History

Wednesday, July 15, 2009 6:52 AM CDT

Today marks a very important day in our lives. Today (July 15) is the day in 2003 that we spent all day in the Hershey Oncology clinic for the very first time. We arrived at around 8 a.m. that morning because the evening before I found a mass in Jared’s abdomen. We literally sat in clinic all day having tests and scans done, finally in the early evening (we were the only ones left in clinic), we were told Jared had cancer ( a mass on his adrenal gland the size of a softball) and needed to be admitted to the hospital for more testing and to begin treatment. The rest of what happened is history……………

That is a day that will forever be drilled into my head like it was yesterday. No matter how many years pass, I will remember it forever.

I know I have said this a thousand times, but that is the day that changed our lives forever. It is amazing how your child being diagnosed with cancer changes your outlook on life and how your priorities change forever. You will never ever look at life in the same light again. Ask any parent who has been through what we have been through, it makes you a new person ……. forever. Now do not get me wrong, there are also other events that can occur in life and be just as life altering, this just happened to be the one for us.

I love you kiddos till the day after forever (I read this line somewhere recently but I forget where and liked it). Now do my kids still push my buttons and drive me crazy at times? Absolutely! And I would have it no other way. Normalcy, just like it is suppose to be. Yes, even when they are driving me crazy, I am so thankful to have them with me to drive me crazy. They mean the absolute world to me. I wouldn’t trade them in for anything……..

Family and friends, what more is there in life that is important?

One thing I can say about this whole ordeal is that the people I have met over the past 6 years have been amazing and have played a very important role in my life. Many I still remain in close contact with. I won’t name anyone for fear of leaving someone out, but you know who you are. There is a special bond that links us like no other friendship I have ever had. I thank you all for being there and being who you are. What a difference it makes to talk to someone who is or has been where you are. It is a fantastic support system.

So that being said we feel like one of the luckiest people alive. We knew going into this the odds were stacked against Jared and, so far, so good. I just pray Jared has another 100 years cancer free!!! Amen to that

Now as I celebrate Jared being here and healthy, I also must remember Michaela Mease who battled a courageous battle of Neuroblastoma and went to heaven on this very day in 2004. Michaela is 9 years old forever. She is gone from this earth but never forgotten. We miss you Michaela!! Remember Kim and Dave on this devastating day too. Hugs to you all.

Next I want to tell you about my fundraisers coming up for the National MS Society:

I am having a ham and cheese sandwich sale. The sandwiches are $3.00 each. Money and number of sandwiches needed are due by Thursday July 23, 2009. Sandwiches will be delivered on July 30 or 31.

The next fundraiser is a community night at Hoss’s on Tuesday, July 28 from the time they open till the time they close. In order to participate you need a ticket from me and when you pay you just give the waitress your ticket and they will donate 20% of your bill to the MS Society

In order to participate in the MS 150 bike ride each rider must raise $300.00. So Mike and I are in fundraise mode trying to raise $600.00 by August 21. If you are able to help sell, want to buy or just donate money to the cause, let me know.

Thank you for checking in on us.

Connie

Monday, June 8, 2009 5:49 PM CDT

Today is Jared’s 8th birthday. Happy birthday “little guy”. We are so blessed to be celebrating Jared’s 8th birthday today. With each passing day and year we are realize how blessed we are today and every day. My little boy is growing up. I hate to admit that, but I have to. Jared is having a birthday party next weekend with a few friends. May we celebrate 100 more of these days……….

School is out for the summer. Jared is going to be going into 3rd grade in the fall, and Kirsten is going onto 5th grade. They both had a wonderful year this year.

Jared’s teacher was phenomenal. If any of you know Mrs. Harris, you can contest to that statement. She was fantastic. Jared had Mrs. High for reading who was also fantastic. I do not know how we got so lucky to have 2 wonderful teachers. I hope our luck stays with us next year. Jared’s reading has improved so much this past year. It is amazing how well he does now compared to the beginning of the school year. Now our job is to keep it going during the summer. Oh I have to remember to do it. You know how it is. Summer begins with swimming and fun, fun , fun and you forget the work part. I am going to try to remember to read this summer.

Kirsten was named one of the most improved kids in her class, which she was. She had a wonderful year too. Her school year started out kind of rocky, but then once she started homework club and kicked her studying up a notch, she did fantastic. The last two marking periods she had all A’s and B’s. She brought her science grade up from a C the first two marking periods to an A the last one. Way to go Kirsten. She too had wonderful teachers.

The kids started summer playground this week. They will go there Monday – Thursday till the end of July. That will occupy some of their summer time and let them have fun with their friends. We are thinking about joining the community pool, but have not done it yet, maybe next week.

Kirsten’s soccer is over now. She has decided to join the summer swim team. I think she loves the sports but more than that she loves the socialization that goes with it. She is our social butterfly.

Mike is watching the kids this summer. We decided it would cost more to have him find a job and for us to pay a baby sitter, then for him to just stay home this summer and find a job in the fall. The kids enjoy him being home and he enjoys being home with them, especially when they listen to him. So hopefully the kids listen to him so they can have a fun summer.

We continue to fundraise for our two events coming up. The first one being the MS 150 which is the beginning of October. I am up to around 20-38 miles at a ride. Mike is a little behind that but once he gets into a routine, he will catch up. We are also still fundraising for the Leukemia and Lymphoma Society event in honor of Dr. Grupp. I will soon be getting the brochures we made up from the printer for the event. Once I get them, I am planning a trip to Philadelphia to drop them off at the Hospital to recruit more team members (either patients or staff) to join us to raise awareness and funding for LLS. I am hoping Dr. Grupp will be able to join us too. There is a direct link above the journal, where you may go and join us or donate to our cause. We would love more walkers for the walk too. His sister sent me an email stating he is now definitely in remission. That is fantastic news!!! GO, FIGHT, KICK CANCER BUTT, DR. GRUPP!!

Speaking of cancer, since my last post, Tanner Dohrman (the little boy we met from the Poconos during our last visit to CHOP) lost his battle with Neuroblastoma and he is now in heaven watching over us. Rest in peace Tanner. We think of you as you are no longer in pain. But you are missed by many.

Keep all the families fighting cancer and those who have lost loved ones in your prayers.

Connie

P.S. I am soon going to be doing a ham sandwich sale to raise money for the MS 150 bike ride. All the money goes to the Nation Multiple Sclerosis Society. I am riding in the MS 150 in honor of Stephanie Rhoads, she is the daughter of a girl I work with who has MS. If youwant to help by selling or buying sandwiches, let me know.

Sunday, May 3, 2009

Time sure does fly by fast. Spring is here, or almost here, and winter is actually gone now. Although some may argue that point when we go from 90 degree days to 50 degree days; I am ready for the 90 degree days to return. We are all getting anxious for summer to arrive. We have planned a family trip to Virginia Beach, and a mom and dad weekend get away to a New Jersey beach this summer. So now that vacations are planned, I am ready for them to happen.

It is hard to believe that the kids are down to only about 5 weeks of school yet, time sure flies. They are planning on doing summer play ground at the park again this year. We are planning on getting season passes to the community pool again so they can go to the pool and hang out with their friends. Because with me sleeping during the day it is hard for kids to have to be real quiet, so the pool passes will also get them away from the house. We are also looking for a camp to send Kirsten and a friend to for a week. That is something she wants to do and should be good for her.

The kids have been loving being able to go outside and play, ride bikes, ride their scooter and just run around the yard. It is amazing what those kids can do. They are now able to ride 5-6 miles on their bikes, so we can go for some cool bike rides together as a family.

Mike and I have been out riding too by ourselves because we are starting to train for our 150 bike ride (the MS 150) in October. You ride 75 miles two days in a row. It is from Philadelphia to the New Jersey beach. I am sure it will be an adventure of a life time. We have organized a team: our team name is “YES WE CAN” for the City to Shore ride. So if anyone wants to join us, go on the Multiple Sclerosis web site and feel free to join us, the more the merrier. So we are up to 20 – 30 miles at a time now. My goal is at least 100 miles/week right now and then I hope to keep increasing that amount. Once I get on my bike it is easy to just ride and rack up the miles; nothing but me, my bike, and the open road.

Speaking of the electric scooter, Jared had a fight with a mailbox on the scooter and the mailbox won!! Scared me a little bit, I must admit. He banged up his knee pretty good and definitely had some “road rash” on the entire left side of his body. He ended up at the ER thinking he may need stitches, but they did not feel stitches were necessary. His knee will have a pretty good scar, I am sure of that. We told him it will be a “battle scar” and “cool” to talk about when he is older. Thank goodness he had a helmet on and that is all he hurt.

Kirsten is into her soccer game full swing now. Her team is pretty good. It is exciting to watch them play and their record is pretty good too. Kirsten loves the soccer and the socialization with her friends. Girls will be girls!

Last weekend we took the kids hiking up tumbling run and it was so cool. The water level was high, which meant it was flowing like crazy that day. With the warm weather, the cool water was refreshing too. I am ready for hiking season to begin too.

The boys pretending to take a nap at the top of Tumbling Run

Last Monday we had our Community Night at Hoss’s to raise money for the Leukemia/Lymphoma Society in honor of Dr. Grupp and we ended up raising $232. That is not too bad for an event that did not take a lot of prep work on my part. Thank you to all of you who helped with the event either by handing out tickets to friends and family or attending the dinner yourself. We could not have done it without you.

Please keep Tanner Dohrman and his family in your prayers. Tanner is a little guy from the Poconos that we met at CHOP in March. Tanner has been battling relapsed Neuroblastoma and they were just told that there is nothing more they can do. They predict that Tanner has 4-6 weeks left here on earth. This is something no one wants to hear about their child. It is horrible. Tanner does not have a web page but there is a site on facebook called, “Prayers for Tanner Dohrman” So if you belong to facebook, stop by, join the group and send the family your thoughts and keep them in your prayer.

That being said, I am going to go now. Thank you for stopping by and checking in on us.

Connie

Monday, April 13, 2009 7:56 PM CDT

Where to begin? We have been keeping ourselves busy. The kids have had off school the past week. Tomorrow they go back to school. They (and us) had a fun vacation.

Last Friday we took the kids hiking at Rickett’s Glen (north of Bloomsburg, PA). It rained for the entire drive there (2 hours). Once we got there, we had a little drizzle then nothing but cloudy dry skies. This hike is so neat because it has almost 20 waterfalls on it. It is so cool. The water was roaring down the falls this time. It was a site to see. The kids haven’t been there since 2005 to hike. It is a great place to go if you live near bye and are looking for some free entertainment. It took us about 4 hours to hike the trail, but we did pack a lunch to and eat on the way up.

When we got home from our hike, we then colored Easter Eggs. Our hands will be dyed forever pink and blue.

Saturday we took the kids to Baltimore Inner Harbor to visit the aquarium. We arrived in Baltimore around 10:30, it rained the entire drive there and while we were there, right up to the time we left. When we left at 3:30 the sun was shining like a ball of fire. Man, oh man, why did it wait so long to get nice?? But you know what? Rain or no rain we had a fantastic day.

The kids are so happy today. They have been bugging "dad" for fish. Dad bought them both a 10 gallon aquarium for thier room and they bought fish today. Kirsten went with tropical fish (guppy, tetra and etc.), while Jared went with 2 Oscars. Now if you know anything about fish, Oscars eat goldfish. So now the thing is, will they eat the fish and will I witness the "meal time"? Jared is so funny about it. Tonight they were both so restless. They did not want to go to sleep, they just wanted to lay there and watch their fish.

They also got a motorized electic scooter today. They love it. THey took turns riding it around the yard, then they took turns hauling each other on it. They played together so well. It is so great to watch them play like that.

Just a reminder about the community night fundraiser at Hoss’s on Monday, April 27. I hope we can raise a decent amount of money for the Leukemia and Lymphoma Society. We shall see……………….

Take care and all those battling disease in your prayers and those who have lost loved ones.

Friday, April 3, 2009

My first fundraiser has been set for the Leukemia/Lymphoma society.

It will be on Monday, April 27 at the HOSS'S Steak and Seahouse in Carlisle, PA. The way it works is that you have to have a ticket voucher, go to Hoss's on that night, and they will donate 20 percent of your meal to our fundraiser.

So if you want to and are able to go, send me an e-mail (cstrayer@embarqmail.com) and I will send you out a ticket voucher to take along with you.

I am anxious to see how much money an easy fundrasier like this will bring in. I am hoping at least a few hundred. But that will only be possible with the help of my friends and family. I will thank you all right now. THANKS!!

I am still in the process of working on the brochures to place at the hospital to make people aware of our Light The Night walk.

I will update you as more updates come on fundraising.

For anyone in the local area, let me know if you can make it on April 27,so I can get the tickets out to you. I will also be passing some out.

Connie

Tuesday, March 31, 2009 6:50 AM CDT

This past weekend we had the privilege to attend a bowl-a-thon for The Four Diamond's fund. Roxanne did a wonderful job of organizing and planning the event. The event ended up raising over $17,000.00 WOW that is amazing. It was a lot of fun too!!

My mom went with the kids and me to the event. I think that is the first time "Grammy" was bowling in 15 or 16 years, and she did well. She even ended up with a few strikes. I asked her if she was sore today. And she said, no. So all went well.

One neat thing about the event was seeing all the Four Diamond families again. It is like one big happy family. It was nice seeing our social worker, Greg too.

I ended up speaking about Jared and how Four Diamond's helped us. I must admit, that I was nervous. I wasn't even thinking straight when I first started to talk. I was so nervous that I went to say in 2003 and instead I said, when Jared was 3 (he was 2)!! I then looked at my mom who was shaking her head "no" and I realized what I said, which of course was no big deal. The main point was sharing the information about Four Diamonds which I did.

It was funny because this weekend we mailed out picture thank you cards to all the medical staff who cared for Jared over the past 5 and half years in honor of him being 5 years cancer free. We put pictures of him from 2003 and now and included special from the heart messages on the inside for each individual person. They are meant to be sentimental and special for each person, because they each are special to us in a different way.

I am still working on my fundraiser for Dr. Grupp for the LLS. I will update you of local fundraising events coming up, as they are planned and the dates get closer.

Join our team to honor Dr. Grupp with this link:

Dr. Grupp: Our Hero and Our Children's Hero .

That being said, I am going to go now. I will upload pictures of bowling when I get a spare moment to do so. Until then take care.

Connie

Monday, March 23, 2009 2:59 PM CDT

I recently told you that our oncologist from Childrenï¿½s Hospital of Philadelphia, Dr. Grupp, is battling Lymphoma. When I heard this I knew I needed to do something to show my support. Dr. Grupp is an amazing gentleman and has been wonderful to deal with over the past 5 ï¿½ years during Jaredï¿½s treatment and follow up of Neuroblastoma. I have a lot of respect for him. He is well known and well respected in the Neuroblastoma world. Without his knowledge and expertise, we would not have the survival rate we do with Neuroblastoma. So that being said, I am happy to say that we now have everything in place to honor Dr. Grupp for all his hard work, compassion and support. After all he has done for all of us, it is time to show him how much we care about and appreciate him.

As I said recently, Dr. Grupp has a soft spot in his heart for the Leukemia and Lymphoma Society, since they are the ones who ï¿½launched his career in 1993 with a research grantï¿½. So I wanted to definitely choose to do something that benefited this charity. With the help of Amy Bucher, we have set up a fundraiser and walk in honor of Dr. Grupp.

I have gone on line and registered for the Light the Night walk, through the Leukemia and Lymphoma Society. This event takes place in Philadelphia on October 24, 2009. The event is a 1.7 mile walk with illuminated balloons to honor those we care about. The event begins at 4:30 with fun and activities, then the walk starting at 6:30 p.m.

Our team name is Dr. Grupp: Our Hero and Our Childrenï¿½s Hero

(COPY AND PASTE THIS LINK IN YOUR SEARCH ENGINE AND MAKE YOUR DONATION ON LINE EASILY)

This is a direct link to our teams fundraising page

http://pages.lightthenight.org/epa/Phi09/DrGruppOurfamilieshero EASILY)

So if you are available to walk on that date in Philadelphia, go the website above and join as a team member. The more people we can get to participate in this event the better it will be, and the more fun it will be.

If you are unable to participate in the event, but you would like to make a donation in honor of Dr. Grupp, just pick a team member and donate under their name. All donations go toward our teamï¿½s total amount raised. I set our team goal at $4000.00. I am not sure if this goal is realistic or not, it all depends on how many people join our cause. I hope we can raise at least that much money. Any help you can give toward our goal would be appreciated, whether it is $5, $10, $20, $50 or whatever is within your budget. No donation is too small, everything adds up to something.

So that being said, come join our cause and help us honor a man who gives up his life to find a cure for cancer, all awhile, fighting it himself. He is amazing. Thank you for your support whether it is by joining us or sponsoring us.

Also there is a fundraiser "team in training" that Dr. Grupp's sister is doing in honor of him. Here is the link (COPY AND PASTE THIS LINK INTO YOUR SEARACH ENGINE)

http://pages.teamintraining.org/msc/memptri09/kjohnstw0i she could use your support too.

Thank you for taking the time to read this and join us or help in any way that you can.

Connie

Wednesday, March 18, 2009

I have a plan and anyone who wants in, especially those who were treated at CHOP or know Dr. Grupp, may be interested and are welcome to participate.

Last week when we went to CHOP for Jared’s scans, we found out that Dr. Grupp (Our oncologist) is battling Lymphoma. From the sound of things his treatment is going well. He has a few chemotherapy treatments left to go and then his treatment is completed. He looks great! I actually spoke with him today and he told me he is “in remission”. That is news to celebrate about. Continue to keep him in your prayers for complete and total recovery.

If it were not for Jared and the kid’s matter of fact questions, we may not have known about the lymphoma. Sure when we first saw Dr. Grupp I knew he looked different, all his hair was gone. OK, so I immediately think 3 scenarios : 1) he shaved his head for St.Baldwick’s 2) he just decided to shave his head for no reason 3) he has some form of cancer and is in treatment So yes, I thought this but I would never ask. But of course Jared would. “Dr. Grupp what happened to your hair?” he then proceeded to tell him he had cancer, like he had had. And that is where the story began…….

We think the world of Dr. Grupp and everything that he has done for us personally and the Neuroblastoma world in general. He is big into Neuroblastoma research. Without people like him we would not have the survival rate that we do for Neuroblastoma. We were lucky to have been under his care. He is an awesome gentleman. What is even more amazing is that even as he battles lymphoma himself he continues to work and fight for a cure for others. How much more amazing can someone be?

Honestly I think (as do many others) that folks who do what he does (find a cure for cancer) should be bypassed, cancer should not touch them. Unfortunately, that is out of our control.

I feel the need to do something to give back to him for all he has done for us. I have spoken to him and told him that I plan on doing some type of fundraiser in his honor. I suggested the Leukemia and Lymphoma Society and he is thrilled about that. He told me that “in 1992 (hope the year is right) that it was the Leukemia and Lymphoma Society that launched his career” by giving him a grant for research. So that organization means a lot to him. So that is one detail decided on, who will the funds we donated to.

I have been searching the website to see what they have to offer for events and fundraising and I did see a Light the Night Walk that I would like to do. They have them in multiple areas. The one I was looking at was in Philadelphia. I am thinking about forming a team and doing it. It is on October 24, 2009. Need to find out more about it yet though. I am also trying to figure out a fundraiser to do to raise money and then donate it in his honor. Visit the website or pass any ideas my way, I am open for suggestions.

Also he told me his sister was doing a walk in honor of him and he would forward me the e-mail. So when I get it I will pass that information along too. I am excited about this.

Let’s face it, he has done so much for all of us, it is the least we can do for him, a man who gives up his time to find a cure for Neuroblastoma. You got to love him. He is an open person and is completely OK with me recruiting other families and people to help raise money for the Leukemia and Lymphoma Society in his honor. I spoke with him today to get his permission to fundraise and pass on the information about his battle prior to posting this information, and he was OK with it all. God bless him.

Anyone who wants to help, organize or has an idea for a fundraiser, just shoot me an e-mail or leave it in the guest book. My e-mail address is cstrayer@embarqmail.com

Saturday, March 14, 2009 8:19 PM CDT

Here is a long awaited update. Our scan week is finally over and we are oh so thankful to be disease free. Jared is my hero. He is a winner. Why God chose to spare him, is something I do not know. I know we feel so blessed to have a child who remains NED. I know way too many parents who lost their child. That being said, why are we so blessed to have Jared here and healthy? I do not know the answer to that question. It is a puzzling question. Actually it is one I hate to even contemplate, but I do.

Then comes the question, why do people who help others in finding a cure for cancer, get cancer. Should they not be overlooked and bypassed? Don’t they deserve a free ride and a life free of cancer? I think they do. Then it makes me think, does ones career and the things they do to find a cure for cancer, put them at risk to developing cancer? Was their cancer caused trying to find a cure to help others? That doesn’t even seem fair!!! It breaks my heart to think about this. Some may wonder why this bothers me so, but it does. It is something I cannot explain …………. It is just tearing me apart to think about it. I ask WHY? Why does this happen? I will never know the answer to this question.

Cancer…………………….
I HATE IT!!!
I HATE WHAT IT DOES TO PEOPLE!!!
I HATE WHAT IT TAKES FROM PEOPLE!!!

We are now done with our annual scans. Jared is actually over 5 years out form diagnosis. It was 5 years and 8 months ago that Jared was diagnosed with cancer. We now will have annual follow-ups with the long term effect clinic and also see Dr. Grupp at those clinic appointments. We are blessed to be so lucky.

I know some of you know Dr. Grupp, and all I can say is he is one amazing gentleman. He is a wonderful physician and person in general.

While we were at CHOP we met Brandon Koontz and his family again. He was there to start MIBG treatment. He looked great. We first met Brandon last year at CHOP. It was nice to see you all again.

We also met a new NB boy. His name was Tanner and his mom was Caroline. They were from East Strasberg, PA (near the Poconos). He was 6 years old and being treated for relapsed NB. He relapsed 1 month after treatment was completed. His primary treatment was at Giesinger Hospital. It was so nice to meet you. They were not from the NB list, nor does he have a caring bridge page. For those of you on Facebook, I think there is a group there called, Prayers for Tanner Dohrman. I have to investigate that yet. Say a prayer for both of these kiddos.

Today we took the kids hiking up White Rock to center point knob. They were so funny, it has been to long since we hiked, and the whining proved it!! We did make it though.

Monday Kirsten is getting her braces on, she is so excited. I hope her enthusiasm continues after it happens. I will keep my fingers crossed on that one. The main thing is, what color to get? Green or blue? She is so funny. I hope they are not too uncomfortable, because she is so looking forward to it. Guess it is cool??? Who knows?

Anyways, that is about it for now. God bless and take care.

Connie

Wednesday, March 11, 2009 8:25 PM CDT

Tonight at 6:30 p.m., Dr. Grupp called and told us the news we longed to hear, "the scans look great!" What more could or would we ask for? Not a thing! We are truly blessed.

Thank you again for your continued support and prayers. We could not have made it through the past 5 years and 8 months without you all. We are also blessed to have all of you supporting us.

I will update more info on our trip later this week when I have more time. Off to work tonight.

Connie

Tuesday, March 10, 2009 5:52 PM CDT

Jared's CT scan came out "CLEAR" Praise God on that news.

We have our last test tomorrow morning at 10 (the MIBG scan). I am expecting nothing other than a clear scan but I will be thankful to hear these words from Dr. Grupp tomorrow afternoon.

Speaking of Dr. Grupp, I always thought he was an amazing gentleman, and now I know just how amazing he really is (that is a story for another day). Just say a prayer for him too!

Thank you all for your kind words and continued prayers. It is oh so helpful, to have you all on our side cheering for us. This is always a stressful time for us. Will update when we hear tomorrow.

Our friends from THON are due to arrive in about 30 minutes. So better get going for now.

Sunday, March 8, 2009 8:31 AM CDT

Tomorrow (March 9) after the kids get off school, we leave and go to Philadelphia (CHOP) for Jared’s annual scans. Our hopes are to get a room at the Ronald McDonald house on Monday night and then we don’t have to get up as early on Tuesday to travel there. Plus the kids love staying at the Ronald McDonald house, it is the like a mini vacation.

Here is our schedule:

Tuesday:
9:00 clinic for vitals/paperwork pick up
9:30 registration/start prep for CT scan
11:00 CT scan
1:00 EKG/Echocardiogram
2:00 MIBG injection
3:00 Go to clinic for appointment with Dr. Grupp

Then we hope to link up with our THON friends from LIFE House. We love when you all visit us at the Ronald McDonald house. It will be great to see you all again, and see Erin, who was unable to make it to THON. Keep us posted about if you can come or not.

Wednesday:

10:00 MIBG scan

Then we are free to do what we want to do. Not sure what we are going to do yet, but plan on doing something fun before we leave Philadelphia that last day.

This should be our “LAST” scans ever. Jared is over five years out from diagnosis. So assuming all goes well, this will be it!!! Say a prayer for Jared and us. I will update when I know anything.

Above is a picture of Jared at the Northern Qualifiers where he came in 4th place and received a metal. He could have advanced onto the Finals yesterday but when he woke up; he did not feel well and so decided not to go. So wrestling is over now.

Have a great week and think of Jared in a positive way.

Connie

Monday, February 23, 2009 10:13 AM CST

Where do I start? We had a fantastic weekend. THON is great.

We left here at 10 Friday morning and arrived in State College around noon. We checked into the hotel and went swimming. We then were able to link up with Michi (our dancer from last year) and hang out for a while. We took the kids to the game room and just had fun.

We left and headed over to THON around 5 or so. That is when the fun began. As soon as you walk into the Bryce Jordon Center you feel all the energy and excitement. It is indescribable; like nothing one has ever experienced in their life. You really have to see and feel it to believe it. We linked up with our dancers (Joel and Andrew) and gave them our encouraging thoughts. Jared’s favorite pass time at THON is squirt guns. He just runs around and soaks everyone and the college kids love it and join right in. I am not sure who has more fun and who gets the wettest, Jared or the kids? Kirsten loves to hang out and dance and sing. The kids all love it. We hung out and just had fun till around midnight, and then we went back to the hotel for some sleep.

