 2003 5:17 AM CDT Good morning all, hope you had a great 4th. If you read some of the entries, you can see we were at the Parade in Wanamingo, MN and then to my sister Robyns for a picnic and a water balloon fight. My family have all commented that Nikki has NEVER been so excited and happy as she was at that picnic. Well I know I have seen her just as happy, but if you know my Nikki, she has always been more of a quiet girl. She sure smiles a bunch now and enjoys talking with all her aunts, uncles and counsins (as well as the grandparents). I am not sure of God's plans for my Nikki, but I love the fact so many people can see the spark in her that I have always seen. She is a trooper. I think she will always hate going to the clinic and the hospital so I am not sure that the doctors will ever get to see that but I count on everyone else to let them know too. As far as her treatment. Her counts are still on the low end so we are continuing the GCSF to bring them up and then her Potassium is low again. I will have to get her watermelon and bananas today and she will have to have an abundance the next couple of days. She finally had occupational therapy yesterday. She didn't seem to mind it, I really need to keep pushing getting up and moving. She did walk with help from Mark from her room to the living room yesterday too. She doesn't seem to realize that the soreness will go away if she continues to work those muscles. Well we have counts done again tomorrow and then we will be back in to the hospital next Monday for a series of tests to determine how things are progressing and start the next round of chemo. We are praying for more good news. Thursday, July 3, 2003 9:29 PM CDT Hello everyone, thanks mom for all the help this week. I was able to get to work and those at work were happy I was able to get some time in. Nikki and Emile and myself went to the clinic today for Nikki to get a blood transfusion. We were there 6 hours. It was a long time and for those of you who know Emile, this was tough. She had never been with and she made a lasting impression I think. She also helped them see that Nikki does open up. If nothing more than to argue with her sister. Dr. Moertel entertained us today with his card tricks. Multi-talented I tell you. (I think the girls think he is a bit strange) My dad and Dr. Moertel had met and get along great if that tells you anything. (If you know dad you can understand). We are planning on attending some fourth of July festivities, as much as Nikki can handle. Mark and I are very tired and are looking forward to getting some sleep this weekend. Nikki is getting better and is on the GSCF to bring back her white blood cells. She is doing so good with her walking. She walked about 20 feet today while holding on to our elbows. She set a goal of walking by Sunday by herself. She is gun ho right now. Her feet are always sore but I think she has kept them in the air (up on the end of the couch) so she doesn't have enough circulation going. I just hoping the positive attitude continues. Monday, June 30, 2003 5:56 PM CDT Hi again to all checking in. I am sorry I was slacking and actually forgot to update everyone on the happenings with Nikki. She has had some major progress going on. As I probably updated, last week was chemo and that went really well. We did outpatient so each day she would go in and get the chemo then we would go home early afternoon on the fluids and more meds. That was good with no sickness at all. She got very tired and we only did physical therapy till Wednesday. I felt she could not handle more on Thur and Fri. Over the weekend Marks folks came and visited. We had fun and the girls enjoyed themselves. Sunday was our new nephew (Kim's stepsons) graduation which we also attended. So we made some trips. Nikki is getting more and more ambitious so today she managed to walk (with my help) about 6 feet to the top of our stairs and then scooted down the steps to the front door so we could go bumming as we call it. Then when we got back she was walking to the couch and let go of me for a few steps. She was so excited and I think it is giving her the confidence she needs so we can do more and more each day. It was a huge day for me and I was so glad she is so happy. I think that sometimes I have to step back and let her come to decisions on her own and we make more progress that way and some days not. She had a CBC done this morning and will need a blood transfusion yet this week. I hope the counts don't get too low so we can't enjoy the 4th. No more chemo until the 14th and then we will