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Tuesday, June 21, 2005 9:52 AM CDT

Hello All,

Please hold the Mathis family in your prayers. Sweet Haleygirl earned her angel wings this morning. They are such a strong and couragous family and they have all fought so hard. Goodnight Sweet Angel, Fly Free!!!!!

Things are going okay around here. Slowly but surely Nikki is coming around. Yesterday the doc said she still has some very significant swelling in her airway and her speech has become hypernasel again. We are hoping for it to clear up once the swelling is gone. Looks like another week or two out of daycare.

We rescheduled the nasal reconstructive surgery to August 22. Hopefully she will be well healed before school starts.
Thanks for all the wonderful birthday wished for Miss Nikki, She really loved looking at them all. She had such a wonderful day!!

Nothing much else to report around here. Brandon has a birthday in a few weeks. Other than that we are just hanging out and trying to enjoy the wonderful weather when we get it!!

Please keep all of our Angels, Fighters and Survivors in your prayers. The strength that comes from those prayers is so amazing!!

Take Care all and Until next time......

Love and Hugs,
Heather

Tuesday, June 21, 2005 9:52 AM CDT

Hello All,

Please hold the Mathis family in your prayers. Sweet Haleygirl earned her angel wings this morning. They are such a strong and couragous family and they have all fought so hard. Goodnight Sweet Angel, Fly Free!!!!!

Things are going okay around here. Slowly but surely Nikki is coming around. Yesterday the doc said she still has some very significant swelling in her airway and her speech has become hypernasel again. We are hoping for it to clear up once the swelling is gone. Looks like another week or two out of daycare.

We rescheduled the nasal reconstructive surgery to August 22. Hopefully she will be well healed before school starts.
Thanks for all the wonderful birthday wished for Miss Nikki, She really loved looking at them all. She had such a wonderful day!!

Nothing much else to report around here. Brandon has a birthday in a few weeks. Other than that we are just hanging out and trying to enjoy the wonderful weather when we get it!!

Please keep all of our Angels, Fighters and Survivors in your prayers. The strength that comes from those prayers is so amazing!!

Take Care all and Until next time......

Love and Hugs,
Heather

Monday, June 6, 2005 11:26 AM CDT

Hey All,

Just another short update to let you know the scoop.

Not sure where I left off, but after extubating on Sunday it was not successful. She lasted a couple of hours and had to be re intubated.

They had taken a culture of her tube secretions on the 28th. What grew out of them was the same bacteria that causes ear infections and sinus infections. So on Tuesday she was diagnosed with pneumonia. They started antibiotics at 3 that afternoon. She then began a slow but sure turn for the better.

So finally after being intubated from Friday May 27th to Thursday June 2nd, they pulled the tube at 2:30 in the afternoon. And guess what?? It worked. She was finally off the vent. We were kept in Peds ICU Thursday night and Friday. Saturday they gave us the boot and we went to the floor. She just kept getting better and better. So yesterday thankfully they let us come home.

She is very weak and still has lots of junk in her lungs, but she is holding her own. Baby steps, Baby steps. I have to keep telling myself and her that she was down for seven days, it will take at least that long for her to get somewhat back to normal again. The only problem we are seing now is that from lack of use the muscles in her feet are very stiff. Probably doesn't help that she had the nerve damage from the vincristine less than a year ago. So we are working on it at home along with lung percussions.

This whole experience has made me begin to rethink my career choice. I have been thinking about going back to school for nursing. HHHHMMMMMMM We will have to see if it will work.

Thanks for all the prayers and for checking in on us. I will update soon with Nikkis progress as she gets better. Hopefully she will be feeling up to her birthday party this weekend. She turns the big '05 on Sunday. At least we are home now.

Say lots of prayers for all the kiddos out there fighting the battle that has been thrown in their path.

Love and Hugs,
Heather

Tuesday, May 31, 2005 11:59 AM CDT

Hello All,

Just another quick update to let you know where things stand so far.

Not sure where I left off last, but here is the latest...
Nikki is still on the vent. They tried on Saturday afternoon to extubate. She lasted a whopping 2 or 2 1/2 hours. She than began to fail again so they put her back on the vent. She is having some trouble with the lungs collapsing. (They use a big fancy "A" word for that) So she is very heavily sedated and we are trying to leave her alone as much as possible so she doesn't get over stimulated. What fun this has been! (Dontcha just love the sarcasm here?)

So the plan is to keep her on the vent today and through the night. Then they will take another look at the films of her lungs and go from there. We are hoping to be able to extubate again tomorrow. If she crashes again they will re intubate and take her into the OR and do a bronchial scope to see what is obstructing in her airway.

She is looking much better and they are keeping her comfortable. The postive on this whole deal is that at least she is not really aware and not feeling much of the pain that comes along with the T&A. Gotta look for the bright side I guess!

The rest of us are hangin in there the best we can and taking one day at a time. That is all you can really do.

Thanks for checking in on us. Please say a prayer for all our special kiddos out there battling, just beginning, or what ever situation they may be in.

Take care all and I will update again as soon as I know more.

Love and Hugs,
Heather

Sunday, May 29, 2005 9:57 AM CDT

Hello All,

Just a quick update for everyone...

We are still up at Childrens St. Paul. Nikki had her tonsils and adnoids out on Friday. All went well with surgery. We are still here because things were not so smooth afterwards.

She just had a very hard time waking up from anesthesia. They decided to monitor her in Peds ICU. She is still there. She had some pretty rough spots and her throat was very obstructed. They did some monitoring and put her on oxygen Friday afternoon. Her breathing was very labored and she was having a very difficult time. So around 7 Friday night they ended up tubing her and putting her on a ventilator. This is where we still are right now. She just got so tired she couldn't do it on her own anymore.

As of 9 this morning they have turned down the vent so she is working more on her own and they turned off the fentonal. She is still on atavan, but hopefully sometime today she will be doing well enough that they can take the vent out completely.

I am doing okay. Still in shock that a short easy procedure could lead to a 4-5 day icu stay, but just taking it all one day at a time. What else can you do?

I will update again when I know more of what is going on. Thanks for all your prayers and for thinking of us.

Take care All!

Love and Hugs,
Heather

Friday, May 20, 2005 11:52 PM CDT

Hello All,

Yep finally a new update. Things have been so crazy here, my head is still spinning trying to keep up with it all.

First of all I will give you the good news. 9 month post treatment scans were today. ALL CLEAR!!!! Everything looked great. She did wonderful once again with the ultrasound and the chest xray. We (meaning me, the horrible mom) flew out of the house today in such a rush we forgot to put the emla on her arms for blood draws. So we decided to give it a try without. She did fantastic. A little whimpering and an ouch and it was all done. What a brave little lady!!! It still amazes me how wonderful and brave these kiddos are!

So on to all the fun stuff.....
As most of you know Nikki was born with a birth defect called a cleft lip and palate (see last photos in album). Most things have been put on hold for the last year due to her diagnosis. Well, about two weeks ago I took her to see her plastic surgeon. He wanted to do some more work on her nose and lip before kindergarten, which is in September. Holy Cow!! Anyways, I brought up her breathing and snoring issues and he ordered a sleep study. That took place last week, and she once again did a SUPER job. So the next day we got her all set for a surgery on July 6th. She is scheduled for 5-6 hours and a 2 night stay. They will be repairing a hole in the roof of her mouth and doing a rib graft to her nose to make it look more "normal". Okay, no problem right?! Well of course not, that would make my life to easy.

So a few days later we get the results of the sleep study. She has severe obstructive apnea and is being disturbed up to 103 times per hour. Whew, I can't understand how that kid doesn't fall asleep in her lunch! So her surgeon calls and is all paranoid about breating problems after anesthesia. So I take her in to her ent on his suggestion and to make a long story short......She will be going in to have both her tonsils and adnoids removed on Friday May 27th. Overnight stay, and 1 hour procedure. They have to go through the nose due to the cleft problems. Wow, doesn't that sound like a good time? This poor kid, I tell ya' if it isn't one thing it's another. Needless to say, I have been a complete wreck for the last week!!!!!! Oh well, we will get through it as it comes!

Birthday season is fast approaching. I just had my 30th on the 18th. Yahoo! I still don't feel it. Tyler will be 2 on Sunday and we are having his party tomorrow. Nikki will be turning 5 on June 12th and Brandon will be 7 on July 23rd. It will be a very busy few months around here.

Everyone is doing very well and just taking one day at a time. Thanks for checking up on us. We hope this finds all of you doing well. Keep those prayers going for all of our little buddies out there fighting, just beginning, or in remission. We think of you each and everyday!

Will update next week to let you all know how surgery went. Until then take care,

Love and Hugs,
Heather

Wednesday, March 9, 2005 4:05 PM CST

UPDATE SUNDAY MARCH 13th 2004:

*****Another Angel had earned her wings. Please Stop by and offer comfort for Kimberly and Family as Emerald earned her wings yesterday. Fly free sweet Angel, we will miss you so!!! *****


Hello All!

Hope all is well with each of you. First off, PLEASE keep Haley in your prayers. Stop by and say a prayer for Emerald. News was not all that was hoped for. Pray for Angela as Baby Jacob has earned his wings. So sad, it just breaks my heart. Pray for all of these kids. They are the strength and inspiration and driving force behind these amazing parents.

Now, this could take a while. Grab a beverage, maybe some popcorn and read on. There is so much, gosh I don't even know where to begin.....

I am going to start with the hardest. March 9, 2004...One year ago today our sun went out and our world was turned upside down. This time last year we were sitting in a hospital room totally devestated upon hearing the word CANCER. I think any parent reacts the same way. Oh my Lord, what are we going to do? My baby is going to die. We are one of the lucky ones. So far remission is holding strong. Some are not this lucky. CANCER SUCKS! There is no other words. I am still angry. Not for myself, but for every child who endures this beast. I have seen many strong loving little ones become angels this past year. And I wilt a little more inside each time. My heart weeps for each of the families. But at the same time I am thankful that my baby remains in remission and I feel guilty too, that we are one of the lucky ones. Wilms is "the best" cancer to have if you are going to get childhood cancer. Who the hell thought of this? How is this comforting? Obviously these people have no clue. Cancer is cancer NO MATTER WHAT! If it is so good why do we see new angels and more relapses? I have added to this problem. How you ask? By letting life slide along and with it the time between updates. I am sorry. For those of you who still check in, I want you to know there ARE good stories out here also. And God has blessed us by making us one of them. Our journey is not over by far, not even close. But the beast is dormant for now. All we can do is pray and worry and wait. The waiting is the hardest. Our days are "normal" again. The hair and the strength have come back. The clinic visits are months apart now instead of days. Nikki is her old self once again. As she grows up, she will become more aware. For now she is blissfully ignorant of what diagnosis entails for the rest of her life. Us as parents get the rest. The worry, every sniffle, cough, pain "here" or "there". Sometimes it feels like it will never end. Then I realize that it won't. But we made it through the treatment and I have faith that we will make it through whatever may be in the future. The sun has made itself known again and our world is no longer upside down. It is sideways now and probably always will be, but it is our "normal" now and we are so very thankful for that. I have become a better person because of my daughter and these kids. We have a very large "family" now of those who understand. I would change the fact that my child had cancer, but I would never change how it has affected our world. I am stronger, I am more thankful, I make time for all the little things. It is amazing how it changes us.

Our holidays were very busy, but also wonderful. It is amazing how fast the time is flying by. Our MAW came and went so fast. It was absolutely the most wonderful thing ever. Give Kids The World is truly an amazing place. If you can READ THE BOOK "The Gift of Life". It is truly an amazing story. I will update later with all the wonderful details of our trip, otherwise you could be here for days!

On to us..

Nikki is doing great. She is such a strong, confident, happy little girl. I can't believe she is going to be 5 in a few months. She did have scans on February 10th. And they came back ALL CLEAR with no evidence of disease. Thank You God!! Brandon is doing well and growing up so fast. Soon to be 7 and really liking 1st grade. Tyler is my handful. He is such a happy kid, but always into everything. He really keeps us on our toes! Jason and I are also great. This whole thing has been tough, but has made us stronger both as a couple and as parents. We are grateful, and humbled. What a rollercoaster this has been. We are on a level right now, but hang on the ride isn't over yet.

Isn't it amazing what a year can do?

Please go visit our friends. They need your love and your prayers now more than ever.

Thank you for checking on us. I will update more often from now on.

Have a wonderful week! Hugs to all,

Heather

Friday, February 4, 2005 0:02 AM CST

Hi All,

Just a quick note to let you know we are still here. No, we have NOT fallen off the face of the earth. (HA HA KRIS:)

Anyway, you will see I have done some work with the photos. Yes, FINALLY some new ones. I have also added a new zeocast. Please be patient, I know it is long but they are some super pictures of our MAW trip. My scanner is down and I have a few more rolls to scan, then I will add more of GKTW and Seaworld. They are all so great it is hard to choose!

I will be doing a new update sometime tomorrow. I PROMISE!! But it is after Midnight and the Mommy needs some sleep:)

Please stop and visit our friend Haley (link above) she is at St. Jude beginning another stage of treatment. I can't think of anyone who deserves her miracle more. They are such a wonderful family! Keep those prayers comin'! And please don't forget the loved ones of our ANGELS, they could still use all of our prayers and support during this rough journey. Thanks everyone!

Until tomorrow.......

Love and Hugs,
Heather

Monday, November 29, 2004 4:28 PM CST

******Keep An Eye On That Counter, almost 20,0000. Please sign and let us know who is the lucky winner!!*******

Hey Gang!!

I just cannot believe how fast time is flying by. It seems only last week I updated. I look back and it has been a heck of a lot longer than that.

Things are going well for all of us. I have come to the conclusion that childhood cancer gives new meaning to the terms B.C. and A.D. Before Cancer and After Diagnosis.

Before we go there....

Nikki had scans on November 19th. I was very worried about them because she has been complaining of a tummy ache a lot and a couple of time she threw up for no reason. (Or so we thought, turns out it was too much juice and stuff from Grandma) For the first time since the end of chemo, I was almost sick. I couldn't sleep, finally crashed about 4:45 and had to be up and moving at 7:00. I was such a wreck, I hope this is not what I will be like in the future!! But thank God, everything came back CLEAR. We are still in remission. She did very well with the blood draw, it was the first without her port. What a trooper!! Now Mom can rest a little until February when she goes in for the 6 month OT scans and labs.

We had a great Thanksgiving. We have soooo much to be thankful for. Looking back I cannot believe how much we took for granted until this was dropped on us!!

The boys are great! Brandon is having a ball and learning so much in 1st grade. He really loves it. He is very excited to have a few loose teeth and can't wait for them to fall out! (I can, he has ALL 4 front ones loose) Thankfully they waited until after pictures. Maybe we will get lucky and they will be out and in again by picutures next year! Tyler is so darn cute and he is learing new tricks everyday! But, he can be SUCH a little monster! Always into EVERYTHING and ANYTHING! Oh well, what's a mom to do??!!

Well, it official!! We are going to Disney. Nikki and Brandon are soooooooooo excited. Mom and Dad are pretty excited too! We will be leaving on December 14th and returning on December 20th. I have been told this is the absolute perfect time to go. We are staying at Give Kids the World. I am really looking forward to the warm weather and seeing all of the amazing Christmas decorations! Only 14 more days!!!