It is hard to drag the kids away. They have so much fun that they do not want to leave to go sleep. And someday when they are older, that is an option. But right now I know that if I do not get them back for some sleep I will pay for it later. So being the smart mommy that I am, having the intelligence to think ahead, back to the room we must go no matter how much resistance I get.

Saturday morning when we woke up we met Katie and Nick and went swimming at the hotel. Katie was our dancer the very first year we went to THON back in 2005. The kids had fun tormenting them, dunking each other and just carrying on. After that it was off to breakfast with our LIFE house friends (Michi (dancer 2008), Liz (dancer 2007), Katie (dancer 2005), Nick, Liz’s friend (I am drawing a blank for name at the moment) and us). It is so nice to have those reunions.

After breakfast, Mike arrived and went over to THON. That afternoon we went on Jared’s wish which was to meet the football team. We had a tour of the football facility and had a lot of fun. Kirsten had number 17 (Daryll Clark) sign her jersey. It was cool.

Back to THON we went where Kirsten had the opportunity to go with a Moral caption and see what their job at THON was. She loves that part of THON. Saturday was a very busy day. That evening we did our Variety show which was us singing the Taylor Swift song “Our Song”. We had plenty of help. We thank all who sang with us (Reeni (dancer from 2008), Emily, Katie, Liz, Jason). It went really well and it was fun. When we were waiting to go on stage the kids were getting nervous and I actually thought they were going to back out. But they did not and all went well. It was actually fun. I wish I had brought the camcorder and had someone tape it for us. So, if anyone knows anyone who has it, let me know. I would love to have a copy of it.

Sylvia and Michele, it was nice to meet you again. Even though Jared “doesn’t know you”. I will have to post a pic of you guys on your face book page sometime soon. I love seeing you and your family Sylvia; in fact, I look forward to it every THON. You are the greatest.

Saturday night is the pep rally and all the organizations do a talent like show. It is always so funny to watch. A lot of energy there. When that was over (around 12 a.m.) we headed back to sleep some. Sunday morning we never woke up till 9. WOW that was a good sleep. We packed and headed to THON again for the final day. Joel and Andrew were hanging in there well. They looked somewhat tired but still able to be full of energy.

Sunday is the emotional day. They have family hour where families speak, tell their stories and thank the college kids for all they do. They the families all go across the stage, one at a time as their name is announced. After that they show a celebration of life video that is pictures of all the kids who lost their battle over the past year. Just anticipating this is emotional. This year was especially emotional for us. All the kids break my heart even I do not personally know them. But this year I knew Brandon Loose was going to be in the video and the thought of it was especially emotional. As we stood there with Jamie (Brandon’s mom) and her other friends from Hershey it was so hard to hold my composure. Even now as I type this I have to hold back the tears. There was not a dry eye among us. It is so emotional; I cannot even put into words how you feel at that moment. I am just glad I could be there for Jamie and with the other cancer moms and dads. Jamie I am so proud of you that you were able and come and participate. You are awesome!!

During family hour Kirsten stayed on the floor with some people from our organization. She knows the video is of kids who have passed away and she does not like to go up on the stage and watch it. The past two years she has avoided it and that is OK. Jared never realized that the video was of kids who passed on ……….. Until this year, when he saw all the people crying and wanted to know why and I told him they are crying because the children on the video aren’t here anymore, they went to heaven. Then I pointed out Brandon to him on the video. I think he got it. He was being a tad bit grumpy when we were going up on stage and by the end he was leaning on me and OK with me holding his hand. The feeling as you watch that video is heart wrenching. But it is the cold hard facts. Cancer takes people we love and care about. That is why we need to stop cancer. It also makes you want to take your kids and hug them like there is no tomorrow and be so thankful they are here. But boy do I wish there was no such thing as the celebration of life video. We want all kids to be here and alive………….

By the time the video is over and I am done consoling myself, Jamie and friends I then go back and give our dancers a big hug and thank them for what they are doing for Four Diamonds. What PSU does means the world to us cancer families and we thank you all from the bottom of our hearts.

As THON draws to an end the excitement grows! Everyone is excited to see the total earned……………………. The total is 7.49 million!! WOW THAT IS AMAZING!!!!!

I ended up meeting a new NB family from Hershey. Actually they are 18 months off treatment but it was nice to meet them and allow them to meet us and see a child 5 years NED!!! They needed that.

So that is our THON experience. We thank you all for all you do. Now as we get back into normal life, we patiently wait for THON 2010.

Monday, February 23, 2009 10:13 AM CST

Thursday, February 19, 2009

Tonight Kirsten and I went to see the musical "Ruthless", it was fantastic. We loved it. Tomorrow morning after a 9 a.m. appointment at the orthodonist for Kirsten, we are off to State College for the weekend. GO PSU!!! Can't wait to get there. Kids are skipping school tomorrow to leave in the morning. We will have a great weekend.

Saturday, February 14, 2009

Happy Valentine’s Day to everyone. Hope you had the opportunity to do something sweet with or for your valentine today. Mike and I went out to dinner tonight, just the two of us. It was nice to have dinner with just the two of us and some quality adult only time. That doesn't happen very often. We love our kids but as any parent can tell you, it is nice to have the quality alone time too sometimes. So we had date night and now here we are with me on the computer and Mike playing the tank game on Wii beside me :). Oh well, that is good enough. I love ya honey.

Yesterday we went to Kirsten’s school for lunch. It was funny, she said, “do you see that boy over there (pointing to a boy)?” and then she proceeded to tell us about a valentine he sent her. I said, well some valentines are “mushy” and Kirsten told me, “No mom he wrote it on the back” So when she came home from school I looked at it and it said, “Kirsten, I love you and will love you forever and ever” Ok now I am thinking do I need to talk to this little guy or what? Guess we will just ignore it and hope it goes away (fingers crossed). Trying to remember if I was thinking about boys in fourth grade? My mom says yes, I think “oh no”. Guess we will monitor this……………..

Kirsten had her last swim meet today (Divisionals). She did well but did not do well enough to make All Stars, which is OK. She swam hard this season and we are very proud of her for all her hard work. I can’t wait for next year to see what new levels she will go to.

Kirsten is now free for a few weeks till soccer starts. She is on a new team this spring, so that is a good thing too.

Jared went to his novice wrestling tournament and made out very well. There were only 3 kids in his weight class bracket. The first kid Jared beat (6 – 4). The second kid Jared pinned in about 30 seconds. It was awesome to watch. He ended up with a first place trophy, to which he was so proud about. Look at the picture above to see the pride in his face. It was awesome.

Thank you all who mailed out mail to our dancers. I know they will appreciate it. Have a great week.

Friday, February 13, 2009

HAPPY 10TH BIRTHDAY KIRSTEN!!!!!

Thursday, February 12, 2009

Kirsten is soon to be a “double digit midget” as she says. A big 10 years old, how did that happen? She had her birthday party last weekend with 3 friends. We went to build a bear, out for dinner, the sports emporium and home to play Wii till God knows when. I know it was around 3 a.m when they wanted me to help them find their movie to put in. They tell me they did not watch the entire movie, but instead fell asleep right after it started.

Those girls were funny. I felt like I was at a concert in the car. Yes, we had the music as loud as it would go and the girls were singing as loud as they could, ok, ok, I was singing too but don’t tell the girls. The favorite song was that one that goes, “tell me, tell me, tell me something I don’t know, something I don’t’ know” (forget the name) and “Love Story” by Taylor Swift. I must admit the girls were fantastic. They all pretty much got along the entire time, which was nice. I would do that again any day. Tomorrow for her birthday, Mike and I are going into school to have lunch with her. Then after that it is off to Jared’s school for his Valentine’s Day party. Will be a busy day.

Jared had a special day with Mike last weekend. Mike and Jared went to the wrestling match in the morning Jared won 2 matches and lost one) and then went shopping and to the sports emporium (where we met them at 9 p.m.). It was a busy weekend for all.

Friday night (Kirsten’s birthday, February 13) Kirsten is actually going to a friend’s birthday party. What better way to celebrate your birthday then with your friend who shares a close birthday (2/12). She unfortunately cannot stay the night though due to a swim meet the next day. It was actually her idea to not spend the night but instead come home and gets a good night’s sleep for her final meet Saturday morning. She loves swimming and loves to go to practice and meets. She is very goal oriented in improving her swimming times. It is amazing to see her grow up before our eyes.

This Saturday Jared has a novice tournament at Cumberland Valley and Kirsten has Divisional swim meet at Big Spring. If she qualifies at divisional she will then go on to All Stars on Sunday. All Stars is her goal. If she makes it, that is great and if not, no big deal. It is a goal of hers, so wish her luck.

One week till THON. If you want to and haven’t yet, get your dancer mail ready and get in the mail, it needs to arrive by February 16. We are putting ours in the mail tomorrow. We are getting anxious for THON. See ya soon LIFE house.

Joel William Warfel # 307B
c/o THON Mail Call
210 HUB
University Park, Pa 16802

Andrew Clark Serino # 307A
c/o THON Mail Call
210 HUB
University Park, Pa 16802

I will keep you updated.

Connie

Thursday, February 5, 2009 7:25 PM CST

I received FANTASTIC news today. LIFE house has two dancers. Our dancers this year are Joel and Andrew. We are so glad to we have dancers, and we are so glad it is Joel and Andrew. They are both great and we know them both well. YAHOO………………..

Now I am going to ask you all a favor. We need to get THON mail out ASAP for our dancers. Here is the address to send it to

Joel William Warfel # 307B
c/o THON Mail Call
210 HUB
University Park, Pa 16802

Andrew Clark Serino # 307A
c/o THON Mail Call
210 HUB
University Park, Pa 16802

The mail that we send is giving to the dances during THON to provide them with encouragement and thank them for a job well done. THON is a 46 hour "stay on your feet" deal. It is hard for the dances to do, but they choose to give up their time to do this to raise money for the kids (FTK). Four Diamond kids that is. THON mail must be received by February 16 so get your letters and pictures ready and put them in the mail box ASAP.

If you are interested in sending to more dancers, just go to the THON website and look up dances names and numbers and send it to any one you wish. We send mail to our dancers, plus randomly pick dancers to send mail too. To do so, go to www.thon.org and then click on STUDENTS, and then click on DATES AND EVENTS. Then click on the first line to see the list of dancers. There are 699 dancers, so take your pick and make a dancers day.

THON is only about 2 weeks away now. It will be here before we know it.

Kirsten is getting ready to celebrate her birthday. Her birthday is not until the 13th, but with swim meets and THON coming up we decided to celebrate her birthday this weekend with her friends. She is having a birthday party this Saturday consisting of going to build a bear, for pizza and home to hang out, play Wii and just have fun. It should be a great weekend. We downsized big time this year. It was hard for her but we decided this year a smaller party was the theme, with 3 close friends to come over.

Kirsten already received her birthday present from us; she wanted a Nintendo DS so that was what we bought her.

Kirsten has had a wonderful swim season. She has improved her time so much since the beginning of the season. She is especially awesome in the breast stroke. She has this week off then next weekend is Divisionals already.

Jared has been having fun wrestling. Last week he had 3 matches. One win due to a pin, one loss due to being pinned and one win due to points. He was happy with that. Wrestling is fun to watch. He has about 2 more matches then on to qualifiers. So we shall see how it goes.

Mike is no longer in school. He has decided it is not for him. He is now in search of a job. The job market is not flooded with jobs right now with the unemployment rate so high. But hopefully he can find a job that fits into our family life and works for us. Keeping my fingers crossed. He has applied at Hemp Bros (construction) which does not start up till spring, so that hopefully will come through for him. Say a prayer that all works out and he finds a job with the economy the way it is.

I am doing well, working and keeping busy. Work has been crazy lately, which is tis’ the season. People calling off due to illness and lots of residents getting sick too. I am ready for a nice vacation some place warm with nothing to do but relax, lay on the beach and get a sun tan, all awhile, drinking mixed drinks. Oh crap, I have to wake up that isn’t going to happen soon. Just a daydream……………….. Instead here I am in Pennsylvania, where it is too cold for a swim suit, no beach to lie on and wine on the weekends. I guess that is the closest I will get to my dream for now. It is good enough for now …………………….

Please keep a little girl named Adriana in your prayers. She has NB and just recently had a scan that showed relapse. She is having surgery today, so you may visit her caring bridge page and leave a message. The link is http://www.caringbridge.org/visit/adrianagunty She just had surgery to remove a tumor and had a bone marrow biopsy done. Say a prayer that they were able to remove the entire tumor. When you finish your initial battle of fighting NB you pray your child never has to do that again. So this is something no parent wants to do. So give Adriana’s family our support.

Thank you for your continued support and please take a moment to mail encouragement to our dancers for THON. I thank you in advance.
Connie

Sunday, January 25, 2009

Canning went well although it was really COLD outside yesterday.

Our friends from Penn State arrived around 9p.m. Friday night and stayed the night. The kids wanted to have a big sleep over with the Penn State “kids “ downstairs, so we left them. So around 11 p.m. Mike and I went to bed and around midnight, I heard my kids being loud and I mean l-o-u-d. Here I am thinking, oh no my kids are acting crazy and not sleeping and keeping everyone else up. So I get up and venture downstairs to find a pillow fight going on. And guess what? It was not my kids, but instead it was the college “kids”. So now I wonder, do I set them straight (just kidding) or let them have their fun? I decide to let them have their fun. So who knows what time everyone went to bed Friday night……… I honestly think I passed out after that. But the kids seemed to have fun, so time well spent.

Two guys we knew from before came, Joel and Jamin. Then 3 new girls named Emily, Jenny and Rebeka (excuse the spelling if it is wrong). I found their story to be so interesting. Our group at Penn State is Life house. Apparently Life house has different dorms around the campus and somehow these kids all got linked up to come to our house this weekend but never met before Friday night when they got in a car to drive 2 hours to our house. Joel and Jamin know each other and Emily and Jenny are roommates and Rebeka knows Reeni who we know from before, but none of them have met the other prior to last night, it is interesting to think about. Anyways, they were a great group of kids that ranged in age from 18 – 21. Yea yea, I must be showing my real age and getting old if I am calling a 21 year old person a “kid”.

Saturday morning Jared had a wrestling match at 9. Let’s just say that he was a little tired and a little grumpy (from staying up late). He went out for his first match and was pinned. Wait, did I tell you he was grumpy yesterday morning? I mean really really grumpy? I mean really really really grumpy? Well if I did not tell you, he was!! Kirsten and I went and watched his first match then joined our canners in town.

We started out canning around 10 at the square in Carlisle, but the first time we were out Kirsten could only tolerate it about 30 minutes and then her hands were too cold to continue. So we left and went to the wrestling match for a while and warmed up. After the wrestling match Kirsten and I joined the group at Panera bread for lunch and decided what to do about our new dilemma.

Apparently, our location to can was approved by the police department in Carlisle but was never entered into the THON website. The reason PSU needs to get it approved is so not more than one organization is at one site. Therefore, another group had also planned to can there, and apparently they did get the site approved on the website. They kicked LIFE house off “their site”. And then we did not know where to go. There were canners at like every major intersection in Carlisle. It was like the town was too small for everyone.

Couldn’t they share a site? It all goes to the same cause? No that is apparently not an option. You see each group has to raise a certain amount of money to get dancers at THON. So it is very competitive. Sharing is not an option. It is either mine or yours. So the rest of the afternoon we ended up moving around from site to site and then moving towns. We went to Mt. Holly and canned for a while then homeward bound we were.

It was OK though. They had fun. We ended up raising about $ 550.00 this is good, but not enough for LIFE house to be getting a dancer. That is the sad part of that. It is nice to be sponsored by an organization that has a dancer that you know on the dance floor at THON. But oh well it will be OK. I personally think that any organization that is sponsored by a Four Diamond’s family should be guaranteed a dancer. We have known these guys/gals for 5 years. The people change and each year we meet new folks but once we know them, we know them for life. So that is my theory, but I do not know who to complain to about it. Any ideas let me know! Jamie I know you are planning one plan of action. I am keeping my fingers crossed. Go get them for us.

Jared never made it out canning this year. He was in a mood and upset about his wrestling match losses today (2 pins). And he decided to go to Lunch with Grammy K instead. He also had a cough and did not need to be out in the cold so that actually worked out Great. Thank you, mom!

So this weekend was interesting. I felt bad for the canners that they lost their spot mid day, because had they been able to stay there, they would have raised the money they needed, $ 1000.00. But no sense worrying about what might have been, maybe next year.

I told the kids that whether they have actual dancers or not from LIFE house, the dance-a-thon will be fantastic. ALL of the college kids love all the kids they meet at THON. And that is so true. Not all organizations have a Four Diamond family, so we will link with tons of kids. No big deal.

So that being said, keep warm and have a great upcoming week.

Thursday, January 22, 2009 3:34 PM CST

Yesterday was my mom's birthday, Happy birthday Mom!!!

Tuesday, January 20, 2009

Well this weekend is really our “canning” weekend with LIFE house from State College. Our friends are arriving Friday night and we will then go canning on Saturday. We will be at the square in Carlisle and at the intersection of Hanover and Noble Blvd. We were unable to get the Wal-Mart store; it was already taken by another Penn State organization. Oh well, no big deal. It is all the same cause.

We are excited to see who is coming. It is suppose to be some new people from LIFE house coming along with some of the ones we already know. We cannot wait. Now all we have to do is pray for WARM weather for Saturday. I am going to keep my fingers crossed on that one.

Mike was ill all last week with this resp. infection and then last weekend it started to hit me. Jared has a little bit of a cough, but so far Kirsten is staying healthy as a horse. GO Kirsten go. Hope she avoids it. So I hope we can all stay healthy enough to can this weekend.

Jared has his only home wrestling match this weekend so him and Mike will attend that while Kirsten and I can with Penn State. Kirsten has an away swim meet this weekend, but has decided to skip the meet, and go with Penn State to raise money for families battling cancer instead of swim. That has been a tough decision for her, believe me, she loves to swim.

So if you are out and about this weekend, look for us, and if you see us, help us raise money for Four Diamond’s Fund.

Thank you for your continued support.

Connie

Saturday, January 17, 2009

I was thinking about his whole wrestling experience and had to share this with you.

Here is our day today:

Out of bed today at 5:20 am
Wanted to leave by 6:30, but never got on the road till 6:45 a.m.
Arrived at our destination by 7:30
Match was to start at 8, started around 8:30
Jared had 2 matches (each match has 3, one minute periods)
Arrived back home around 2:45 p.m.

So here is an analysis of our time:
1 hour and 30 minutes spent in the car (45 minutes both ways)
6 minutes spent wrestling
The other 6 hours and 24 minutes spent sitting in the bleachers waiting for our turn to wrestle!!!

What do we do during that time?
Play DS
Listen to music
talk to fellow parents
watch others wrestle
eat food

But Jared does enjoy wrestling, so I guess it was a day well spent.

Now on the lighter side, when we got up and left this morning it was 1 degree outside, yes that is ONE degree, it was COLD!!!!!

Connie

Wednesday, January 14, 2009

Opps, found out today the dates were mixed up and the canning will be next weekend (January 24) not this weekend. SO look for us next weekend in Carlisle and help us fight childhood cancer.

Tuesday, January 13, 2009

We just found out today for sure that our Penn State organization, LIFE house, is coming to our house this weekend to “can” again and raise money for the Four Diamond’s Fund at Hershey Med Center. We are excited to see them come. We do not exactly know how many or who are coming yet. We cannot wait to find out. So it looks like a big sleepover this weekend at our house.

We will be “canning” outside of Wal-Mart in Carlisle and also at the square. If you see kids with big signs asking for your help to fight childhood cancer and see them holding big cans…………….. That is probably us. Give them some money and help a family diagnosed with cancer at Hershey Med Center.

I am hoping to be able to assist the Penn State folks on Saturday. We are lucky that Kirsten does not have a swim meet this weekend, but Jared does have a wrestling match at Shippensburg. So I am debating whether to go to the wrestling match and hopefully be able to assist with canning after lunch or to skip the meet and “can”. Tough choice. I will probably go to the wrestling match, and join our Penn State friends later in the day. The only thing is wrestling can last for hours, literally. I shall have to wait and see.

So if you see Penn State kids standing in the freezing cold with cans in their hands give a donation and help out. Thank you.

Connie

Monday, January 12, 2009

Yesterday we went to the farm show. We were there almost 4 hours and only saw about half of the animals. We never saw the horses, bunny or chickens. We did see the cows, lambs, sheeps and pigs.

My favorite was the mommy pig with the 10 piglets, it was way too cute.

The kids had a blast sliding on the slide there too. I am not sure waht was more fun, the slide or seeing the animals.

No matter what, we all had fun. We went with some friends of ours who have two little girls. Jared was odd man out but no matter to him.

Our goal this week is to keep warm. It is suppose to be very cold. You keep warm too.

Saturday, January 10, 2009 (afternoon)

Jared getting his arm raised after a wrestling PIN on the mat. Way to go Buddy boy.

Saturday January 10, 2009 (early A.M.)

So the weather man is saying we are to get 3-6 inches of snow today, starting this morning at 4 a.m.

YAHOO ....................

I am keeping my fingers crossed for snow. I want to sled and build a snowman. Keep your fingers crossed too.

The school district already cancelled Kirsten's swim meet this morning due to the threat of snow.

Jared's wrestling match is still on, so far.

Come on Old man winter and do your thing, bring us snow!

Sunday, January 4, 2009 8:52 PM CST

Happy 2009 to all!

May 2009 bring happiness and good health for all.

We celebrated the ringing in of the New Year early on December 31. I had to go to work at 11pm, so we set off some fireworks at 10:30 before I left for work. It was really windy that night, so setting off fireworks was a challenge.

So I saw the New Year in with my co-workers at work, and Mike and the kids were at home. We did call and wish each other a Happy New year before the kids snuggled in for bed that night. That is the one downfall to working the night shift. But you have to do what you have to do ……

Actually I ended up having to stay over at work the next morning, until 11 a.m., due to a call off. So we never made it up to my mom’s for dinner. We had our pork and sauerkraut on January 2nd instead. No big deal.

Well actually I did not have dinner then either because I ended up getting this GI thing going around and pretty much slept Friday and Saturday away. When I was sleeping I did not feel ill. So sleep was the answer. Today I feel better.

I think Jared is finally over this bug too. He is eating us out of house and home today. Must be making up for not eating much the past week. GO Jared …………..

Kirsten and dad have escaped the “sickies” so far, much luck to them.

Kirsten had a friend over all weekend. They just played Wii and hung out. Jared finally was feeling better and had the chance to stay over at a friend’s house. Jared’s play date had to be cancelled a few times due to him not feeling well, so it was nice it finally went through.

Mike has turned the new leaf. He started biking this weekend. He throws his warm gear on and goes out for a 5-7 mile ride. Good for him. This is my turn around week too. The New Year is here and resolutions are in high gear.

Well that is all for now. Have a great 2009.

(I chose this background in hopes of some snow in our future. We want to sled an build a snowman)

Connie

p.s. thank you all for your support during my "paranoid phase" last week. Once in a while that happens and I need to get myself back on track. Your support is appreciated.

Wednesday, December 31, 2008

I do not know what is up with this, but for some reason lately I have not been myself. I have been worrying excessively. Poor Jared has not been himself. He has had this “bug” that is going around. The not feeling well and diarrhea, I can handle. The belly pain freaks me out though. I mean REALLY freaks me out. I actually have to tell myself to relax, all is well, and I am getting myself worked up for no reason.

Tuesday night I went to work and about 12 a.m. my cell phone rings and it is Mike telling me that Jared still has diarrhea and is complaining of belly pain. Immediately I go into “freak-out” zone. I start thinking of relapse and belly pain and reliving the diagnosis days. Even though I know he complained of belly pain yesterday and I know I felt his belly and everything felt “normal”. OK , so that is my initial thought, then I have to bring myself back to reality ………………………………Jared doesn’t feel well, he has diarrhea, people where I work have diarrhea too, it is going around. I have to bring myself back to reality and stop the “crazy” thinking. I tell myself this and tell Mike that it is probably gas pains and suggest he give him Imodium to stop the diarrhea. Now this all sounds good and is probably the facts but I must admit that in my mind I am saying one thing but “freaking out” about the, what if ………………

I tell you, poor Jared cannot even get a common illness without me worrying about him. I constantly worry about a relapse. Well, I shouldn’t really say that I constantly worry about relapse, but I do think about it. Not daily, but pretty often. I know how silly that sounds. But damn this cancer, it does it to you. It allows you go on with life, but worry about every little change. I hate it! I hate being that way, but sometimes I can’t help myself. There is no way around this thinking, or if there is I haven’t found it yet.

Here we are 5 years out from diagnosis and I still “freak’. What is the cure? I do not know. Time heals all wounds, but nothing can take the fear of losing your child completely away from you. And if any of you parents who have children NED from NB can do it, share your secret with me. I need the answer.

I do not know if it is everything that is going on, like Christmas, Brandon Loose being an angel not too long ago and knowing how much Jamie and Craig are missing him this holiday season or knowing that Michaela had a birthday this week and should be 13 but instead is 9 forever. Or is it Sam Philips having a questionable scan this week and his parent s having to worry about relapse? Now Sam is fine and still NED. But it brought back all the memories when Jared had questionable scans and we thought he relapsed.

We are blessed and Jared is NED for 5 years now, but what is the magic number to make me comfortable? I do not know the answer. I thought it was 5 years, but obviously that didn’t work, I am still the same.

Well I know over all we are doing well. Please keep all those battling NB in your prayers and thank you for thinking of us.

Connie

p.s. OK, OK, 8 hours after this original post, I can look back, read it, realize that everything is fine, and I just went a little overboard in the WORRY department.

I think it has a lot to do with everything going on around me. These things around me make me a little worried and stressed.

The Holidays can certainly do that to a person. And every once in a while one has to have a meltdown and then move on. This week it was my turn!! That is all I can say. I feel kind of silly for allowing myself to get so carried away this week. So you will have to excuse me for a moment.

We are just so thankful to be so blessed. That is where I need to focus my energy (on positive thoughts) and not waste it on worrying about things I have no control over.