get another update on how things are progressing. (CT,Echo, Xray all will be done) Then the 48 hours of chemo. Then potentially another 20 day break. Too far out to know for sure . Take care all and we are hoping that with chemo on the 14th she will be okay for the day of the benefit. Wednesday, June 25, 2003 7:22 PM CDT Hey all, well we have made it to the over half way mark of the chemo. She is doing well. We even did some PT in the pool today. I think it went well. She's not so sure. I think it is just a long week and as the days go on just having to do more then the chemo is a lot. We made it home by 12:30 today. It was nice. We were both very tired. Nikki slept on and off during the rest of the afternoon. Emile seems to be enjoying the hanging out with all the friends this week. Again thanks everyone! With 2 days left of the chemo I am hoping that Nikkis counts don't go down to quickly. Mark and I were just looking at the fact that all of June she has been home. I think she is handling things better and we are fortunate we can do so much to keep her home. I don't know if we can keep that in the cards after this chemo but we will sure give it a shot. Grandma and Grandpa Schaut are coming for a visit this weekend. (Hey Grandma and Grandpa Olson, are you free on Sat night?) Have to see if Nikki is in the mood to get out. Everyone take care and we will update again soon. Monday, June 23, 2003 9:56 PM CDT Hi everyone once again, Well day one of the five days of chemo is under our belt. She did very good. It was a long day starting with getting her there. Mark helped us get her into the truck and then I took her. We were there from 8am until, well we got home just about 6pm. Chemo itself is a 2 hour run but as we have found out, much more happens then the 2 hours of chemo. She did well and even did a craft and ate an entire cheeseburger. Now she is getting her appetite back and yes she is also eating some healthy foods too. She has pretty much cleaned out the fruit I brought over the weekend. She loves fruit and has her share of strawberries, kiwi, grapes and pineapple, oh and raspberries. Thanks too to all of our great friends who are helping with keeping Emile occupied during these days. She does not fair well at the hospital and seems to really enjoy being with all the friends. One downfall is that when the family is home here she is bored with us. I guess we don't keep her amused enough. Anyway, we have got PT going all week with Nikki while we are at the clinic and if all goes as planned we will get her in the pool on Thurs and Friday. Keep your fingers crossed and prayers going that the rest of the week will continue to go well for her. I am sure that is making a huge difference. Thanks so much and Take care everyone! Thursday, June 19, 2003 6:58 PM CDT Hi everyone, hope you all are doing good. We are still home and have no chemo scheduled till Monday. Her counts are still good but the platelets came down from harvesting stem cells so we need to give it till Monday. They will do complete blood counts on Friday and Sunday to make sure she is ready to go. The chemo has been set for 8:30-9 am each day next week. The chemo itself runs two hours. But we all know that is not all they will do so I am sure we will be there all morning. But they have agreed to let her go home in the evenings on the stipulation that if she gets so she is throwing up too much or has other problems and needs more meds we will stay. I am okay with that since they have us in St. Paul now so it is definitely not as bad from the driving standpoint. Nikki is getting stronger day by day and seems to be eating much more. Last night she ate a bunch of pizza rolls. I guess we find something she likes and stick with it. I am so happy she is getting back to having some more ambition. She wants to play with friends very much. The only problem is she can't get up to walk so it would not be much fun for some and then she is not always very sociable for very long. I do invite any of her friends to pop in some evenings just to say hi if you like. She usually goes to her room about 8pm since she gets pretty tired all day. Of course this means she wakes up in the we hours of the morning. I don't always care for that since now I don't have to get up to go to work most mornings. (I every once in a while will do the early shift if the previous day didn't wear us out) We will be home all weekend and invite you to stop and say hi. Have a great weekend and for those of you who just check in, drop us a message once in a while. Nikki loves to hear from everybody.