I went shopping on the day after Thanksgiving. INSANE! The lines, the crowds, and mostly ME!! But the good news is, I have ALL my shopping done. Everything is wrapped and ready. I wanted to have it ready to go before we go because when we come back it is only 4 days til christmas and one week til year end at work! The next month is going to be crazy!

I am doing alright. Everything is slowing getting back to normal and I'm not too sore anymore. Now, back to the A.D. B.C. thing.....

I have had alot of time to reflect on this year lately. It just amazes me how things work out. Back in March, time passed so slowly and it felt like end of treatment was light years away. Now time is flying so fast it makes my head spin.
I was told recently by one of Nikkis oncologists that Wilm's is very rare. How can this be? I know more kids with this cancer than can be counted on both of my hands. It seems that everytime I turn around there is another child diagnosed. We need to stop this beast. Not only Wilm's but ALL cancer. It is so unfair.
Things can be put into two categories. Things B.C. and things A.D. We are so grateful for everything B.C., but we realize how insignificant some of our worries were. Now, A.D. we are grateful for everything, every smile, every tear, every laugh and giggle, every hug and sloppy kiss. I don't know about you, but the things I am grateful for and my priorities have changed 180 degrees in the last 9 months. The laundry sits unfolded, so what? I played games and ate dinner with my kids. The dishes are dirty and piling up in the sink, And your point is? I took my kids to the park and gave them 3 extra stories at bedtime. The dog needs a bath and the kitchen floor needs to be cleaned, your right but who cares?! We snuggled on the couch and watched a movie!
I think the most important thing I have learned through this is...Take time to cherish your kids. They are the most precious thing you have. Your kids grow up right before your eyes. They will not wait for you to be ready to grow up, but all that other stuff can wait. Snatch those precious moments and hold them near to your heart. We can never get them back, and you never know what can happen with the rising of the sun!!!

For those of us off treatment or in remission, this battle is far from over. These kids are doing great, but our fight goes on. We no longer have chemo, the hair is growing back, and the doctor appointments are spaced months instead of days apart. It is a different sort of battle. Now we fight ourselves and the worries and fear that come with the word "relapse". We hope and pray for the best, but there is a part of us that needs to prepare for the worst just in case. Then you hate yourself for even thinking about it. I don't know if there was really a point to all this rambling, I just started and couldn't stop. Hopefully we will all take heed, and I hope this doesn't offend anyone. Anyways....

Sorry I haven't gotten new pics up lately. My digital keeps eating batteries like crazy. I have about 20 rolls to have developed. I will try to get on that soon. We will have lots from Disney I am sure. Plus, you have got to see all the hair this kid has. I think she is rubbing her head with Miracle Grow when I am not looking:)

Hope you all had a Wonderful Thanksgiving. We wish all of you a Wonderful and Blessed Holiday Season!

Please stop by and offer thoughts and prayers to some of our friends. And don't forget to keep an eye on the counter! Thanks for checking in! We love you guys! Take care all!! Until next time......

Love,
Heather

Friday, October 8, 2004 10:39 PM CDT

Hey Gang!

Wow, where to begin....

It has been way to long. We have been very busy getting back to the routine we had before. Or at least making a valiant effort!

School is in full swing. Brandon is in first grade and Nikki is in her second year of pre-school. They are loving it and learning alot.

Little Miss Nikki is really getting back to her old self. Her energy is way back up, along with her appetite. She is finally up to the weight she was at diagnosis. She is still whiney, and I'm telling you, the girl has perfected the art of throwing fits! Darn good at it!

Hope this story will make you laugh. (It did me, but not until after is was over.) After the first day of school Brandon needed snacks for his milk break. So in honor of the first day I told the kids they could choose where they wanted to eat supper. Gee, McDonald's! (That would be a change!) So off we go to the grocery store. Thirty minutes later we are in the check out lane. Our local grocery store has those automatic sliding doors. And oh how thoughtful they were to put a bench right next to one of them. Now mind you, I am standing at the counter trying to keep my 15 month old seated in the wonderful "saftey" belt the have installed in these carts. (What a bunch of crap that is!) Tyler is now standing in the cart with both chubby little hands on the counter rocking the cart back and forth. (Think surfing) By this time I am trying to write out the check and keep him sitting. Nikki and Brandon are sitting on the lovely bench. Well, they are supposed to be anyway. I turned my head for that split second to check on the baby and hear the blood curdling screams of my 4 year old. Keep in mind, my daughter is NOT a very graceful child. She tripped over her own feet and hit her head on the side of the steel track on the door. I was very proud of myself as I VERY calmly called her over to check the bump. Imagine my surprise when she moves her hand and I see a gash about 1.5 inches long and very deep. A teenage kid comes over and says "Would you like a bandaid". I looked at this kid and said, "Bandaid?, I really don't think that will keep her head together. What she needs is a trip to the ER." He comes back with " Ma'am I am a certified lifegaurd, would you like to bandage the wound?" As I was thinking to myself Ma'am?,then Dude, she is not drowning she cut her head open, I actually told him. "Yes please, just stick it together so I can get her to the Doctor." I calmly finished writing out my check, put my children and the groceries in the car and did as promised. I took them through the drive up at McDonald's, got them dinner, dropped the boys off at home and took her in. Thank goodnes for dermabond (superglue for skin) it saved me from having my first set of stiches. She would have had about five. Now, you may think I am crazy for that but, I kept an eye on her bandage watching for it to bleed through. (it never did) And they were all starving and it was 6:30 at night. Wow, that was a long story! So once again it is Nikki that makes yet another trip to the doctor! Weird!

As I said things are going well for us. Yesterday Nikki went to the hospital for surgery number 10. She had her port removed and new PE tubes placed in her ears. She is doing great. Quick Funny.... When she was in the hospital for her kidney resection they put her port in and used it for her IV during our stay. For some reason the needle was in just right and when she moved or took a breath it would "tick". (needle rubbed on the back of the port making a ticking sound) Yesterday after she came out of surgery they put a dressing on the port site because it leaves a hole in her chest. Of course she felt it and absolutely insisted that her port was still there. Jason and I both tried and tried to reason with her. Even going as far as SHOWING her the port they removed. (we asked to keep it) She just would not hear it. She looked at and told us "They did NOT take out my port, they took out my TICK! We got a great laugh out of that one once we realized what the heck she was talking about.

They boys are also doing great and growing like weeds! I am hoping to get some new pics posted soon. Nikki is getting her hair back soooo fast. It is the oddest color. Kind of a mousey silvery blonde. She looks so different with that color. I still think it will be dark again. But I guess you never can tell.

As for us big people. The port removal kind of freaked me out. I just makes everything final. Don't get me wrong, that is great news. It just worries you, all the what ifs. I guess that is something you always have and I am having a really hard time getting used to it. She will go back in for scans and bloodwork in November. It will be her first needle stick not in the port site, but I still have emla and I know she will do great.

We are thinking of taking our trip the week before christmas. We have been told that the decorations there are really something to see. I need to call them soon and see if that will be enough time for everything to get set up. All of us are very grateful to them for the wonderful things they do. We are also very excited.

Now that everything is settled down here, Mom is finally taking care of herself. I have had problems with my cycle since I began. After having my tubes tied and trying a couple of other things that didn't work, I am sick of being on the pill for no reason, and it isn't helping. Our family is complete. So the Doctor is opting for a hysterectomy. I will be going in on Thursday the 14th. Not nervous or scared. Just feeling relief. I had 3 c sections so this will be nothing new for me. It will put me down for a few days. But as I am sure you can guess, I don't stay down long!! :)

I hope this finds all of you well. We think of each and every one of you often. I have been visiting, just not signing books lately. I apologize for it being so long but the weather here is unbeliveable and much too nice to be inside. I will get back on track soon. In the meantime, you are all in our prayers! We love each and every one of you, even though we have never had the pleasure to meet most of you. This has been a long hard road for us. All of you have made our journey easier and I thank you from the bottom of my heart for that. I don't know what I would have done without the loving support and encouraging words from you. I will update again soon. Until next time....

Take care all!
Love Ya!,
Heather

Saturday, August 14, 2004 11:18 AM CDT

Hey Gang!

Wow, it has been a while! Please keep in mind, long time between updates means we are slowly adjusting to life off of treatment. Things have been pretty crazy around here. We have been so busy, trying to enjoy the summer and act like a normal family for a change. It has been so nice not to have all those visits to the clinic the last few weeks. From being there yesterday, it sounds like they are really trying to straighten things up there. One can only hope.

I took the kids to the Dakota County fair the other day. Boy did they have a great time. They loved the Dakota City and looking at all of the old time buildings. I was actually surprised they liked it so much.

Boy was yesterday a long day! We left our house at 6:15 am. We were actually on time for our appointments for a change. We went to ultrasound first. It only took about 15 minutes. That was good news. Then it was off to CT for her chest CT. We had an hour to kill between the CT and her Physical Therapy appointment. So we went up to the clinic and got her accessed and counts done. I think that really helped speed things up. She had PT for an hour and then it was back up to Hem/Onc for her exam and the results from the scans. We didn't get out of there until 1:00. We did stop and have a bite to eat on the clinic before we came home. Nikki was starving since she couldn't eat before the scans. It was a good but tiring day.

Let me start with the CT scan. Last time she had a CT was the day she was diagnosed back in March. That time she had eaten so they couldn't use sedation. They used "silly" gas to help her relax. It went well. This time they decided to try with nothing. SHE WAS AWESOME!!! Didn't move a muscle! She went with no sedation, no "silly" gas, nothing. I was so proud of her!!!! Needless to say now we have to dash off to Target for a new Barbie!

I know, I know, get to the point!! EVERYTHING WAS CLEAR!!!
Her Doc said her scans were perfect! Boy, I didn't realize how stressed I was until he said that! So now we are officially off treatment. We will be going monthly to have her port flushed and every three months for scans. They are going to send me a road map in the mail so I know what to expect from now on. This brings so many different emotions. I am just trying to go one day at a time. At least for the next five years! :)

And for now for other news! We requested a wish for Nikki from Make A Wish Minnesota. We found out yesterday that she has been approved for her wish. She gets to go and meet Cinderella and all the rest of the princesses in Disney World. It is such and amazing thing that they do! We are so very thankful and so very grateful for this wonderful thing that they have done for us!

I managed to survive the week with Jason off in Cananda. It was great to have him back home though!! Anyways, next week will be very busy again. Nikki gets to be queen for a day next week at the clinic. Then it is school orientations and and meetings for our dart leauge. So I guess that means I will update again soon.

Thanks to all of you for your wonderful support. Thank you for checking in with us and for singing our guestbook. We still check on everyone daily even though we haven't signed in a while. You all mean so much to us!! Thanks again!

Take Care All,
Love Ya ~~~Heather~~~

Monday, July 26, 2004 10:05 PM CDT

Hello Everyone!

Whew! What a weekend. Everything went wonderfully with the Big Party. We had a great time and all of the kids had loads of fun. It was very busy, and I am glad we are all done until next year! Brandon is now a 6 year old. Wow, the time goes by quickly. Seems like just yesterday he was a newborn.

Tyler came down with a fever on Wednesday night. He hit about 103 degrees. Still not sure what caused it. I think maybe it is his teeth. He has 11 fully out 3 through but not up yet and 2 (a molar and an eyetooth) still trying to break the skin. Ouch! I have never seen a fever that high from teeth, but I think that is what caused it. He was fine by Friday morning.

Nikki on the other hand is a different story. Just when you think you see the light something else comes up and blocks it out. Saturday night (yes, the night of the party when we had 50 people here) she started getting whiney and warm. By 7:30 she was ready for bed. I expected her to be worn out because that is when the counts should have hit rock bottom from her last dose of chemo. Well at around 9:00 she started screaming and crying. I went in and she was burning up. Took her temp and it was 102.4 under the arm, which means you add a degree to make it 103.4. I gave her some Tylenol to help the fever and that was like world war 3. Usually she takes it fine, this time however I had to force her to take it. Then about five minutes later she started screaming again. I calmed her down enough to to find out what was wrong. Her feet hurt. I spent hours through the night rubbing her feet and arms. Thank you vincristine! :( Just when I thought we sailed through this with only minor side effects the vincristine toxin rears it ugly head. Why does this have to happen now when we are finally done? She still felt all around crappy on Sunday and her fever was down to about 100.4. I will probably hear it from the clinic for not bringing her in, but with Tyler being sick I figured that was part of the problem. The other part of the problem is that I am pretty sure she is neutropenic again. Her counts should start climbing up now. Today she is feeling much better and the fever was gone by the time I put her to bed. She is still complaining about her hands and feet hurting, but I am hoping that the PT on Thursday will help with it. With time (hopefully quickly) this too shall pass. Her appetite is still working its way back up and other than this minor setback she is doing okay. (counts were okay, a little low, but still good)

Me, well I am still here. I am trying to figure out just how I made it through all of this. I guess one day at a time. Yes, things could be so much worse, but when you are going through it, it just doesn't seem that way. This weekend was so frustrating for me. To make it so far and then watch her suffer so much when things are supposed to be getting better is very hard. I am just hoping for things to get better now.

I can't remember what I put in the last update, but here is the outlook. On Friday August 13th Nikki will go in for an abdominal ultrasound and a chest catscan with contrast. It should be great fun for me. (Yes, sarcasim at its best) Of course we need to be up at 5:30 am to be there by 7:15 and she can't eat after midnight. Can you say crabby girl? And to make it even better, I have to go alone. Jason will be on his yearly trip fishing to Canada. So Mom will be ALOT nuts by the time the day actually rolls around. But we will be talking ALL CLEAR! So I guess it is worth it. So we will have to wait until then for the "official" all clear from the Oncologist. Mom ought to be a real basket case until we get the results on that one. But on the bright side, what a great way to end the summer and start the new school year!

We are all very excited for Wyatt's Dance on Friday. Please stop by and congratulate him on finishing his chemo.

Please everyone take a moment to stop by our friends and offer your prayers, support and good wishes. They appreciate your visit, and you never know what a difference you can make in a childs life!

I would like to ask everyone to take a moment and visit our friend Haley. She had some bad news and had brain surgery today. We are all saying lots of prayers for you kiddo, you are one strong, brave girl!

Thanks to all of you for your support. Please take just a moment to sign the guestbook and let us know you were here.

I will update again soon! Until next time......

Take Care All,
Love and Hugs,
Heather

Monday, July 19, 2004 10:07 PM CDT

Hey All,

Boy, where to begin. Things have been so crazy here and so much has happened.

Lets start with Nikki...She is doing well. Her foot drop is not getting any better. The oncologist decided to give her the full dose of vincristine and have her go to PT. We will start that next week Thursday. Other than that nothing has really changed regarding side effects from the chemo. She has started getting her hair back. Boy was she excited when her eyebrows started to grow back in. They have come back now. The hair on her head is that soft little ducky fuzz. It is starting to come back darker so we can't wait to see what it will be like.