Let go and let God..........

Friday, December 26, 2008

Christmas day has come and gone. I hope everyone had a fantastic Christmas. I know our day was fabulous!!!

We started Wednesday night by going to the Christmas Eve service at church. After that, we came home and watched a movie (The Twelve Dogs of Christmas). OK some of us watched it (the kids) and some of us slept through part of it (me). If I sit still, I am done for!!! Keep me moving and I can last all night. The kids watched the Santa tracking website to see where Santa was and tried to figure out how long till Santa arrived at the United States. Thanks Ellen for the e-mail on that one, the kids really liked it.

Anyways, on Christmas morning the kids slept in until 7:30 a.m., bless our kids. We love to sleep in. The first thing the kids wanted to do was open a huge present that was for both of them from Mike and I. It ended up being a large box with a note in it. The note sent them on a scavenger hunt to find their Wii. It was more fun than just sticking it under the tree. They had to read the clue and find where the next present was hidden that would lead them to their untimate gift. 3 fake presents later, the “real present” was found. The kids were thrilled. I think it was the last thing they expected to get. Let me tell you, the Wii entertained them for hours yesterday. I hope they continue to get that much fun out of it.

We spent Christmas day at Mike’s mom’s house with his family and then a quick visit up to my mom’s house and other visits to relatives. Today we got together with my dad and Jane.

The kids have off school now until Jan 5th. They have been keeping busy so far. And they have some play dates and sleepovers planned too.

Mike is off school until the middle of January. He is enjoying his time off too. And yea, I am continuing to work. Hey that isn't fair, I want off too. I actually could take off but I would rather save my vacation time to use in the summer time when it is nice outside. I love hot sunny swim weather. So I will hold out for summer to enjoy my time off work....

I was hoping we would have a white Christmas, but we did not. No big deal, I just love to see snow with the Christmas lights outside, it is so pretty. I hope we do get some snow this winter. We do so love to sled.

Now to end, I hope you all have a great Happy New Year. May the coming year be filled with good health and hope for a cure for NB.

Connie

Again thank you all for your donation to Lunch for Life. Jared wanted 500 ornaments and now has over 4000. He was thrilled to see this "Yahoo" is what is said with a big smile on his face. AWESOME and THANK YOU is what I say!!! God bless all of you who went out of your way to help others. Your good deed will not go unrecognized!!!

p.s. please keep my friend Kim Mease and her family in your thoughts and prayers as Michaela will soon celebrate another birthday in heaven. On December 28, 2008 Michaela would've been thirteen this year. Michaela's battle against NB ended in July of 2004 and not a day goes by that she is not thought about. Stop by Michaela's page by the direct link below and leave a message for her family so they know Michaela is not forgotten.

Wednesday, December 24, 2008

Tomorrow is the magic day. The kids are so excited and crazy that it is funny. I love it. The mystery of Santa and the big day coming are wonderful. Oh to be a kid again .........Christmas is fantastic. Have a wonderful Christmas Eve and Christmas day.

Monday, December 22, 2008

First off, I must thank everyone who continues to show support through the Lunch for Life Giving Tree. Jared is now up to 337 ornaments on his tree. That is amazing. We sincerely thank you all for your support. May your donation, with hope, find a cure for Neuroblastoma.

The kids are really getting excited for Christmas. We are down to 2 days and counting. They can hardly wait. They both, especially Jared keeps thinking of things he wanted that he forgot to put on his list. We mailed the lists to Santa today. I tell him, “Santa knows what you want, don’t worry”.

You know I told you the kids made graham cracker gingerbread houses at school? Jared loved his house and wanted to eat the candy ssssooooooooooo badly, but decided to wait till Christmas to eat it. Well now he doesn’t have to worry about it. Last weekend while we were away, Buddy ate it for him. At first I think Jared was going to cry about it and then he just laughed when I laughed. Darn dogs anyhow!!! Here is a picture of what his house looked like when it was here and in one piece.

This past weekend Jared and I went to a breakfast with Santa at the school. It was a neat morning. We ate and then the kids each had a chance to go see Santa. Here is Jared with Santa.

While Jared and I visited Santa, Mike and Kirsten went to a swim meet.

Last Saturday night we went to Aunt Linda’s and Uncle Tom’s sing along. Uncle Tom always plays the player piano as we all sing Christmas carols. The kids love it. WE always do a challenge with the 12 days of Christmas with the guys against the girls to determine who can sing i.e. yell, the loudest. The girls won this year. Girls’ rule and boys drool (I had to say it).

I have to share a funny story with you about Jared and the tooth fairy. Friday evening Jared lost a tooth. He came to me so excited, and told me about his lost tooth. He then asked me for $5.00 because the kids know we are the tooth fairy. So anyways, I get in my purse and give him $5 to which he tells me, no put it under my pillow while I am sleeping tonight. It was so funny. So I did and he was happy.

So on that note, I am going to wish everyone a very Merry Christmas.

Connie

Friday, December 19, 2008

Let's help Hannah's wish come true!!

This is the true story of 5-yr old, Hannah Garman, who was diagnosed with glioblastoma multiforme, a rare and incurable brain tumor.

She has been given 12 weeks to live and is currently in her 7th week. This is especially sad because her mother died 2 yrs ago from breast cancer.

Right now she has lost most of her motor skills. She is confined to bed
And cannot really do anything or play with the gifts she is getting from
people, but she LOVES getting cards - she has gotten so many from people she does not know and just loves to have grandma read about the people who send
them and see their pictures and is so proud of all her cards. Her room is just filled with cards.

When asked what she wants for Christmas she said she wants to
see how many Christmas cards she can get. Many people have passed this
wish along to their churches, prayer groups, friends and family. There are
school groups where children are making her cards. People are including
pictures so she can see who it is that is sending her the card.

If you would like to help with her wish, you can send a card to her at:

Hannah Garman
704 Orchard Rd
Lititz, PA 17543

THANKS! Feel free to pass this along to your own prayer group, church,
school, etc.

Let's see if we can have the cards coming in big postal bags
for her this Christmas, since it will be her last holiday.
To read more about Hannah, see pics, & stay updated on her progress at

http://www.caringbridge.org/visit/hannahgarman
Direct link to her caringbridge page in at the bottom of Jared's page.

Thank you for your assistance in making her wish come true.

Tuesday, December 16, 2008

Two weekends ago we went to the Christmas party for the Four Diamond’s families that was held at the Hershey Lodge. I am starting to think the kids might be a little too big for it now. They insist they are not but my opinion is different than theirs. They have signing, playing instruments and dancing. Usually our kids are up there in the mix having fun. This year they sat there and watched it but refused to participate. The only thing I can say in their defense is the kids both had a sleepover at a friend’s house the night before, so maybe they were tired.

Kirsten had been at a birthday party sleepover and Jared was excited to stay at his friend’s John’s house. I think the most exciting thing was seeing a dead deer hanging in John’s garage. You see, John’s dad is a hunter. Mike has never and will never be a hunter, so that is not something Jared has seen before. A matter of fact, Jared had his camera with him and took pictures of it. I can’t wait till we get those pictures developed, it should be interesting.

This week, the 2nd graders performed the Christmas program at school. It was so adorable. The kids put a lot of work into it and the hard work paid off. It involved a lot of singing. My personal favorite was the kid who sang all I want for Christmas is my two front teeth. Jared was so excited the past few weeks just waiting for the concert to occur. Every day he would ask me “how many days till our concert?” It was cute. Jared was thrilled that his one teacher gave him a carnation for his performance. That was “cool” per Jared. It was pretty thoughtful. You know it is the small things in life that people do that are so special.

Today we went into school to make gingerbread (graham cracker) houses at the school for the kids to decorate. While the grownups did that the building, the kids watched a movie and played.

When we came home, we ate supper and then took the kids sledding. Today was our first snow. I actually broke out the one Christmas gift early (snow pants for the kids) tonight and gave them. So anyways, we walked over to the school and sledded down the big by the football field. We sledded, made snow angels and had a snowball fight too. It was a lot of fun. I am thinking tomorrow our fun will be gone. Think they are calling for rain and so the snow will melt for sure.

It is hard to believe that we are only about a week away from Christmas. I cannot wait to see the kids on Christmas morning. Christmas is all about kids and having fun.

This weekend we are planning a family get together at Aunt Linda’s and Uncle Tom’s to sing Christmas carols with the player piano and have a grand ole’ time. Should be a blast.

I am still working on my Christmas cards. Not quite there, but should be done by the end of this week. I have off Thursday night this week so I think I can get caught up on some things I want to do.

Kirsten is excited about being in the Christmas play at Church on Christmas Eve. She is an angel in the Mary and Joseph play. Jared chose not to be in the play.

Till later,

Connie

Thursday, December 11, 2008 8:06 PM CST

This month is a very special month to us.

In July of 2003 Jared was diagnosed with and began treatment for cancer.

In December of 2003 Jared was declared NED, or what is known in the cancer world as “No Evidence of Disease”. Which is as good as it gets, next to being in “remission” Jared is one of the lucky ones in the aspect that he was NED five short months after starting treatment and remains that way still today……. (Knock on wood, cross your fingers, praise God or whatever one wishes to say)

We truly are blessed. We are amongst one of the luckiest parents alive. We praise God everyday for what we have.

Sometimes people do not know how good they have it till they live in the cancer world for a few months or even days, and it doesn’t take long then to realize how lucky we are, for everything and everyone in our lives.

NED forever and ever and ever and ever and ever and ever…………………..that is my wish for Jared and all those children fighting cancer.

Remember to donate to lunch for life or Four Diamond’s fund this year, if you are able.

Jared’s virtual tree on the Lunch for life site is now up to 120 ornaments and counting………………… thank you all again. Jared's virtual code can be 31780, so if you donate, use this code to earn Jared more ornaments.

Connie

Saturday, December 6, 2008 6:45 AM CST

We went and had the kids Christmas pictures taken and had the opportunity to see Santa. The kids were able to tell him all of their desires and wishes. Yea, I think we were there an hour (just kidding).

Here are the Christmas lists:

KIRSTEN

Wii
Gift cards
iPod stuff
Soccer ball
Swimming suits
Webkinz
Money
School stuff
Laptop
Jewelry
Clothes and shoes
Soccer stuff
Swimming stuff
Books
Stuff from Claire’s
Stuff from the Limited too
Movies
A rabbit
Cool stuff

JARED

Wii
DS games and DS stuff
Webkinz
Boxers
Tattoos
Books
DVDs
Balloons
Laptop
Cell phone
TV
A four wheeler
Bike
Chalkboard and chalk
Rollerblades

There you have it. That is officially the kids Christmas list. What a list, hah? Santa will be busy filling those lists up. No really, our kids understand that you can ask for anything you want, but that does not mean you will get it all. So, that being said we will see what they get on Christmas morning.

I want to give a HUGE thank you for all who were able to donate to Lunch for Life or Four Diamonds. Jared has 100 ornaments on his Lunch for life Christmas tree. He loves it. Each ornament represents a $5 donation. Now if you use the giving tree code I gave you then $5 earns Jared two ornaments each. But 100 already, that is too COOL!!! I need and want to THANK YOU all again from the bottom of our hearts. Above the journal entry there is a direct link to Jared's Christmas tree. The link reads, "Jared's giving tree". Check out his tree it is neat.

Keep those who are struggling right now in your prayers. Please visit Jamie, my friend, who recently lost her son, Brandon and leave her a message of support. I know she is struggling and could use some encouraging thoughts right now. A direct link to Brandons' caringbridge page is at the bottom of the page.

Thank you for thinking of others.

Connie

Sunday, November 30, 2008 6:54 PM CST

Thanksgiving is over, which brings us that much closer to Christmas. Let the countdown begin.

My kids main focus is figuring out how they are going to get themselves a Wii. They keep begging us for one and or course; they both put it on their Christmas lists this year. I keep assuring them that their dad and I are not buying them a Wii :)

Therefore; they are trying to figure out to get themselves one. They tried to ask Grammy for one, but I said "No way, Grammy is not buying that for you!" So they are trying to figure out how they are going to raise enough money to buy it ($250.00).

One idea they had was to help Grammy rake up her leaves in her yard.

Kirsten..."I bet Grammy would pay us to rake her leaves up"

Jared..."How much do you think she will pay us?""

Kirsten..."Maybe she would pay us $100 an hour"

Jared..."How long would that be?"

Kirsten..."In two and a half hours we would have enough money"

Mom..."Grammy is not going to pay you 100/hour!"

Kirsten..."Maybe she would pay us $20/hour?"

Jared..."That would take us........

They even said they would both pay $100 if we paid $50.00, but mean old mommy said no to that too. Oh I am so mean sometimes.

And you can see where that conversation is going. It was funny to hear. I keep telling them it is too expensive. Won't they be surprised?

This week we are going to see Santa. I am not sure where the kids stand with Santa. I think it is a not sure thing, but still want to believe. So we are going with the Santa is real thing, till proven otherwise.

Kirsten went to church last week with a friend and wanted to be in the Christmas program. So today we went to church too (which we have been meaning to get back into doing anyways). So anyways, as we sat there during church, the preacher talked about all the people who were on the prayer list and why. When he was done, Jared looked at me and had this conversation.

Jared..."Why didn't he mention that guy who died yesterday?"

I wasn't sure who he meant

Mom..."WHO?"

Jared..."That guy from National Geographics!"

Mom..."Do you mean the crocodile hunter?"

Jared..."No, that camera guy who died last night who got crushed by that tower!"

Then I understood.

Mom..."That didn't happen yesterday, we just watched it yesterday"

Last night we were watching a national geographic special of a tribe somewhere in Africa, that build a tower, and jump off it, with vines tied to their legs, to mark the transition from boy to manhood. At the end the tower fell, crushing people and killing the camera guy for National Geographic. That was neat of him to think about that wasn't it? So considerate.

The kids have been off school since last Tuesday and they go back this Tuesday. I think they miss their friends.

Well have a great week.

Connie

Picture from family carnival at Penn State with our Life house friends.

Monday, November 24, 2008

As Thanksgiving approaches this week, we must stop and take inventory of our lives and think about what we have in our lives that we are thankful for.

I know I made my list this week:

My husband who stands by my side ……….
My children who mean the world to me…………
My family who is always there for me……………
My friends who are a great support system, no matter what……….
Our extended family from THON (LIFE house)……………..
My extended cancer family who understand like no one else…………………..
My job that is rewarding and pays the bills……….
Mike getting laid off and them paying 100or him to go to school……
Mike being home and able to take care of the kids……….
Wonderful teachers for the kids…………
A roof over our head………….

I am sure I could actually sit and name a hundred things I am thankful for. What are you thankful for???

Have a blessed Thanksgiving filled with family and friends. Enjoy.

Keep all those dealing with cancer and the consequences of it in your prayers.

Connie

Thursday, November 20, 2008

Dear Friends and family,

I am starting by attaching a letter I e-mailed out to just about everyone I know. There will be more mailed out to friends this week. If you can help, great. If not, pass it on to someone you think may be able to help. I get it the economy is rough right now. So if you can afford to help that is great. Anyways..........

As many of you know, it is time for my annual fundraiser. This year I have decided to do something different. I am attempting to raise money for two different organizations.
I will give you the information on both of them, and if you are able to help, you can choose which one to donate to.

First off, I want to tell you about the Lunch for Life fundraiser. Lunch for life is near and dear to my heart because all the proceeds directly benefit Neuroblastoma. The funds raised here, go directly to fund NB research. As I have said before, Neuroblastoma (NB) has no known cure. What helps or cures one child may not be helpful at all to another child. This is what makes the prognosis of a child diagnosed with Neuroblastoma so poor. At the time of diagnosis most children’s disease has already spread from the original disease site to other body parts, and that is why the survival rate for Stage IV Neuroblastoma is so poor (less than a 50urvival rate).

We know we are very blessed. In December of 2008, we will celebrate Jared being cancer free for 5 years. This is nothing short of a miracle, considering Jared was Stage IV at diagnosis in 2003. Jared is a survivor. He is our own personal hero. We are one of the lucky ones, but many parents are not so lucky. I know many parents who are no longer battling the disease, not because they chose to stop battling, but instead, because the disease HAS won. Let’s not let the disease win anymore. Let’s stop Neuroblastoma in its tracks. You can help by donating to lunch for life.

This is the link to Lunch for life:
https://www.lunchforlife.org/Donate.aspx

If you donate, donate in honor of Jared Strayer with the giving code of 31059 and he will enjoy seeing his virtual Christmas tree get decorated with ornaments as the donated amount of money increases.

The other organization I am promoting this year is the Four Diamonds Fund. Four Diamonds is a Hershey Medical Center (HMC) based organization that benefits the families who have children being treated at HMC for cancer. It helps with insurance co-pays, gas, food vouchers while inpatient, medications and many other things. Four Diamonds is a wonderful organization. We were so thankful for them when Jared was sick. Any help you could give them would be greatly appreciated.

The link to donate to them is as follows: https://secure.ddar.psu.edu/Thon/

if you donate to Four Diamonds, donate on the THON site and donate in honor of LIFE house. LIFE house is our Penn State sponsoring organization. I know they would appreciate being recognized and we think the world of them.

That being said, any assistance or donation you can make would be appreciated. And if you are unable to give at this time, that is understandable too. One thing you could do, is to forward this message onto other people you know, so they too can help.

Thank you for taking the time to read this and help if you are able.

Sincerely,

Connie Strayer and family

Donations can be made a number of ways for lunch for life:

1) donate on line at above address

2) mail a check to

Children’s Neuroblastoma Cancer Foundation
Lunch for Life
P O Box 6635
Bloomingdale, IL 60108

3) Mail a check to me and I will forward it on to Lunch for life
402 West First Street
Boiling Springs, PA 17007

Monday, November 17, 2008

First of all, I want to tell you about the THON family carnival we went to on Sunday, at State College. This will be our fifth year attending THON, however, we have never attended the family carnival before. It always ended up that someone was sick or something was going on that we could not attend. So this year we were able to go and had a fantastic time. It is loud and noisy like the “REAL THON” with music playing, people dancing, and games for the kids to play and prizes to be won. Ask Jared and Kirsten, Jared kept saying, “I want to do something to win a prize”. One of their favorite things was getting tattoos.

The kids left the carnival with a bag full of goodies and prizes. Thank you all.

The main thing we all enjoyed was again seeing our favorite people from our organization (LIFE house)

This is the kids with Reeni, Julie, Joel and Andrew. Julie is one who came over to our house last year to “can”. It was nice to see them all again. Yes, I know it was only a week ago that we saw them but it was still nice. I hope we are able to get together some more before THON this year. We are anxious to see if LIFE house will have dancers and who they will be.

I want to thank all of you for meeting us at the Carnival. The kids love spending time with you all. They love all the attention they get from you. Reeni, I loved watching you and Kirsten strut your stuff to the music. Kirsten was a bit shy, now wasn’t she? How unusual is that? VERY!!!! She will loosen up by THON and be one wild and crazy girl, I am sure. Just wait and see.

And thank you guys (Joel and Andrew) for “watching” Jared too. He had his own agenda in mind. He loved playing hockey didn’t he? I think his favorite game was hockey or throwing the balls at the bottles and knocking them down.

Anyways, we loved seeing you all again, and we look forward to our next visit. We will have to plan it sometime for early December.

The major event that occurs at the family carnival is the unveiling of the THON logo. It was exciting to watch. Here is the logo to be used for THON 2009:

I love the logo. I must admit when I first saw it, my thoughts went immediately to the Four Diamond’s story. About the knight who battled with honesty, wisdom, courage and strength (The Four Diamonds). If you have never seen the four diamonds movie or read the story, you should. It is amazing. That is what my immediate thoughts went too. The logo is perfect for THON. I love it. The theme is “dream forward”. So go ahead, dream of a world in the future without cancer. So before we left State College yesterday we purchased our first THON 2009 t-shirts.

We are so getting ready for THON. We have already started to collect things to take to THON, like bubbles, games, card games, dice games, crayons and so forth. I am already starting to think about THON mail for dancers. Before you know it, it will be here. Time does fly by fast. Our hotel room is booked, yes with an indoor pool. That is a must for the kids.

You know, if you know anything about THON, you know what hard work these Penn Staters put into making THON happen and making it so wonderful for the kids. Without Penn State, THON would not be. Thank you Penn State for everything you do for Four Diamonds and the Four Diamond's families. We appreciate it so much.

So that being said, remember to keep all those battling cancer and those dealing with losing a loved one in your prayers.

On a lighter note, Jared is thrilled about a present Uncle Paul gave him the other week. It is a B B gun. I must admit, that I was a little leery at first, but he is doing well with it. Mike and Jared have been practice shooting and Jared loves it. They go out back and shoot at cans and things. Thank you Uncle Paul.

Last Saturday night I took Jared and a friend swimming at the High school. They were funny to watch. They had the snorkel equipment on and everything. Of course, I forgot my camera too. It was cute. Jared doesn’t have too many play dates with friends, so it was nice for him. He sees Kirsten going somewhere or having someone over all the time, so it was nice for it to be his turn for a change. Hopefully we can plan some more play dates soon coming up. But sometimes with sports and games, life gets hectic and not as accommodating to play dates, but we will see what we can do.

Until next time, have a great week.

Connie

Tuesday, November 11, 2008

Tomorrow, November 12, 2008 beginning at 12 noon there will be an e-bay auction in honor of Arden Bucher's birthday. Arden recently lost her battle with Neuroblastoma and her family is doing this to raise money for cancer awareness. Check it out tomorrow and see if you can find something to buy to support Arden's family and all families battling pediatric cancer.

(Copy and paste the address below)

http://www.ebaygivingworks.com/

Sunday, November 9, 2008

Friday evening our sponsoring group from Penn State came over to spend the night. The kids could not wait until they arrived. Three of them are people we met last year (Reeni, who was one of the dancers last year, Joel and Andrew) and then there were two new guys we met for the first time (Jon and Jamin).

This is the kids with their Penn State friends from L.I.F.E. house.

(top left) Reeni, Andrew, Jamin, Jon
(bottom left) Joel, Kirsten and Jared

After they arrived we decided to play one of the kid’s favorite games, which our Penn State friends brought with them last year, apples to apples. Apples to Apples was fun, but I think Jon was envious of others because he just couldn't win a card. Hey are you the one who started cheating and putting in more than one card at a time? Just kidding, I think that was actually Jamin or Andrew.

When we were done playing games, they all decided they wanted to watch a movie, The Incredible Hulk won. By the time the movie was over, A few people, myself included, had taken a little snooze. We all went to bed sometime after midnight. The kids slept downstairs with all their friends. They loved it. It was a big sleepover party.

Saturday morning when we got up, Mike made us a huge breakfast, then off to canning it was. Here is a picture of everyone with their “Canning” attire on and ready to go.

WE canned from 9:30 a.m. until about 4 p.m. with a lunch break in there too.

The weather was perfect for canning yesterday. We wore long sleeve shirts or sweatshirts. No gloves or hats needed. Last year we “canned” in either late November or early December and I remember how cold it was. Yesterday was beautiful.

We teased the kids that they brought us good luck. It seemed that people liked seeing the kids canning and loved to donate to them. Ask Kirsten, some of them came back around just to give money to her for the cause.

Jared was funny. He enjoyed canning but did need to take a break after a while. Here is Jared taking a break.

We really did not think we made as much money this year, but actually we ended up making more. Our grand total was 1,185.00, isn’t that great? We were thrilled. Here is a picture of everyone counting the money.

Our Penn State friends left last evening to head back to State College. We thank you all for coming. We loved canning with you and helping you raise money for Four Diamond’s Fund. Thank you for letting us help. We will miss you all. Hopefully we will see you this coming weekend at the Carnival at State College for THON. We are planning on coming, we will call this week.

If anyone wants to support Four Diamonds Fund, go to the Penn State THON site and you can donate money. All the money helps families at Hershey who are dealing with a child who has cancer. Been there, done that, and it is a wonderful organization.

I hope Joel does not mind, but I am going to also ask for prayers for Joel's dad. He was recently diagnosed with colon cancer. He is currently recovering from surgery and will soon be starting chemotherapy. So please say a prayer for him.

Till later,

Connie

Sunday, November 2, 2008

Last week was full of Halloween parties and candy. Tuesday night Kirsten had her Halloween party at school and had a lot of fun. They set up a haunted hallway which it sounds like the kids loved. One of their favorite things was a fortune teller. Who told the girls that, “The boys they take to the prom will be the guys they marry.” They were screaming and laughing when they told us moms this information. So we have now decided that their future prom dates will be evaluated to the hilt. We are looking for smarts and future potential.

Wednesday we took the kids into my work for a Halloween trick-or- treat night. They love to go in there. The residents all sit in circles in the dayrooms on the different units and hand out candy. The older people love to see the kids and the kids get a kick out of the residents too. They always enjoy going here. We took Kirsten’s friend Kylee and Kara along too.

Thursday night was real trick-or-treat night. We ended up walking the neighborhood across the street from us, then going to the grandparent’s houses to visit too. If you could’ve seen the big pile of candy on the floor when we came home you would’ve been surprised, I know I was. Now my trouble is trying to keep out of it. Here are the kids posing in their Halloween costumes.

Friday Jared had his Halloween parade at school and party. It was the perfect day for it. I think it was around 70 degrees. It was beautiful outside.

Yesterday (Saturday) Kirsten had her last soccer game. They did not win, but played a great game. Now Kirsten can just focus on swimming again. I think swimming is Kirsten’s favorite sport. I cannot wait to see her times this year. Her improvement from year to year is phenomenal.

After the soccer game we headed down to Thurmont, Maryland to go hiking. We went to Catoctin Park.

It is a cool hike. It takes about an hour to drive there, but it is worth it. When you hike to the top, there are large boulders up there to walk, sit, or climb on.

We packed a lunch and ate lunch on the top. It was cool. Now a lot of the leaves had already turned to the brown and yellow color but they were still pretty. We saw a huge buzzard on top sitting on the rocks, which impressed us all. Mike and Jared went climbing around on the rocks too. I think Jared was a little scared at times, but he did a great job. Jared and Mike climbed down the side of the boulders into a rock cravice to explore and look for caves. This is a picture I took from the top (where Kirsten and I were) looking down where they climbed too. Jared wanted me to add this picture on his page, because it was a favorite of his.