Wednesday, June 18, 2003 10:06 AM CDT Good morning everyone, We have had a busy few days. Monday and Tuesday we were in Minneapolis outpatient, harvesting stem cells. Things seem to go okay. They, I believe got what they wanted. We did have to do a blood transfusion yesterday before they harvested the stem cells. It made for long days, not getting out of there until about 4 yesterday. Nikki just hates being there and seems no matter how cool and collected she is before, she still gets up tight once we are there. We prepare her each time with long talks, but still she hates it. I hope that she will relax in time and see that the outpatient treatments are not as bad as she thinks. Today we had labs this morning done with home care and then an ECHO at St. Paul this afternoon. Nikki is already asking to go to Chuck E Cheeses this afternoon. Sometimes she blows me away. It is only 10 and she has already done some hard boiled eggs and a sandwich. Seems the appetite is slowly coming back. That really makes me happy. She has also had I.V. fluids at home the last 2 nights and that has really perked her up. She is even getting more thirsty. Chemo was suppose to start tomorrow but sounds like it may wait until Monday if the platelets are too low. We will see. I can update more later. Sunday, June 15, 2003 4:20 PM CDT Hi everyone once again. We have had a busy couple of days. We all went to the farm yesterday and Nikki and Emile had a good time. Emile brought a friend with. Nikki had so much fun she did not want to come home. We had my whole family end up showing up for a barbecue. Our friends Jack and Sandy LeClair also showed up. (This is how the New Jersey connection started for those of you who have read some of the emails. They are friends of Sandy's). Nikki's great grandpa was also there. Great-grandma is in the hospital so it was good for grandpa to get out a bit. Today we went to the zoo. Nikki only made it about an hour and a half. It was hot and she was tired. I was so happy to see her happy. As you can see I am figuring out how to make this thing work for me so I am now able to get some pictures on here. I will try to continue to add to the picture too. I will also try to get a link onto her pages too. Thanks so much for checking in and please stay in touch.
Wednesday, June 11, 2003 9:25 PM CDT Hi everyone, Thanks for checking in again on us. We are doing okay. Today was a tough day for Nikki. We had physical therapy come out. She was so nervous about it that at times she would work herself up to an upset stomach. She is so scared of hurting more. The therapist was extremely nice and I realized Nikki has more strength then I give her credit for. She did hurt a bit as she moved her arms and legs but the therapist believes that in a couple of weeks we can have her walking a bit. They will come out once a week and they have instructed us on getting her to stand every couple of hours to work the legs and have her work on stretching the arms frequently too. OT is also suppose to come out and they work on the upper body. I hope that as Nikki gets going she will be less reluctant. She did get up a few times with Mark tonight. She also threw up a bit more but that could be from moving about more or from the GCSF that she is getting to bring up the White Blood Cells. I will give them a call tomorrow if this continues. We do have medication at home that has worked in the past so she should not have to continue. I had a hard time today with the pain she was feeling and just the anxiety she had. She had a lot of tears and I guess so did I for her too. You could say this was one of the roller coaster days. Every once in a while we have this kind of day. I had better stop for now but I will up date you when we find out more about the stems cells and the next steps for us.
Monday, June 9, 2003 5:26 PM CDT Hi everyone, Well we made it through another weekend at home. Nikki seems to be doing good. She continues to try to eat. Breakfast seems to be the best time for eating. Eggs go okay and so does the bacon. Seems that at night it is harder for her to eat, no desire, and what she has had has not stayed well. Red sauces are a no no. Something she has always liked just does do her stomach any good. Overall she is maintaining a good attitude. Her counts have gone down as expected. We are going in tomorrow for a blood transfusion. That should help to give her a bit of energy. She gets tired easily but again that comes from the low hemoglobin. I am hopeful that we can keep her out for a while. The vancomyacin is done on Wednesday so not much left for that. We have faired good with that and I do believe Mark and I can handle the meds and things at home. PT and OT have called and I am only waiting for a call back from the therapist to get a time set up that works for all of us. I hope that it will start mid week. She has no strength in the legs. Well I shouldn't say none. She holds on around my neck and then puts some weight on her legs. I don't believe I could hold her otherwise. She is getting so tall in our opinion. I hope that she gets some more strength before the next round of chemo next week. I think so and if we are home in the evenings