Well, we did it. We made it down this leg of a journey no parent should have to take. Her last chemo was Wednesday of last week. It was such an emotional thing. I thought I would be so happy to have it over. Don't get me wrong, I am. But so many things come back to you. The fear and anxiety of D day. The worrying about whether this will take her life or not. I just can't believe we have come this far. Back in March it seemed so far off. Now it seems as if this time has just flown by. I am so relieved that she does not have to go through the chemo anymore. We are going to have a very BIG NO MORE CHEMO PARTY. We are not sure when, but it will be sometime in August I think.

Nikki has been such a trooper through all of this. I can see such a difference in her already. She still tires very easily. Her appetite is coming back in spades and so is her happy go lucky personality. Last night she ate 4, yes 4 Hot Dogs, beans and chips for supper. Wow, that girl out ate her daddy!

We have been so busy lately. Lots of Birthdays and stuff lately. We had another garage sale this weekend. Boy, it will be a long time before I do that again. It is a real pain in the butt!

Thank you all for all of your support. I know I have been terrible about updating and signing guestbooks. I think I just really needed a break from it all. I could loose myself in this CB. It has been hard for me not to sign, but it was really something I needed to do. I can never forget what is going on in my life, but this break has really helped restore my sanity. Not that you make me crazy, this whole cancer thing has done a wonderful job of that. I am going to come and visit and sign for every single one of you on Tuesday.

Friday is Brandon's Birthday. I can't believe he is going to be six. He is pretty excited for his big day. He has such a hard time with it because he is the oldest and his birthday is last. They will be graduating and going off to college before we know it. Tyler is still into everything and about the cutest kid ever. He is such a happy kid. I have been so blessed with these wonderful kids. Yeah, they are naughty sometimes but all in all they are good kids.

So on Wednesday we will go in for counts again. Next Thursday we will go for the PT evaluation. Then on the following Wednesday we will go in for the end of treatment scans. Wow, we really are almost done with this part.

Other than that, not a whole lot is new here. We are trying to spend all of the time we can enjoying the beautiful weather we are having here lately. It has been hot, but it is better than rain all the time!

I would just like to thank everyone for all that they have done for us. It has been a long hard road. It should be smoother for us now. I am going to try to get those Thank You's done now. I know it has taken a while. Please know that we are not ungrateful, just very busy. And if I am totally honest, most of the time I am just to wiped out to even think about it. I just can't wait for life to slow down and start to resemble a "normal" life again.

Thanks to all for checking in and for signing our guestbook. We still do check often and Nikki still loves to hear who has been here to visit her. I will update again soon. Until next time.....

Take Care and Love to all,
Heather

Monday, July 5, 2004 11:03 PM CDT

Hi All,

Wow, I seem to be getting worse and worse about updates. On a positive note, that means we are getting closer and closer to the end of treatment. It is just so nice to be able to take a break and try not to think about all that has happened in the last 5 months. (Yeah, like that really happens, but we can at least try!)

It has been such a busy week or so around here. Seems to be the way of things lately.

We had a great 4th. Lots of parties to go to and places to be. We really haven't been home since Friday. I haven't even turned my computer on since then.

Nikki is still feeling okay. No real change on that front. Counts again on Wednesday. She will have her last dose of chemo on July 14th. I am looking forward to it, but at the same time am very afraid of it. From what I have seen on the sites of others a few weeks ahead, it is very emotional. Honestly, I am really dreading this day. What will be keeping the cancer away once chemo is done?! Here we go again with the one day at a time thing! :) At the same time, we are so very fortunate, things could be so much worse for us. I sometimes feel like chanting, I see the light, I see the light! (Meaning the light at the end of this dark, dark tunnel called childhood cancer.)

The kids are all growing so fast. I can't believe it is July already. Where has the summer gone? Soon it will be time to do back to school shopping and readjust to early bedtimes.

The kids have been really busy spending time in the pool. That is when this crazy Minnesota weather permits. Today it topped out at 65 degrees. Its nuts I tell ya, someone needs to tell Mother Nature it is July! And the mosquitos, there is just no stopping them. Poor Nikki welts up really bad from them. You add a newly bald head to that and you get a Nikki that looks like Maggie Simpson! (You know, with the bumps all over her head?) Tyler looks like he has the chicken pox from all the old bites on his head. And it doesn't seem to matter how much spray you use, they keep coming anyways!

Jason and I are keeping busy and trying to keep life somewhat under control and feeling normal, well at least trying to get everyone adjusted to the new normal that we have now. Other than that nothing is really new here.

Thank you to all of our wonderful CB friends and family. We appreciate you all still checking on us and signing in even though we have been slacking in that department. I am really trying to do better. Thanks to all of you for the wonderful support. I don't know what I would do without you!

I will update again after counts on Wednesday. Please remember to take a moment to sign the guestbook. We would really love to know you were here! Until next time......

Take Care All,
Love Ya,
Heather

Friday, June 25, 2004 12:59PM CDT

Hey Gang!

Whew! What a crazy week it has been around here. What else is new?!

We went to clinic on Thursday. Boy was that a challenging afternoon. I was so emotionally exausted it was amazing! We began our journey at 9:15 am leaving our house for her appt. We got there a little late due to road construction. Of course I stood at the desk for almost 10 minutes waiting to be checked in and another 10 for all the stuff she had to do, which in turn made us late for her appointments in Radiology. After spending 45 minutes downstairs getting scans and stuff it was back upstairs. We waited for an HOUR before they came in to acess her port. I was fuming by this time. What could possibly take this long? Lunch Break? Then for the first time since we started this, her port just would not work. She was just about ready to give up when she finally got enough for a blood draw. By this time it was after 12:30 and I had three STARVING, CRABBY kids with me. They did then give us some meal vouchers and told us it would be 45 minutes before counts came back. AAAAGGGGGGHHHHHHHH!! So we went to eat and came back. Saw the doc, got chemo, deacessed, yadayadayada. Now to the good stuff...

Nikki is feeling okay right now. She is beginning to show signs of foot drop and nerve damage. She was only able to get half a dose of the vincristine this week. She is no longer able to hold her toes up and walk on her heels. Tippy toes are still okay. So now they are talking Physical Therapy to get everything back in order. Her counts were good. ANC 2000+ and her hemoglobin 11.2 the highest it has been since chemo started in March. Then we had to wait for the results of the scans.

YEAH, HOORRRAAAYY, YIPPEEE, WAHOO!!! The chest x-ray showed no signs of disease. We did have to wait for them to call us with the results of the ultrasound. Around 5pm she called and said this too was CLEAR. So we are praying Nikki remains CANCER FREE! Boy is it good to hear those words, actually be able to say them. Keep in mind, this does not diminish the fear and anxiety. She could have a scan next week that is not clear. We will never be sure, always afraid. Like I have said before...One day at a time!
But I am now more confident that we will get through this. Nikki is very tired and very clumsy, but we get a 2 week break from chemo so that should help.

Brandon is doing great still. He is such a busy little man. Always wanting to be doing something and being active. He has a birthday coming up on July 23rd that he is really looking forward to.

Tyler is good. He is still getting used to those walking feet. He took a header off of Aunties deck today and has a very large goose egg on his head, of course he had to hit the gravel so there is a lovely raspberry on top of it. Luckily he really didn't hit too hard and he is doing fine. It still looks like Mommy went into a psychotic rage and whacked him on the head. (I didn't, I even have witnesses!)

I am spinning out of control once again. Between trying to stay caught up with a full time job and 3 kiddos, I decided to help/run a garage sale with my sister. I AM NUTS! It is just sooo much work. My house looks like an after the storm scene from the movie Twister, the laundry is pileing up again, and I think our dust bunnies are starting to top out at about 15lbs each! What else is new. I think I have finally learned that this is the life of a cancer family. CRAZY and unorganized. The extremely draining trip to clinic this week just didn't help! Don't get me wrong I'm not having a one woman pity party or anything. These are just the facts, our new way of life.

We are really looking forward to a slow and relaxing upcoming week, and long weekend. We are hoping it warms up and the weather stays nice.

I need to apologize to all of our CB family. I was going to try to visit Thursday and today. I will not promise a day this time, but we will be by this weekend. Maybe during the downtime at the sale?! Thanks for still keeping us in your thoughts and prayers and for checking on us. We love you guys. All of you have become so special to us. We feel like your kids are our own! It is amazing how much you can come to care about people you have never even met. Some of you we have been lucky enough to meet and that just makes it even more special. Thank you Caringbridge for all that you do for us.

Once again Thanks for visiting. Please take a few moments to make a little girl and her Mommy smile. Sign the guestbook and let us know you were here. Have a wonderful weekend all! Until next time.....

Take care
Love and Hugs,
Heather

Wednesday, June 23, 2004 10:52 PM CDT

Hey Gang!!

I'm Sorry, I'm Sorry!! Things have been so hectic here lately I just haven't had time to update.

I will be coming around to visit and catch up with all of you on Thursday at some point, although it may be later. We are thinking and praying for each of you.

Nikki is feeling great and really enjoying her summer. Brandon is growing so fast and is such a good helper lately! Tyler, well he is still one and getting into everything and anything!

We went on the River Cruise today with the Hem-Onc Clinic. We had a wonderful time! We of course saw Wyatt and the crew, and we got to meet Noah and family...Even got to see Mark as a clown. The kids had a blast, they even came home covered in bugs and snakes! Nikki made a new buddy today. She really loved Wyatts big sister Ali. Thanks for looking out for her today kiddo, she had lots of fun with you! Back to the bugs and snakes....they were covered in cute little face paint. I will post pics as soon as I get them developed. The digital batteries died so we had to use the regular camera. Kris and I got some great shots of all 3 kiddos. They could really be trouble when they get bigger! Check out Wyatts slide show for some new pictures of them!

Tomorrow is scans and chemo. Which of course means little sleep for mom, but on the bright side, Wyatt and crew will be there to help pass the time again. Yeah!!!! I will give you a better update tomorrow with lots of news and probably some rants and moans thrown in. Until then....

Take Care,
Love Ya
Heather

Tuesday, June 15, 2004 10:39 PM CDT

FRIDAY JUNE 18TH

ATTENTION ALL: WE ARE NEARING OUR 10,000TH VISIT. PLEASE SIGN THE GUESTBOOK AND LET US KNOW WHO WAS OUR 10,000TH VISITOR!!!!! THANKS AND HAVE A GREAT WEEKEND:)



*****UPDATE*****UPDATE*****UPDATE*****
THURDSAY, JUNE 17, 2004

Hey Guys,
Just a quick note to let you know how everything went yesterday. Her counts were a heck of alot lower than last week. Her Hemoglobin was good at 10.2 but ANC went from 7700 to 1404. They say it is due to her fever and stuff last week. They also saw a hole in her eardrum and are thinking it ruptured from the fluid that was there. I think it was already there and she just missed it. Who knows! We were at the clinic from 11-1:30 for just counts. Wyatt and family were there so that really helped to pass the time! Thanks Guys! Next week ought to be a real treat. We need to be there at 10 to have her port accessed. Then it is off to have an Ultrasound and Chest X-ray. Plus we go back and get the results and she gets her chemo. Can you say LOOOONNNNGGGG day?! I am once again on pins and needles waiting for all this scan stuff to be over. How nerve wrecking this is! Anyways, I will update more later. Until next time....
Take Care,
Love Heather


Hey Gang!:)

Livin la Vida loca!...I think this should be the official slogan for cancer families. What do you think???

First off, I would like to apologize to all of our CB families. My internet keeps going down on and off so I haven't been able to stop in. I will remedy that as soon as I finish here.

I just want to add something quick. Thanks to each and everyone of you who have signed and visited even though it has been too long since I have signed. It is so nice to know you are there and checking on us and that we don't have to do it first for you to be here! Your support holds me up during these frustrating, hectic and scary times when things are just spinning out of control in my world. THANK YOU for letting me slack off and giving me someone to lean on!

I have added some new friends to our page. Please stop by and say Hi and leave some words of encouragement to them. Your support is so appreciated and you will never now how much you can brighten someones day.

When I finish here I will be adding those Cinderella pictures to the photo page. Please check them out, they are pretty adorable. (I know, I know, but I am her Mommy ALL of the pics are adorable!)

Things have been pretty uneventful since Saturday. Sunday we just hung out around the house and cleaned up after the big bash. Mom even got to lay in the sun. It was sooooo nice to just be and do nothing. (Trust me, I am paying for the sun now. Picture a lobster with a chest!) But hey, I finally got the color I wanted, it was just the wrong one.

Nikki is feeling great and really becoming accustomed to being a bossy 4 year old. We go tomorrow for counts. I am hoping they are good, and we won't have to wait to long. The boys are both going with us.
We went to see Shreck 2 tonight. Nikki and I, Brandon opted to go the farm with Dad and Tyler is too little. It was hilarious! Shreck is my favorite, now they both are! We laughed like a "normal" mom and daughter for a change. It was great. For all you parents...the adult humor is great and cleverly disguised so the little ones don't catch on. We had a lot of fun.

All of us are finally feeling better, aside from the cough I just can't seem to shake. It is nice to have them all healthy, but I just feel like decontaminating the house!! Brandon is still being a great helper and really enjoying the summer off. Tyler is still flying around the house on 2 legs like he is king of the world. I am still hangin in there, counting my blessings, and coping one day at a time.

I am looking forward to a very boring and uneventful week. As you know those are the best kind. We are going to have a garage sale soon so I will be marking stuff and getting caught up on work. If you know anyone that is having or has a little one in our area, let me know. I have TONS upon TONS of baby boy and girl clothes. HAHAHAHA!

Thanks for all who sent Birthday Wishes to Nikki, it made her day even more special. Kimbra, thanks for the package! She loves it!! Thanks for checking in, and don't forget to sign the guestbook so we know you were here!!

I will update after counts. Take Care All. Until next time...

Love Ya,
Heather

Saturday, June 12, 2004 11:59PM CDT

HAPPY BIRTHDAY MY PRECIOUS BABY GIRL, NIKKI!!!

I just cannot believe you are 4 years old already. You have been through so very much in your short life. I thank God every day for the gift I was given in you. The things you have taught me, the way you make me laugh, your silly little "Edith" voice, the mad face you make at your brother, the joy and love, the tears, the trips to the doctors, the surgeries, the chemo, the way you light a room by just entering. I would not trade a moment of it for anything. You are such an amazing little girl. I cannot even begin to describe how deeply you have changed my life. You inspire me to be a better Mom. My heart breaks that you hurt, that you have to take this journey, that you are sick. I know in my heart it will make you a better person. You will appreciate life and live every second to its fullest. Your strength and determination will take you to wonderful places. I look so forward to going to them right by your side. Thank you, baby, for all you have taught me and will continue to teach me. I love you!!! Mommy

Hi All!

I am going to give you the condensed version (it is 4 am)!!

Nikki is feeling better. We did the IV antibiotics and the zithromax. Whatever it was is gone now and there have been no fevers for a couple of days. She is feeling great.
What a wonderful day today was. She got so many great things from everyone. THANK YOU TO ALL OF YOU. :) I think her favorite thing was her my size Cinderella Barbie from Grandma and Grandpa! You should have seen her waltzing around the living room with her. It was the cutest thing! We had great weather and will spend tomorrow getting her new toys ready for playtime!