Here is a picture of Mike and the kids on top.

Do NOT forget that this coming weekend is our canning weekend in Carlisle. We are getting two intersections approved so depending on how many people come; we can work two different locations. We are planning on the square (Hanover and High streets) and by the Hess station on Route 11 (intersection of route 11 and Clay Street). So we will see how many L.I.F.E. students come up to our house. The kids are getting excited to have them come and spend the night on Friday, then do the canning on Saturday. I hope we are able to surpass our money collected last year. Last year it was around $1000.00. Maybe this year we can collect $1200.00

So if you see us next weekend at the square, help families of kids with cancer, and donate some money.

Monday, October 27, 2008

First I have to add that I received a call from the vision therapy doctor today and we may be able to work the therapy around Jared’s school schedule. That is good news. I had really considered giving up my desire to try this therapy. Now it looks like it might be a GO. I have to plan out the schedule and then go from there. Should know in the next week or so. That is the good news.

I wanted to share something just for fun; last Wednesday was Mike’s birthday. The kids had fun with his day. They purchased him a shirt, candy, ice cream cake and a “quad shooter”, as they called it. Yes, it is a toy that shoots Styrofoam darts. I am not sure who liked it more, Mike or Jared. You look at the picture and decide for yourself. It was funny. Jared picked it out at Wal-mart. He told me that he wanted Mike to buy it for him the last time they were there but Mike did not do it. So now Jared bought it for him. I think there were other motives behind that one……..What do you think?

Today was my birthday and we went out to dinner at Hoss’s. The kids kept telling them they wanted them to sing happy birthday to me. So anyways, they did sing, but that was not all they did either. We had to put on silly paper mustaches and stand by the fireplace while I held up a silly board and then they took our picture. OK OK they kids had fun with it. Me, well I was a little embarrassed but it all worked out in the end.

Today on 102.3 apparently they announced my birthday and I won the prize for the day in regards to birthdays. I won a $25 gift card to Giant and the Incredible Hulk DVD. The kids are anxious to watch the movie so I have to go pick it up soon at the radio station. How they got my name and birthday? Who knows! Oh well, no big deal.

Connie

Sunday, October 26, 2008

First off, I want to share with everyone that our fantastic friends from PENN STATE/L.I.F.E. house will be coming here the weekend of November 7th and we will once again this year be “canning” at the square in Carlisle. For those of you who are new or do not remember what that is, it is when the students from State College come and we stand out and collect donations for Four Diamonds. Four Diamonds assists families being treated for cancer at Hershey Medical Center. Penn State student’s and their dance-a-THON/ THON fundraisers, like canning is the biggest donation to Four Diamonds fund. The four diamonds fund would not be what it is today without Penn State.

Yesterday I received an e-mail from one of our LIFE house sponsors and he told me they are coming again this year. We are so excited to have them come and that we can assist with fundraising for such a worthy cause. It is a worthy cause they we ourselves, utilized when Jared was being treated for his cancer. This is our chance to help give back to the organization. It is with great pride we assist them. As of right now, it looks like there will be about 5 of them coming but closer time we will know an exact count. Hip hip hooray!!!!!

I also urge all to check out a new website I found through another NB mom. It is for raising awareness and funding for pediatric cancer. Something I am all for. Below the journal entry on Jared’s page, there is a direct link to the website or above this journal entry there is also a link. I want to get more involved and hopefully make a difference in the pediatric cancer world. That is my goal. Thank you Amy Bucher for guiding me to this website where hopefully we can work together to make a difference.

Saturday was raining here all day. We had to make a parental decision and not attend the soccer game. Everyone is getting over being sick and I did into want to push our luck. Instead, we went to see the movie, High School Musical 3. Then after that we went to the sports emporium and played some games. I hit the jackpot at the sports emporium. I won 1006 tickets with my first token. Of course, I split the tickets up amongst the 3 kids. The kids had fun playing games and then deciding what they wanted to get with their winnings. Kirsten was the sleep over queen this weekend. Friday night after the football game, she went home with Kia and spent the night and then Saturday Kia spent the night with us. Those two are a great pair together. Today we took them all (dogs included) for a walk down through town, by the lake and back. It was good exercise for them and us. Besides the trees are so pretty right now too.

Tonight the kids carved their pumpkins. They had fun doing it anyways. The picture up above is from tonight. This week we will be busy with Halloween parties and trick or treat night. By this time next week we will be so candied out, that it will not be funny.

Friday I took Jared for his second vision therapy evaluation. The first consult highly recommended we do it. This one was kind of wishy washy. Not sure what to do now. The first one wants to do it and will turn it into the insurance as a medical condition so the visits are covered up to 10 - 12 visits except for the $30 co-pay. The main issue with this consult is the location of the doctor, he is located in Mechanicsburg. So we go for the second consult here in Carlisle. This doctor is NOT so convinced that Jared WILL 100 PERCENT benefit from vision therapy. He leans more toward Jared being a young second grader and giving him time. He also will not turn it into the insurance as a medical issue; therefore, they will not pay for it. It is too expensive to pay for out of pocket with no guarantee for success. So do we not do it, or do it in Mechanicsburg, which may mean missing school to get it done, depending on what time the appointments are???? Tough choice. I want to trial it, but not if it means missing school. So you can see why this is especially hard when we have no guarantee of it working. Have to think about this for a day or so and decide what is truly best for Jared.

Anyways that is it for now. Have a great week everyone and thanks for stopping by.

Connie

Tuesday, October 21, 2008

Fall weather is actually here now; OK bring back the bathing suit weather, because I am ready for it again. NO actually, I love fall weather. When I think of fall, I think about football, sweatshirts and hiking boots. Sounds like a good combination to me.

We are hoping to be able to get some hiking in soon. We wanted to go to New York State hiking but with everyone being sick and soccer games, it just has not happened. I would love to have the opportunity t go hiking before the leaves change completely and fall off the trees, but I think we may miss it this year. This weekend we are planning to at least go hiking around here and possibly head to a corn maze too. We shall see what the weather brings us.

My big thing now is lack of sleep. Ever since I was off work with my fracture, I do not know how to work night shift anymore. Prior to this summer, night shift and my sleeping were not an issue. I have worked night shift for about 2 ½ years and it has been no major problem. But now that I have slept at night for over two months, I cannot get back into the swing of things again. Lack of sleep makes me tired and a little irritable. I am really debating or letting it go another month or so and then looking for a dayshift job if things do not change. It really has been stressing me out a bit lately. But then again, with everything else that has been going on it is hard to tell if it is just lack of sleep or something else. So I will stick it out a month and see what I need to do with my life and job. Hope and pray I can start sleeping during the week.

Yes, you should ask my kids about it. I have been a tad bit grumpy lately. But I think they have been pushing “buttons” a lot too. It is the same old thing, spoiled rotten. What more can I say? Jared has been a bit moody lately; think it may have to do with no practice. Football has ended and wrestling has not started yet. Talk about whining………..oh baby, he has it down pat. It was funny because last evening as Jared is whining and fussing about something and Mike and I both are at our wits end. I sit on the couch silently counting to 10, because I needed a time out for 10 seconds before I could react to things. Mike makes a comment to me about Jared’s behavior and all I can say back to him is, “Just be thankful he is here to whine and drive us crazy!” And that was it, that was the only thought I needed to say. It explained it all. We are forever thankful and blessed, even in “grumpy” times.

Tomorrow is Mike’s birthday. I will not say how old he is ……………… oh what the heck, he will be 42. Now the whole world known how old he is. I have to bake a cake yet and take the kids shopping for him. Yes, I am the last minute procrastinator.

Last week Kirsten was in the Boiling Springs Halloween parade and won a $10 prize for honorable mention. That was cool. She had dressed up as a pirate. It was too cute. Jared was in the parade too, he walked with the football players. Tomorrow night Jared and the football team are going to be on a float in the Halloween parade in Mt. Holly. Sounds like more fun.

God bless and keep those battling and effected by childhood cancer in your prayers.

Connie

Sunday, October 19, 2008 9:36 AM CDT

First I wanted to share with you, that our ham sandwich sale for Brandon Looses’ family is complete. We ended up being able to donate just over $2,000.00 to the family. That is fantastic. I was thrilled to be able to give that much money to Jamie. Like I have told some of you, when I first initiated having a sandwich sale to raise money for them, my goal was $1000, we well surpassed that, actually doubled it.

I could not have done that without the help of all my friends and family who sold, made and bought sandwiches. We ended up selling 940 sandwiches, which meant we also had to make 940 sandwiches. I thank you all who came over to my house and dedicated your time to help make sandwiches. Your support meant so much to me. It is great to have family and friends like you all. You are the BEST. I am one lucky lady to have you all in my life.

Without the help of my friend, Kim Mease and her friends from Lancaster, kicking in and selling too, the sale only would have been half of what it ended up being. I thank you all for your hard work and support from your direction. You all are the greatest too. Thank you.

It felt great to go see Jamie on Friday and hand her the money we raised. We even joked around about throwing the money on the bed, getting naked and rolling in it. OK, OK, I think I left some information out there, but you get where I am going. I have seen people do that in movies and so it sounded like a good idea…………………but, no we did not really do it. We only joked around about doing it. We had to find something to joke around about anyways .............

But on a serious note, continue to keep Brandon’s family in your prayers. Nothing can replace the loss of a child, only time can ease the pain………………..or so they say?!?!

It was great to see Jamie, but I must admit, I wanted to be able to do something or say something to make her all better and ease her pain. However, there are no magic words or deeds to accomplish that task. Only to give hugs, tell her how much I care and let her I know I am here for anything she needs. As I have said a million times before, the loss a parent feels when they lose a child must be unbelievable. I know how much my heart aches for them, and I bet their heart ache is a thousand times worse. It just is not suppose to happen that way. We are to go first, not our children. That is just how it is to be.

We did have a great visit and talked about Brandon and I had the opportunity to listen to a radio DJ’s song dedication to Brandon last weekend. Oh my goodness, it was heart wrenching for sure. By the time the dedication was done we were all in tears. It is amazing just how many lives little Brandon touched in his short life. What an amazing little boy, that is all I can say.

In Memory of Brandon.............

Well, I am going to end on that note. God bless and take care.

Connie

Tuesday, October 14, 2008

Jared had his last football game on Sunday. He wasn’t sure if he could play or not. When he awoke that morning, he was not feeling very “peppy.” Was a little bit under the weather. He wanted to go to his last game, so we took him. (Good or bad parental decision?) After warming up about 15 minutes, he was spent but he still did not want to leave. He wanted to stay and play. So he did play but only on defense. Normally he plays defense and offense. He was happy that he tackled the ball carrier once during the game. So I am glad we stayed and left him play. He loved football so much this year. It is funny to think back and realize that we weren’t going to let him play at first. I am glad he kept hounding us and that we changed our minds and left him play. Now Jared is read for wrestling to begin.

So Jared did not get better in regards to being sick, he actually got worse. He started running a fever and having a cough (same symptoms as Kirsten a week ago when she had pneumonia). Mike took him to the doctors yesterday and he was started on an antibiotic. Today he is still running a fever so he is staying home from school.

I have stayed home from work the past two nights too. I think I may be getting what everyone else has. Just feel miserable and achy but no temperature, like the kids. I think I might break down and go to the doctors today.

Kirsten is feeling better. Her appetite has not yet improved, or should I say returned, but she is getting there. She lost almost 10 pounds when she was so sick. She started swim practice for winter swim team last night. She seems psyched for swimming. She still has 3 weeks to finish up of soccer yet though. So she will be very busy this next month.

We are planning a possible “canning” weekend here in Carlisle again this year with our State College, Penn State kids. Possibly the weekend of November 8th. I am waiting to hear back from our Sponsor (LIFE house) but it sounds like a go. The kids and I are so excited about that. Last year we had so much fun and were able to raise $1,000.00 in a few hours. It feels good to help out THON that way. When I know if it is a definite go, I will let you know exactly when and where we will be. (Keep your fingers crossed).

Well have a great week.

Connie

Sunday, October 12, 2008 6:48 AM CDT

Yesterday was a sad day, as it was the day we said our final good bye to Brandon Loose. The 1hour 15 minute drive to the funeral home felt like the longest drive I’ve been on for a while. Not because of how long it took, but because of where we were going and what we were doing once we arrived there. There were moments on the way there that anxiety would overtake me and I could feel the tears starting to roll down my face. The tears flowed for Jamie and Craig who lost a son to cancer. A son, the same age as my daughter (9). A son who went through cancer treatment, the same as my son. For a child who missed the opportunity to grow up. It makes you start to wonder, why? Why do some survive? And do some not survive? Why do kids get cancer? All these questions are running through my head.

Then when my thoughts go to Jamie and Craig, it really breaks my heart. If any of you know Jamie, you know how terrific she is (and Craig too). She is a wonderful person, with a heart of gold. Her entire world was taking care of Brandon. That is what she did for the past 4 ½ years. Now abruptly life has changed from the busy schedule she once knew. I am sure in the coming days and weeks Jamie is really going to need our support. Keep the family in your prayers.

The thing that amazed me is the number of people who were touched by Brandon’s life. When we arrived at the funeral service there was a long line to get in to see the family and show our last respect to Brandon. I would guess that we stood in line about 15 – 20 minutes at least. I am not saying this to complain, I am just trying to demonstrate how many people attended. And it was around 9:30 when we arrived, the visitation had started around 8:30 from what I heard. When we were finishing giving our condolences to the family, the funeral director came up to the family and asked them how they were doing, and told them there was at least 200 more people outside waiting to get in. That in itself shows you how many people were touched by Brandon. He was an amazing little guy. He was sent off to heaven with all his favorite things. He had a football and other important things to go with him.

I have been to a lot of funerals in my life and I can honestly say that the number of people who attended Brandon’s service is only comparable to another Neuroblastoma child’s funeral I attended 4 years ago (Michaela Mease). I have never seen this many mourners at an adults funeral. Never………… These children are special. Brandon accomplished more and touched more people’s lives in 9 short years than most people accomplish in 80 years.

We met two other Neuroblastoma families yesterday too. One who is off treatment and doing well and another who just finished treatment? I tell you, it like an instant bond. Cancer sucks, plain and simple but it has introduced me to some fantastic people who will forever be near and dear to me. I have friends from the “cancer world” that will always be special to me, forever and ever.

Jamie told me for weeks and reiterated yesterday that in a few weeks she is ready to start a cancer butt kicking crusade. I am in with her!!!! Someone, somehow, has to stop pediatric cancer.

I know some may read this and think “Your child is fine, why don’t you move on with life and get over it, Jared is good”. Well all I can is that, if any of you ever entered into the pediatric cancer world, I mean personally entered it, not just on the outside looking in, you would get it. I would never wish anyone to have to go through a child having cancer but I can honestly say unless you personally enter this world, you may not get it.

Before Jared had cancer I did not even know that so many kids were diagnosed with, living with and dying from cancer. Sure I wish I didn’t know this still, but I do. I know it firsthand. I have seen way too many children lose their battle and way too many parents bury their child. This must stop. I hope someday that I personally can help make a difference.

On that note I am going to stop. Please keep all those who loved Brandon in your prayers today. Pray for all the children and families dealing with cancer and the loss of a loved one due to cancer.

Connie

Monday, October 6, 2008 7:36 PM CDT

Today has been a very sad day. Brandon Looses’ battle with Neuroblastoma has ended. He finally won his battle. Of course, he did not win it the way we wanted him to or the way we planned it to be. But he is now cancer and pain free. He is in heaven with all the other children who lost their lives way too soon.

We would’ve loved to see Brandon beat the “beast” but in our world and not the next. Unfortunately that is not the case for Brandon or the other 50 percent of the kids diagnosed with Neuroblastoma. Neuroblastoma has a poor prognosis for half of the kids diagnosed.

I read a quote which is both horrifying and alarming: “One child dies from Neuroblastoma every 16 hours”. That is a thought I cannot even begin to think about, nor do I want to think about it.

Brandon was diagnosed with Neuroblastoma in April of 2004. We met Brandon and his mom, Jamie, in clinic around that time. We just finished up Jared’s treatment as Brandon was starting his.

From the day we met, Jamie and I have kept in close contact. This disease is horrible and the only good thing that I can say about it is that, it has introduced me to some amazing people (Kim, Jamie, Tammy, Rebecca and I could go on and on). These other moms and I have an immediate bond; a bond like no other. The unique circumstances that brought us together will keep us best friends forever.

I knew (especially since last Thursday) that Brandon did not have long to fight. I am so sorry he is not here to fight anymore. But I am glad he is pain free and in a better place (if that is what one would say). Even though I am sure (100 percent) that we would rather have him here with us. SO even though I knew it was coming and very soon, it still hit me like a ton of bricks.

I sit here and I think of Brandon not being here and it breaks my heart. The tears come and come all day long. I do not know how to stop them. I am so glad he is comfortable, but damn, it is a shame it couldn’t have ended a different way. My heart is breaking, my eyes are crying and I literally feel sick in my stomach. I am numb. This is the way I feel, so how does Jamie and Craig feel? That comprehension is probably beyond belief………………….

I then think about my own life. It makes me realize even more how blessed we all are. It is scary. I think about Neuroblastoma and I look at Jared and realize all over again how lucky we are. So far, so good. This sadness also makes me want to grab both my kids and hug them and tell them I love them, even though I do this every day as it is.

How does one get over and deal with the loss of a child? That is a question that is so hard to even think about, yet parents do it every day. It sucks and should not be. But unfortunately it is.

Keep Brandon’s parents (Jamie and Craig) and his sister and brothers in your prayers. They sure are going to need the strength and courage in the coming days ahead. Brandon fought a hard battle for over 4 years. His battle is now over and he is at peace, now all of us who are left behind, must learn to live without him here (this is the not so easy task to do).

The ham sandwich sale is now even more important than before. Anyone wishing to help, please let me know. Let’s pull together to help a family in need with prayers and money. The orders and money are due this Friday and sandwiches will be delivered nest week.

God bless.

Connie

Monday, October 6, 2008

It is with a heavy heart today that I say Brandon Loose has moved onto heaven. He is now pain free and an angel in Heaven watching over us. Please keep Brandon's family in your prayers.

http://www.caringbridge.org/pa/brandonloose

Saturday, October 4, 2008

Asking for prayers for Brandon Loose and his family tonight in a time of need.

Friday, October 3, 2008

The verdict is in, Kirsten's chest x-ray showed pneumonia. We started antibiotics so hopefully she feels better soon.

Thursday, October 2, 2008

Yesterday, we had our meeting with Dr. Craig regarding vision therapy. It is interesting to look at and think about, if this could possibly be a cause for some of Jared’s reading issues. I really cannot answer that question 100 percent but definitely feel it is worth trialing. Worst case scenario is we spend some time and money to do it and see no improvement. Best case scenario, it works and we see improvement in Jared’s reading ability. Right now, Jared is so eager to read and learn. It is like he is sitting on the edge of something awesome. Now our job is to provide him with all the strategies he needs to succeed. This is our open window for him and we need to seize the moment and not let this opportunity pass us by.

The school is not willing to pursue vision therapy as part of Jared’s IEP at this time, but I am still going to work on that one. Not sure I will get anywhere but I must try. I think we are actually going to get a second opinion regarding Jared’s visual perception and need for vision therapy. I believe it will come out with the same conclusion, but we think it is a good idea to check into it thoroughly before we pursue it. Hopefully I will get the opportunity to schedule another exam in the next few weeks. After I get the second opinion then I plan on representing it to the IEP team for consideration.

Now, in reality I know two things about the school and vision therapy.
1) They do not believe vision therapy shows to be a successful treatment, long term.
2) It is not cheap
So with no disrespect to the school district I pretty much know that they will NOT allow it to be included.

One thing about special education, IEP’s and the laws is that kids have to be offered a free and appropriate education. The sad part is the education does not have to be the “best” education, just an education suitable for their needs. So, read this how you want to. This means to me that, Jared may benefit from vision therapy and it may a great service but it is not “necessary” for the school to provide the service because as long as the school provides him with an education that meets his needs then they have met their requirements by the law. Period, that is the end of it. So even though I plan on pursuing the whole issue of vision therapy, I will not be surprised when I do not win. By win I mean get the school to include it in the IEP. In reality there is no winner and loser, it is a matter of trying to get Jared any service we feel may benefit him and meet his needs.

This entire thing is nothing personal against the school. I get it. They want what is best for Jared just like we do. But they have to look at the school district as a whole, provide services to children who need them, taking the laws into play and considering financial resources. That is what I told the district members today. I want to pursue the vision therapy and even though we may disagree on if it is/may be beneficial for Jared, it is nothing personal against them; nothing at all. WE all are after the same outcome, Jared’s success.

Now for the great news about Jared, the improvement he has shown since last year is phenomenal. I mean absolutely terrific. He is an amazing little guy. Keep up the goodwork.

I will have to keep you all updated.

Kirsten has been off school all week with a fever and cough. As I think I said before, she was negative for strep and the flu. Tomorrow morning she is getting a chest x-ray done to rule out pneumonia. She is tired of being sick and wants to feel better and go back to school. The other night she scared us because her temp was up to 105.2, not quite sure what is going on with her. Doctor thinks it is viral, but going to rule out some other things first. Poor little girl has been sick since Saturday. Hope she is better soon.

Say an extra prayer for Brandon and his family today

God bless

Connie.

Monday, September 29, 2008

Jared is now sporting his new haircut. He wanted a buzz cut, so I gave him one. I miss his pretty blond hair, but he does not miss it at all. Here is a picture of Jared getting his hair cut.

(Oh well, it is just hair and it will grow back)

Jared played a great football game on Sunday. I never saw him so “on”. It was a fantastic game with good plays.

Kirsten had her soccer game in Harrisburg on Saturday. It rained the entire time they played. A matter of fact, it poured during the last half. The score was 0 – 1, no win but boy were those girls ever aggressive. Great game. There was actually some shoving going on, I never knew soccer was a contact sport.

The weekend was wet and rainy. And of course with soccer and football we were out in it both days. Kirsten is now sick. She has been running a temperature since Saturday of above 101 (except for when the Motrin kicks in). She wanted so badly to go to school today, so we left her (knowing she would be home early). Sure enough the call came at 2 p.m. to come pick her up. Since she has been running a temp for 3 days, I decided to take her to the doctors. They tested her for strep and the flu and both were negative. Guess it is just a viral thing. She now has the pleasure of staying home with us tomorrow. Hope she feels better soon.

This Wednesday we meet with the eye doctor to hear the results of Jared’s vision therapy evaluation. I know without a doubt that they are going to recommend it for him. From what I see and hear, this may be a great thing for his reading processing skills.

Now our issue is getting the school to make it part of his IEP plan. As of right now they do not want to do this. I understand them being leery of it but I also think they may be overlooking something very beneficial to Jared and other children. The school district (or the ones who make the decisions) do not feel that vision therapy is an evidenced based therapy and therefore are not interested in making it part of his IEP. I disagree with that thought. You have to consider to that if the school district approves it, it will be an “out of pocket” expense for them. I are sure that somewhat plays a part in it. If I could just convince them to try it, I would be happy.

However, at this point all I can do is wait to hear the outcome from the vision therapy evaluation and the recommendation. Then I can present the information to the school. If they still refuse to include it, then I will investigate how to file a grievance to get it reconsidered and our rights under PA law of the disability act, just so I know where we stand and what I can do. If anyone has any suggestions please shoot them my way.

Our school has been terrific in dealing with us. My only concern is that I feel we are not doing enough. Sure we have an IEP for Jared, he is pulled out for special reading and he is able to read at his own level (which is great). But what are we really truly doing to get him to read at his “grade level”. He may or may not ever be able to read at his grade level. I understand that. The final outcome is unknown at this time.

But the way I see it, we need to look at why is reading so hard for him? Is it letter recognition? Is it comprehension? Is it a processing error in the way his brain interprets what his eyes see? I am not sure. But if I had to guess (from what I see every day when he and I read) I would say it is the processing error. There has to be a way to “fix” it so his brain “sees” what his eyes “see”. That is my goal. And I think that pursuing vision therapy is a GREAT place to start. I will do whatever we need to do for Jared and to get him the services that he needs.

So that being said, Any of you with experience convincing the school system to do something you want or if you have information about where to go to find out these answers, shoot me an e-mail. Your help is needed…………………… I know there are websites for these questions too and I plan on checking into that. Wish us luck this week. May we get Jared what he needs to prosper?

This past week of five working days in a row was a little tougher than I thought it would be. I say that, but I am not really sure if the achiness in my leg came from working 5 straight days or the rainy weather. Anyways, I made it through my first full week of work.
One of the Nursing Supervisor’s who works 3 – 11 p.m., went to see Dr. Oplinger this past week. She asked me if I wanted her to tell him anything for me. I said, “Yea, tell him I need another few months off work” (joking of course). Well he wouldn’t do it, imagine that. He asked if I was listening. Which of course I am.

I am allowed to do anything except run or pump hard up a hill on my road bike. But I have not done either one of these things. Not because I don’t want to but instead, because I cannot do them and I am not allowed to do them. My leg is not ready to return to my pre-injured activities yet (I wish it was though).

Remember to keep Brandon Loose and all those battling in your prayers. May they find the perfect pain control and level of pain control for Brandon.

Do not forget Brandon's ham sandwich sale. I will be selling sandwiches until Oct 10th. I am hoping to present Brandon and his family with some financial assistance that they are in need of right now.

If you do not want any sandwiches but instead want to make a donation to the family, you can do that too. Anything or whatever works for you.............

Thank you

Connie

Tuesday, September 23, 2008

Well so far the back to work thing is working out well, except for the sleep. I really am going to have to work at turning myself back into a day time sleeper. I was totally spoiled for the past two months. Makes me want a day shift job , but I will hang in there on the night shift routine for now.,

Two weeks ago they had back to school night and I had the opportunity to meet Kirsten’s teachers. Kirsten loves school this year. They have a point and reward system at school this year that makes her want to do well, and be rewarded. The past week Kirsten picked to have lunch with her teacher (Miss Stone) and to have her teacher call home and talk to us. So last Friday Miss Stone called us and told us how well Kirsten is doing and how much she enjoys her in her class. That was neat. It is a neat idea too because it gives the kids something to strive for. Kirsten has turned into a book worm. She always has her nose in a book. I am glad she rediscovered her love for reading. Let’s keep it going.