it should work okay. She laughed at me today. I was pulling one of my usual tasks. I felt it was time once again to rearrange my living room furniture. I usually have to do this on my own since Mark thinks I am nuts each time I do it. However, he always likes the outcome. Anyway, I was moving the loveseat with the help of some wonderful "moving men" that are extremely cheap. Nikki was there for the ride. She just layed there as I moved her all around the room. It did turn out well and I think Mark likes it. Well I will let you all know how things go tomorrow and where we are from day to day. (I have taken some family pictures, however Nikki didn't like them. It was the first pictures she had seen of herself and she was upset about not having hair and when she would get it back and she also did not like the dark circles under her eyes in some pictures. Mark and I both just think we have beautiful girls, hair or no hair. The eyes say it all, (and the smiles)) Thursday, June 5, 2003 6:03 PM CDT Hello everyone once again. Well the school year is over and Nikki made it to school for a short time yesterday. She managed an hour and then we had many tasks to do during our day with Mark and I both off. Since Emile was able to be at school, we went to school then ran a couple errands and headed for the clinic at 11. The appointment went well but we again did not get out of there until 1:30. Nikki was extremely tired and we were all hungry. (Nikki even emptied Marks pocket of saltines, this is quite a bit for her) We are skipping the next two doses of Vincristine. This is only a PUSH medication and would only entale going for clinic visits. However, Vincristine does a number on your strength so they will forego that until she is much stronger. Therefore, her next chem will be around the 19th of this month. Our goal from here to there is to get the strength back. We will keep her eating as much as we can and get therapy to the house to work on getting the muscles stronger and the joints. Of course, we will need to watch closely to make sure her blood counts do not get to low. They will to complete blood counts periodically, they will come to the house to draw that too. I have to say that the clinic and the doctors are working very hard to do as much as we can at home since it is so much better for Nikki. They have told us the next 5 day chemo will be done as outpatient. We will go to the clinic for the chemo and then go home on the fluids. We have been given a bit more information and continue to get more each time. Nikki just needs to stay strong and we can get through this. Now that school is done. I will get to spend more time with both the girls. Emile will be good for Nikki to have around too.
Tuesday, June 3, 2003 6:09 PM CDT Hi everyone, Well we have been home a couple of days and Nikki seems to have done well during this last chemo treatment. She has not really gotten sick. She is extremely tired most of the time but is managing to get a few bites to eat. She is trying things she used to like but is not finding things as good as they use to be. I have gotten to work yesterday and today and plan to make it each day. Either my mom or Mark are their with her if I am not. Tomorrow we will go to school since it is the last day and get her yearbook signed. We are getting a stamper for her to use since she probably will not be able to sign all of them herself. Then we will go into the clinic just to make sure her blood counts are doing good. They are again going to skip the dose of chemo called Vincristine since this really affects the strength in the joints and since she has none they will hold off. I have finally gotten somewhere with the Physical and Occupational Therapy where they will come to the house for her. This took a few calls but we have a great nurse Caron who has been very helpful with everything. Probably will start next week. Caron is also trying to make it so that many of the things will be done at home so even the blood draws can be done at home. We will make some trips to the office as needed but this way until Nikki gets her strength back we will not have to make sure 2 of us are home to get her there. Mark and I are very fortunate to have gotten hooked up with a good clinic with a great nurse and rest of the staff to help. Mark is great with the meds at home too. Nikki just sits back and watches us mess around with her different lines she has. We do okay. I think that is about it for the happenings today. All in all we are fairing pretty well with the help and support of good friends and family. I am not sure how people do this without it. Thanks everyone and God Bless you all. Sunday, June 1, 2003 8:12 PM CDT Yeh, we are home again. This round of chemo went really well. Nikki hates being in the hospital but as far as the treatment itself, it was good. She didn't get sick at all and she didn't have any pain. She was just in a hurry to get home, as was I. We got home about noon and had some nice visits. Our old neighbors from accross the street were in town and stopped to say hi. Sue and Pat Pierce and their three kids. Their daughters are about Nikki's age. Then Grandma and Grandpa Olson showed up. Nikki