Brandon got lucky and did not catch the crud that has been going around. He has been enjoying the pool. When we actually get a few nice hours here and there anyway! What a great helper and big brother he is. Don't worry buddy your birthday is coming very soon! July 23 isn't too far off now!

Tyler is feeling better now that he has some amoxicillan in him. The fevers are gone, but I think his throat still hurts a little. He did get the strep "rash" that apparently comes along with it. Hopefully it won't last long. It doesn't seem to bother him a whole lot. His teeth are very slowly coming in. (He is cutting 6 at once.) He is almost back to his good ole happy self. Thank goodnes!!

I have been so busy! I did a complete overhaul on the boys' room. And, if I don't say so myself, it looks pretty darn good! We painted the walls kinda of a robins egg blue, put up scooby border and wall stick ups and got Tylers new scooby sheets on his crib! That was a 2 day project I decided to start on Weds after clinic. Then was the party and getting ready for that. Catching up with work and party clean up will be the rest of the weekend. Now if I can just get rid of this head cold all will be good!

Thank You to everyone for all of the wonderful birthday wishes for Nikki, she really loves them! I am going to get to each and everyone of you Sunday! Thanks for checking on us and I apologize that it has taken so long for me to visit you guys! We still think of all of you and pray for you everyday!

Please remember to stop and sign our guestbook! Thanks for visiting. Say lots of prayers for all of our little fighters out there! Check out the links above to all of our friends and drop in and say Hi, they would love your prayers and support! Thanks. I will be adding a bunch of new friends soon.

Okay, that is a wrap for now, because the birds are starting to sing here! Until next time....
Take Care All!

Love Ya,
Heather

Tuesday, June 8, 2004 11:23 PM CDT

*****UPDATE*****UPDATE*****UPDATE*****
WEDNESDAY JUNE 9, 2004 11:55 pm

Hey All!
I just had the pleasure of returning from a trip to the ER. After hours and hours of constant crying I decided to take Tyler in to be seen. Thank God I did! He cries every time he has to cough or cry or swallow. Doesn't that sound like fun. Turns out he has Strep throat. Just add that to my list of fun things that happened today. After feeling good yesterday Miss Nikki woke with a fever this morning. No low grade stuff for her, it was 101.5. Then I take her to the clinic and they say she doesn't have one. (sound familiar Kris??) I said, I don't care what that thermometer says, She is burning up! They did cultures of blood and gave IV antibiotics. Chalk one up for the MOMS!! How much would ya like to bet she has strep too? By the way her counts were great. Hemoglobin 10.1 and ANC over 7700. I am guessing next week they will be low because of the actino last week. She tends to drop later than most. Anyways, I have to run, got a crying sleepy baby on my lap. I will update again very soon, maybe when my sanity returns somewhat. Until next time....Take care All!
Love Ya,
Heather


Hi Gang!

Hold on to your hats, it's going to be a loooong entry!!

I know, I know...It has been way too long. You will find out why as I go on. Partly because it is soooo nice now it is so hard to sit in front of the computer. I apologize for the delay in the updates, I am really going to try to get back more often, but between the kids wanting to go outside and working from home at least 3 days a week it is tough sometimes.

Okay, here is the deal. Nikki is still doing okay. We go tomorrow to check counts. This will be about a 5-6 hour deal to be accessed, drawn and deaccessed and of course make the 2 hour drive. It is extremely hard to have it take so long. Maybe we will get lucky and it will go faster tomorrow. She is still eating good, but is very whiney and tired. Something we are all getting used to by now. I want my sweet little girl back! Please don't take this the wrong way... When I have had it with my kids arguing, talking back, whining, whatever I will tell them I'm going to put a free sticker on their forheads and put them out on the curb for the garbage man. I was very reminded of this just yesterday. Little Miss Nikki left her coloring books on the floor in the living room. I very nicely asked her to put them away so the baby wouldn't eat them. I thought that she did. I went into the kitchen a little later only to find them thrown on the counter. So I called her. Know what her reply was? "What NOW?" She is three, where do they get these things? I thought my hubby was going to laugh himself to death.

Brandon was absolutely adorable at the graduation. I took a whole roll of film. He even got a diploma. They made the cutest memory books. I will save his to put out at his high school graduation. He is growing up so fast and I am so proud of him. He has also been a real big help around here. He is finally coming out of the jealousy. He is doing things I ask him right away! I am amazed at how much he has matured in the last few weeks! Way to go buddybear! He has a birthday on July 23rd. That's right they are all right in a row. I think I may be crazy...they were all planned!! He must have had a bug this weekend. He had the fever this time he got up to 101.7 and had a headache. Thankfully it seems to be gone now. There was strep going around school, so he had me a little worried.

Tyler now is the lucky one. Just tonight he started with the fever. His for now is low grade 100.4. He is also getting 6 teeth at the same time. Yes, I said 6. He is getting all 4 of his eyeteeth and 2 molars. These I think are the worst and the poor baby is getting them all at the same time. He has been waddling around behind me for 3 days doing nothing but crying. Can you say frustrated Mommy?? He has had so much tylenol to control the teething pain in the last week he just drinks it right down. I ask him if he is ready to make a happy BOOM BOOM (nickname) and he opens up to take it. Again Poor Baby. I am hoping he gets through this quickly.

Me? Well besides being stressed out and sleep deprived, I have this yucky cold crud that has been going around. Sore throat, stuffy nose, plugged up head, you name it I have it! It sucks, but I can deal with it. It is watching my babies sick that really gets to me. I tell you, if it isn't one thing it is another. Just when you think you can't handle anymore something good happens. Then something bad has to counter that. What a vicious cycle it is. We just celebrated our 7th wedding anniversary, wow have we grown and changed in that time. It has gone so fast and we have been so blessed! Us cancer parents sure know the meaning of for better or worse, in sickness and in health don't we! That goes for all of you also dealing with a degenerating illness or any other condition our babies have.

So Saturday is the big day! Nikki turns the big 04!! We are doing a Cinderella party. We love all things Cinderella these days. Of course there is Carebears, Barbie, Dora, Strawberry Shortcake and My Little Pony thrown in there too! Hopefully the weather is nice and she is feeling good. Counts should be dropping soon. I also forgot to mention in the last post she will be having a CT, Chest X-ray, and I think an Ultrasound on the 24th of June. Our last day of chemo is fast approaching. It should be around the 2nd week of July. I can't wait. I really think emotionally this is sometimes harder on the parents and physically harder on the kiddos!

Thanks to all of you for the wonderful emails and guestbook entries. Nikki loves the pictures, I love the words. You have all been so great I really can't wait to check the site and see who has been here and read your supportive words. THANK YOU, THANK YOU, THANK YOU!!! Please keep on signing. It means so very much to us.

I will update after counts, probably on Thursday. Have a wonderful week.

Take Care All!
Love Ya,
Heather

Thursday, June 3, 2004 9:43 PM CDT

Hi All,

It has been a pretty busy few days. We are trying to enjoy the sunshine around here. Boy is it nice to see! It rained pretty much for 3 weeks straight here. Yuck!

Nikki had chemo yesterday. She is doing okay. She is neutropenic, they say probably due to the virus she had over the weekend. Nothing serious, just a bug like I thought. They said if we took a normal child getting over a virus and Nikkis lab counts and put them together they would look exactly the same, So that was comforting. So far we haven't seen anything major for side effects. But usually it takes a day or two to effect her. All in all things are creeping along pretty much as expected. But who knows, tomorrow is another day!

Brandon has his last day of school tomorrow. He is so excited! They are having a little Kindergarten Graduation Ceremony for them. I will be prepared with tissues and lots of film. I promised to take them to DQ to celebrate after school and then we are going to have a bonfire later. I can't believe how fast this school year has gone. He will offically be a first grader after 1:00 tomorrow.

Tyler, well he is 1. He is just such a joy. I love watching him waddle around the house and torment his brother and sister. Brandon and Nikki are so good at making him laugh. He has this awesome little belly laugh that shakes his whole body. You cant help but giggle right along with him. He got shots today. Well, I should say one shot. He wasn't able to get chix pox and MMR due to Nikki. So at 15 months he gets three. What a treat for us!!

Jason is busy with work and softball. What else is new?!

Me....I'm hanging in there. Taking one day at a time, and enjoying and treasuring the heck out of my kids. I think they are getting sick of all the hugs and kisses. But, you know what? Too bad, they will need to get used to it. This whole thing has been such a reality check for us. As you all know! It rocks you right down to your soul. But we hold our heads up and keep the faith. We are strong, there is no other choice. We keep plugging ahead even though our lives have been forever changed. We think how unfair this is. Sometimes we need to break down, vent, rant and rage. This is a healthy and completely normal thing for us to do. But in time we learn to pick up the pieces and find a new sense of normal. We never take ANYTHING our kids do for granted. I used to be one of those moms that would keep a few pieces of art work and the rest would find their way to the garbage after bedtime. Not any more! I will probably reget this later, but I throw none of those things away anymore. I guess it is because you never know which piece of artwork could be the last. We cherish our kids because we don't know what the future holds. I have learned one thing from this journey. You never, ever take anything for granted. Every single thing your kids do is precious. We don't know what tomorrow will bring, but we know that today is our gift and we enjoy each and everyday to the fullest. I thank God everyday for my wonderful family. Sure, the future scares us, but we have learned that today is all that matters. We will deal with tomorrow tomorrow.

So many of us are in this journey together. I would like to thank all of our extended Caringbridge family for the wonderful guestbook entries and all of the wonderful supportive emails. I cannot begin to tell you how much it helps me cope knowing I have so much support from people who have been there. You are all such great friends. I am grateful for having met all of you. I treasure each and everyone of you! :)

Anyways, that is enough rambling for one night! I will update again soon. Take care everyone. Until next time....

Love Ya,
Heather

Tuesday, June 1, 2004 0:27 AM CDT

Hello All,

Yes, I know it has been too long. I am in the process of making it around to visit everyone. If I haven't yet, I will tomorrow (well, later today really). Thanks for all of you for checking in on us.

Nikki hasn't been feeling well. She has been running a pretty high fever (100.4 to 102.7) for 2 days now. I am able to control it with Tylenol and other than being whiney, she is doing okay. I am almost afraid to take her in for fear they will admit her. I am sure it is just a bug. Her port site looks great and she says she has no owies anywhere. We go to clinic Wednesday for our first higher dose of chemo. So maybe we will find out then. I am also reluctant to call the clinic during off hours because of our last fisco with them.

Brandon is down to only 4 days of school. He is excited to be on vacation for the summer. Tyler is still trying to master this walking thing. Finally he is starting to waddle around WITHOUT his arms above his head. They boys are doing super and are being really supportive of this whole situation. Of course Tyler doesn't get it, but Brandon has really come around in the last month or so. WHEW!! :)

**********WARNING***WARNING***WARNING***WARNING**********
I have always promised to warn you before emotional rambling so here goes...

I can't help waiting for the other shoe to drop. Everything is running smoothly, don't get me wrong, that is great news. It just makes you wonder... what next? We are fast approaching Nikkis 4th birthday. Man, what a difference a year can make. I'm sure I will look back at this in a year and go "Wow, I can't believe where we are today." But, right now it is so damn hard. There is a ball tournie that same weekend for my hubby's team. Of course he is staying home but some aren't. It ticks me off. It shouldn't because they go "every year". But I can't help but think "every year my daughter didn't have cancer". Is this selfish? Maybe. As I sit here and think about it I know why I feel like this. I don't know if she will be here to have a 5th birthday party. I know that things couldn't look better for us, but any one of you CB moms and dads know this feeling. There is just no way to know what can happen in a year. I hate myself for thinking these things. How do you stop those thoughts? Sitting around watching your child do something and you wonder if it is the last time you will see them do it. You wonder if they will still be here to go to school next year, and other things like that. I have tried to push them away, but they surface at the times when you least expect them. Your child doesn't even have to have cancer, it can be any sort of disease, birth defect or degenerating illness. It is so hard, especially when your child is in pain. You cannot take it away. I know I have said these things before, and I apologize for repeating myself, but it seems these are the things that keep running through my head. Okay on to other things.

I have debated about having a benefit or a fund started to help us out with the medical costs. I thought our insurance was going to pay for almost everything. Boy was I wrong. I have gotten bills totaling over 1500.00 in just the last 2 days. I almost feel guilty thinking about a benefit. Our expenses are nothing like some other families face. I just never expected to start seeing bills like this at this point in our treatment protocol. Any suggestions you may have would be more than welcome. I have no idea how to go about any of this.

Okay, I need sleep now. Thank you again for checking on us and I apologize that is has been so long since I have checked in on all of you. We still think of you everyday and check your sites, I just don't sign in. Thanks for listening and for all of the wonderful support you give me. I thank God everyday for all of the amazing people I have met on this Caringbridge, you all mean so much to me.
I will update after chemo on Wednesday if not sooner.

Please take just a moment out of your day to sign in and let us know you were here. We really love hearing from you. If you don't know what to say, that is okay. Profound words of wisdom aren't needed just Hi, we are thinking of you, let's us know how many are here for us. Thanks!

Remember to say a prayer for all fighting this beast and other illnesses and conditions.

Take Care
Love Ya,
Heather

Wednesday, May 26, 2004 11:28 PM CDT

Hello All,

Today was a very busy day. But then again aren't they all?

Nikkis counts were much better than I thought they would be. Her hemoglobin was 8.7 and her ANC was 4217. Good news! The bad news is...we found out she will still need to go to the clinc for counts when she is on her 2 week breaks. What a bummer. It took 2 hours (not including chat time) to get accessed, drawn, results and deaccessed. A special thanks to Kris, Jim, Carter and Wyatt. They helped us pass the time very quickly. Nikki so did not want to leave the clinic today. Maybe we should move to Thursdays??? They actually had to track us down so the Doctor could see the kids. Imagine that, the Doctors had to do the waiting this time. And now the wonderful news I have been waiting for...

Nikki is considered to be in REMISSION!!!! A sweeter thing I have never heard! You thought I did a happy dance for all of you? You should have seen me today when we got home! It did burst my bubble somewhat to know she has technically been in remission since the day of her surgery. Wish they would have given US this vital piece of information. I also got some of my questions answered. How long till she is cured? 5 years. If a relapse is going to happen it is "usually" within the first 12-18 months. All in all it was a great day.

Tomorrow Brandon and I are going to the Como Zoo with his classmates. Hopefully the weather will be nice. It should be a fun day for all. Grandma is going to come over and watch Nikki and Tyler. In other words...spoil them as much as possible in those hours I am gone.

Tyler is still waddling around the house with those little arms over his head. Cutest darn thing you ever saw! And yes, his eye is the most beautiful purple, green, and blue I have ever seen. Hopefully it will fade quickly. Boy am I glad we got the 1 year pictures taken last week! HAHAHAHA:)

I have recently heard of someone faking a death on a CB site. This is really disturbing to me. I am not sure if we have visited this site or not but it breaks my heart that someone would do this to us. Like we don't have enough to deal with in our everyday lives. How could you do this??

Another CB mom has brought to something to my attention. We have many, many Angels here. It seems the signings are diminishing as time passes. Please take time to stop and offer prayers and well wishes to them. Even though their babies are in heaven now, they still look to us for love and support. Thank You!!