Jared has really been into reading too. He is to read 10 minutes every night, but he does not want to stop there. We will read and then he will ask:
(Jared) how long have I been reading?
(Mom) 14 minutes
(Jared) is that more or less than 20 minutes?
(Mom) less than 20
(Jared) oh, well then let’s keep reading
(Mom) OK

And he does this every night when we read. It is funny because we literally have the same conversation every day. Except sometimes, I tell him how long we have been reading and I let him tell me if it is more than or less than 20 minutes. The 10 minutes he is suppose to read, is not his goal. His goal is 20 minutes. More must be better? (I think it is)

Last weekend we went to Hershey Park. We had those tickets we wanted to use before the regular season ends this coming weekend, so we headed there after Kirsten’s soccer game on Saturday. I have never seen so many people there. The lines were LLLLLOOOONNNNNGGGG!!!!!!! I mean literally. We stood in line about an hour for each ride. We arrived around 1 p.m. and left at 6 p.m., in that 5 hours we were on 4 rides. Yes, four rides in five hours. That tells you how long the lines were. The time in the lines really did go kind of fast for the most part. We had the opportunity to talk to each other. The kids were forced to talk to us since they could not get away (just kidding). They did have fun on the rides we ended up getting on. Our true intention was to stay till 10 p.m. when the park closed, in hopes that in the later evening the people would thin out and the lines would be shorter. However, we never made it that far. The kids were tired, Kirsten’s legs hurt, my legs hurt, it was warm and we just decided to hang it up and go home, so we did.

Kirsten and Jared love roller coasters. When we were waiting in line, Jared would say, is there a big hill in this one because I am scared of big hills? No matter what the ride was, we would say “no”. At the end of the ride, Jared would say, “There was to hills and that was freaking AWESOME” with a big smile on his face. Now “freaking” is not my favorite word in our vocabulary, but he definitely did get his point across to us. It was fun but it could have been better with less wait time. But that is what amusement parks are all about. Oh well……………

Kirsten ended up spending the night at Kia’s house. And Jared, Mike and I just hung out and had a relaxing evening at home, at least what was left of it. Jared and I had a sleep over in the living room that night. Lucky Mike had the bed all to himself.

We are already thinking about THON. We received our first mailing from Four Diamonds and before we know it, it will be February. We love and look forward to THON every year. We are hoping to be able to pull off another canning weekend near our house this year. That was fun last year.

Well I hope everyone has a great day. God bless
Connie

Thursday, September 18, 2008

Tonight will officially be my first day back to work.

Wow, it will be strange. I have been off work since July 10th. It seems like so long ago. Now I must admit I have kind of become accustom to being off work, being a little “lazy”, spending time with the kids and best of all Sleeping at night again. I am not really sure which of these things I will miss the most.

I know staying up all night and sleeping during the day will be a tough challenge again; one I am actually dreading. That is at least until I get back into the night shift swing again. My only worry is I will become tired and grumpy. OH I really hope I do not. Night shift does something to you and your body. I just can not explain it to you folks who have never worked night shift.

For instance, besides just sleeping at night, I am use to at least 8-10 hours of sleep/ day. When I go back to work that will change. I will be lucky to get 6 – 7 hours. In turn, I will be tired and slightly more irritable. I do not like that idea.

The past month, since the kids have been back in school; I am use to picking Jared up at school every day, helping the kids with their homework, reading books, eating supper and then off to practice by 5:30. It has been great and relaxing. I pray with all my heart I am pleasant.

Enough about me, we shall see how it goes.

We took Jared to get tested to see if “vision therapy” may benefit him and his reading. We will not know the results for 2 weeks. So we will wait and see. A fellow mom on the NB list serve was kind of enough to provide me with information and personal testimonial of the success they see with their son. It sounds great. Her son has shown great improvement and he had the same symptoms Jared displays. I am praying it works for him. I am very anxious to hear the evaluation and see what the plan of treatment is.

Jared continues to read every day. He actually loves doing it, even though it is not easy. He is getting rewarded at home and at school for reading. SO he is getting a double reward. Who said bribery will get you no where? Oh wait, maybe it was that you weren’t suppose to use bribes, not that it wouldn’t work. Well whatever………………………………

I actually spoke to Dr. Grupp and reviewed some of Jared’s information with him and he is running some things by someone at CHOP for me; then he is going to get back to me about some direction to go. I had e-mailed him about the late effect doctors at CHOP and was impressed when he called today and took the time to discuss all of these issues with me. I know he is very busy treating sick kids who have active cancer, so the fact that he cared enough to call was fantastic. We always did like him. Yea,his specialty is treating cancer, Neuroblastoma in particular, but he is not too busy to discuss a learning issue with a mom of a kid who is 5 years out from diagnosis, now that is caring. I hope he can provide us to with another avenue I have not thought of.

This weekend we are planning to go to Hershey Park. Our tickets expire next week and I am now able to go, per the orthopedic.

That is it for now. See ya later. Oh one more thing, do not forget about the ham sandwich sale for Brandon's Loose and his family.

C

Tuesday, September 16, 2008

AN IMPORTANT UPDATE:

I HAVE FINALIZED THE PLANS FOR THE BRANDON LOOSE FAMILY HAM SANDWICH SALE/FUNDRAISER.

SALES WILL START IMMEDIATELY AND THE SANDWICHES WILL BE DELIVERED ON OCTOBER 17.

THE SANDWICHES ARE $3.00 EACH AND ALL THE PROCEEDS WILL GO TO THE LOOSE FAMILY.

IF YOU WANT TO OFFER TO SELL SANDWICHES AT YOUR WORK OR TO YOUR FRIENDS, LET ME KNOW AND I WILL FORWARD YOU AN ORDER FORM.

ALL YOUR HELP IS NEEDED AND APPRECIATED.

ALSO ANYONE WHO WANTS TO HELP PUT SANDWICHES TOGETHER, LET ME KNOW AND I WILL TELL YOU WHERE AND WHEN.

I AM HOPING THIS SALE WILL BE VERY SUCCESSFUL FOR BRANDON'S FAMILY FINANCIALLY.

I WISH THERE WAS MORE I COULD DO FOR THE FAMILY, BUT BESIDES PRAYERS, THE ONLY OTHER THING THEY NEED HELP WITH IS FINANCES. SO NOW IS OUR TURN TO HELP OUT A FAMILY IN NEED.

DON'T YOU WANT TO HELP TOO????

Sunday, September 14, 2008

Yesterday we did a gold balloon release for National Pediatric Cancer Awareness Day. Before we released the balloons we wrote notes on each balloon like
1) Jared is a survivor
2) In memory of ……………..(then listed some kids names who are no longer with us due to cancer)
3) In honor of…………(listed those who are battling cancer or survivors)
4) The date, city and state we released them from
5) Why we were releasing them (in honor of Pediatric cancer awareness)

Now a few day or weeks from now if someone finds those balloons somewhere, they will know why they were released and it may bring their attention to Pediatric cancer.

You know it is funny that when I walk through the stores, I see pink “breast cancer” stuff everywhere. And National breast cancer month doesn’t even officially start till next month. Where is all the GOLD for our children lost, won or still fighting?????? I mean no disrespect to breast cancer battlers or survivors. I think it is great. I just wish that pediatric cancers received the same recognition and respect that breast cancer gets. I am not sure how to even begin to get “us” to that level. I am sure a lot of work was done to get there. So, someone, or anyone, if you know how, please advise me, I am waiting and willing to try about anything I can.

So as I have said many times about Jared and his difficulty reading……Mike and I were talking the other day and Mike said that maybe we should tell Jared that his difficulty could be from the treatment he received. Maybe that is something he needs to hear and can understand now. So anyways, Friday after school I took the kids to the library for our book swap. Jared wants books to read but only wants to read certain books and they are not really books that are at his reading level. I really have to do some quick talking to get him borrow books that are appropriate to his reading level. Anyways, after a while he picked out a book then he looked at the Where is Waldo books while I looked for some more books I thought he could read and would enjoy reading. I think we hit a home run because when we came home, he sat in the living room and read aloud a Dr. Seuss book; only coming to me when he had a word he could not figure out. We are now also rewarding him with bakugan’s. Jared gets one every week for reading 10 minutes a night.

So anyways, when the kids and I got home from the library, Mike and I decided we were going to talk to Jared about reading. Mike started by asking him if he remembers when he was really sick? Of course he did. Mike then told him that the medicine they gave him to make him better could be what is causing him to have trouble with reading. We went on to explain that the medicine effected how his brain interprets what he sees. His first comment to us was, “So if I did not get that medicine I would be smart (with a big smile on his face)”. We told him, “YOU ARE SMART!!!” The medicine may affect how his brain sees things, but that he is a smart little boy. We assured him that he can read he just has to work at it harder than others do. Our conversation went on for a few more minutes and at the end, we could tell that he felt better. I think by us telling him these things, he realized that there may be a reason for his difficulty. We think that prior to this talk; he looked at himself and wondered why he was behind all of his classmates. We actually know he wondered this, because he told us. Now he has a rational. He has a reason. He looked so relieved after we told him this. I am glad we did it. He needed it.

I was reading this article that Mike found for Psych class and it was about cognitive remediation therapy post treatment. It is suppose to improve academic performance and so forth, so I am going to look it up and see what I can find out. Also, on the NB list serve there was a dad talking about his son in visual therapy, I plan on talking to his wife this week to find out what that is too. Anything to make it easier for Jared. We meet with Jared’s teachers in about a week or so to go over his IEP for this year. We just want to have our ducks in a row so we know Jared is getting what he needs to succeed.

Kirsten enjoyed the library too. She is into the American Girl Doll books. She found one named Kirsten who is even spelled just like her name. She has been reading it on and off all weekend long. Kirsten also gets rewarded for reading. She gets $3.00 a week or a special surprize (at her request).

Kirsten had her soccer game on Saturday. They lost but played well. It is frustrating to Kirsten because last year in the spring she played soccer and loved it. The problem this season is she wants to play front line but the coach keeps putting her in a defensive position. Kirsten does well at defense but in all reality she is a better offensive player. You need your “big leg” girls in the back to protect your goal and that is not really Kirsten. She does better at front line. We as parents have decided to keep out of it. Kirsten knows what she wants to play and keeps bugging the coach to put her up there. She is perfectly capable of voicing her own mind and standing up for herself. I guess as the coach she has to look at the team as a whole, where I am just looking at my daughter. Saturday Kirsten did go in as frontline for a brief period after continuous pestering and when she did our team was at the goal the entire time taking shot after shot, but their goalie was good. Anyways, it will all work out or Kirsten will decide not to play again. We shall see.

Jared had his football game today and it was ended early. Our team has some bigger kids on it (they actually are above the weight class for the smurf team). Remember we did not have enough smurf players that they brought some pee wee players down to our level that met the age requirement but they do not meet the weight requirement. My understanding was that the other teams would know this ahead of time and decide if they did or did not want to play us, their decision. The other team made inappropriate comments during the game and finally called the game off before the first half was even over. In a way I do not blame them. I would not want my 60 pound kid tackled by an 80 or 90 pound kid either. Why risk them getting hurt. I guess the coach of the other team had to do what he felt was right for his players.

Last week I ended up getting a speeding ticket one evening. Of course, Kirsten was with me when it happened so I could not say anything to the police officer. I just gave him what the needed, took my ticket, thanked him and drove off on my merry little way (only slower this time). It was funny because normally I would have tried to get out of it but with Kirsten in the back seat it did not seem appropriate to plead!!! It felt so wrong to do that. Here I teach my daughter that if you do not follow the rules you pay the consequences, so pleading would have undermined everything I teach her. So, that being said,

Teaching your daughter that you pay a price for breaking the rules $158

Having to live your own advice and hating it Priceless

Lastly I am going to be having a ham sandwich sale for Brandon Loose and his family. Anyone interested in selling or ordering sandwiches, please let me know ASAP.

Connie

Sunday, September 14, 2008

Yesterday, September 13, 2008, we did a balloon release for Pediatric Cancer Awareness Day.

Monday, September 8, 2008 7:44 PM CDT

I think summer is about officially over now.

The day before Labor Day we had a picnic with some friends and some family, and then we went to the high school and watched the fireworks. Our seats were up close and personal to the fireworks. Jared yelled and carried on with excitement throughout the entire event. It was funny to watch him. Kirsten and Kia just sat back and enjoyed them.

On Labor Day we took the kids to the Boiling Springs pool to swim. They welcomed summer in by swimming in the freezing cold water at the pool and decided to say good bye to summer the same way. The water actually was not that bad, probably in the 70’s. Now that is colder than our pool, but it was definitely a swimmable temperature.

We have still been able to enjoy our pool the past week; especially since the temperatures had been in the 80’s. Our pool’s temperature is ranging around 78 – 80 degrees, which is actually pretty good for September. This week the temperature is to be in the 70’s during the day and 50-60’s at night, therefore, I would say we are probably done swimming. We will see…………

Saturday Kirsten had her first soccer game. They lost 2-0, but that was no big deal. This is a new team for the girls and they are still learning to play with each other. They played really hard and that is all that counts. It was pouring down rain during the entire game. As long as there is no thunder or lightening, the game will go on, and it did.

After the game we came home and jumped straight in the pool to swim. What the heck, we were already soaking wet? The kids had a blast. They were in their inner tubes making big waves and jumping all around.

It was the most fun we have had in the pool this week. I hope we can get another week or two of swimming out of it, but we will have to wait and see.

Today (September 8) is Mike and I’s 18th wedding Anniversary. We did not have anything special planned to do. A matter of fact, Mike actually has school tonight, so it was just the kids and I. Maybe we will celebrate another day this week. We just enjoyed each other’s company today. After 18 years that is enough, just him and I uninterrupted.

School is a little overwhelming for Mike this semester. Hopefully it will calm down a bit as he gets further into it. About now, he is wishing he was back working at Lear, but that is not going to happen. He just has to decide what to do. He is going to continue with the schooling as long as he can do it. He worries so much each semester, but in reality he does fine. Actually he has made the Dean’s List each semester. I just keep supporting him and telling him to do what he wants to do and what feels right to him.

Jared has begun a new readidg technique. Dad actually started it the other day. We write 6 words on a chalk board and he then tells us what they are. It changes it up and keeps him wanting to do it. So tonight instead of reading for 10 minutes I wrote words and he then told me what they were. We will do this till this technique becomes boring and uninteresting then, we resort to something else. Any ideas, shoot them my way please.

In Septembr and October there are teleconferences being offered by "Beyond the Cure" that deal with the late effects of chemo on children's cognitive function and some successful suggestions to over come these challenges. I am looking forward to participating with them. I am hoping for some insight into teaching technique or style that may be helpful.

Well I am enjoying my last days off work. I know after I go to the doctor’s next week (Wednesday) I will be going back to work. I am ready to go back but I am also enjoying being off, that is now that I am mobile on two legs.

This past weekend I started putting photo albums together. I have pictures on piles and completely unorganized since 2001. I am now up to 2003 with the albums. My goal is to get them done before I go back to work. Let’s face it, if I do not do them now, I will never do them.

God bless and please keep Brandon Loose in your prayers.

Connie

Thursday, September 4, 2008

Not many people know this but this month (September) is Pediatric Cancer Awareness Month.

It is a shame there even has to be such a thing for children; but unfortunately there does. We, or I should say Jared, is living proof of that.

It brings us great joy, to be able to say that Jared is a 5 year cancer survivor this year. That is right, FIVE years!! It literally seems like yesterday we went through all of that, but in reality it was a lot longer than that.

On July 15, 2003 at the age of 2 years and one month, Jared was diagnosed with Stage IV Neuroblastoma. Who would have thought that five years later he would be here, healthy, in second grade and cancer free?

If you would have asked me 5 years ago what I see our future to be, I am not sure what I would have told you. I always made an effort to be positive, but let's face it; most kids with Stage IV Neuroblastoma do not make it to where we are. This is the hard cold facts.

We really are a blessed family. All I have to do to realize this is to look around a little. Believe me; I know plenty of families who are without their child, due to Neuroblastoma. I thank God everyday that we are here and healthy.

I can not seem to get away from the Neuroblastoma world. I still continue to follow other kids in the battle. I wish there was something major I could do to raise money for cancer research. Oh do not get me wrong, I have tons of ideas, but I lack the ability to make them transpire and happen. Well, not that I lack the ability but it is not an easy project to take underway. I keep thinking one of these days I really will pull something major off.

You know what it funny is how Mike and I think about Neuroblastoma. It is a frequent topic amongst Mike and I, not necessarily in front of the kids though.

Since Jared was so young (2-3 years old) when he went through his treatment, he has forgotten most of it. Now forgetting is sometimes a good thing, especially when it comes to the parts where he was in pain, had mouth sores so bad that the inside of his mouth looked like raw meat and was bleeding, he was nauseated and so forth. But I also think remembering some things is a good thing too (guess it depends on what you are remembering).

Jared doesn't remember much at all, not even the naso-gastric feeding tube he had in his nose that went into his stomach to feed him or the central line that hung from his chest.

Jared does remember the squirt gun battle (syringe filled with water) that he squirted Dr. Grupp with when he visited Jared during a bath time one night. Now the reason he remembers this story is because we have told it over and over again. How he squirted Dr. Grupp's pants with water and it looked like he peed himself. Which always makes us laugh and laugh. When we visit Dr. Grupp we always talk about this episode too and laugh some more.

To me Jared overcoming his cancer has been a story of success. A reason to celebrate. Not one to stick our head in the sand about and hide.

Q. Do I want Jared to realize how the odds were stacked against him to survive this disease?
A. Not if it means he needs to worry about relapse (let the worrying to us adults) But yes, if it shows him he is a fighter from the beginning.

Q. Do I want Jared to remember he had a pediatric cancer?
A. Not if it makes him different but yes so he realizes why we are so blessed (because we are). Again, he is a survivor.

You know it was funny the other week; I was on a website reading a journal update of a child with cancer and on the site was a picture of a child with no hair. Mike was sitting by me and was Ok with this, until Jared came downstairs. Then Mike wanted me to go to something else so Jared did not see the bald headed kid. I was confused about this situation. Jared remembers being bald. It doesn't seem to be a big deal with him. I get it but also I do not get it.

OK, cancer is not a very friendly word. It is not a word in particular that I like to use in front of Jared or Kirsten. The reason is that the word "cancer" is frequently related to or linked to death. And I in no way want Jared or Kirsten to think that about Jared's "cancer" in that way. Yes he had Neuroblastomaand was very ill but that is over with now.

We usually refer to Jared's illness as Neuroblastoma or a tumor. He knows that when he was sick, they took a tumor out of his belly and got rid of it. A matter of fact, when Jared was going through this we made a joke about them "cutting his tumor out and throwing it in the trash can" This is something that made us all feel better, to get it out and throw it away.

I think Jared should know he is a survivor. To keep things a secret and not talk about it front of him, on purpose, makes it seem like something "bad". It could've been something bad but it turned out to be something good for Jared. Not that I think we should talk about it every day, but if it comes up, I think we should not be afraid to talk openly about him having Neuroblastoma and now he is well and doing great. No, I do not wish to share with him or Kirsten all the children who are losing the fight with Neuroblastoma. Again, I do not want to worry them.

You know it is funny because if Jared sees something for St. Judes on TV, he will give it his 100 ttention. He one time even told us that he is a "survivor" and we told him, yes he was. So maybe he remembers more than we give him credit for.

Just because we do not talk about it, doesn't make it go away. There are still 650 kids a year diagnosed with Neuroblastoma. Most children already have metastasized (spread) disease by the time they are diagnosed. Fifty percent of kids with Neuroblastoma will not survive. That is a fact!!! Whether we talk about it or not these statistics will not change.

So in closing, I will soon be starting our annual fundraiser for Lunch for life. Look for a future e-mail or letter coming your way. Continue to keep all the families battling the disease and those living without their children in your prayers. I know this past weekend there were 3 children who lost the battle with NB and went on to heaven.

Connie

P.S. This friday there is going to be "Stand up to Cancer" on TV at 8 p.m. To raise awareness and funding. A few channels have teamed up to provide this show and a bunch of singers have written a song they will sing for Cancer. Watch it if you get a chance.

Sunday, August 31, 2008

It is with sadness, I add this morning, that Arden passed away yesterday. Please say a prayer for her family.

Saturday, August 30, 2008

First off there is a little girl named, Arden, who is in PICU at CHOP. She has Neuroblastoma. During her transplant she developed some breathing concerns and ended up on a ventilator. That was in July and she is has not made the turn around yet, that they would like to see. With her infections and other issues, she is in need of some extra prayers right now. Please say an extra prayer for her and visit her site at http://www.caringbridge.org/visit/ardenquinn and leave her parents a message of support. I know they would love that.

We made it through the first week of school and so far, the kids love it.
Kirsten has not had any homework to do yet. The highlight of her week was decorating her locker. Oh I remember those days.

Jared had a great week too. His teacher did some fun “getting to know each other games” and it was a big hit. Every day when Jared came home he was excited to tell me about his day. He loves second grade; which thrills me. I only pray he maintains this enthusiasm.

Jared is really getting into reading now. He continues to read 10 minutes a day. Friday after school we went to the public library. The kids each picked out 4 books and a movie. They loved it. We have not been to the library for a long time. That is something we should do more often.

Anyways, we went and found Jared some of his favorite books about “Fly Guy” by Tedd Arnold. There was actually only had one fly guy book, but we were able to find other books by the same author that we could read. Oh you should have seen Jared looking at books and playing with the puppets that they have there; it was funny.

So I made a deal with the kids, we would read these books and then next Friday we will go back to the library and return these books and get new ones to read. They thought that was a great idea. The library idea was a great thing to get them interested in books. Now let’s hope the enthusiasm last forever……………..

Last night we took the kids to the first high school football game. It was at Big Spring, which is close by. We won, hands down. The kids ran around with their friends the entire time, checking in with us once in a while.

Today we are off to Millerstown for a football game for Jared. Millerstown is about an hour away from us. We have to head up 22/322 to get there, which is the same way the traffic goes, to the 12 noon start, Penn State game. I am sure traffic will be a challenge this morning. Jared is loving football and it has been great for his socialization too.

Labor Day is just around the corner. We are having some people over on Sunday night to picnic and then head to the fireworks at the high school. Should be a fun time.

The countdown continues till I go back to work. I assume, right now, that I will be going back when I see the doctor on September 17th. I am glad I can now walk on my own two feet without crutches. It is fantastic. Now it is not yet “normal” or like it was, but I guess it will come with time. I started riding a stationary bike as the doctor directed. As he said,”Motion is lotion to the joint.” The only thing is I had to ask Mike how much is enough vs. too much? 2 miles ? 5 miles? Or what? Sounds crazy but I am someone who could, out of the blue, jump on my real bike and ride 10 - 15 miles without even thinking about it. Even if I have not been on my bike for months, I could still do it. Guess my motto always was, “go for it, no pain, no gain”. Well now at the ripe age of 38 and now having a stress fracture I have to think about these things a little more and be a little more sensible. Darn I hate getting older.

Everyone have a great Labor Day weekend.

Wednesday, August 27, 2008

The first two days of school went off without a hitch.

Kirsten came home yesterday and was so excited to tell us everything. She loves her two teachers (Miss. Stone and Mr. Boyer). She thought it was funny that her dad had Mr. Boyer when he went to school (yes over 20 years ago). Mr. Boyer told Kirsten he remembers Mike too. “Oh I hope he was remembered for a good reason and not a bad one” (Just kidding about that). Mr. Boyer told Kirsten that he still has his grade book from when he taught Mike and he is going to look up Mike’s grade and tell her what it was (please…… please….. please…… be a good one).

Kirsten is so excited about decorating the inside of her locker. She took pictures and magnets to school today and now she is shopping with a friend in hopes of getting a mirror for her locker. “A girls gotta look her best”. So there you go, that is the start of 4th grade.

Now for 2nd grade…………….

The first day Jared came home from school and was happy too. He told me,”Mom you were right, my teacher is rrrreeeaaaallllyyyy nice!!! I said, “I told you so.” He loves Mrs. Harris. So far it is fun and games. Even their homework so far has been fun. Today was library too. He brought two books home and right after we did his homework he wanted me to read him the books. But actually I had him help me. He did the words he knew and could sound out and I did the harder ones with him repeating them. So we actually read it together, it was fun.

Well that is a quick story on how the first day of school went. I hope the next 178 days go that well and the kids maintain their enthusiasm for learning.

Connie

Tuesday, August 26, 2008

Today was the first day back to school for the kids. (That is why I chose purple and gold as the colors, school colors)

Every summer we have good intentions of getting our kids into good habits prior to the start of school in regards to getting up early, to bed at a decent hour and so forth. Well here is another year that we waited till the school year began to start these good habits.

We left the kids stay up till 10 last night because they were not tired. Our great idea to get up really early yesterday morning was blown, when we left the kids stay up late Sunday night to watch the ending ceremonies of the Olympics.

My personal thought is that tonight will be our turn around night. The kids were up before 7 this morning, will have a full day at school, homework (possibly) and then football and soccer practice tonight. I figure that should be enough to tire them out and get them to bed on time tonight…………….we shall see though.

Last night the kids had their clothes laid out that they were planning on wearing, the back packs were packed and they were all ready.

This morning we actually went to the grocery store before the buses came and purchased apples for their teachers. (Dad’s idea and the kids loved it).

Both our kids were the first ones on their buses this year. And they each took the back left hand seat when they got on. It was strange them getting on two different buses this year.

(Kirsten and Jared goofing off and making faces when I asked them to give each other a hug)

Kirsten has been bragging it up all weekend that her bus comes 18 minutes after Jared’s bus. Therefore, she can sleep in later. But let me tell you that will not happen. Or put it is this way, I do not think it will happen.