also tried to eat a bit. Spagetti O's for supper and root beer. At this point we try whatever works to get her to eat. Sister Kim had Emile over night last night so her, Dan, Zac, and Ally brought Em home. It was a good day. Nikki's counts are good right now so they do not plan to have us in to clinic for a week. Chemo will make the blood counts go down so we just have to stay on our toes. If we can keep her eating and drinking it will help. We are working on getting physical and occupational therapy out this week to work on her strength. We need to get her back on her feet. She is working very hard and we know it will all come in time. This week is the last week of school and Mark and I are planning to take her on the last day, Wednesday to get her yearbook signed. Hope we can see all her class and school mates then. Take care everyone and we will keep you posted. Saturday, May 31, 2003 8:32 AM CDT Hello everyone, just a quick update on Nikki. Nikki's surgery to remove the main pick line and replace it with a new type of port went well, she's a little sore in her neck, which is where the line is placed. Her 2 day session of Chemotherapy is going well, Nikki should be done recieving it tonight, in which if all continues as planned she will be coming home on Sunday morning. Thanks to everyone for your thoughts and prayers we are grateful to have such great people supporting us, the Schauts. Tuesday, May 27, 2003 9:09 PM CDT Hello everyone, well each day is a learning experience we are finding. We found out today that they have out off her chemo until Thursday. Since this is the case I felt she needed more fluids in addition to the additional meds we were running out of. Home care came out and gave us some I.V. fluids to give and drew some labs. Mark and I thought she was dehydrated but she was also low on hemoglobin. That I missed. We were told the counts would all be coming up and they were when we left so I missed that. We will go into clinic in the morning to get some blood for her. She then will be home and go into clinic again on Thursday at 11:30 then to Mpls for the surgery to put in the new line. She will then start the next round of chemo. This chemo is a 48 hour infusion so hopefully we will be home in a short time.
Monday, May 26, 2003 5:19 PM CDT Hi everyone. Well we made it to a movie. We didn't make it all the way through though, Nikki just got too tired. She came home and is napping now. She is doing better with the fluids today and even ate a bit of yogurt. It is a step in the right direction. She is getting stronger by the day and I hope that she will soon be getting up some more on her own. Tomorrow I think we will just be hanging out until Mark gets home from work. We have 2 way radios so if I do go outside for anything I am a button push away. (I really need to accomplish some more yard work. Everyone take care and I will update tomorrow. Sunday, May 25, 2003 9:03 PM CDT Hieveryone, just another day in Nikkis life. We have been home since Friday afternoon and have had company from the Schaut side of the family. Grandma, Grandpa, Sandy, Jenny, Mitch and Jamie came to visit. They left today about 11 am so the rest of the day was pretty quiet. We grilled out last night and that was a treat. No Hospital food. We are planning on going to a movie tomorrow if Nikki is up to it. She is doing good however still weak and it is not easy getting her to keep the fluids going. Something so simple for most of us is not easy for her. I am not sure of exactly why, but I am not sure even she knows why. I have accomplished a lot I have wanted to in the couple of days. I plan to try to get to work on Tuesday before we get back to treatment on Wednesday. We continue to do the antibiotic at home and home care has come out to draw labs tonight. We will hear in the morning how she is doing. I get nervous each and every time she has anything done and each time I take her temperature. I really would like for all of us to be able to truely relax for a while. I hope everyone is doing good and I will let you all know what tomorrow brings. Please keep your fingers crossed and the prayers coming. I REALLY want to keep her home as much as possible and so would Mark and Emile. Friday, May 23, 2003 10:34 PM CDT Hello to all our friends and family and all of those who have been so caring that we have not had the pleasure of meeting in person. The last two weeks have been very crazy and had many ups and downs. Today I am happy to say is probably one of the best days in a very long time. Nikki is home tonight and at this moment is on her third movie with no signs of wanting to sleep. I, on the other hand, am ready to dive into my bed (quite a few days since I have experienced that). She has had very good news in the last 2 days. A brief run down since Saturday night when we had the neurological scare. They have done MRI's, CT's, a spinal tap and an EEG. Boy am I learning a lot. She has seen a Infectious Disease Doctor, Intensivists, Cardiologists, many residents, many oncologists and neurologists. I don't think I can remember all the names but the faces I will remember and I can say Childrens has wonderful staff of doctors and