Thanks to all of you who stop and check on us and take time to let us know you were here. Your love and support...well, you can never ever know how much it means to us. Keep up the great work!

I will get around to visiting you all in the next couple of days and I will update soon. Take Care All!

Love Ya,
Heather

Sunday, May 23, 2004 10:27 PM CDT

****UPDATE*****Tuesday, May 24,2004****
Hi All,
Things are still pretty busy here. Nikki is still feeling pretty yucky. I need to revise my previous entry. I don't think it is the vincristine making her miserable. I think she may be one of those that takes longer for low counts to hit. The actino was 2 weeks ago, I think that may be the problem. Oh yeah, we also have a waddling little 1 year old with one heck of a shiner! He fell today and hit his eye on our bed. Good thing it was soft, he is going to be lots of pretty colors tomorrow! Tomorrow we go to the clinic for counts. I will update more after that! Take care all.
Love Ya,
Heather


Hello Everyone,

Wow...It has been such a busy week for us around here!

First of all I would like to apologize to all of our CB families and friends. I haven't had much time this week to be on the computer. You have all been in our thoughts and prayers but I just haven't had time to come in and sign for you guys. I will be getting around tomorrow at some point. Thanks for continuing to check on us and send us prayers and support!

Thanks to all of you who have added us to your links and for the WONDERFUL birthday wishes. I had a super day and all of your well wishes made my day even brighter!

Nikki is having a rough week/weekend. This dose of Vincristine has really kicked her butt. She is a tired, whiney little girl. I have also noticed a bit of drooping in her eyelids. It is subtle, I don't think anyone else would notice. They would just think she is tired. But I can see it. On top of that she has a terrible cold. She gets oozy from every hole in her head when she gets a cold due to her cleft. Luckily she hasn't had a fever or anything, that is good news! Last night she was coughing hard and wanted some medicine...so not knowing what she could or couldn't have I called the onc clinic. The triage nurse couldn't help. "I will have the Doc call you right away" was her answer. Well, it is now 24 hours later. In my book right away would be within a half an hour. Apparently this Doc doesn't know what right away means. He still has not called me back. 24 hours...what a bunch of pains in the butt! It is just ridiculous to me!! I didn't push because she hasn't been coughing for long, but I WILL be placing a not so nice call to the clinic right away in the morning.

My baby is now 1 year old. I cannot believe how fast that time has gone and how much has happened in a year! I am going to have to post some pics of him. He is just the cutest kid. Waddling around the house, with his arms up. (picture yeah...we won arms bent up at 90 degree angle) He also hasn't quite gotten the hang of walking straight. That is right he walks with a little sideways gait. Maybe too much walking along the walls?? At any rate, he is really getting the hang of it now. He had a wonderful birthday! The weather didn't cooperate too well, but it did stop raining for the whole time of the party. He had a blast with his cake and crashed early from all of the excitement.

Brandon is down to 9 days left of school. He loves it, but is ready to be done. He is loving T-ball, and really getting the hang of it now. His first love of course is hockey...thanks to Mom and Dad. He is getting anxious to have his birthday in July. He is such a great help around here. There is such a brotherly bond between them, it is just great to watch. I am such a lucky Mom to have been blessed with these three amazing kids!!!

Nikki has a birthday coming in 3 weeks and she can't wait. She is telling everyone it is 2 weeks and 6 days until her party. Four years old...WOW! This week we only go to the clinic for counts. Nikki is just more comfortable getting poked by Caron. Why give her more stress than needed by having home health come do it?? Next week they raise the doses and then we have another break from chemo. Boy are we looking forward to it!!! Major milestone for us. Chemo should finish up by the 2nd week in July if things continue to go as well as they have so far.

Jason and I are coping. Taking one day at a time. That is the only way to deal and get through this. We are lucky. Yes our child has cancer, but as I sit with tears in my eyes reading the stories on this caringbridge, I realize that things could be worse for us. Cancer is cancer, but our story could be much worse and I thank my lucky stars for that every single day.

Well, I better run. I need to be up early tomorrow for work. Hopefully Nikki will be feeling better or I will probably just work from home tomorrow.

Thanks again to all of you. Please remember to say special prayers for all of our kids who are fighting cancer and other childhood conditions and illnesses.

Oh Yeah, Please take just a moment to sign the guestbook! It will only take a second and we would love to know you were here!!!!

Take care All,
Love Ya,
Heather

Tuesday, May 18, 2004 6:08 PM CDT

Hi All,

Thank you for all the wonderful entires in our guestbook. They really brighten our day! Thanks to all for the Birthday Wishes! I have had a great day full of love, smiles, lots of flowers and a few surprises thrown in. (Thank you Kathy, you always know just what I need. Turning me into a blubbering mess is just a bonus!:)*)

Well, tomorrow brings our last weekly treatment. I am happy, excited, scared, nervous, TERRIFIED, but mostly relieved! It brings so many mixed emotions. We may never know what tomorrow will bring. We pray for the best and never NEVER give up hope. The hardest part is...right now we are activly fighting this. Soon enough there will be no yucky chemo so we loose the reassurance that we are battling with all we have. Anything could happen, we put our trust in the Oncologists. That in itself is something that is difficult to do. We are trusting our babies lives to strangers that have been thrown into our whirlwind lives. Sure, we get to know them, but it is still scary.
Anyways...

Nikki is feeling great! Still tired but she is really hanging in there. I so admire her strength, courage and spirit. She is one amazing girl! As many of you can see, we have been busy visiting all of our friends today! Please sign in so we may come and visit you too!! I am still waiting to get photos of the relay. I will post them as soon as I can.

Please sign our guestbook so we know you were here to visit us. We look forward to your entries. Thanks! :)

Remember to keep all of our little fighters in your thoughts and prayers. It saddens my heart everytime I hear of someone else having to struggle through their childhood.
Okay, I will update more after chemo!

Take Care,
Love Ya,
Heather

Sunday, May 16, 2004 1:31 PM CDT

Hi Everyone!

We have had a busy but fun weekend. Nikki is feeling good. She is still a little tired, but that is easy to deal with.

Let's start with the relay. It was wonderful. There were so many people there to support this cause. Nikki had a good time. She was treated like a little princess. Of course they did the survivor lap, and she got tired. Her little legs just couldn't keep up with all the long legs. She was the only child there. I think the closest in age to her was a 19 year old. Boy was I a blubbering mess. It was both a sad and a happy thing. Happy because we were there, she is a survivor. Sad because this is my baby, she has cancer and there is no way for me to know for sure whether she will be there next year or not. The survivor shirt she got was an adult small. That was the smallest they had. Someone her size shouldn't have to be a survivor. They shouldn't have to deal with this at all. I think I had the hardest time with is. She was excited, the shirts, pins, suckers and chocolate cake! If you were 3 wouldn't you be?!:) I had alot of mixed emotions. When you see the hundreds upon hundreds of luminary bags most of them for someone who has passed away from this horrible beast....well it is a reality check that's for sure. It was beautiful, the bags lighting up the edge of the track and spelling out HOPE with a big star on the bleachers. It was amazing. The only downfall of the evening was Mom forgot her cameras, came home to get them and got back only to have one with a dead battery and one with no film. Luckily some people from my work took pictures and they are going to send them to me. I will get them posted as soon as I get them.

Nikki had her last day of school on Friday. She is pretty bummed. She loves school and is really going to miss going. She will be going back soon enough!

Brandon had a T-ball game Saturday and did a super job! He's really getting the hang of it now. Tyler is busy waddling around like a baby duck! He is so cute. Of course he can walk but sits down as soon as you look at him. What a turkey! We are all doing great. Hanging in there the best that we can.

Thank you to every one who has checked in on us. We are still getting lots of hits and few entires. PLEASE take just a moment to sign the guestbook. We would really love to hear from you and it's great to know who has been visiting us. Thanks!! :)

We go for our final weekly treatment on Wednesday. We are so looking forward to having that small break. At the same time it makes me a little nervous because we aren't activly "fighting the beast". You cancer parents know what I mean. I will update after treatment again.

Please say a prayer for all of the cancer fighters out there everywhere!

Take Care,
Love Ya,
Heather

Thursday, May 13, 2004 8:15 AM CDT

Hi All,

Nikki had a good day at clinic yesterday. She got to play with Wyatt, who we met here at CB. She hasn't talked about much else. Very cool! It was once again, a pretty long day. Her counts were a little low, Hemoglobin at 8.5 and ANC at 1538. She got both Vincristine and Actino-D, which means we will have to watch her pretty close over the next 7-10 days. As many of you know the Actino lowers blood counts, and with hers where they are we need to watch for fevers and such in case they bottom out. We were able to settle into 2 of the uncomfortable chairs pulled together and snuggle under a blanket to watch Beauty and The Beast. Both of us almost fell asleep! All went pretty much the same as usual.

We are getting closer to the finish line everyday! I just can't believe how fast this time has gone. Her protocal goes like this...17 weeks total of chemotherapy. 10 weeks of treatments weekly getting both meds on the first week and then Vincristine every week with Actino-D every 3rd. We are at week 9. Which means next week is her last weekly treatment. She then gets a week off from chemo, still with a count check. Then goes to Actino-D and a higher dose of Vincristine, gets a 2 week break, Goes back again for Both, gets another 2 week break and goes in for one last dose of both. That is the end of the protocal except for scans three weeks after chemo ends. And of course follow up visits. We are really trying to be optimistic that this will be all that she needs, and Praying she will not have to go through this again.

We went to the mall in Burnsville afterwards and actually had a good time. We had a couple of girls go out of their way to make her feel special. They gushed over how cute she was, gave her stickers and coloring pages, and just treated her like a "normal" kid. Hats off to both of you. Of all places this happened at a Payless Shoe Store with a couple of teenaged clerks. Where of coursed she walked out with a new hat and a Hello Kitty stuffed animal backpack. (very spoiled, I know) Thank you to these two girls. That made all of the others seem pretty insignifigant, keep in mind we still had many stares and second glances. I may just tell Nikki that if someone is staring at her to say something like..."I have cancer, if you need to stare go ahead...I like the attention!" Either that or maybe we will both stick our tongues out, wouldn't that be a sight to see? HAHAHA! I would love to have her say "I have to deal with people like you everyday. Aren't you glad it is not someone you know you are doing this to? How do you think your child or loved one would feel in my place?" I think she just may be a little to young for that yet!

Thanks to all of you who have stopped by to visit us and offer us support and kind words. It is truely wonderful what this CB can do for us and others like us. The response is overwhelming at times. Just seeing how many people stop in to check on us can bring tears to your eyes. (Or maybe that is just another of the things us cancer Moms deal with!) At any rate, we Thank You. Keep those wonderful entries coming! :)

I have added some links to our friends. This is the list of families we have met so far in our journey. Some have cancer and some are dealing with other issues. Some have Wilms and some have other types. Regardless, we are all on this journey together. I know there are so many more out there. If you know someone who would like to be added to our list, please let me know. Also, if you know someone who would like to be removed, let me know of that too. All of them could use some kind words and prayers, because like us, they all have wonderful kids who are fighting some sort of battle. Please take a moment to check them out.

Tomorrow is the Relay for Life. I am hoping to get lots of pictures of her debut. I will try to get them posted sometime this weekend. That is of course as long as she cooperates. I will be armed with both a regular and a digital camera.

Nikki only has today and tomorrow left at school. She is really going to miss going. She just loves it sooo much. She has made some wonderful friends there and I know she will miss them too! The support we have gotten from each of the Teachers, Parents and Kids has been a blessing. It has made this road so much easier for Nikki! Thanks to each and everyone of you! Have a great summer! :)

Allright, now that I have written a short novel. I need to go wake sleeping beauty and see if she is feeling up to school. (It starts and 9 and it's already almost 9:15) Thanks again for checking on us. Don't for get to sign, sign, sign!! Please say a prayer for all of our little fighters! It just might make their day a little brighter!

Take Care
Love Ya,
Heather

Tuesday, May 11, 2004 6:57 PM CDT

Hey All!

Sorry it has been so long, but not much has happened around here. WOOOHOOOH! Once again no news is good news.

Nikki is still feeling great. I am assuming her counts are still okay, because other than being tired she is her normal self. Let me rephrase that...she is her new, after diagnosis normal self. I have many times asked her if my sweet Nikki that listens and doesn't throw tantrums fell out with her hair. In her place I have a bald tyrant who is prone to tantrums and 13 year old attitude. I am convinced the first Nikki will return with the re-growth of her hair. We can only hope! Oh well, a day in the life, right?! :)

Well, Brandon is very busy with T-ball. He is learning so much and having a wonderful time! Tyler, he is a walking machine, and his 1st birthday is approaching fast. (May 22) It is hard to believe so much time has passed already. We had a nice quiet Mothers Day here at home. I worked most of the day and then took the kids to the park later. We had Applebees's for dinner...carside to go is a wonderful thing!!!!

Thank You all once again for the kind words in our guestbook. They mean so much to us! (okay, mostly me. Nikki just thinks its cool all those people check on her.)
I would also like to thank all of you who have added a link and prayer request for Nikki on your websites. It brings tears to my eyes everytime I see her name on another site. We have met so many wonderful friends through this caringbridge, and are meeting more every single day. A sad but wonderful thing at the same time. I treasure each and everyone of you!

******WARNING******WARNING******WARNING******WARNING******

Okay, I said I would warn you. Consider yourself warned. Angry Frustrated rantings of a Cancer Mom coming your way.

I take my children almost everywhere with me. This includes our 2 hour 300.00 dollar monthly trips to the grocery store, and outings to Target, K-Mart, Wal-Mart, wherever. I swear if I have one more person stare at my daughter, or I hear the behind the back whispers I CANNOT BE HELD RESPONSIBLE FOR MY ACTIONS!!!! I do not and will not make her wear a hat/bandana unless we are out in the sun. It doesn't bother her, and it doesn't bother me. If you see us in the store, say Hi, ask how it is going or just look the other way. Don't, I repeat..Don't whisper or stare. It hurts her feelings and it really ticks me off. So she is bald. She has cancer. It happens. If you cannot deal with that too bad. Welcome to our everyday life. This is how it is when you have a child with cancer. I hope and pray that none of you ever have to deal with it. Those of you that do know exactly what I am talking about. Even those of you who have a special needs child know what I mean. How angry and frustrated you are when someone says something about your child. If you are that curious, ask me. I will not be offended, I will not snap at you or bite your head off. I am happy to discuss it. If you don't want to hear about it, keep your mouth shut and walk the other direction. If this seems rude or mean, I am sorry. But when you deal with person after person doing this it is hard. You try your best to keep ahold of something that resembles normal life in the midst of this chaos, and in the blink of an eye some stranger demolishes all of your hard work. So please have a little consideration for the feelings of these people the next time you see them. Remember, one SMILE goes a long way! :) Thanks for listening to me rant and thanks for understanding. Okay, with that said....

Tomorrow is Treatment day again. She gets both vincristine and actino-D so we are hoping to keep those counts up. Her chemo is going well. No side effects, other than low counts. Frankly, that scares the H@out of me. It makes me wonder if things are going to well, know what I mean? Oh, well I am going to try not to dwell on that.