Jared is the boy who can get up and ready in 15 minutes if he had too (although he doesn’t do well if he is rushed).

Kirsten is the one who takes the 30 minuet shower and another 30 minutes to try on 10 outfits till she decides what to wear and so forth. So in reality, Jared leaves first, but I am sure he can get up last. Time will tell.

Kirsten is excited and nervous about going to 4th grade and starting at a new school this year. I am sure when she gets to school today and finds out who is in her class, she will be OK. She is excited about having a locker this year and two different teachers.

Jared seemed OK about going to 2nd grade. He didn’t really say much. I keep hyping it up for him about how much fun he is going to have and how much he will learn.

I can not wait till they get home and tell me all about their day. I really was looking forward to them going back to school but now I miss them already (typical mom).

I will update later on how their day went.

C

Saturday, August 23, 2008

Thursday night was parent's night for second graders. I was so impressed with Jared's teacher. She has been teaching for years and you can tell she loves her job. We really are lucky to have been placed in her class. Her enthusiasm for teaching and her kids learning is fantastic. This is going to be a great year.

Thursday night I came home from the meeting and was telling Jared about his teacher and class room, some of the things they are going to do this year and we looked at his teachers pictures in the yearbook so he knew who they were.

This brought up another subject...............Jared told me he does not like being pulled out of his regular class to go to reading. He wants to stay in his regular class all day. So we started talking about reading.

Reading is challenging to Jared. He can do it, but it is work. But because it is work, he is not always eager to do it. Sometimes it is very difficult to even get him read. He will just refuse to do it.

Well we talked about how reading is not easy. But the more you read the easier it becomes and the easier it becomes the more you want to do it. I did tell him that he can be a good reader. But being a good reader takes practice, which means he has to read. Yes, I know it is hard, but each time he reads it will get easier. (Of course we will read books that are at his reading level and not overwhelming). He really wants to improve and so starting Friday night we were going to start reading 10 minutes every night. It was a deal.

So, Friday night comes and we read 10 minutes. (Great job Jared). We read out of a book that his reading teachaer gave him last year. Of course, this is the only book he will read, and he did great. So here we are done reading and he is sitting on the couch and we are talking about reading and he tells Mike and I. "You know I am the only one who can't read. All my friends can easily read books." (A matter of fact he told us his friends can read chapter books). "I want to read like they do. And I don't know if I can read like them" Well let me tell you, when he said that, it darn near broke my heart!! Because he meant it. I actually had to put my head down because it was so sad to hear him say that, that it brought tears to my eyes. It is so hard to watch your child struggle at something. I mean I already knew that it was a challenge for Jared to read and it was not always easy, but when he compared himself to others and verbalized that he was not at the level they were and it bothered him, that did hit a cord with me. It broke my heart to hear him say it out loud.

We told him he can read. To which of course he told us, "not as well as all of his friends can." So that set up the challenge. We promised Jared to read at least 10 minutes with him everyday and he agreed to that too. He told us how he wants to be able to read "adventure chapter books" by himself. So that is the goal. Of course we told him chapter books will not happen overnight but that is the goal we would work toward. Until he can read chapter books, we will read them to him. So Mike started a chapter book with him, that they will work on a little at a time till Mike gets it read to him.

You know it is funny becuase Mike and I knew Jared had a hard time reading. That is why he does not want to do it. So what we need to do is provide him with a very positive atmosphere and encourage him to continue it. He now has a goal. He wants to meet his goal and our job is to help him get there.

I really feel like we had a break through last night. I honestly know in my heart that if we keep up the encouragement and positive reainforment, that reading can be a great thing for Jared, he just needs the confindence to do it. We are now one step closer to his goal.

Tonight when I told him it was time to read the 10 minutes, he said, "No" then immediately said "Ok let's go" and he did it. This in itself is an accomplishment. I love it.

So we are now on a goal to help Jared read better and he is on board with our goal too. It is fantastic. Wish us luck.

I am anxious for the kids to start school next week and see how they can prosper and grow.

C

Thursday, August 21, 2008

Jared had his first football scrimmage last night. It was funny. I have to share this one incident with you all, because it was cute.

So to set the scene, we are on offense
The play is started
The ball is passed
One of our guys is running 40 yards for a touch down
Now as the touchdown is being scored
You look back at the 40 yard line where the play began
Jared and the guy who was guarding him are trying to wrestle each other to the ground.
Hip hip hooray, they finally do it.
They are both down.........

The funny part:
They are oblivious to the play down the field where a touchdown is scored
All they knew is the guy if front of them, who was from the opposing team,
Was there responsibility and they took care of it.
Period, that was it
It was that simple.

That is a cute example of Jared's first ever football situation. Now as the game progresses and his knowledge for the sport broadens I am sure he will figure out there is more to the game than that. It will be a funny story to share with him later on in life.

Well I went to the orthopedics yesterday. I am weaning myself off my crutches over the next few days. I can put weight on/walk on my left leg now. I am still on a 10 pound weight restriction when it comes to lifting. Therefore, I will be off work for another 4 weeks. I can not go back to work until I can return to my full duties with no restrictions.

The kids start school in 5 days.....yes I am ready for that!!!

God bless

C

Monday, August 18, 2008

We are back from our short shore trip.

The kids had a lot of fun. They love jumping and riding their boogie boards in the waves. There were some great waves too. The kids even got wiped out by a few waves, but i guess that is what makes it challenging and fun.

Like I said before I left, I would not be able to get into the ocean but was able to sit my chair at the water's edge and feel the water splash on me. It was not the same as getting in, but it was the next best thing.

The trip was nice for the kids. We did the board walk one night and did some shopping. That is where the wheelchair came in handy for me, the kids and Mike took turns pushing me. One night of that was enough for us all though. Being in a wheelchair was more difficult than I would think.

The kids and Mike played miniture golf one night too.

Saturday we linked up with Mike's sister, Linda and her husband, Tom at the beach. It was nice because it gave the kids someone else to play with in the water. Then we all went to lunch before we headed out of there to come home.

Wish our vacation could have been longer and without crutches and wheelchairs, but it was not. So maybe next year?

The kids just making funny faces at me.

Mike starts school tomorrow. He will be busy then with school on Tuesdays and Thursdays.

The kids have one week yet to go till there school starts.

I go back to the doctor's this week and see if I am allowed to walk yet, keep your fingers crossed.

P.S. If anyone is interested.......Lunch for life is putting together another recipe book as a fundraiser. Right now they are looking for recipes to put in the book. If anyone has any recipe they would like to be included, just e-mail it to me and I will send it on to them. Add as many recipes as you want and any type, it is free to do this. Think about what your favorite dish to make is and share it with others. The dead line for sending recipes in is August 24th, so if you want to help you must do it very soon.

Connie

Tuesday, August 12, 2008

Where to begin..........

First off, I have really been following a few children in their battle against NB. Please keep those children and families still battling, in your continued prayers. Below are some children's websites. Some are in initial treatment, relapse treatment or off treatment. Needless to say, they all need prayers for a happy and healthy life. If you get a moment stop by their web page and send your prayers.

http://www.caringbridge.org/pa/brandonloose (In relapse treatment)

http://www.caringbridge.org/visit/ardenquinn (In PICU at CHOP)

http://www.caringbridge.com/visit/adrianagunty

http://www.caringbridge.com/visit/ryanschrack

http://www.caringbridge.com/visit/colefitzgerald (NED)

http://www.caringbridge.com/visit/jacksonboyd

http://www.caringbridge.com/visit/alexabailey (In relapse treatment)

http://www.caringbridge.org/visit/jacksonschneider (In relapse treatment)

http://www.caringbridge.org/visit/adamjamesschmaltz

http://www.caringbridge.org/visit/lane

http://www.caringbridge.org/visit/emmyspicer

http://www.caringbridge.org/visit/samuelphilips (in transplant at CHOP)

All the notes in the guestbook entry last week made me realize that this page is for others as much as it is for me and the family. I am glad that we can make a difference to others. Thank you for your continued support too.

We are now really on the countdown till school. We have 2 weeks yet to go. We still have to go school shopping, but we will get it done soon. We have to; we are running out of time.

Last weekend we did something we have been talking about doing all summer and have not. We built a fire in the pit and sat there and enjoyed the warmth. Of course, the kids loved the part when Mike threw the old dry Christmas tree from last year on the fire. Talk about a blaze. There is nothing that shoots flames quite as high as an old pine tree. Now you know why you need to be sure to water your Christmas tree when it is in your house. No the tree was not in our house till now :). We threw it in the woods since last winter to wait till summer to watch it burn.

After we were all "camp fired out" we then settled into the tent to sleep for the night. Yes, us 4 and the 2 dogs. Can't forget Buddy and Angel. Of course since I have the stress fracture, I was the honorary one to get to sleep on the big pool raft. There is no way I could have handled the hard ground all night. The kids loved it. They have wanted to set the tent up for a while and we finally did it. It was great.

You know I feel like a big "loser" this summer. I have not been able to do anything that I would like to do. I love summer. I love swimming, riding bike, running, going to the park, taking the dogs and kids for a walk, walking around the lake and so forth. However I am stuck to do only those things that involve sitting. It could be so much worse, and I get that, but I just wish I could do what I want and have fun being active. Emphasis on "Being Active". Soon I will be able to just walk, without crutches. Hopefully in about 2 weeks.

We have tickets to Hershey Park but that is out right now too. I am hoping that we can hold out and go in September sometime. We may not be able to do the water rides due to the temperature but hopefully by then I can ride the rides. The doctor is thinking by mid-September I will be able to do this, we shall see. If not, Mike and a buddy will take the kids.

This week we are heading to the beach for a little get a way. We were suppose to go for 5 days but backed it down to 3 days now. With me on crutches, getting on the beach is going to be a challenge and I definitely can not get in the water, because I can't risk it with the waves and rip tides that can get pretty strong. The last thing I want to do is hurt myself, when I am so close to gaining my walking back. So I will be planted on the beach on a towel to watch the kids swim and surf the waves. I can deal with that. I will have all the time in the world to watch them and take tons of pictures. It is about the kids having fun and enjoying themselves. A friend of ours was able to get a wheelchair for us to use at the beach. So at least now they can push me down the boardwalk. On crutches we would not get far, that is for sure. Or, we can do Mike's scenario, to park me on the balcony with a 12 pack and then him and kids go have fun. I guess I can go for that too, whatever.

The other week I went to my 20th class reunion. You know that was the first reunion that I ever went to and it was weird, everyone was about the same as I remembered. The girls all looked the same. The guys were about the same, some bigger (muscular that is), some balder (that happens with age) but the same otherwise. It was nice. There were 22 of us who showed up plus spouses.

They are still trying to find scrimmages for the smurf football team. Jared is not sure if he likes football or not. He talks about wanting to quit and when we say he can, then he decides not to. I want him to wait till after a game. I think he needs to see what a game is like. I think the 4 nights a week of practice is what he doesn't like, and I do not blame him.

NEWS FLASH UPDATE: I had to put this update in here, because it was to funny. Jared came home from football practice last night (Tuesday) and he was smiling from ear to ear. He came running in the house and told me, "Mom I laid 2 kids out at practice tonight, one was a big kid, and he even cried". Now you have to understand at first I felt bad for this big kid that cried...........but then I got it. The kid was not hurt and Jared did not do this to be mean in anyway. He is just playing football. See, part of Jared's issue with football is that he is timid and shy at times and was not being aggressive. After a while you get tired of going to practice when you keep getting knocked down by other people (which is all part of the sport). So this is honestly what he needed to do to boost his self confidence and ...............IT WORKED!!!!!

I think I have said before how Jared struggles with reading. Well we had this bright idea to take him and get his eyes checked because we noticed that he squinted when he read. Honestly, I was praying that he had eye trouble. Not that I want him to need glasses, but I was looking for a quick fix to his reading struggles. Well his vision is 20/20!! It is not that. You should have seen him when he came out from his exam, he looked at me and said, “I told you mom, I can see fine, you just wouldn't believe me". Well what can you say to that? He was right. I was just hoping it was something that we could fix easily with glasses. Yea I know it sounds crazy. Poor little guy, guess he will just have to struggle it out till he gets it. I just hate to see him work so hard and become so frustrated. I pray this year; it just "clicks" for him.

Mike starts school next week already. I wish I could say he was enjoying his 10 days off, but he is working hard with yard work, hedge trimming, weeding and all that fun stuff.

Kirsten is busy keeping up with her friends. Either staying somewhere, someone staying here, going somewhere or having someone over to play. This girl is nonstop when it comes to socializing. She will always be my social butterfly.

She is funny, as I am typing this she comes in and asks if she can go get ice cream with the neighbor, I say yes and give her money. She leaves, then reopens the door, smiles at me and says, "Thank you mom, I love you, bye." Priceless.......we sure have been butting heads lately so I really appreciated that comment. She never ceases to amaze me at times.

Well that sounds like enough information for now.

God bless and keep our NB warriors in your prayers.

C

Thursday, August 7, 2008 9:32 AM CDT

Recently I have found myself visiting many children's sites who have or had Neuroblastoma. It is amazing to read the stories. (yea, a little extra time on my hands these days).

It is also amazing to see that most of the children, who are as far out from treatment as Jared, may still have web sites but often they go with infrequent updates or even no updates for months or years at a time. One assumes (or at least I assume) that no update means all is going well.

This makes me stop and wonder, why do I continue to update Jared's website? Jared's site was not something that was up and running when he was in active treatment. A matter of fact, it was not even implemented till after treatment was done and over with. So why do I keep it going?

Is it out of habit? Is it out of fear? Is there any purpose? Is it to share with others? I really don't know what the answer is anymore.

Yea, a lot of the stuff I type here is.....blah....blah.....blah to others. Plain old ordinary things. Big whoop? Well to some it is big whoop, but to me it has become my family journal. It may be boring at times, it may be funny at times, but it is something that tells who we are and what we are all about.

It something that I think, someday we will look back on and say, "Yea, I remember when we did that."

So who is the journal for? Me or other people? A little of both actually. It is for us in regards to remembering life, it's trials and how we did it. It is for others too, especially those newly diagnosed with NB.

You know there are a lot of kids diagnosed with NB and there are all kinds of outcomes to the treatment. It gives me great pride to provide reassurance to those newly diagnosed.

To say, "Hey look at us, Jared had stage IV NB in 7/2003 and here we are 5 years later, cancer free. You can do it too." It is like a means of support and to give people the positive to think about.

When Jared was going through treatment, I did not have a computer. I knew few people with NB, and only knew the outcome was not often a good one. Well we are here to show you can do it. You can beat the NB.

Yea, when I start talking all that positive talk, I want to cross my fingers as to not jinx us. But you know what I mean. I think people need to see a positive outcome and I pray we can always be that one to provide hope to others.

So whether this page is to help others (newly diagnosed), therapeutic for me, or for memories later down the road, I am not really sure, but none the less here it is. Read it if you want and leave us a message or don't if you do not want to. That decision is yours.

That being said, football is going OK. Jared was a little frustrated at first, the team was short 3 players and did not think they were going to be able to play games. Jared wanted to quit when he heard that news. He wanted to practice and play games. Do you blame him? So now they have a new attack plan. They are moving 3 kids down from the next squad up so they can have enough kids to play. This made the kids happier. Let's face it, who wants to put all those hours of practice in to not play? Not Jared, that is for sure.

I can hardly believe we only have about 20 days till school starts. My my how summer has flown by. Enjoy what is left of it. I know we will

Mike has his final today then he gets 10 days off school till the Fall semester begins.

I hope to be back at work in a month or so. We shall see.

God bless and take care

A QUICK UPDATE...........
the kids are thrilled today to find out their teachers for next year. Actually, I should say Kirsten is thrilled. The phone began ringing around 11:30 a.m. and was non-stop till after 3, when all her friends received their mail. So far she has found one friend who is in her homeroom. Kirsten is so anxious to go back to school.

Now Jared, he could care less who his teacher is and who is in his class. Must the diference between boys and girls. But we were thrilled to hear his teacher. I hear Mrs. Harris is great.

We look forward to a great upcoming school year.

Wednesday, July 30, 2008

Just a quick update. I went to the orthopedics today and the stress fracture is in the neck of my femur. It looks like I will be "crutching it" for another 3-4 weeks, then go back to the orthopedics, re x-ray and go from there. Looks like another 4-8 weeks off work.

OK the "sluggly" life style was not my cup of tea at first.

I have watched more TV in the past 2 weeks then I watched in the past 2 years.

Sadly, I must admit, I think I am now becoming accustom to it. Let's face it to be able to stay up as late as I want, sleep in as late as I want, have people cook for me, clean for me, do the laundry, shopping and whatever else you can think of that needs done. All awhile, I sit on the couch and give the commands. Nice, I tell you.

Yea, sounds like I have gone mad. Maybe I have? I am not really sure. Or maybe I am just making the best of the situation. Well actually if I had a choice I would rather be running, walking without crutches, working, and etc. But since that is not an option this will work for now. That is until I really go crazy.

Monday July 28, 2008

We have to decide if Jared should or should not play football this fall. Tough decision......

He really wants to play. He wanted to play last year too, but we would not let him. This year we have not decided yet. We have to decide today. I know if we do not let him play he will be very upset about it, but we need to be the parents and make the best decision for him.

It is not just the playing football issue, it is how serious the sport is taken by those in charge. We are talking about a 7 year old boy. Practice starts this week and continues all summer till school starts, 2 hours a day, 4 days a week (in full equipment in the heat). Then once school starts it is practice 3 days a week. For youngens like these kids, that seems like an awful lot of FOOTBALL. Personally, I think it is a little much.

Then I worry because once school starts that throws another scenario into the mix..............homework. At this time we do not know how much he will get. It is hard to tell right now if practice 3 days a week during the school year, will be too much or not.

But I know he really wants to play. It is good for his socialization skills. Playing football might make him more self-confident. And it is good for him to be involved in activities. The exercise is great for him. And it is good to expose him to different things.

We can always try it and if it doesn't go well, we can always back out. I don't want to encourage my child to be a quitter by any means. But I also am not sure how young is too young to push our kids the way the football sport does. So, I am really thinking if he tries it and it doesn't go well. He will have my permission to back out till another year. Oh course, I will not tell him this upfront. He will go into thinking that if he starts it, he will finish it.

So, we are going for it and letting him do it. You know we talked and talked about it today and decided "yes". Then Mike caught me off guard and told me something I use to say, but have not said in a while, it began with a what if ......................???......... the rest doesn't need repeated here,but it was enough to convince me that we made the right decision. He really wants to play, so why not let him? I hope he enjoys it and has fun, fun, fun.

Kirsten is playing soccer this fall. She wants to start practicing soon. We need to get her up to the soccer field to practice running and kicking again. It has been too hot lately. Kirsten is kind of getting bored of summer. She is ready to go back to school and see her friends everyday. Lately all she wants is one continuous play date with this friend or that one. Which is OK with us. Kirsten has been into reading. Last night when we went to bed, she sat in her bed and read before she went to sleep, it was nice to see her entertaining her self and reading too.

I am coming along well. With the crutches and minimal to no weight on my leg, I have no pain at all. I am anxiously awaiting my orthopedic appointment to find out exactly where I stand with my fracture and how long to be off work and so forth. I now have a more positive attitude and have accepted that this is the way it is and I can't change it. Less self pity parties lately, which is a good thing. Sure I am driving Mike and the kids crazy, but isn't that my job? I do hate to bug them for things, but unfortunately there is no way around it. I do not like having to be catered to. I would rather do for myself, if I could. But all is as well as well can be.

On that note I am going to go.

Wednesday, July 23, 2008

Well the news is in from the MRI......a stress fracture it is. Now that wasn't suppose to happen. Orthopedic's office called today and told me that and said "absolutely no weight on my left leg at all". Looks like the couch and I will become even better friends for a few more weeks. We shall see how bad it actually is, when I see Dr.Oplinger next Wednesday. I am hoping for a quick heal. We shall see, for now they are saying 8 - 12 weeks to heal. Or that is what the nurse said, after Dr. Oplinger sees the MRI himself next week, we will know more.

Tuesday, July 22, 2008

Well I went to see the orthopedic today, with no good news. He does not feel my hip is bursitis and would not give me a cortisone injection, even though I BEGGED him for one. Instead he ordered an MRI of my hip and directed me to use crutches and to NOT bare ANY weight on my left leg. So tomorrow I go for an MRI to rule out a stress fracture, then back to the orthopedic next Wednesday. .

You see, not going back to the doctors for a week means no weight bearing on my leg for a week, no work for another week, it means just laying around doing nothing................still. OK when they told me a week, I did not take it so well, I actually became upset and cried right there in the office. This doing nothing is driving me bonkers. Man oh day, does he know what he is asking me to do?

This is not the way today was suppose to go.
I was suppose to go to the doctors.
He was to say,"Yep looks like bursitis to me".
Give me an injection in my hip and wave good bye to me forever.
In a few days, I feel as good as new and am back to my usual activities.

But NO, that is not the way it went at all. I am still trying to figure out what went wrong, what made the scenario not go as planned? I think someone forgot to inform the doctor of what he was to do or say.

Next time, I will have to tell the doc ahead of time what he is suppose to do and say, see if that works.

So for now I am trying to enjoy sitting around and having my family wait on me hand and foot. They are being great about it though. Jared and I laid around all day today and watched movies together, it was a nice way to spend the day. Of course the movies were of his choice, but he picked well. The Scooby Doo Movie and another scooby doo movie too. Must have been scooby doo day.

Have a great week.

Connie

Saturday, July 19, 2008 11:35 AM CDT

It is hard to believe we are already about half way through July. Summer is flying by.

Jared started school last week. It is only two hours a day, two days a week. They are working on math and reading skills. I am not sure it is his favorite thing to do with his time, but so far, so good. He needs a lot of encouragement to go. At least he has the same reading teacher as he had last year, Mrs. Garman. He really likes her, but she still isn't enough to make him "want to go." He actually only has like 2 more weeks left of school.

Mike is about half way into his Speech class now. So far, so good for him too.

I have been in the "dumps" a little lately. You know I started running back in March. And literally have ran almost every single day. Well about a month a go, I started having some knee discomfort, so I bought myself a knee sleeve that I wore when i ran, end of story...............or so I wish. Well I started having some hip pain when I ran, but after I would be done running I took motrin/aleeve and it would fix me up again.

Well about 2 weeks ago, I had so much pain. It hurt to walk, let alone try to run. It is not constant pain. But interferes with my ability to walk. I can do only a short distance and then I need to rest. Last weekend I went to the grocery store for a few things and by the time I got home I was almost in tears from it hurting so bad. Since last weekend I have done basically nothing. I have laid on the couch, laid in bed or just sat around. The past week I have not even gone to work. The previous week I went to work, and by the time my 8 hours were up, I was ready to get off my leg. This week, I can not even walk long distances. I literally can walk a few minutes then I need to rest. Because it hurts to bare weight on my leg and then I stress my whole leg out, trying to move it as a unit.

Anyways, had an x-ray which was negative for a fracture. The doctor seems to think it is a muscle pull, gave me pain meds and sent me to physical therapy. Physical therapist thinks it is bursitis. I have an appointment with the orthopedic this coming week. We shall see what he thinks it is. I keep hoping that when I go to the orthopedic that he will somehow discover what it is and fix me. The PT thinks if I get a cortisone injection in my hip it will resolve it. But my family doc will not do it because he is not convinced it is bursitis, so I hope the Orthopedic doc will.

You know this really had me in the dumps, because I went from running 3 1/2 - 4 miles everyday and now I can't even walk more than a few minutes. I feel like I went from being in good shape to doing absolutely nothing. Oh it is driving me crazy!!! I quit smoking about 2 months ago (about time I finally kicked the bad habit) and really kicked into being active and getting fit and here I am sitting on my butt, doing nothing. Driving myself nuts. Anyways, I just hope they can figure out for sure what is wrong with my hip, I can get back to work and best of all, back to running. Well enough whining about me......................sorry, just needed to vent.

Please keep Janie Kashino's family in your prayers. Janie went to heaven this week. She had relapsed NB in December and past away on 7/16/2008. I never met them in person. Her mom, Colleen, and I use to e-mail back and forth after Janie's diagnosis. They were from NY and were treated at CHOP. http://www.caringbridge.org/visit/janie

God bless and take care,

Connie

Monday, July 7, 2008 7:42 PM CDT

The past two months are ones of celebration. In June, Jared turned 7 and this month (July 15) marks Jared's anniversary of 5 years since his Neuroblastoma (NB) diagnosis. This really is a huge deal. I know anyone involved in the Neuroblastoma world and my family, especially know what an accomplishment this really is for Jared.

The odds of a child with Stage IV NB, unfavorable pathology and n-myc amplified to be here and healthy 5 years from diagnosis is a true blessing. One we appreciate every single day. Jared is a SURVIVOR!!! I thank God everyday for our blessings.

As I relive the day we found out Jared had cancer, I remember it like it was yesterday. It is a day that is engraved in my mind, just as much as the day my children were born. That is how significant that day really is..............................

It was after work, Jared was lying on the living room floor and he began to tell me how his belly hurt. I remember feeling his belly and finding a lump in it. My first thought was I knew that lump did not belong there. My next thought was could he just be really constipated and I was just feeling that?? Then I thought, no way! Something is wrong. I called the pediatrics center and took him in immediately.

Within an hour I was told that Jared had some type of tumor and the plans were made for us to go to the oncology clinic at Hershey Med Center (HMC) the next morning. When Dr. Hoffman told me this, I remember just sitting in the office and squeezing Jared (2 at the time) in my arms and crying my eyes out. All I kept thinking was, "No way, they have to be wrong. Jared could not be sick and especially with cancer"

Needless to say that evening was horrible. Going home and having to tell Mike what the pediatrician thought, and to wait the long grueling 12 hours till our appointment at HMC the next morning, was torture.

That is were our journey began. Oh how we remember it like it was yesterday. No matter how much you try to forget it and move on..........it is a thought that is drilled into your brain, that will never go away.

Since we can't take that thought away, we can only go from that point. And since that point we have had nothing but blessings and good health. We are one of the lucky ones. As happy and thrilled as I am to be a "lucky" one, I also can not help but think of my fellow Neuroblastoma families and warriors.