nurses. Thankfully with all these tests they have not found anything bad, (not more than the infection to the port sight). We have also found out that her cancer is shrinking and considerably is the term the oncologists used. We are home now until Wednesday next week when she will go in for her next chemo. This will be a 48 hour infusion and the will put in a new temporary line (a sort of Hickman to harvest stem cells). This will last for 2-3 months I believe. Hopefully all will go well enough so she will only be in during the week. She looks good and is working hard with physical therapy and occupational therapy to regain her strength. She continues to get stronger each day. Since I am home I will be able to update more each day. I realize this is lenghty but I want to get as much information out. I would like to thank everyone for all the prayers, they really seem to be helping. I would like to ask you to also pray for a few kids whose families we met through Nikki's hospitalization. I only know first names but they are all childrens patients. Sunday, May 18, 2003 9:34 PM CDT Sorry we haven't updated the web page in a few days. We have been pretty busy, Nikki has been in St.Paul Childern's Hospital PICU. She has some inflamation in the brain, causing some neurological problems. Seems to be better today, with all the medications. We should be in PICU a few days, until her blood counts recover and things are more under control. They did many tests, and one thing they do know, is she has pneumonia. Please continue to pray and we will keep you updated, love the Schaut's. Tuesday, May 13, 2003 5:00 PM CDT Hello everyone, sorry this has taken me so long to update. We had another long weekend. Since we left the hospital on Wednesday last week we had done some home care. We managed the I.V.s and some meds. They removed the I.V. and needle to the port on Friday. On Saturday evening she started a low grade temp (I am learning new terminalogy each day) On Mothers day the temp continued but we had been able to control with the tylenol. They still wanted her to come in to make sure the port was not infected. Upon getting there it was determined it was infected. Now being Tuesday they have done numerous chest xrays, Echos, Ultra sounds and other tests to determine the next course of action. They have also been putting lots of fluids in her and a blood transfusion also due to the affects of the chemo. Her counts a low as a result of everything. They are also giving the GCSF. I won't explain all the terminalogy. They have basically decided to remove the existing port and put in another temporary line and give antibiotics for 4-6 weeks. How everything else will pan out, I am not sure. You ask, how is Nikki doing? She is handling things okay. She has talked to different people. She does not seem to mind the hospital itself just all the medications as usual. She is in a lot of pain by the port itself so I am anxious to have it removed and the infection gone. Not sure how long we will be there. We can only go day by day. We are trying to manage home and work and hospital. Mark gets most of his time at work and Emile at home. Good friends have really helped that aspect and we can't do it without all the family and friends. Thursday, May 8, 2003 8:25 PM CDT Thanks everyone for the emails. For those of you have been reading the emails, people have offered to sent Nikki hats. Well thanks for the smile today that I got when Nikki opened the box from New Jersey. We loved the hats and especially the New York Princess. I keep telling her she is a beautiful princess. Mark and I are very fortunate to have two beautiful young ladies. She has had a pretty good day although the throwing up still has not subsided do we will probably be back to the clinic tomorrow. She tries so hard but cannot completely get it to go away and of course the medications do not help the problem. We will keep pushing forward and look forward to better days ahead. Thanks everyone and keep the emails coming. I will see if she feels like returning some in the near future. Wednesday, May 7, 2003 7:47 PM CDT Hello everyone, I know it has been a few days but since we went in on Friday I have been there and really have not had access to update her page. She is home today again with a little proding from me I guess. They are not sure about reading her as of yet and are relying on me to help them understand her and sometimes I am as unsure as they are. Todays issue was the throwing up. Since chem end in the early morning hours yesterday she still has been throwing up. They have tried pretty much all meds they can. I again believed the setting was hindering her rather than helping her so we convinced them to let us go, (the oncologist actually agreed with me and Nikki on this one). We are home with home care. In other words we are being taught to hook up I.V. and administer her I.V. meds. I think we will do fine and Nikki does seem to be better. We have a lot to learn and I believe as a family unit we can handle this. Emile is doing okay but has her nights when Nikki and I are away that are tough. Mark is trying to hold up the home front. I am trying to balance my need to be with Nikki