Nikki is going to be walking a few laps at our local relay for life on Friday. She is very excited. I hope I can get through this night without becoming a blubbering, weepy blob of Mommy! I will take lots of pictures and get them posted soon. I am still working on getting those links put on. If I add you and you don't want your name on the list please email me and I will remove it asap! Thanks again for listening, and I will be around to visit all of you later tonight. We are off to Dairy Queen for dogs and blizzards for supper! Have A great week, I will update after chemo. Take Care!! :)

Love Ya All Lots,
Heather

In case I forgot, Please take a moment to sign in and let us know you were here. If you don't know what to say Hi will work just fine. We don't need words of wisdom, just knowing you were here is enough! Also remember to keep all of our fighters, cancer and otherwise in your prayers! Thanks!

Saturday, May 8, 2004 2:23 PM CDT

Hello Everyone,

It has been a rather uneventful week here. As many of you know that is a good thing! Nikki is feeling okay. She is dealing with that change of seasons cold and has been pretty tired and crabby, but other than that things are great.

I really appreciate all of the supportive and encouraging words in our guestbook. It is so great to know I am not the only one feeling this way. It felt wonderful to get that off my chest. Don't be surprised if I go off again. I will try to warn you first though!! :)
I did not say those things to gain pity. I said those things because if I did not I would explode. I love my life, my husband and my kids. I would not trade a moment because of all that I have learned and how much I have grown as a person and a Mom. Would I take this away from my baby if I could? Absolutely, she should not have to go through this! Do I wish this never happened? Sure, but you learn to deal, that is the only way to get through each day. We don't get the option of taking a vacation from these thoughts. Even on our happiest days, they are there, eating away at us and making us feel guilty for even thinking them. There is no way to stop them, you can only take things one day at a time and do the best you can.

Each and every one of you are very special to me. My favorites list is so long I may have to separate things by catagory to keep everything organised. If I don't get to you right away, please know I still check daily but sometimes don't have time to sign in. I promise to sign your books at least twice a week. Keep in mind, I could spend hours upon hours at all of these wonderful sites, but then I would get a big butt and and carpel tunnel! HAHAHA!

Please take moment to read the poem I have just added. It is very touching. Thanks to Alexis' mom, I found it on her page. I hope it is okay that I used this. I think this is something all of us cancer Moms need to remember. It is a wonderful way to think about our childs illness!! It has really touched me, and I hope it does the same for you.

Okay, I have an 11 month old sitting in an empty laundry basket. Cute picture, but you need to know that this basket was full 10 minutes ago. I have a 5 foot mountain of clothes needing folding, just another one of those things you put off to spend every second you can with your kids. Or I do anyway! (okay you win, I HATE folding clothes) Tyler's new thing is to empty anything he can get his little hands on. (Boxes of Baggies, Baby wipes etc.) How can someone so sweet and innocent looking go from 0 to destruct in 3 seconds flat?

We wish everyone a WONDERFUL, PEACEFUL AND HAPPY MOTHERS DAY!!!!!

Please take just a moment to sign in and let us know you were here. We enjoy hearing from each of you.

Remember to say a prayer for everyone fighting cancer and other illnessess!

Enough rambling now! Take Care,
Love Ya,
Heather

Wednesday, May 5, 2004 2:02 AM CDT

*****WENDNESDAY MAY 5 2004*****
Hi all,
Everything went very well with chemo today! Nikki was a little nervous because of the bad poke last week, but we got through everything with NO TEARS and lots of smiles! Her counts were good...Hemoglobin 8.2 (a little low) and ANC over 3400! I am still surprised they did not get low after the Actino-D. Thanks to everyone for checking in on us. If I did not get to your site today, I will soon I promise! I have decided to leave my previous entry for a while, just for reflection purposes. I will update again soon! Take Care,
Heather

Hello all,
I did it, I finally got the picture! Thanks for your patience. I bribed her with her Easter dress and she was all for it! And they even turned out very well, YEAH!

Whew, I have just finished visiting all of my CB family and signing guest books. Now I can update ours. Keep in mind I have not been to bed yet, therefore it is still Tuesday for me.

Before I begin I would like to ask for special prayers for Christie, Bill and Sonia. Little Mason has earned his Angel Wings after battling Wilms tumor. Fly sweet Angel!

Nikki is still feeling well. We are off to St. Paul for chemo tomorrow. I will let you know the counts then.

A very dear friend (you know who you are) said to me, "This caringbridge is like a whole other underground world that you never know exsists". How true this is. I have so many special families that I check on, I have cried for Savannah and her family, I have cried for Mason and his family, I have cried for many many others who are still with us, but battling this beast just the same. I am glad I have met these people for each and everyone of them has enriched my life in one way or another. But I am also sad, no child should have to deal with this. No mother should have to watch her baby suffer and not be able to kiss the owie and make it go away. No father should have to worry about whether his baby is going to die or not. It is so unfair, I hate feeling so helpless and out of control. The fear of not knowing what will be in the next days, months and years is unbearable. It is so hard to have thoughts like...What will I do with this if something happens. Or, my child could die at anytime. How do you stop these thoughts? My head tells me they are natural, but my heart feels so guilty. I have these thoughts, what if she does...then comes the guilt that you are somehow going to cause it to happen with those thoughts. I know things are fine right now and that there are lots of others with a more difficult journey than ours. Someone said to me once..."Wilms? You are lucky, that is a good cancer". I wanted to scream, even more I wanted to slap that woman in the face. How dare you say that, my baby has cancer. As if there is really a good cancer, come on! And then you throw in siblings, they don't understand why their brother/sister gets all the attention and they don't. And the emotional issues, acting out, talking back, not listening...the list goes on not only for the child with cancer, but siblings also. Pretty soon you are second guessing yourself and you feel like you can't trust your own judgement. Where is the balance. How do I get to that place? How in the world am I going to do this? There are days when I would gladly list them on ebay for CHEAP! Keep in mind I would never, never trade a single moment. My kids are all so very important to me. All of this has taught me so much. Please forgive me for rambling on. It has been almost two months since diagnosis. Other than shedding a few tears here and there I have not broken down, I do not have the time. I have 3 kids and a full time job that I need not only to keep me sane, but I carry our health insurance. In a perfect world cancer Moms could quit their jobs and be with their kids. Unfortunately, it is not a perfect world. If it were we would not have this horrible beast called Cancer. So you hold your head up high, deal with things one day at a time, and pray for the best. That is the only thing I know for sure right now!! Okay, I came, I wrote, I vented and I feel much better. For those of you who are still reading, WOW! I am surprised you made it, Thank you for listening. It is now 2:45am and I need sleep! I will update tomorrow after chemo.
Say a prayer for all of the cancer fighters out there.
One other thing...PLEASE sign our guestbook we are getting 150 hits per day and not many entries we so enjoy knowing who has been here to see us! Thank You!
Love Ya & Take Care,
Heather

Monday, May 3, 2004 0:47 AM CDT

Hi All,

I am trying really hard to get a new picture for the page. Nicole is just not co-operating. I swear she is a teenager in a 3 year olds body. Her latest thing is to cross her arms over her chest, stick her chin in the air and roll her eyes. How thirteen is that?! Other than that she is feeling great. I am anxious to see what her counts are like on Wednesday.
In case you didn't notice, I haven't been updating everyday. I'll try to do better, but please know if nothing is going on I may skip a day. Every other day for sure I promise.
Well, last nights Twins game was a huge success. The kids were both great! They sat until we decided to leave in the middle of the ninth to beat the traffic. Nikki had a great time clapping and cheering with the crowd eventhough she had no idea what was going on! The only downfall...the Twins lost:(
I have come to know so many wonderful families through this Caringbridge site, thanks all for visiting us:) Please remember to sign the guestbook, they mean so much to both Nikki and Myself!
Please say a prayer for all of the cancer families and all the other wonderful families we have come to know along with all of the other cancer fighters out there.
Take Care,
Heather

Saturday, May 1, 2004 2:05 PM CDT

Hello All,
Not much to update on here, which is good news. Sorry I haven't gotten over to check on some of you in a few days. Nikki is feeling good, a little tired but good. Brandons T-Ball game was lots of fun and those kids did a great job! Big high fives to all of the Marlins:) Tyler is starting to take his first steps now. He was walking 3-4 feet to Mommy this morning at the ball field. Boy is he proud of himself. Now, if we can get Nikki to understand that he needs to do it himself we will be in good shape! The kids are laying down now resting up for the big trip to the Metrodome tonight. Their excitement is contagious. They are bouncing off the walls and asking every 30 seconds when we are leaving. Please remember to sign our guestbook when you are here. Nikki still loves to hear about all of the wonderful people who are checking in and sending prayers to her, Thank You! Please say a special prayer for Lisa, Jerry and Cassie...Sweet Savannah earned her angel wings April 30th after a long battle with a brain tumor. Please keep all of our little fighters in your thoughts and prayers. Once I figure out how I would like to add links for our friends to Nikkis site. Thanks so much for stopping in. Will update again soon! Take Care,
Heather

Wednesday, April 28, 2004 11:32 PM CDT

Hello All,
YIPEEEE, WAHOOOO, HOOORAAAY!!! Ultrasound came back all clear. I did not realize how worried I was until I got the news. It was a huge weight lifted off my chest. We also had another surprise. Her counts came back up alot higher than I expected. She had both actino-D and vincristine last week. I was sure they would be very low. Her hemoglobin was 9.0 and her ANC was over 3200. Great news for us:) She is feeling good so far. Friday is usually the hard day for her. Thanks for checking in on us and for all of your thoughts and prayers. They really worked for us today. Hopefully she will feel well enough to go to school this week. We have another busy weekend planned. I need to get everything caught up for month end at work, Jason has a fishing tourney on Saturday, Brandon has a T-Ball game, and then on Saturday night we are taking Nikki and Brandon to the Twins game. Big thanks to the Clinic for the generous tickets!!:) They are great seats and we are very excited to go. Hopefully Nikki will find the patience to last the whole game. We will update again soon!
Take Care All,
Heather

Tuesday, April 27, 2004 9:49 PM CDT

Hello Again long lost caringbridge family!:)

It has been a wonderful but busy weekend around here so I took the weekend off from the updates. Nikki is still doing great with her treatments. Once again no affects from the actino and vincristine. She did have a slight fever the last couple of days, but she is getting a cold. We will see what they say tomorrow at the clinic. We have our first set of scans since diagnosis tomorrow. Can you say nervous wreck? In my heart I know everything will be okay, but my head keeps saying what if, what if, what if. I so cannot wait for this to be over! The ups and downs of this rollercoaster ride are getting to me. I think I left my stomach back at week 1. I am so sick of being paranoid. Every sniffle, cough, sigh, gas bubble... you name it. I have to stop and tell myself that it is just a kid thing not a cancer thing. I am still going to post the new picture, hopefully tonight after I finish checking in on everyone. If any one out there could help me out, I would love to learn how to put links to all of our cancer friends on Nikkis page. There are so many of them that need special prayers and extra cyber hugs right now and you guys are doing a wonderful job giving them to us! So please let me know if you can help out!! I will update tomorrow after clinic and let you know how things go, right now I want to go finish saying hi and checking on all of our friends. Until tomorrow,
Take Care
Heather

Friday, April 23, 2004 9:25 PM CDT

Happy Friday All!
Well, we are over the missing hair sadness. Hooraaay! I had to go in to work for a little while today and Nikki wanted to go with. Of course it was to show off her bald head. When we walked in the doors of the hospital (I work in accounting at our local hospital) she was very excited. As we came across the first person in the hallway, she whips off her hat with the exuberance only a 3 year old can have and says "HI! I'M BALD!" We got alot of BIG smiles for that. How can you not share in her joy when she is SOOOOO happy with her newfound baldness?! We used her special shampoo last night, of course she threw a fit because she didn't want her hair to grow back. Imagine that! She does understand that she absolutely has to have a hat on outside at all times. Even if it is only to the car and back. Can you imagine how it would feel to sunburn that scalp that hasn't seen sun EVER? Ouch! But if she doesn't want to wear it inside she doesn't have to. If people have a problem with it they don't need to look at her. She is beautiful any way she is! I was worried about how people would react. Take into consideration how she looked for the first 3 months of life. You would not believe the horrible reactions we got from people. Everyone always wants to see a new baby whether it is someone you know or strangers in a store and they expect perfection. When there is something different about said baby reactions vary from "poor baby" to walking away as quickly as possible. I had no problems with the cleft, she was absolutely perfect and beautiful.
Anyways, enough of that. She is still feeling good and has lots of energy. Her eating habits have slowed down lately, but she ate an entire Happy Meal tonight (cheeseburger and fries) We are so proud! We are going to be busy this weekend with Brandon having his first T-Ball game. Boy is he excited. Dad was supposed to be out of town, but the trip was canceled and now he can go! So we will try to enjoy the nice weather and hope it stays around now. I will get a new Bald Princess picture posted soon!
Please say a special prayer for all of our little fighters out there. They are so very precious to all of us!
Take Care,
Heather

Thursday, April 22, 2004 1:45 PM CDT

***We have added new photos, check them out!:)***

Hi All,

Thanks for checking in on us. Nikki is feeling surprisingly well today. There is not a whole lot going on here. We are enjoying another round of warm days here. Nikki got her head shaved today. She was very excited to be bald....until she saw herself in the mirror. She told me she was sad that her hair was sick and needed to be shaved off. I showed her some web pictures of Haley, and that made her feel lots better. THANKS Haley!! Well, we are off to play outside. Say a prayer for all of our cancer fighters out there!! Take Care,
Heather

Thursday, April 22, 2004 1:45 PM CDT

Hi All,

Thanks for checking in on us. Nikki is feeling surprisingly well today. There is not a whole lot going on here. We are enjoying another round of warm days here. Nikki got her head shaved today. She was very excited to be bald....until she saw herself in the mirror. She told me she was sad that her hair was sick and needed to be shaved off. I showed her some web pictures of Haley, and that made her feel lots better. THANKS Haley!! Well, we are off to play outside. Take Care,
Heather

Wednesday, April 21, 2004 10:20 PM CDT

Hello again everyone!