When I think about all the Neuroblastoma families I have met over the years it is amazing. Most families are still in the heat of the battle or their child has gone on to a pain/cancer free place........heaven!!

I am not one of those parents either, that can say, "My child is doing OK now and I want to put it all behind me." I can not forget all the people we have met, all the children who have fought and are still fighting. Every trip to Philadelphia brings a meeting with someone new or an old friend we have met before. The network of Neuroblastoma families we have met is like no other. It is like you are drawn together by the commonality of this disease. Each and every person you meet becomes instantly part of your extended family today and always.

The sad part is that this disease is so unique in that, there is no known cure. Each child's disease is unique and each child's response is just as unique. As I stated before, We really are one of the lucky ones (so far) to be where we are with what we have.

This life is a blessing. A miracle that I realize every single day of my life. Yes, even when Jared is driving me absolutely bananas, I am glad he is here to drive me bananas!!! In fact give me some ice cream and I will just make a banana split. The alternative to that is not something I even want to begin to think about or imagine. No parent wants to go there................

So all that being said, I love you Jared and Kirsten. You are the best, even when you are at your worst. Hugs and kisses from me to you my monkey boy and punky pie!!

Please celebrate with us!!!

But do not forget all the others who are struggling to battle this disease or deal with the after effects of this disease and how their life is changed forever.

Say an extra prayer for Brandon Loose who is battling relapse and my friend Kim Mease and her family who are dealing with the anniversary of date of Michaela becoming an angel (12/28/1995 - 7/15/2004). No matter how many years pass by, I know how hard this date is for them.

There are so many more NB families who are in my prayers like Janie, Emily, Kendall, Sam, Sean, Ryan, Kolton and so many more, that I can not even begin to name them all. Just know that you are all thought about often, and prayers go out to comfort you in your time of need and support you during life's trials. Keep your head up and your spirits high.

That being said I am going to go now. We are some of the luckiest people alive, or at least that is how we feel.

Thank you all for your support and notes of encouragement over the years.

Sincerely with love,

Connie

Tuesday, July 1, 2008 2:54 PM CDT

I can hardly believe that it is already July 1. The summer is flying by so far. We are keeping ourselves busy with activities and playing. The kids enjoy riding their bikes to the pool to swim or just hanging out at home swimming. Yes, they are water logged already.

There is one more swim meet then divisionals are here already.

The picture above is Jared pretending to be a "nerd". No offense meant to the ones who wear their pants up to thier ribs.................honest. The kids were just goofing off and having fun. And the silly glasses, I am not really sure where they came from????

Mike is back in school for a Speech class now. He thought he had a week break in between, but actually, one class ended and the next one began immediately. Which is OK, but I think he is ready for a REAL break. I do not blame him either.

I have taken long weekends (off work) all summer. With Mike in school, we can not really go on a long vacation, so I am just going to enjoy the short work weeks. We do have a long weekend trip planned to the beach the middle of August. So until then, we shall stay home and hang out. No big deal though. Mike and I are going to try to steal away a couples only (no kid) weekend trip to the beach this month, if we can. We shall see.

Hope everyone has a terrific Forth of July in a few days. We are heading to 2 picnics that day. Should be busy and full of lots of good food.

God bless,

Connie

Tuesday, June 24, 2008

Jared had his birthday party Saturday at the pool. It turned out to be a pretty nice day for a pool party too. I think the kids had fun just swimming and running around. Of course, I am not sure what was more fun, swimming or stomping on the empty juice containers (after blowing them up with air) and seeing how far they could shoot the straw. Boy, I tell you boys are easy to entertain!!!

We had the tradition pizza and cake. Jared helped pick his cake out on Friday night from Giant. OK, OK, I did not bake it myself, I took the lazy way out, but it was good.

Happy birthday Jared, we love you!!!

Saturday morning our day started out with a swim meet that started at 9 a.m. After the swim meet it was straight to the pool for the birthday party. After the birthday party, Kirsten "bummed" a ride to a soccer party with a friend, Jared and I went to a picnic at a friend of mine's house and Mike stayed home and hung out with a friend of his, so he would be here when Kirsten came home. It was a pretty busy day for all of us.

Wednesday, June 18, 2008 8:43 PM CDT

Sunday is Jared's birthday party at the pool. He invited a few friends to come and we are planning on having cake and swimming. It just so happens that is the same day the pool is having their big summer celebration. Oh well, I did not know that when I planned the birthday party. To late now, but I guess it really doesn't matter. At least, it looks like the weather is going to warm up for the weekend.

How we went from 100 degrees weather to 70's is beyond me. We went from going to the pool, swimming and basting in the sun everyday to this cool weather. Now, I know that summer weather will be here soon enough and then I will be hoping for days of 70 with no humidity. For now, the only advantage I can see is that it is easier for me to run in the cooler weather. Last week when it was so hot, it was more difficult to breath. I tell you, I have been running almost every single day since March and I love it. I have noticed the biggest difference in how I feel. Although, I do have to get on my bike soon too. I just can't stop running everyday to ride my bike. Mike and i have always been avid bike riders. My goal is to ride in the MS 150 before I am 40. Well we are down to this year or next at this point, so I am soon running out of time. If I do not start training soon this year, then this year will definitely be out. We shall see. Wish I had more time in a day. Oh well, enough about me..

Jared bought this pirate raft with his birthday money. He was so proud of his purchase. Thanks Aunt Joanne for the target gift card.

Mike is down to one more week left in this class. Last weekend we went to see the Mikado. It is a Japanese Opera. It was actually very good. It's satire was funny and it was easy to listen too. Now if I had to choose what to spend my money on, an Opera or a concert, I would choose a concert, but it actually was easy on the ears.

So far summer is going OK and without a hitch. Kirsten has swimmers ear and has pretty much been out of the pool this week due to not being able to get her ear wet. Think she is ready to swim tomorrow if the weather permits. They missed their swim meet last weekend due to Kirsten's ear and Jared's........well, his grumpiness. Jared has been moody lately and just plain grumpy. Not sure why or if it is just a change in his routine. Or should I say, lack of a routine. The past few days have been better, which is a good thing. Last weekend he knew which buttons to push and he pushed them well. So glad we are past that phase now, was driving me a bit nuts if I must say so. It sure is hard being a kid sometimes................. and a parent!

On Father's day we did not do to much. We hung out and took it easy. The kids wanted to surprise dad with a bike ride around town (because he likes to ride bike). So after dinner we ended up riding our bikes to the pool and swimming a bit. It was nice because there was hardly anybody at the pool. We actually had the one pool all to ourselves. We ended up having lap races (us against the kids). Let me tell you, that Kirsten kicked our butts. The first race started and I thought, "Oh I can beat her". WRONG!!! SHE WON!!! I do not know how that happened. When did my 9 year old girl become a faster swimmer than me? I am not kidding either, it was a big eye opener for me. Of course I used the excuse that I was tired because "I already ran 3 miles and then worked out my abs and arms" while everyone else was FRESH!!! Of course, they did not buy it. OK, OK, I am just getting older and tireder. Just means I have to work harder to keep up. It was a lot of fun. And I learned my lesson. Next time I race Kirsten in the pool, BEG her to give me a head start!!

Well have a great week everyone.

Connie

Friday, June 13, 2008

Today is Brandon Loose's birthday. Visit his webpage link below and wish him a Happy birthday.

Sunday, June 8, 2008

Today we celebrated Jared's seventh birthday. Wow, how they grow up so fast. On one hand it is hard to believe that he is already 7. Then on the other hand it is a blessing that he is here and turning 7 years old. I for one am thrilled that he is a healthy little guy who is growing up exactly as he should be.

Today was not a major fuss of a day. We ended up giving Jared his birthday present a day early. He knew what he was getting. He has been telling us what he wanted for months................a skateboard. So, you got it. A skateboard it was. He had fun riding it in the driveway last night in am attempt to master it. I am afraid that mastering it will take more than one night. I think he loves the challenge. He will not give up until he gets it down.

I did bake him a cake today and we had to sing him happy birthday with the "cha cha cha" in it. DId you ever hear it?

"Happy birthday to you, cha cha cha,
Happy birthday to you, cha cha cha,
happy birthday dear Jared, cha cha cha
Happy birthday to you, cha cha cha"

With each "cha cha cha" Jared did a little dance that involved hip swinging and squating. It was way to cute!!!

He received a lot of phone calls wishing him a Happy Birthday today and loved it. Thank you all for the well wishes.

Today we went to the pool and hung out. What else would we do with 100 degree weather. All weekend was like this. It created the prefect reason to hang out at the pool and ignore our inside duties for a few days. Sometimes you have to do that.

Jared has his real birthday party planned for 2 weeks from now. Had we of known it was going to be so hot outside we would have had it today. But we thought a week or two would allow the pool temperature to increase to a more tolerable temperature. Oh well, who would've known.

Kirsten had her last soccer game this weekend. She was so excited that she scored a goal (first goal ever). What a way to end the season. It was perfect. I wish I could have seen her. They said when she scored it she did a little celebration dance on the field. Oh she is my silly girl who loves to be the center of attention!!! I missed it because I was at the swim meet. Jared started swimming this week. He did not do to bad. Came in third in two of his events. Pretty good.

Well have a great week everyone.

Connie

Thursday, June 5, 2008 8:32 PM CDT

Today was the last day of school. It is hard to believe that summer vacation is here. The kids are excited for summer vacation, being with friends, swimming and no school. I know Kirsten will miss school, because she will miss her friends. That is our social butterfly. We look forward to a fun summer with the kids.

This weekend, Sunday is Jared's 7th birthday. Awesome.

Last Friday Jared had field day at school. They had to do some silly things, like pick marbles up with their toes in a pool of water, blow a ball with a straw, run with noodles and so forth. The kids had a lot of fun.

Sunday we took the kids hiking and Kirsten's one friend ended up going with us too. Of course, we did our favorite hike, Flat Rock. It is a hard hike but oh so beautiful from the top.

We took Buddy with us, but not Angel. It was so nice and we figured the hiking trail would be busy and you have to keep Angel on a leash or she will run after people. To much work, so she stayed home.

We saw a big black snake during our hike too. It was a long side the trail. We checked it out and took pictures of it.

This week I went bowling and skating with Kirsten's class. All I can say is "those girls are wild and crazy" and I mean that too. It was fun.

Mike continues his schooling. He is half way done with his first summer class already. Time is flying.

Next week starts summer playground for the kids Monday thru Thursday 9 a.m. - 1 p.m.

Have a great week and continue to keep the NB warriors in your prayers, especially Brandon Loose.

Connie

Sunday, May 25, 2008 7:18 PM CDT

The past week has been busy. Swimming weather is here.................or not!!! The community pool opened up on Saturday. The kids wanted to go to swim. OK, so we knew it would be freezing cold and doubted they would stay in the water very long at all, but we went anyways. Well they each jumped in and, yes, you guessed it, right back out. As soon as they were submerged in the water they made it straight to the edge and hopped back out. If you would've seen the looks on their faces, it was funny.

Kirsten had to jump in. Her teacher works there and he told her if she "wanted to move onto fourth grade she had to jump in." So you see, she had to do it!! Na, just kidding, I am sure he would pass her on to 4th grade, whether she jumped in or not.

Now I must admit they did enjoy the water slides. The secret to enjoying the water slide was to stand up and get out as soon as you reached to the bottom. This meant before you slid into the deeper water waiting for you there. Once that skill was mastered, it was fun for all.

There were only a few other people there when we were there. Yes, only kids were the ones brave enough, or should I say crazy enough to jump in. Not us adults. We are to smart for that. We asked what temperature the water was and were only told, "cold". Here are some pics of the kids being daring and crazy.

Thursday night Mike and Kirsten went to a special Daddy/Daughter dance. They had a lot of fun dancing and hanging out. They were all decked out and looked great together. Here is a pic of them. I think it is great to have that one on one special time for the children. They enjoy it as much as we do. As for Jared and I, we decided to hang out, order food in and watch a movie. What a relaxing evening for us too.

Friday we went to Kirsten's field day at school. They did all kind of sports and activities. Here is a picture of the girls goofing off and "pretending" to be nerds (or so they think they are pretending,if they only knew.....), just kidding.

Today the kids walked in the Memorial day parade with Kirsten's soccer team. After the service at the square the kids had a blast walking in the water at the bubble. They told me the water in the bubble was warmer than the pool yesterday.

Have a great Memorial Day everyone.

Saturday, May 17, 2008

Just to update:

Kirsten ended up having her soccer game last week against the number 1 team and it ended in a tie. Which means her team is still in number 2, which is great.

Jared's teacher (Mrs. Garman) helped us out and talked to him about his summer sessions at school, and now he is psyched for it. Total turn around occurred. That is great news.

Tonight is the May Fair at school. Kirsten and Taylor are all ready for the talent show. They had practice after school the other day as a dry run, and from what Kirsten said, she was a little nervous up on the stage. I told her she will do a fantastic job tonight and not to worry. Those girls are funny. They talked about wanting to get together to practice their song and dance, but every time they were here they only played, no practicing at all. Now get their rationalization, which I thought was pretty impressive. "If we practice and have a routine, then we might mess it up. If we just go up there and "wing" it, then no matter what we do, it is not wrong. It will be right no matter what." I thought that was a pretty good rationalization of why they did not need to practice. We will see how it goes.

It is hard to believe the kids only have about 2 1/2 weeks of school yet. Time is flying by very quickly.

If you get the opportunity stop by and visit Emily Adamson's web site (link below), she gained her angel wings last week. Her family could sure use the support.

Continue to keep Brandon Loose and all the NB warriors in your prayers.

Till next time, take care.

Connie

Saturday, May 10, 2008 6:32 AM CDT

What have we been up to lately? Not a whole lot, just having fun and waiting for the warmer weather.

Kirsten is suppose to have a soccer game today, but it is pouring down rain right now. They are all psyched for it too. The team they are playing are in the number 1 position right now. If they beat them, they move to number 1. And if they win, they get pizza and ice cream!!! That is what they really want. But with the weather, the game may be postponed till another day. We shall have to wait and see.

Last night we informed Jared that he was going to be going to school this summer. It ends up being 2 days a week, 2 hours a day, for 4 weeks. Let's just say, that he was none to thrilled to hear that. A major temper tantrum followed suite. We get it though. I don't blame him for not wanting to go. He wants to play all summer and going to school makes him feel as if his summer is interrupted. We reassured him it would not be all summer and the sessions are actually very short. This did not help, but we told him that it is not a punishment, but instead it is a good thing. He has worked so hard this year at reading and is doing well. The last thing we want for him next year, is to have to start all over again. We want him to pick up where he left off this year and continue to excel. Also that we sometimes, as parents, make decisions that are best for him. After about 30 minutes of us talking it up and him rejecting it all, I think he finally gets it. He will go, it will be short, and it will help him retain the information he has learned this year. We have been avoiding having this conversation with him, because we knew how it would go. But I really think, now we can move on and continue to make it a positive thing. His whole thought process is that, "Kirsten doesn't have to do it, so why do I". Yea that is a tough thing to explain. You know all kids are different and excel at different things at different speeds.

The kids are both joining the summer swim team this year. Practice starts next week already. Of course, Kirsten will still be in soccer for another month yet, so she will be very busy.

About two weeks ago, Jared and I went to a special "Mom and Son bingo bar-b-q". It was fun. It was at the Carlisle Country Club. We had dinner and played bingo to win prizes. Of course, we did not win bingo but all the son's left with a door prize, which made Jared happy. It was a nice night with just us two. Dad and Kirsten also had a special night together that night. It is not often that we get that special one on one time. We need to make more time for things like that.

Mike has completed his first semester at college and all seems to have gone well. Still waiting for his final grades, but it seems that all is good. He now has 10 days off before his first summer session starts. I think he will enjoy his time off.

Erin, one of our THON friends is graduationg from college today. We want to wish her well in her future job as a teacher. She will be AWESOME, that is for sure. Good luck Erin.

Continue to keep Brandon and his family in your prayers.

Happy Mother's Day to all you moms.

Connie

Monday, April 28, 2008

This past weekend was busy. Kirsten had a soccer game and they won 3 - 0. They played so awesome. I must admit that Kirsten really hustled. You see, for the past 2 years Kirsten has participated in cheerleading. This year she wants to switch over to fall soccer instead of cheerleading, because her good friend plays soccer. We really had to debate this. Not that we really care which she chooses, we just want her to choose what she enjoys. Mike and I like cheerleading, but when it comes down to it, we would actually like to see her play soccer. Soccer is more of a physical sport with a lot more exercise, which is good for kids. So last week she did not get in the soccer game until near the end, and within a few minutes she was asking the coach to take her out because she was tired. We told her if she wanted to play soccer we would support her 100 percent only if she liked the game, had fun doing it and hustled. Well Saturday she played almost the entire game and was so into it. She was aggressive and ran her little heart out. I was proud of her effort. She did very well. So that being said, Kirsten is trying out for Fall soccer next week. That is assuming she does not change her mind before then. You know how us girls are.............

Saturday while we went to the soccer game, Jared and Mike went to a bike rally. Mike said the rally wasn't the greatest, but Jared had fun riding around on his bike with his friend.

Kirsten then went to a friend's birthday party sleep over for the night and Jared spent the night with Grammy K. He hasn't had a just Jared and Grammy day in a while. They went to the park to play and just had fun watching movies and hanging out.

Yes, Mike and I had the house to ourselves again, to weekends in a row. How odd for that to happen. We just hung out at home and "talked" the night away. Well you know to me night is till about 10 p.m., then off to bed. It was nice. So often life is so busy that we do not get that interrupted talk time.

Last week we took the kids hiking one evening. They had fun just climbing on the rocks and goofing off. Which is normal for them.

Last week we took the kids fishing down at the lake. Of course, we did not catch a single fish and dad had to handle the worms, but rgardless, we had fun fishing. Here is three of them relazing as they fish.

I have a big request for everyone. For those of you who know Jamie Eager, and for those of you who do not, take the time and visit Brandon's page (through the direct link below) and send them some prayers for strength and some support. They need this now more than ever. Brandon is such a warrior.

Continue to pray for all the NB warriors and families, especially Brandon.

Connie

Monday, April 21, 2008 5:44 AM CDT

We've been busy here.

The weather has been getting nicer and warmer and the kids are keeping busy outside playing. They have been getting great use out of the trampoline lately (plus it is good exercise).

School is narrowing down for everyone. A little over a month yet to go for this school year. Mike has about 3 weeks left in this semester then he has 10 days off then back to school for him. Since they are paying for his schooling and paying him while he goes to school. He must take 6 credits this summer too. This pretty much means all summer. He has a class that starts around the middle of May then he has a week break, back for another summer class, then a week or so break before the fall semester begins. This will keep him very busy. He has arranged his classes to be in the morning though because he plans on spending the afternoons at the pool with the kids. Say a little extra prayer for him as this semester winds down, I know he is a little stressed about finals coming up.

Kirsten is still going strong at soccer. They had one game since my update which they tied at. The weather is suppose to be rain all week here, so I see practice being on hold, probably.

Jared is riding bike, scooter and a pro at roller blading now.

We were planning on going to the blue and white game at State College this past Saturday, but it did not happen. We missed seeing our THON friends!!! (Sorry about that.) We promise to link up this summer. We will come up for the weekend to hang out sometime, promise.

Saturday afternoon we had a picnic pizza lunch at the park near our old house in North Middleton. The kids were playing on the play ground equipment. We were talking about how we remember when they were babies that we would push them in the baby swings for hours. So they both decided they wanted to get into the baby swings for "old time sake". So of course we had to take their pictures. We all had fun at our old park we use to go to everyday when the kids were little.

Saturday early evening, Kirsten had a birthday party at the skating rink and Jared went too. He was dying to try out his roller blades on a smooth floor like the rink has. It was funny because at first he was scared to go out on the floor, he just stayed on the carpet. Then once he tried it, he found out he was great at it. He skated the entire 2 hours we were there.

Saturday night they spent the night at Grammy Strayers, and Mike and I had "date night". Did not do much............ We went out for Chinese, Dairy Queen for dessert, came home, took the dogs for a walk, set out back and talked till 11 then went to bed. It was a nice relaxing evening though.

Kirsten and her friend, Taylor, are practicing a song for the school talent show. They are going to sing and dance. Should be cute, hope they don't get stage fright.

I have summer fever. I am so so ready for the warm weather and sunshine to come.

Have a great week.

Connie

Monday, April 7, 2008 7:15 PM CDT

Kirsten had her first soccer game Saturday. Here is a pic of her posing (of course) for me.

They won like 7-0. They all played great. Mike and I were impressed with how fast Kirsten could run. I think the coach was impressed with her too. Of course then they all got together and went out for Pizza for lunch. After every win they go to Aniles for pizza so we may get more pizza. I think Kirsten is going to have a lot of fun with soccer. I actually tried to talk her into going out for Fall soccer too. But she really loves cheer leading, so cheer leading it is.

Kirsten ended up going to a friends house after pizza then her and her friend came home around dinner time, and I took all the kids swimming at the high school Saturday night. Of course I only swam a few minutes, the water was a little cold for my liking. After swimming, Kirsten and Taylor went back to Taylor's house to sleep and Jared and a friend (Jordon) came to our house to sleep.

When we first got home, Mike started a fire out back in the fire pit with all the branches Jared picked up from the yard. It was exciting but we had to stop the boys. They were getting a little crazy with the fire and poker sticks. It was getting kind of dangerous for my liking. Then the boys came in and played Nintendo DS and this is where they lost me. Yes, I was the early bird (in bed by 10). I just can't hang to late anymore on the weekends. The boys stayed up till around 11, then they all went to bed. Mike was in charge.

Mike, Jared and I went for a bike ride Saturday around town. It was a beautiful day for biking. Makes me want to start really riding now. I have been walking and running lately. Start walking, then run. Each day I try to run further and further, until eventually I am only running. I am almost there.

Sunday the neighbor's grandson (Joey) and Jared had fun playing outside in the woods, building forts and finding bugs. They ended up finding 7 salamanders. Some were all brown and some were black with orange stripes down their back. I bet Joey's mom loved it when he showed up with a bowl full of dirt and salamanders to take home with him. They literally entertained themselves for hours outside doing this. They play so well together.

We are hoping to link up with our THON friends from Penn State and go to the blue and white game this month. Hope our plans work out for this.

Continue to keep our dear friends battling NB in your prayers. Say a prayer for Brandon Loose to beat the beast.

Connie

Sunday, March 30, 2008

Everyday Spring is a little closer and closer to being here. The kids have been outside more playing and having fun. Jared was on his roller blades for the first time this year and amazingly, he is great at it. Last year we bought them at the kids requests and they had them on one or two times and gave up. Now Jared is skating all over the driveway and doing great. Of course, mom is a little paranoid and makes him wear all his protective gear, including a helmet.

Kirsten has her first soccer game this coming weekend. Hopefully she can make it. Right now she has a terrible cold and questionable ear infection (going to get that checked out today). I know right now there is no way she can run around without coughing her head off. Hope she feels better soon.

Friday night Jared spent the night at my dad's house to go fishing with him on Saturday morning. The first day of fishing season is here.

Kirsten stayed home with us and we had a nice relaxing evening. We stuffed eggs full of candy for our big egg hunt scheduled for Saturday and watched some girl movies ie. Enchanted and Nancy Drew. Of course I only stayed awake for part of the second movie. But not Kirsten, she watched them both.

The kids had a great time at the Egg Hunt. Lots of sweets for them to eat. Here is a pic of some of the kids. Some were to busy playing to stop for a picture.

Jared decided to go fishing more instead of come to the egg hunt since he was having so much fun. Here is Jared and dad showing off their catches of the morning.

Mike and I have to go get our fishing license because Kirsten too wants to fish. We bought rods and all the gear so our license is the only thing missing to get started.

Have a great week.

Connie

Tuesday, March 25, 2008

Thought I would just give a quick update.

Kirsten has started soccer practice now. She is the only girl on her team who has never played soccer before. I think that made her feel a little uneasy at first. But I reassured her that she needs to not worry about it, it will be OK and she will learn how to play just like they know how to play.

Jared has been keeping himself busy riding bike and playing outside since the weather is starting to warm up a bit.

Saturday we took the kids to see Horten hears a Who. They liked it. I did not remember this story at all from when I was younger, but maybe it wasn't around then?? Mike says he was and he is older than me, so it must have been.

Then Saturday night we colored Easter Eggs or maybe I should say we colored eggs and my kitchen table. They had fun trying to dye the eggs a whole bunch of colors and see the outcome. We are having our big family Easter egg hunt this coming weekend. It has been so busy for everyone that we did not fit it in before Easter, which is OK because the weather will probably be nicer next weekend anyways.

It was so funny on Easter morning....Kirsten asked me, "Mom is the Easter bunny real?" Of course I returned her question with a question "What do you think?" She says, "I don't know but Jared left a carrot out for the Easter bunny last night and he did not eat it" OK now, I must admit that I never noticed the carrot on the counter when I went to bed Saturday night, so I did not know to eat it. Anyways, I think for sure Kirsten knows the Easter bunny is not real, now Jared may still believe but I am not sure. Then on Monday night the kids found a bag of jelly beans, just like the ones that were in their Easter basket. "Mom you are the Easter bunny" So guess the hat is out of the bag?? not sure.

Kirsten lost a tooth on Saturday night, which of course she put under her pillow but mom and dad did not know so the tooth fairy did not come. The tooth fairy did come on Saturday night. Darn we are really messing this stuff up lately.

Easter we went to my mom's for dinner. Awesome meal. It was delicious. Thanks mom.

Well have a great week everyone.

Connie

Wednesday, March 12, 2008

We are all done with scans and we are thrilled to say that Jared is still NED (no evidence of disease)!!!! Oh how blessed we really do feel. Even though we had no reason to think the news would not be good, it is like sitting on pins and needles waiting to hear the results. Dr. Grupp called about an hour ago and so now comes the sigh of relief.............and the THANK YOU GOD!!!