as much as possible and still get in some work too. Home care will be coming the next couple of days to make sure we are handling it all okay and they along with the doctors will determine how long to keep fluids going at home. If she does not continue a major amount of throwing up then we probably will only have to go a few days. She has no more chemo for 17 days as long as her blood counts stay good. We will check those weekly at the clinic. This is now the first complete round of chemo and when we go in 17 days it will start again. They will do some more tests at that time to determine how things are progressing. Keep the prayers going and I am sure we will get some sort of answers at that time. We love you all and thank you for all your support. Check back and I will be able to keep you posted as long as we are home. Sunday, May 4, 2003 7:13 PM CDT Nikki started her next 5 day chemo treatment on Firday, after 4 hours at the St. Paul clinic, we went to Minneapolis Children's Hospital. Chemo is harder on her this time, she started alot of throwing up and alot of fluid was being given to her, needless to say she has been using the restroom constantly. They have given her meds to calm down the nausea, which also makes her sleepy. She is not happy about this treatment, but the last dose will be on Tuesday. Then she'll be off chemo for 17 days, if all goes well. Thank you, for all your thoughts and prayers. Nikki likes all the emails, keep them coming, God bless, love the Schaut's. Thursday, May 1, 2003 4:09 AM CDT Good morning everyone, It's Thursday and tomorrow we go back in for a five day treatment. I have liked being at home and I think Nikki has felt the same way. She wants to visit school today and I will see how she is doing. She gets tired and yesterday she complained of her stomach hurting. She did throw up a little yesterday but she kept some food down too. I hope the next five days go fast so we can get her back at home. She was upset about the young 12 year old boy who was killed in a motorcycle accident near us. He was a member of our church and a good friend of a friend. Our thoughts and prayers are with him and his family. The funeral is today so I know it will be a hard day for our community. Pastor Kiri is planning on visiting the house this morning with mom (Grandma) and Nikki. It is good to have Grandma come up. I am able to get some hours in and she gets to spend some good time with Nikki. Thanks always for the family and friends. Thanks all and we will talk to you all later. Take Care!!! Wednesday, April 30, 2003 4:02 AM CDT Good morning everyone, It is only a couple of days until her next treatment and she seems to be doing well. The medications are no longer an issue. She may not like them but she doesn't get upset any more. We finished making a beautiful hat box for all the wonderful cards she has gotten. It is a great keepsake for her. Many of you have asked about hats from around the country and I think that is a great idea. Nikki likes the idea, she said she may not wear them all (she doesn't like things on her head at home but only when she goes out, She is not to vain about that)but she would definitely think it is pretty neat to have them from all over. The appetite seems to be back although some things go down okay but may cause her to get nausea later. She is such a strong girl. She has been doing some talking to me about things and voices concerns for others. Especially her dad. She needs more time with him so we try to work that in the evenings. She doesn't want him mad at the world either. She has plenty going on and still she thinks of others. I couldn't be more proud of her and Emile. Keep the emails coming and thanks for all the support. We are a blessed family to have so many who care. Tuesday, April 29, 2003 3:51 AM CDT Hi everyone, Things are still pretty good with Nikki. Yesterday she had her upper mouth piece removed. This was for preparation for braces which we are putting on hold for now. She is still unsure of if it is better or not. My opinion is it is better just for the sake of one less place for germs to build up. Nikkis has gotten so many wonderful cards that we needed to figure out a good place to keep these. I bought a huge hat box that we have started to decoupage. It is a good project and the box is starting to look great. Nikki and I worked on it last yesterday. I still have sticky stuff coming off my hands and arms for some reason. We have a few days before we have to go back into the hospital for treatment so we are having some good talks. She has a lot to say and I really enjoy being able to just talk. I am not sure if I should mention some of the things she has said to me, but I just want some of you to realize how she is feeling about Cancer and the fear she has for those who are at the most risk. Just food for thought, lots of thought. Have a good day I know we will. Monday, April 28, 2003 4:02 AM CDT Hi everyone, Being Nikki is now at home we are trying to have a little fun. Yestday we went to a movie, "Holes" it was pretty good. She made it through the movie but was very tired and needed to rest when she got home. She is trying to eat but still cannot manage