YIPEEEE! One more treatment down. Today was a good day. Nikkis counts came back alot higher than expected. Dr. Mortel told us last week to expect a transfusion this week. I was all nervous and worried because of the unknown. All for nothing. Her hemoglobin was 9.2 (up from 8) and her ANC was 1043 (up from 452) she only made the cut off by 44, but that is fine with me. So far no effects from the actino-D she got today. She got it around 12:10 and has not had any zofran since the dose she got at the clinic. What an awesome kid! I am so proud of her, again no tears. She had a great time showing Daddy how brave she was. He took the day off and came with because of the transfusion. Even though he didn't really need to go, he did a super job holding her stickers for her. (Every single on she got she decided Daddy needed to wear on his shirt) He walked out with 3. The spiderman and schreck weren't so bad, but the dora was over the top. Next week we have an ultrasound before chemo. I'm a little nervous, but confident that it will be clear. Tomorrow, provided she feels well she has school. After that we are going in to get her head shaved so she doesn't look like an old man anymore. It will be tough, but it needs to be done. She is okay with it now that Mommy told her she would get hers cut too. Last night she was on her little stool counting her bald spots. It was the funniest thing...here is a bald spot, here is a bald spot, oh and here is another bald spot. I tried very hard not to laugh.
Daddy and I got a great laugh out of her tonight. We were in the kitchen taking pictures of her before we shave her head. She was singing this song from the Noggin show The Tweenies. (If you are not familiar it is giant puppets singing and dancing.) They sing this song that goes "Ahoy there me harty". Remember in her 3 1/2 year old innocence she does not get the meaning of this word. She is belting out at the top of her lungs "A whore for me matey". With both of us doubled over in laughter and teary eyed we very carefully recited the correct words for the song. After another 10 or so verses Nikki's way we did finally get her to sing it the right way. Can you imagine what people would think if my sweet beautiful daughter in the dresses she always insists on wearing started belting that out in the middle of the grocery store?!!! Not very appropriate language for such a little lady, but humorous just the same. Anyways, will update later.
Please say a special prayer for all of our little fighters out there. Keep signing that guestbook so we know you were here. Take Care,
Heather

Monday, April 19, 2004 9:46 PM CDT

Hello again All!
Thanks to everyone for checking in on us. Yeah!! I got our zeocast up and running again, please check it out I have added some new pictures. Nikki is now almost bald. She did not want us to shave it and last night I finally got her to agree. Wouldn't you know it...I could not bring myself to do it even though it needs to be done. All in all she is feeling well. We have discovered she likes "Strawberry Milk" better than Chocolate. (I think she caught on to the the chocolate.) Even though it is pediasure, she is drinking it like mad! 4 today! Chemo day draws closer and Mom gets more nervous. I guess it is because we always fear the unknown and the transfusion is unknown to us. It looks like she will not be able to have the ultrasound because they don't have an opening. I need to call tomorrow and find out if it can wait until next week or if has to be done Thursday or Friday. Hopefully the news will be good whenever it is done. We had a great time at T-Ball practice today. Brandon is working on hitting it to the fences. Eventhough the two girls on the team are better all around then the six boys, they all have a lot of fun! So do us Moms and Dads watching. (Remember, they are 5 so it is great entertainment, but we are all very proud of them.) Not much more exciting today. I will update tomorrow. Please say a special prayer for all of our little ones enduring this battle with cancer and other illness. And don't forget to sign the book so we know you were here!
Take Care,
Heather

Sunday, April 18, 2004 8:02 PM CDT

Hello All,
Everything is going well here. Nikki is feeling good. It looks like the transfusion is still on along with both doses of chemo on Wednesday. Her hair is about gone now. She will not let me shave it. I really want to but she says no. So be it. We enjoyed a very windy but warm day today. This update will be short due to extreme severe weather in our area. I will be shutting down the computer due to tornados and possible lightning strikes. Hope all is well with everyone. I am having major trouble with our zeocast so I had to temporarily remove it. Hopefully it will be up and running again soon. Sorry I didn't have time to respond to entries and check on everyone. I will do that tomorrow. Thanks for checking on us, we appreciate it so much!!!! Please remember to say a prayer for all of our little fighters out there. Keep signing that guestbook so we know you were here to visit us!
Take Care,
Heather

Saturday, April 17, 2004 1:29 AM CDT

Hi All,
This will be another quick update. Another rather uneventful day full of crazy sleep schedules. Oh well! Nikki is still feeling pretty good, but very tired. We enjoyed another beautiful day outside today. Tyler actually took a couple of steps today. He is also getting really good at standing by himself in the middle of the room. Brandon is looking forward to sleeping in and playing outside lots this summer. Eventhough he likes school, he can't wait for summer vacation. Nikki was feeling well enough to go to school today. She likes it so much it breaks my heart when she can't go. She only has one month left I hope she makes it the rest of the time. If not she will be back next year. Check out the new zeoflick, I added some new pictures to it. Please say a prayer for all of our little fighters. We have made so many new friends through caringbridge. It is sad we have to meet this way, but I am glad that we did. Keep signing that guestbook so we know you were here.
Take Care,
Heather

Thursday, April 15, 2004 10:21 PM CDT

Hi All,
Today was a pretty uneventful day. I LOVE these kind of days. Nikki went to school and the poor baby was so tired she crashed for 3 hours. I was hoping that she would still be able to sleep tonight but she just went to bed and I can hear her singing in there. Oh well. Crazy days, Crazy nights it has become a regular thing in my life lately. Any one out there that has had a child go through this chemo I have a question... How long does it take for the hair to completely fall out once the process begins? We are just over one week and the back is thin but she now has tons of bald spots in the front. I am so ready to shave this off!! Any information would help so much. Thanks! Anyways, there isn't much more to update for today. Please remember to say a prayer for all of our little fighters out there! Keep signing that guestbook so we know you were here. Take Care,
Heather

Wednesday, April 14, 2004 9:32 PM CDT

Hi Everyone,
Week number 5 down, only 12 weeks to go! (It may sound like alot to you, but it sounds short to me) Today went very well. For the first time there were NO TEARS during any part of the procedure today. We were both so proud. Her counts were pretty low today Hemoglobin 8.1, ANC 465 (it was 4000 2 weeks ago that gives you some idea of what the actino-D does to the counts of these kids), Platelets 265000. Not good, but at least we are not at risk for infection at this point. Next week she gets both doses so the Doctor told me to expect a blood transfusion during next weeks visit. She has now lost about 50f her hair. I tell you, if I knew it was all going to fall out for sure I would seriously consider shaving her head. It is unbelievable how much and how fast it is coming out. So far she is feeling good, but she is very very tired and wears out easily. Probably due to the low hemoglobin. Tomorrow she is supposed to go to school let's hope she feels well enough to go. There is not much else to update on. We spent the day enjoying the beautiful Minnesota spring weather. I took the kids for a bike ride today. Tyler and Nikki were in the pull behind carrier and Brandon got to ride along side on his own bike. Last year Tyler was to small to go so this was his first real bike ride. He absolutely loved it. Nikki was a little upset because she couldn't ride her bike. She would never keep up on her training wheels. She realized later that was the way to go because she didn't have to do any of the work Mom did it all. (Mom will be paying for it tomorrow by the way!) Remember to say a prayer for all of our little fighters out there, they are soooo brave!
Take Care,
Heather

Wednesday, April 14, 2004 2:12 AM CDT

Hi All,
Well, we are facing another day of chemo tomorrow. Hopefully all will continue as it has been. Nikki is still feeling pretty good overall. Let's hope we (I) remeber the emla cream before we get into the parking ramp this week. She tires very easily and gets angry very easily. (Just ask her brothers!) This has in NO way effected the power of her lungs. She now screams her frustrations to her brothers and us. What is a parent to do. Her bedtimes are all out of whack, but how can I not let her sleep when she is so tired? But that means she is up till all hours. Again with the choosing battles! Not that it really matters because I am up all hours trying to catch up on work. We put in for a quilt of love today. What a beautiful thing for these brave kids. There is a link attached below if you would care to check it out. Nikki's will be ready in a few weeks, and I will put a link for hers then. I am still trying to find time to post some new pictures and a new zeocast, not enough hours in the day lately. (That is obvious since I am updating at 2am)

Again please remember to pray for all of our little fighters out there, cancer and otherwise!

KEEP SIGNING THAT GUESTBOOK SO WE KNOW YOU WERE HERE!!!

Take Care,
Heather

Monday, April 12, 2004 11:36 PM CDT

Hello Everyone,
Today has been a good day. Another chemo is drawing near. Everything is good with us. Nikki is still feeling okay, but extremely tired and wears out easily. Brandon had his first T-Ball practice today and had a real blast. Lets hope this weather continues to get warm and stay that way. Anyways, not a whole lot going on here otherwise. Please remember to keep our little fighters in your thoughts and prayers. Please sign the guestbook so we know you were here. Take Care,
Heather

Sunday, April 11, 2004 9:35 PM CDT

HAPPY EASTER ALL!

Today went very well. The kids had a wonderful but busy day. Nikki insisted on wearing her new princess tennis shoes with the beautiful new Easter dress she got. Oh well... we choose our battles and that is one I decided to let her win. We were lucky weather wise today, it was alot nicer than they said it would be. YIPPEE! We hope all of you also had a super day.
Please remember to keep all of our little fighters in your thoughts and prayers. They are such brave and strong little troopers!! Take Care,
Heather

Saturday, April 10, 2004 11:02 PM CDT

Hi All,

I would like to the time to say Thank You. Thank you to all of the cancer Moms and Dads for checking in on us. Your words of wisdom and support show no end and mean so much...words cannot describe. You are like a special family to us. You know what we are feeling and going through and you will never know how much it means to us. The caring and support we get from all of you provides great strength to me and helps me know that we truely are NOT alone in this. Checking in on all of you holds a special spot in my day. I may not sign every day, but I do check daily. It can not be said enough, THANK YOU!

To our family, and to our friends old and new,
Thank you for all of your help, understanding and support. We don't know what we would do without each and everyone of you. We love you all so much. So Thank You for all you have done and will continue to do to support us through this rough spot in our lives. Again, words cannot describe how much it means to us. So THANK YOU!

Now that that is over with...

Nikki is feeling better today. The fever is for the most part gone and she is eagerly awaiting the arrival of the Easter Bunny. Brandon is equally as excited. Tyler, well he is 10 months old, his feet are the coolest thing in his world right now. We all had a good laugh tonight. We gave Tyler his first dose of Jello Eggs. He poked and giggled, touched and giggled, then as Nikki would put it...he squished it and got messy. It was quite an experience. There is not a whole lot more than that going on here.

We wish everyone a blessed and happy Easter. Hope the Bunny is good to you. Give your loved ones an extra hug and kiss. And please remember all of our little fighters out there. Keep on signing that guestbook. Alot of times, that is our bedtime story as it makes for sweet dreams.
Take Care,
Heather

Saturday, April 10, 2004 2:32 AM CDT

Hello Everyone,
Unfortunatly today was not a good one. Nikki woke up with a fever this morning. I had to force her to take tylenol to bring it down. And man oh man was she crabby. We argued about what she would eat, drink, do... you name it, and it was a battle today. I think some of it was being extremely tired. She layed on the couch all morning. And as excited as she was for beach day, she didn't want to go to school. Her hair loss has become pretty severe. It started on Wednesday and already it is so thin you can see her scalp in lots of places. I give her a week or two and she will be bald. But, get this...she is VERY excited to be bald she says she wants to be and can't wait for it to fall out. WHAT A SUPERSTAR!! We were so blessed with this amazing little girl! With her tylenol and a 4 and 1/2 hour nap she was feeling a lot better. I'm still not sure what the fever was about. Maybe just worn down from chemo, and the sleep helped out?! It is gone now, so that is great news! Hopefully tomorrow will be a better day. If not, we may not be going to see either Grandparents on Sunday. It may be an at home day. We would all be pretty bummed if that is the case. Just for that reason, I haven't mentioned it to the kids yet. I would really hate to disappoint them if it comes down to staying home. Only time will tell. We are hoping for the best.
We hope that everyone has a wonderful and blessed easter. Remember to keep our little fighters in your thoughts and prayers, and don't forget to SIGN OUR GUESTBOOK so we know you were here.
Take Care,
Heather

Thursday, April 8, 2004 10:04 PM CDT

Hi All!
It was another beautiful day here in Minnesota! Too bad they are saying snow for Easter.:( Nikki is still feeling good. She is such a trooper and We are so very proud of her. Today was a pretty uneventful day around here. Nikki went to school and found out tomorrow is Beach Day. She is soooo excited and wants to wear her bikini to school. It will be an interesting morning. Please keep praying for all of our little fighters. Take Care,
Heather

Thursday, April 8, 2004 1:21 AM CDT

Hello All,
We now have dose number 4 behind us. All went smoothly today at the hem-onc clinic. Except for the fact I forgot her emla cream in my rush this morning, and she decided to remind me as we were driving into the parking ramp. Whoops! Luckily they had some there. Needless to say, I now have a tube and some tegaderm in my purse. We also went for a recheck with the surgeon today. He says she looks great and we don't need to see him again until he needs to remove her port. The only bad news today is that her hair is starting to fall out. When asked if she wanted hats or if she will just be bald her answer was...you guessed it, I'll just be bald. Oh well, I think it is harder for me than for her. If this is the only side effect we have from chemo (and it is so far) SO BE IT! I will learn to deal, just as all other chemo moms and dads have had to do. Her counts were still good. On the rise I think from actino last week. ANC was 1188, good news! I will try to get those pictures posted tomorrow, and some new ones of her getting her port accessed. Remember to pray for all of our little fighters out there! I learn of new ones everyday. Take Care,
Heather


****OUR NEW EMAIL ADDRESS IS... hjschultz@charter.net********

Tuesday, April 6, 2004 10:11 PM CDT

Hi All,
We had a good day today. Pretty much the same as yesterday, not much going on. This is okay with me. After all that went on for the last three weeks, the down time is good for all of us. We spent the afternoon outside enjoying the beautiful weather before it gets cold again. Minnesota, gotta love it!! Tomorrow is chemo day. I have decided to bring Tyler to daycare rather than take him with. That will make allow me to focus more on Nikki when we are there. I also have family pictures to pick up. Hopefully I will be able to get them posted tomorrow evening. They did not turn out very well, getting all three kids to cooperate at the same time was darn near impossible! Oh well, we just wanted one of Nikki before we cut her hair. I am tempted to do it over just because we got her hair cut. Anyways, I will update more tomorrow after chemo. Remember to pray for all of our little fighters! Please remember to sign the guestbook so we know you were here:)!!
Take Care,
Heather

PS, SOMETIME ON THURDSAY WE WILL BE GETTING NEW INTERNET SERVICE, SO WE WILL HAVE A NEW EMAIL ADDRESS. I WILL POST IT HERE AS SOON AS I KNOW WHAT IT IS.

Monday, April 5, 2004 11:18 PM CDT

Hi All,
Another day down. We got everything taken care of with the Doctor. Apparently they mixed up the days. Nikki is still feeling good. It was so beautiful here today, it hit 70 degrees!!:) Hopefully it will stay this nice. Again, a pretty uneventful day. Nothing new but Nikki picking on Tyler and Brandon picking on Nikki. A day in the life...
Remember to pray for all of our little cancer and illness fighters out there. Take Care
Heather

Sunday, April 4, 2004 11:19 PM CDT

Hello Everyone!
What a great weekend. Nikki is still feeling pretty good so far. Hopefully we can get this strange Dr. Appointment figured out. We were so busy! Running around outside, going out for breakfast with Grandpa and Grandma, and getting more practice riding that bike. It was loads of fun! I don't have much more to update today, but I'm sure that will change as time goes on. Please remember to keep all the little cancer fighters and survivors and all the others battling different illnesses in your thoughts and prayers. Enjoy each day to the fullest, you never know what might happen.

Please remember to sign Nikkis guestbook!

Take care and have a great week!
Heather

Saturday, April 3, 2004 7:38 PM CST

Hi All,
Hope everyone is having a good weekend. We are so busy enjoying the beautiful weather. Nikki is still doing well. It looks like she may have a double ear infection. Oh, well, more antibiotics and another trip to the Doctor. She was just outside riding her bike. She is getting pretty good at it finally. I got a strange phone call on Friday afternoon, the hem-onc clinic called and said she had an appointment Monday. I really hope she was wrong because she can't have chemo until Wednesday. It was weird. Anyways, not a whole lot more to update on. Remember to keep all of our cancer fighters and other little ones battling illness in your thoughts and prayers. Take Care,
Heather

Friday, April 2, 2004 8:21 PM CST

HAPPY FRIDAY ALL!!

I am very happy to say today was another pretty uneventful day. The kids got a chance to enjoy the beautiful Minnesota spring weather, and Mom got a nice break thanks to Grandma. Nikki is still feeling pretty good. Just a little more tired than usual, but long naps make up for that. Well, Mom is off for a much needed night on the town:) YEAH! So again, remember to keep all of our tough little cancer pals in your thoughts and prayers.
Take Care,
Heather

Thursday, April 1, 2004 10:17 PM CST

Hi All,
All in all today was pretty uneventful. And as I have seen lots of other cancer Moms say... No news is good news. Thankfully, there have been no bad effects of yesterdays chemo other than being kind of crabby and whiney. Oh well, that is easy enough to deal with. We can't wait to get outside and enjoy the beautiful spring weather tomorrow. Thanks again to all who stop in daily to check on us. The volume of traffic we see on the site continues to amaze me. We are getting roughly 75-100 hits per day. WOW! PLEASE remember to sign Nikkis guest book, you have no idea how much those little notes mean to both of us. Thanks! And a big THANK YOU to all the cancer Moms who are checking in and offering advice and support to me. It means so much to know that I am not alone, and that these thoughts and feelings really are normal! Remember to keep all of our cancer buddies in your thoughts and prayers.
Take care,
Heather

Wednesday, March 31, 2004 9:19 PM CST

Hi All,
S-T-U-B-B-O-R-N. That is the only word I find right now. Our conversations today went like this... Nicole, eat your dinner. NO!! Nicole, you need to rest. NO!! Boy, does she test my patience. All went okay with chemo today. Her counts were still great, so she got both actino and vincristine. I was so worried about the way this treatment would go, and she surprised me again. So far we haven't seen any problems. Just a little while ago she started to get whiny and you can tell she is worn out. Tomorrow will probably a pretty tough day. But once again, only time will tell. The boys went with us, and surprisingly all went smooth. Brandon had fun playing with the child life specialist Sara. Tyler, well he's 10 months old what can you expect. He chewed on stuff. Our only bump in the road today was Nikki. We pulled into the parking ramp and she looked at me with this surprised face and said "my drink is spilling". So I checked it out and her skirt and jacket were a little wet. No big deal, right?! WRONG! She had decided to wait until half of the bottle was spilled, and then let me know. I got her out and her skirt was so wet it was dripping on the ground. (Strawberry Gatorade...thank you Gatorade for making it clear!!) Needless to say, she got scrubs and they "tubed" her skirt down to the Onc Floor to run it through the dryer for us. (tubed - like in the drive-thru at the bank) It was lots of fun! I have decided to pack an extra change of clothes for each of us and leave it in the car. 3 weeks, 3 accidents... Nikki the first week with the flu - I'm sure you can imagine and don't need details. Last week it was Tyler with a major blow-out. He came home in scrubs. Then today with Nikki. The good news, we finally got tegaderm removed with no tears! Boy was she proud of herself. All in all it was a very interesting day. Thanks to everyone for checking in. Don't forget to keep all of our cancer buddies in your prayers! Take care all,
Heather

Tuesday, March 30, 2004 10:50 PM CST

Hello Again!
My charming daughter is driving me crazy! She is feeling super and let's everyone know it. Today she spent the entire day driving her brothers crazy. She has also figured out how to throw great tantrums to get her way. It works with the sitter but not with us. Tomorrow is treatment day. Boy will this be fun, the boys are both going with us. It will be a long day for all of us. I will update tomorrow night and let everyone know how it went and how she is doing. Remember to pray for all of our cancer buddies and their families! There are way too many of us out there!
Take care,
Heather

Monday, March 29, 2004 9:15 PM CST

Hi All,
Another day down. Today was a great day for Nikki. My nerves on the other hand are about shot. I can't help but wonder and worry about what her next treatment will bring. It is so tough not to know how she will handle things. The unkown is so scary!
Nikki got to stay with one of her favorite babysitters today so Mom could go to work. They had a great time, but she is getting so spoiled she wants everything to be her way. She lets us know that she doesn't like it when it doesn't happen that way. My mantra this afternoon was "love is patient, love is patient". Man is she a frustrating little tiger! She is having a great time driving both of her brothers up the wall. She has now discovered that Tyler can voice is opinion when he is angry, and she thinks it is the funniest thing in the world. I don't know whether to scold her or laugh with her! By the way, Tyler's way of voicing his opinion is to grunt at her at the top of his lungs. You need earplugs and Tylenol to survive at my house. Thanks to everyone for your visits to the guest book. Keep 'em coming. Remember to say special prayers to all of our little cancer fighters out there.
Take Care,Heather

Sunday, March 28, 2004 10:04 PM CST

Hi All,
Wow, I can't believe what a rollercoaster ride our life has become lately. Yesterday Nikki was tired, whiney, had no energy and a low grade fever. Another day another surprise!! We got slushies from DQ last night and she never finished hers so we put it in the freezer for later. I woke up this morning to her and her brothers eating grape slushies at 8 am. She was in a super mood, the fever was gone, and she was back to her old self. Unbelievable huh? It just goes to show, you can't count on anything being stable from day to day. She is still having a hard time letting anyone close enough to touch her owies. The worst part for her is pulling of the bandaids and the tegaderm (special tape we put over the emla cream) Hopefully she will get used to this soon. She is still eating wonderfully and drinking that "chocolate milk". For those of you that don't know we are giving her pediasure nutrition drinks and calling it chocolate milk. She still loves it and is none the wiser, but if you tell her you are going to give her a chocolate shake she freaks out and says no way. We sat down and read all of the recent guest book entries today. She gets so excited to know all of these people are writing her letters. I also finally got that photo album working. It is pretty primative so forgive me! I am working on a zeocast flick right now but the site is down or something. Well tomorrow comes early and I have lots to do before bed. Thank you for all of your thoughts and prayers we greatly appreciate it! Take care, Heather

Saturday, March 27, 2004 11:36 PM CST

Hello All,
Another day full of unknowns. Last night after my entry Nikki developed a low grade fever. We are able to control it with Tylenol, but lately she really hates taking medicine. I am not sure if she is feeling sick or if it is due to her blood counts. That is not supposed to happen for a few weeks, so I think maybe the Vincristine is giving her a little trouble. She has bouts of energy, but she is very tired and whiney today. Although her appetite is still great! As you can see I finally got the photos. I am working on a link to put some past photos out there. The home page photo was just taken today. I told you all the haircut was adorable! She is so excited to see herself on the "puter". I read all the notes to her today and she thought that was just super! Keep those "smiles" coming. Huge Thanks to Grandpa and Grandma for the camera to allow us to show you our beautiful girl. You can't even see the cleft scar unless you know it is there. It is really amazing what they can do these days. Again it amazes me how fast word has spread about her site. Thanks to all who visit us, it's wonderful to know so many are concerned and keeping us in their prayers. I will update again tomorrow evening. Check back soon for more photos.
Until later, Heather

Saturday, March 27, 2004 1:21 AM CST

Hi All,
It is still Friday for me, so here we go. All went smoothly today. We had a great day and Nikki was feeling up to going to school. Too see her on the street you would never know what she has been through and what she is going through right now. She is still showing off that haircut to everyone who will listen. Hopefully she will have just as much fun showing off her bald head. I am not holding out much hope that she will keep her hair. I still think it will fall out. Oh well, it will come back. She really soaked up the attention she got when I took her to work with me and all the girls got to see it. She gets tired pretty easily these days, but she was up to sitting around the fire and playing on the swings tonight. What a brave girl she is. Good news, I may be getting a digital camera tomorrow. Hopefully I can figure it out and get a photo album going by Sunday. I guess I can always do what Dad said and give it to Tyler or Nikki to figure out how to run it. Well, as I said everything is still going great for now, but tomorrow is another day. Take care and I will talk to you soon.
Heather

Thursday, March 25, 2004 10:35 PM CST

Hello again Everyone!
Wow!! I never expected word of this site to spread so fast. It really is amazing. Thanks for all of your visits. It wonderful to know so many people are thinking of us.
All I can say is our daughter is truely amazing. We saw no side effects from this dose of chemo. She is still going strong and almost impossible to keep up with! She was feeling well enough today to be running around and playing on the swings outside. She also was able to go to school today, something she was not up to last Thursday after chemo. She had a super time showing of her new haircut to everyone. I still can't believe how cute she looks with her new style. She really loves it. Hopefully I will be able to get some pictures out there soon so you all can see the before and after shots.
Please sign our guestbook when you visit. Nikki loves to be read all the "special smiles" people send her. It really puts a bright spot in her day, and Lord knows there are some days when she really needs that lift. (and so do I) Hopefully future treatments will go as smoothly as this one, but only time will tell. Next weeks she gets both doses so it could be a long week for all of us.
Keep those "smiles" coming. We will talk to you soon!
Heather

Thursday, March 25, 2004 10:35 PM CST

Hello again Everyone!
Wow!! I never expected word of this site to spread so fast. It really is amazing. Thanks for all of your visits. It wonderful to know so many people are thinking of us.
All I can say is our daughter is truely amazing. We saw no side effects from this dose of chemo. She is still going strong and almost impossible to keep up with! She was feeling well enough today to be running around and playing on the swings outside. She also was able to go to school today, something she was not up to last Thursday after chemo. She had a super time showing of her new haircut to everyone. I still can't believe how cute she looks with her new style. She really loves it. Hopefully I will be able to get some pictures out there soon so you all can see the before and after shots.
Please sign our guestbook when you visit. Nikki loves to be read all the "special smiles" people send her. It really puts a bright spot in her day, and Lord knows there are some days when she really needs that lift. (and so do I) Hopefully future treatments will go as smoothly as this one, but only time will tell. Next weeks she gets both doses so it could be a long week for all of us.
Keep those "smiles" coming. We will talk to you soon!
Heather

Wednesday, March 24, 2004 8:56 PM CST

Hi all,
We went for dose 2 of chemo today. So far so good. I have seen no side effects so far. In fact we left the hospital and she had Burger King for lunch and ate every bite. I was surprised because her appetite has really gone down hill in the last week. She then took a nap and layed around and watched movies. She ate sloppy joes, pickles, chips and drank all of her chocolate milk for supper, and still had room for a blizzard from DQ. (What she thinks is chocolate milk is really pediasure to help with weight loss, but what she doesn't know won't hurt her.) I also met her oncologist today. We did get some good news. He seems to think that her hair will only get thin and not fall out. We are now hoping for the best in that area. So as I said she is doing awesome for now. Tomorrow on the other hand may a totally different story. Take care! Heather

Wednesday, March 24, 2004 2:23 AM CST

Hi All,
This could take a while, but for those of you that don't know, I will start at the beginning.
There are five of us in our busy family. Six if you count our black lab Kira. Myself, my husband Jason and our three kids. Brandon 5, Nicole 3, and Tyler 10 months. Like I said, our busy family!
Our beautiful baby girl was born on June 12, 2000. Very healthy except for a cleft lip and palate. To make a long story short, we have had 6 palate/nose/lip repairs to date. Also there was a tennis ball size hemangioma (strawberry birthmark) removal thrown in. So that makes 8 surgeries so far. What a superstar!:)
So our next step in this unexpected journey begins. On Saturday March 6 I was getting Nikki ready for the day and found a large lump on her left side. So I waited until her regular doctor was in clinic and took her in on Monday. He sent us to Nfld hospital for an ultrasound Tuesday. I got a phone call from the doctor at 10:30 am. He told me it was some sort of a tumor or mass in her left kidney, can we be at Children's in St. Paul by 1:00 to see a pediatric renal (kidney) surgeon. Of course by this time I contacted my husband and tell him to come home. So we arrive at the clinic to be told that looking at the ultrasound pictures it seems to be a Wilms Tumor (nephroblastoma). In other words, it looks like she has cancer. Let me tell you, this is THE scariest word in the human language.
I will be as to the point as I can, but as you can imagine the next 2 days are pretty much a blur. They sent her down to be admitted for a CT Scan and possibly emergency surgery to remove the entire left kidney. When we finally got the CT results back in was a confirmation, yes she definately has a Wilms Tumor.
In the next six hours we had a surgery scheduled and met so many new faces it was impossible to keep track of them all. Somehow I managed to keep it together. The hardest part is the fact that she was not sick at all. They wanted her overnight and I said no. We had so much to do at home with the boys, plus I figured one more night in the comfort of her own bed would be good for her.
On Wednesday March 10 Nikki was taken into surgery at 3:00 pm. After three and a half hours, the surgeon came out and told us everything went according to plan. They are pretty sure everything is out and the tumor was contained in the kidney. Great News!! We spent that night and most of Thursday in PICU to closely monitor kidney function. She moved to her own room on the oncology floor late that afternoon. She was in quite a bit of pain so they were giving her morphine for relief. That helped her rest, but by late Thursday night she wanted nothing to do with pain meds. She went 5 hours, then 8, then 12. She had a dose at noon on Friday, and that was the last one she had. Her oncologist was amazed because apparently most kids with this surgery have a constant drip for 3-4 days. Again what a Superstar!:)
By Friday night they had her up walking and she took a bath. Much to her disagreement! Boy does that child have good lungs. Saturday dawned bright and early and as usual so did Nicole. She was up walking and visiting the playroom. Getting her to leave was the next best thing to impossible. I couldn't even get her into bed to rest. She insisted on sitting in the wagon they had for her. By then we had gotten the okay to head home bright and early Sunday morning. Boy were we ready for that. Nikki had been telling me since Friday night she wanted to go home.
I think to this day she only took 3 dosed of medicine for pain since we got home. I happened to walk in the living room that night just in time to take a flying leap off the couch. Can you say coronary? I scolded her for it of course and her reply was, "Brandon did in first" go figure.
We got the final results Monday March 15. Wilms Tumor, stage 2. Which basically means we 'think' we got it all out. Keep in mind this tumor was the size of and extra large grapefruit. So we start chemotherapy. Seventeen weeks alternating between two different drugs. Vincristine and actinomyicin-D. Luckily she goes for 10 weeks straight then has a period when she gets some weeks off.
We went for the first dose and she had the flu. We decided to give it to her anyway. We were lucky this time. No nausea or vomiting. She now has a standing appt for the next 9 weeks on Wednesdays at 10:30.
I sat her down and had the talk about the medicine and losing her hair. Of course her response was "It will grow back". Again with the superstar thing! So her and I made the decision to cut her hair. We went on the 23rd and had 11 inches cut off. We are going to donate it to Locks of Love. She looks so darn cute but I tell you, it's tough to get used to the difference.
Okay, so now you are up to date. I promise to not let it get that far behind again. It was a crazy week. I will also keep updates on chemo and how its going. And, as soon as I figure out how, I will be adding photos and a photo album. Thank you to everyone for all of your help, love and support. You have no idea how much it means to all of us! Talk to you soon, Heather

Sunday, March 21, 2004 10:15 PM CST

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