to get too much into her. She still has some throat issues which make it hard. We go today to remove the apparatus from her mouth that she has for awhile now to secure the upper part of her mouth. I believe that will help at least to make her mouth easier to keep feeling let disgusting from everything. I am trying to get into work here and there so the vacation will not run out. Thanks again everyone for everything. Hopefully Nikki can have a good week before she goes in on Friday for another 5 days of treatment. Take Care everyone! Saturday, April 26, 2003 9:07 AM CDT Hey everyone, Yesterday was a GREAT day for Nikki. Her Grandma came and stayed with her in the morning while I was at work. When I got home we had a little lunch. She tried some soup and a sandwich. She could only eat a little. After word Nikki decided to go to school to visit. We were there for about an hour talking to her class and her friends. They had a lot of questions and Nikki was happy then I have seen her in months. So many smiles on her face. I was so relieved to see Nikki back to Nikki. I believe this helped her and her class to understand things a little bit better. After we visited school Nikki decided she needed a few new hats, so off to Target we went. She has a few to choose from now. Once we got home she was really tired. She took a little nap and then enjoyed some supper. Her choice since we were so happy to have her finally eating. She still can't do much, but she is going what she can and at least the appetite is coming back. I want to Thank everyone for being here for Nikki and our family. I can't keep up all the time with the Thank Yous so please no that we THANK EVERYONE over and over again for everything. It is a great comfort to know that so many care and are there for us. We love you all.
Friday, April 25, 2003 6:20 AM CDT Hi everyone, Nikki is home!! We got home last night. We had a tough day trying to get home, but we made it. She had to overcome a major step yesterday with the hair loss. It started to come out very aggressively and she decided to have it all shaved off. Our very good friend and very pregnant Lisa came over to the house last night and gave us three haircuts. Nikki was done first followed by Mark who basically shaved his too. Emile then had a trim too. I tell you it is so wonderful to see Nikki's eyes once more and just to see that beautiful face that was hidden behind all the hair. What a tough young lady. I couldn't be more proud. We are so lucky to have that girl in our lives. I will keep you posted and thanks for keeping in touch everyone. Thanks more than words can say Lisa! Also thanks to the friends who have made meals for us. Mary Jo and Tom it was great to have a good homecooked home coming meal. We have such great friends!!!! Wednesday, April 23, 2003 4:28 PM CDT Hi everyone, Nikki is doing better. Her counts are up and if she is able to do her meds she can go home tomorrow. Keep your fingers crossed! She looks better although this is the hardest thing for her to do. I will update more later. Thanks for all the prayers. Tuesday, April 22, 2003 6:57 PM CDT Nikki and the rest of us are down in the family resource center to update her page. She is still a bit uncomfortable in her throat and stomach but she looks much better. I went to work for a few hours today and she did pretty good. Grandpa came up yesterday and spent the afternoon with us. We all enjoyed that. Grandma gave me a ride home today since she was in the building next door. We are hoping we can be home in a day or so as her counts come up. Check back and we will keep you posted. Thanks everyone.
Friday, April 18, 2003 9:43 AM CDT Hi everyone, Nikki went for her first outpatient treatment of chemo yesterday. It went okay, her blood counts were down and they are concerned about the hemoglobin so they have told us to do some vitamins and to bring her in on Monday to have that checked again. If it is lower they will do a blood transfusion then. She did try to eat a little bit this morning so I think maybe the appetite is starting to come back. This should also help her get some more strength. The nausea has started to subside a bit. The oncologist did think he was hearing better breath sounds when she was in yesterday. The next dose of chemo will be a week from today. They are starting to getting bits and pieces from the pathologist in St. Louis but at this time they are still not saying for sure what specifically this is. We will keep you posted. Thanks to everyone for the cards, gifts, food and everything you all are doing for us, especially the thoughts and prayers. We can not tell you how much that is helping. Check back later and I will keep you all informed on how she is doing. Tuesday, April 15, 2003 9:20 PM CDT Hi everyone, Nikki is home and has been home since Monday, 4/14 pm. She is adjusting okay. She is still not eating but she is getting the thirst back. She even asked for a 22 oz. soda this morning. (I was happy to ablidge). She never completely finished it but kept refreshing it as the day went on. Though she didn't want to eat she did nibble on a cracker. Glad to be home.
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