We had a nice trip to Philadelphia. Tuesday was spent at the hospital most of the day (10:30 - 4 p.m.) When they put Jared's IV in to administer the contrast for the CT scan it took them 3 attempts, which he did not like at all. After the second time I asked them to get the anesthesiologist to do it. They ended up getting a member of the IV team and she got it on the first attempt, which I am glad because Jared was getting upset and so was mom and dad.

Most of our long day was spent waiting in waiting rooms. Oh well, all par for the course.

When we met with Dr. Grupp, Jared was in rare form. He always jokes around with him, nonstop. He is our "little goof" because he is such a clown.

The MIBG scan today was not to bad, although Jared kept coughing and coughing. This is the test where he has to lie still for almost an hour. He does pretty well at it, thank goodness. They always put a movie in for him to watch, which makes the time go fast.

After we were done at the hospital today we headed over to the Franklin Institute. They have the big Star Wars display there right now. The kids liked some of that , but they are not big Star Wars fans. They did enjoy all the hands on activities to do though. It was a nice day.

Our friends from THON came to see us last night. IT was a nice surprise too, because there were 5 of them instead of the 3 we were expecting. Jared had them all take turns playing Mario Carts. Liz, I hate to admit it, but I think Erin won. They were all so competitive to see who could place the highest. Yes, I am referring to the big kids, not the little ones. It was so funny. We really were glad to see you all. Hope to see you again soon Erin, Matt, Liz, Christie and Jess.........oops, I mean Sarah, as Kirsten would say.

We had the chance to meet Brandon Koontz (8 years old) and his family. Brandon was there for scans. He also has Neuroblastoma. He was diagnosed in (I think) 2004 and relapsed in October 2007. He is now in relapse treatment and having some leg pain issues. We pray your scans told good news today.

Brandon was such a sweetheart. You can tell how good natured he is. The boys had a fantastic time running around the Ronald McDonald house play room and just being loud and rowdy,like boys are suppose to be. It was neat watching them all run around and have fun.

Wendy and Michael, know your Brandon is in our prayers for kicking NB butt. You are awesome parents and it was fantastic meeting you and talking. Know you are never in this fight alone.........never.

I would like to thank you all for your support at scan time. Scan time always puts us on edge a little bit. Always thinking optimistic but preparing yourself for the worst, just in case. Thank you. We could not get through it without everyone's support.

Also, we have one more set of scans, in a year. Dr. Grupp stops scanning at 5 years post treatment not 5 years post-diagnosis, as I was thinking. But that is an entire year away now, so we can relax and live life.

Continue to keep our NB warriors in your prayers.

Connie

Monday, March 10, 2008 7:11 PM CDT

We have arrived in Philadelphia tonight.

Have MIBG injection, CT scan of abdomen and chest and see Dr. Grupp tomorrow.

Wednesday have MIBG scan then back home.

The kids are having fun playing here at the Ronald McDonald house as I type this. We are going to try to visit the Franklin Institute on Wednesday and our friends from THON may stop by and visit us tomorrow evening. Can't wait to see you three.

Mike debated whether to miss school and come along and at the last minute decided to come along. Kirsten then had to debate whether to come and miss school and her field trip or stay with my mom and in the end she decided to come along............so here we all are.

Will update as results come back.

Connie

Tuesday, March 4, 2008 12:53 AM CST

I wanted to share an article with you that was published in our local paper. It is about Kirsten and her decision to donate her presents for her 9th birthday to Hershey Med. Centers, children's hospital.

Now to share the brief article that went along with it,

Six year old Jared Strayer received a wagon full of toys several years ago when he battled neuroblastoma, a form of cancer, as a patient at the Penn State Hershey Medical Center Children's Hospital.
Many of them came courtesy of the Four Diamonds Fund, a foundation that supports children beset by cancer at the hospital.
So when his 9 year-old sister, Kirsten read the foundation's newsletter earlier this year, an idea sparked.
It featured an article about collecting money for the organization, and Kirsten saw a chance to use her approaching birthday to help others.
On Feb. 13, instead of asking for presents for her birthday party, Kirsten asked 11 friends to bring toys for the patients at the Children's Hospital.
The roughly 20 toys collected will be delivered to the hospital at the end of the week.
Her charity impressed even her mother, Connie Strayer. "I just think it's amazing that at 9 years old, she's thinking more about other people than herself," says the Boiling Springs woman. The children's Hospital was terrific to her and her family during Jared's illness.
Returning the favor is what makes Kirsten's gift especially poignant, the family says. "It's really cool to give back to a facility that gave so much to us when we really needed it," Connie says. "it is like we're taking turns," Kirsten adds.
The toys, sprawled across the living room floor until they can be delivered, range from Teddy bears to a Chutes and Ladders board game to Barbie dolls.
Mike Strayer says he's thankful for his daughter's decision. Most kids, including his own, have more toys than they can play with, he says. He already makes two trips a year to the Salvation Army to drop off extra toys. A few extra toys isn't that special to them, he says. "But when they're in the hospital, it doesn't matter," Mike says. "It brightens up their day.
Connie Strayer says she hopes Kirsten's gesture can start a trend for other children in the area. A few of Kirsten's party guests brought presents for the foundation and for her, so she wasn't completely empty handed.
Does she plan the same kind of party next year? "Maybe," she says. I think I'll ask them to bring money too."

We are so proud of Kirsten to think of others, before herself. Great job Punky Pie!!!

Now I must share that she has a friend who is having a birthday party and plans on collecting toys to also donate to charity. This is awesome. We have a very brilliant little girl here. Gotta love her.

Now onto an update. Next week we leave for CHOP for our annual scans. We will stay in Philadelphia Monday and Tuesday night. I am anxious to get the scans over and done with. Scan time always stresses me out a bit. I think we will find out next week, that if all goes well it will be our last scans. This is a good thing but also a scary thing. Keep Jared in your prayers as we head to CHOP next week. Let's hear continued NED (no evidence of disease).

Please also keep Brandon Loose in your prayers who had scans recently, and found out the disease has progressed. Brandon has started new treatment and may this new treatment put a halt to his disease and disease progression. (Caringbridge link below) Stop by and drop them a line so they know they are not in this alone.

Also keep Emily Adamson in your prayers. Emily (7) and her family have been battling relapsed disease. They were just told that the cancer is so bad now that they need to decide what they want to do, keep fighting and have her go through more surgery, which in the end they say will not change the outcome, or give her pain meds and keep her comfortable for the time she has left. Both of those decisions suck for any parent to have to make. Say an extra prayer for them to have the strength and courage to make a decision and carry out whatever they decide. Neither choice has a happy end. And we can continue to pray for that one miracle to happen................ I have added a direct link below for Emily's page too.

Connie

P.S. I have moved our THON pics to the photo album. Check them out, they are cool.

Tuesday, February 26, 2008

Last Friday morning we were off to State College. Ended up leaving at 8 a.m. due to bad weather and actually it was probably a smart move. The first hour was smooth sailing with minimal snow/sleet to deal with. The last hour we ended up hitting some sleet but not to bad. We checked into the hotel and then straight to the pool/hot tub. Oh what a wonderful thing a hot tub is. The kids had fun just hanging out in the hotel all day and relaxing.

We ended up arriving at THON in time for the kick off. It was amazing. The energy and enthusiasm in that one room is AWESOME. All those students, there to be on their feet for the next 46 hours, and not for themselves, but for cancer families..................totally amazing.

Our dancers from L.I.F.E. house were Michi and Reeni. Two amazing young women. That is all I can say. Thank you Michi and Reeni for caring so much to help us and all families diagnosed with cancer. These young women and gentleman are amazing in all that they do. They not only stay on their feet for 46 hours but they do it with such grace and energy. All weekend long they have fun playing with the kids. It is like a room full of "little kids" there just to have fun and entertain.

Every year when we go to THON we meet so many new people and link up with so many old friends that the kids feel like they are in heaven. The kids are the center of attention all weekend long. The Penn Staters do not complain about being tired or anything! So even after they have been up for 12, 24, 36 or 46 hours they still have enthusiasm and entertain the kids.

Kirsten loved dancing with them. One minute she would be standing there dancing and the next moment she would be carried away on someone's shoulders to run through the crowd, yell and have a blast. She met many new friends and Kirsten being the social butterfly she is loves it.

Jared well he is not much into dancing but he loves water gun fights. That has to be the best part for him. He would run around with a squirt gun and find someone else who had ammunition. aka, water, and just squirt them nonstop.. You would see him and his new playmates (the dancers) weaving in and out of people, using innocent bystanders as a shield to avoid getting wet, and the next thing you would know he would be drenched. Drenched with water just like his opponent. And he loved every minute of it. He would link up with a dancer and off they would go with him on their shoulders to squirt anyone and everyone they could. No one cared if they got wet. It was like being at an indoor water park.

That being said, I must say that Kirsten really gets the meaning behind THON, to raise money for cancer families. She understands why this is so important and what it really means. Jared well I think he knows THON raises money for cancer but that is it. He doesn't really understand the consequences of cancer like Kirsten does. He just knows they are there to have fun. And that is the way it should be. To be young and innocent, is sometimes a good thing.

There is a part of THON were they recognize all the Four Diamond families and show a remembrance video of the kids who have lost their battle with cancer in the past year. By the time this video is over, there is not a dry eye in the gym. Kirsten knows and understands what this video is and why it is being shown (these kids are now angels). Jared just thinks it is a video of kids pictures. But I must say as we stood there watching it, Jared reached up and held my hand.......now is it because he understood or is it because he feels the mood of breaking hearts and shedding tears? I do not know. During that video all you want to do is hug your kids and be so thankful you have them with you. Your heart breaks for those no longer here fighting this battle. But that being said, is that not what THON is about? THON is about raising money to help cancer families, raising money for research so there are less kids pictures to view on the video next year.

We would like to thank all the Penn State students who participated anyway/anyhow with organizing THON and all the dancers who gave up their time to go out of thier way for others. We love you all.

THON RAISED A WOPPING $6,615,318.04 FOR THE FOUR DIAMONDS FUND!!! IS THAT AMAZING OR WHAT?

Here are some pics of the weekend. All these people we were reunited with and met for the first time are near and dear to our hearts. Just look at the fun and enthusiasm in the room and you too will understand why it is so amazing............

I also must mention that it was great seeing Sylvia. Sylvia is a dear lady I met through a fellow cancer mom at Hershey. She and I communicate with e-mail and meet once a year at THON. It was great seeing you. Sorry we missed you Saturday night. Michele, I want to see pics of this new man in your life. Sorry we did not get a chance to link up with you and meet him.

Sunday morning we went to brunch with some of our "old" friends from THON. It was great seeing you all again and spending time with you. Jason, Sara, Holly, Tom, Liz and Emily thanks for linking up with us. Yes, that was the most expensive breakfast I ever ate, but lets face it, Jared ate enough food to pay the bill. Just kidding.

Erin, thank you for everything. You are a great person. Thank you for allowing Kirsten to stay at THON Saturday night and attend the pep rally when Jared and I were wiped, and went back to the hotel to swim, sit in the hot tub and relax. Kirsten loved it. She loved being with you and being the center of attention. You are a fantastic lady. We love you all.

One cool thing is Sunday morning the kids were swimming and I was reading the paper and when I opened it I was shocked to see a big picture of Kirsten in there. It was great. She loved it.

I could literally go on and on forever about THON and how much fun it is, but I will stop.

Just know that the kids had so much fun this past weekend that they are still talking about it. They had the chance to meet many great people and made memories to last a life time. THANK YOU PENN STATE. I love you and so do the kids, you are appreciated and admired more then you know. GO STATE, BEAT CANCER.

Best wishes to all and keep in touch, love ya.

Connie

Thursday, February 21, 2008 5:11 PM CST

Well tomorrow we are off to THON. Looks like some slick weather to travel in. Calling for snow starting tonight at midnight and continuing into tomorrow with a snow/sleet mix. I was planning on leaving around 12 noon after I could come home from work at 6 a.m. and get a few hours of sleep, but now due to the weather they are calling for I think I am going to leave in the morning after work to avoid the sleet as much as possible. If I feel up to it, that is. Should be an interesting drive up. Well worth it though. Mike will have a quiet weekend at home by himself. What will he do without us? RELAX, I am sure and catch up on school work.

Last weekend we had all the sickies. Kirsten fought a respiratory infection the entire week last week. She had improved enought to swim in her divisional swim meet. She did a great job too, way to go Kirsten. Jared had the GI bug Friday night and was throwing up. He ended up missing his wrestling meet on Saturday. Mike struggled with a high temp and feeling horrible all weekend which landed us in the ER at 5 a.m. Monday morning and he was diagnosed with Strep throat. Gave him an antibiotic and a shot of decadron and sent us on our way. He is much improved now.

At least this week has been nice since the winter sports are now over. No rushing around to cram supper in ourselves by 5 to make it to practice by 6 every night of the week. I really have been enjoying the quiet life. we are free for a few more weeks until soccer starts for Kirsten. Jared wanted to play soccer too, but there is no under 10 Spring soccer team fr boys. Therefore, he has decided to take the Spring off and "ride bike and fish" (his words exactly).

Well gotta go now but think of us this weekend. If you get a chance log onto the dance a thon's site and see the live video of the event. I would like to also thank everyone who donated to THON and those who had the opportunity to send mail to the dancers. All your support is appreciated.

Also some good news with NB. A little girl from New York (Janie Kashino) who had relapsed in December just had scans done and is back to NED (no evidence of disease). This is fantastic news. Say a prayer that she stays NED forever now.

God bless

Connie

Tuesday, February 12, 2008 5:59 PM CST

Jared went to his wrestling tournament this past weekend and ended up coming away with a second place trophy. (see picture above) He was so thrilled. He carried that trophy around with him everywhere on Saturday and showed it to everyone he saw. It was so cute. We are so proud of him.

His first match he was to wrestle, the boy was sick and so Jared automatically went into the finals with a win by forfeit. The boy Jared wrestled in the finals was good. The match the little boy previously wrestled in, he pinned the other kid in 12 seconds. Jared did not let him pin him though. He fought the entire time to not get pinned and he succeeded. Jared lost to him by points but not by a pin. This automatically put him in second place. How awesome is that!!. If you could have seen him on Saturday, you would have loved it.

Kirsten has her sleepover birthday party this past weekend. We ended up with 12 girls counting Kirsten. See I did stick to my guns regarding how many to invite. The girls had fun and they were pretty good. Of course there were some "catty arguments" but what do you expect from 12 little women?!? It was a busy night and a late one too. The kids finally went to sleep around 3 or 3:30 but I think I passed out around 1 or so. I think everyone ended up having a good time.

Kirsten and her party guests, including Jared.

Kirsten did end up doing the gift donation project for Hershey Med Center's children's hospital. All her friends and some family assisted her by donating toys to give to the hospital. It was fantastic. We are planning on running the toys down to Hershey next week. We are proud of Kirsten for thinking of others, more than herself. She is turning into a smart little lady with a HUGE heart.

Kirsten wanted us to make her cake this year then she chose how to decorate it.

Tomorrow on the 13th is Kirsten's real birthday. so....................

HAPPY NINTH BIRTHDAY KIRSTEN, WE LOVE YOU !!!!!!

10 days left till THON. Get those letters of support in the mail and thank you for your help.

Today it snowed and school was closed. Kirsten stayed in all day due to battling a cold and low fever. Jared was out shoveling and playing in the snow. That boy is always so busy. He loves to shovel snow. He will usually shovel the entire drive way by himself, if we let him, but of course, Mike helped today. Jared shovels the driveway, yard, or anything that has snow on it. Tonight we are to get an ice storm. So it sounds like more cold and slick weather coming our way. Oh well, just so it gets it over with now so next weekend we have a snow free drive to State College.

We can not wait to see our THON friends soon.

Connie

Thursday, January 31, 2008

Last weekend Jared did awesome at his wrestling match. He had his first win by a PIN!!!!! His very first match he pinned the other little guy. If you could have seen his face and actions, it was awesome. He put his little hands together, jumped up and down saying "yes, yes, yes". It was so cool. Now after that it went down hill. He was pinned on his second match and his 3rd match he lost due to points, but should have won. For some reason the ref did not give him back points in the last 30 seconds of the mach that he had and deserved. The coaches and us could not figure it out. So he ended up not winning that match but rightfully he won. Oh well, not the end of the world. It was so fantastic to see his enthusiasm. Gotta love him........

Oh I have to tell you about Kirsten too. She is way to tricky. OK let's start by saying last year for Kirsten's birthday party she had a sleep over. It started as a medium sized event and until it was all done and over with we ended up with 18 girls. Wow what a night. So this year I told her once again she can have a sleep over. But we debated on the number of girls. Originally I was thinking about 6-8 girls but agreed to 10. Let me just tell you that Kirsten had a list of 15 she wanted to invite but I made her downsize it to 10. So we print off invitations and she hands them out. The next morning I come home from work and she pleads with me to let her invite one more girl. "She has to invite her, she is a great friend, she wants her to come, PLEASE, PLEASE, PLEASE" So you know the rest of the story............mom said "OK" (sucker). So I think this is the end of it, right? No way!! SO the next night I go to work early and on my way home that morning I see that I have a message on my phone. You can guess who it is and what they want. It is Kirsten wanting to add one more girl............... When I get home from work, she is up and being as sweet as pie to me. Oh yea, this girl knows how to work you. Finally she asks me if I got her message? I said yes I did and the answer is no more can be added. She pleads and begs and this time I continue to say "no". Finally I get it through to her that 11 is the limit and not to ask for anymore. It just can not happen. But she is such a stinker and manipulator (in a good way, that is). She is way to smart for her 8 years. She proceeds to tell me that all her friends think "her mom is the greatest". Especially when I left her have such a big party last year. At which point I laugh. OK if her friends said this last year, why does she wait till now to tell me this, one whole year later? To butter me up? She knows how to work ya, that is for sure. But to end the story we have 11 girls invited, no more, no less, 11 is the final answer.............I think. Just kidding.

Friday we are taking the ids to see a 3D movie of a Hannah Montana Concert. The kids are excited about it, especially Kirsten. You know I really wanted to get a real concert ticket for Kirsten for Christmas but they all sold out so fast that I could not get any. So this is the next best thing. It should be loud and fun.

I am again going to post some THON dancers for anyone who would like to send support mail to them that will be delivered in the middle of the night Saturday during their 46 hour dance-a-thon. Please send mail if you can:

REENI PANDYA #281B
MAIL CALL
210 HUB
UNIVERSITY PARK PA 16802

MICHI MCEVOY #281A
MAIL CALL
210 HUB
UNIVERSITY PARK PA 16802
RACHEL WALLA #16B
MAIL CALL
210 HUB
UNIVERSITY PARK PA 16802

PATRICK KOCHANASZ #137B
MAIL CALL
210 HUB
UNIVERSITY PARK PA 16802

DAN CORRADO #139A
MAIL CALL
210 HUB
UNIVERSITY PARK PA 16802

KATIE TROSKOSKY #139B
MAIL CALL
210 HUB
UNIVERSITY PARK PA 16802

Lauren Dock #200B
Mail Call
210 HUB
University Park PA 16802

Perry Bindelglass 90A
Mail Call
210 HUB
University Park PA 16802

Jessica Tirone 90B
Mail Call
210 HUB
University Park PA 16802

Kerstin Schlachter 91A
Mail Call
210 HUB
University Park PA 16802

Laura Beck 91B
Mail Call
210 HUB
University Park PA 16802

Thank you again for your continued support and for checking in on us.

Connie

P.S. If anyone wishes to donate a toy for Kirsten's toy drive for Hershey Medical Center's children, please bring it by or send it to us. You can e-mail me at tinkerbell53@netzero.net and I will send you our address.

Sunday, January 27, 2008

As THON approaches it is getting time to do our "MAIL CALL". This is where we send mail in (a head of time) that will be given to the dancers during their 48 hours to inspire them and let them know why they are doing what they do and how important what they do is. Below is our dancers names, number and address. Even if you are not participating in THON you can send them an encouraging message.

Michi McEvoy (281A)
210 HUB
University Park, PA 16802

Reeni Pandya (281B)
210 HUB
University Park, PA 16802

I know any mail sent to them will be appreciated. We have never met Michi in person yet. Can't wait to meet her. We have met Reeni when the Penn State students came over to our house for a sleep over and "canning". Good luck ladies and we will see you soon.

Jared ended up getting that head cold that is going around. We actually kept him home from school on Friday to allow him to rest, relax and hopefully kick it. On Thursday night he was running a temperature of 101.3 He is way to smart...........he had wrestling practice on Thursday night and (even before we knew he had a fever) he said, "I don't think I should go to practice tonight because I keep coughing and I do not want to make my friends sick" How many kids would say that, especially when he loves wrestling and going to practice.

The kids report cards were sent home on Friday. They both are doing so well. Kirsten is a hard little worker and did great. Jared has improved so much too. Especially since he now has an IEP for reading. He is now doing great with his spelling words and is doing a great job reaching his individual goals. We are so proud of both of them. GREAT job kiddos!!!

I did not update last week but we wanted to mention Grammy K (my mom). Last Monday she celebrated her birthday. HAPPY BIRTHDAY!!!

We have been having some pretty cold days here. OK now we have officially experienced Winter so it can go away and bring us Spring. We are ready................

Have a great week and if you get a chance send a letter or card to our dancers to show them support.

Connie

Tuesday, January 22, 2008

Things are going well here. It is amazing how fast time goes.

We are getting excited for THON. It is only like a month away now. THON is where the Penn State kids raise money for Four Diamond families (families dealing with cancer) at Penn State. If you want to donate money to Four Diamonds go to their website at www.thon.org and make your donation. They are selling tickets to a really cool raffle that occurs on THON weekend too. The tickets are $5.00 each and they too can be bought on line on the web site. If you do donate to THON use our organization LIFE house. Any help will be appreciated.

Speaking of THON and Four Diamonds I am going to share something with you that we think is amazing. Kirsten's birthday is coming up here on February 13th. Instead of getting gifts at her birthday party for herself she has decided she wants to help other kids. So in lieu of gifts for herself she is asking her friends and family to donate to Hershey Med Center. She is still debating which way to do it 1) collect money give to Four Diamonds or 2) have people donate new toys to give to the Child Life specialist at the hospital so that the toys may be given to kids. This is a n awesome thing for her to do. We are so proud of her.

I can tell you that my kids loved the toys they received when at the hospital in-patient. They plan games and bingo and to go look at the new boxed toys and pic one for your very own was something they loved to do. So I think this is a fantastic idea. Guess our little girl s rowing up. Going to be nine soon and acting like a teenager, of course.

Mike is doing well in school. The first week was rough but now I think he is getting into the swing of things. He is getting into it more and I think he is liking it.

Jared is loving wrestling. Last week he had 3 matches. Won the first one due to a forfeit (the kid did not show up). He did not win the next two rounds but he is a winner anyways. He is awesome. He fought the entire time and refused to allow the other kid to pin him. Such a little fighter. Which is the story of his life. A fighter all the way to the end and a winner.

I can tell that I have scheduled our scans. Start getting a tad bid nervous. They are not til March so I am trying to forget about them. I think this is our last time with our regular oncologist at CHOP (Children's Hospital of Philadelphia) and then after this we start with the long term effect clinic. We shall see. Unfortunately this year we can not all go with Mike being in school. Missing school is not really an option for him, so we may have to go without him. Which is OK because then Kirsten may have the possibility of staying home too. Well more than a month away so no time to worry about that yet.

Thanks for stopping by and keep all the NB families in your thoughts and prayers. Until next time, take care.

Connie

Monday, January 14, 2008

Jared had a wrestling meet Saturday and at the end he was thrilled. He was to have 3 matches but only had the opportunity to wrestle 2 of them. His first match was lost due to points and he won the second match due to points. He was so thrilled to win. If you would've seen the big smile on his face when the ref held his arm in the air at the end to claim him the winner, it was priceless. I think that is exactly what he needed to boost his confidence. It was precious to watch. And no one was PINNED. It was a battle to the end of the 3 minute period. GREAT job Jared.

From there we went straight to Kirsten's swim meet where she pulled out a first place in the breast stroke, a second place in the butterfly, third place in a 100 meter relay and was disqualified in the 100meter IM due to something with her turn from one stroke to the other. I never really did understand what she did wrong. Oh well, no big deal.

Both kids did great Saturday. They sure kept us busy and it was a long day............We left our house at 7:45 a.m. to head to New Oxford for the wrestling match, left there by 11:45 a.m. to get to Kirsten's swim meet in Waynesboro by 1 p.m. and arrived back home at 6:30 p.m. exhausted from the long day. But boy was it a day with great accomplishments for the kids and their teams. There was actually some points in the swim meet that we were behind by as many as 30 points and we came back and won by 15 points............that is AWESOME!!!! Those guys and girls all deserve a huge congratulations.

So you can guess what I did yesterday.................a little bit of nothing. Hung out and took the kids shopping and out to lunch with my mom. A nice relaxing day. Of course grammy buying the kids more webkinz made them happy and they spent the rest of the day on the computer. They just love those Webkinz pets. It entertains them for hours..........literally.

Mike started school last week. I think it was a little shock to the system. But one he can overcome. It is going to be a lot of work. But with dedication and hard work he can do it.

We ran into a fellow co-worker of his at the wrestling match (who is still working at their place of employment) and things do not sound good there. It sounds as if by summer or at least in the next year no one will be working there. So maybe the school decision was the best choice ever. We shall see..........

Continue to keep our fellow NB fighters in your prayers.

Connie

If you want something in life go after it!
Reach for your dreams today and everyday!
Live today to the fullest because tomorrow you may not get the opportunity to do it!

Saturday, January 5, 2008 5:15 PM CST

We had a great New Year's Eve. We all actually stayed up till midnight to watch the ball drop on TV (this is a miracle for me, that is for sure). We didn't do anything to special, just hung out at home. Around 9:30 p.m. the boys decided they were going to go out back and start a fire in the fire pit. Jared had fun running around (with his light that straps to his head) hunting for sticks/wood to put in the fire to start it and keep it going. He did a wonderful job. Before long they had a big fire burning. OK, this is when I showed up. Yes after all the labor work was done. My timing is the best. So we sat out there by the fire and enjoyed the warmth that came off it. (It was pretty cold out that night) Eventually we left the fire burn out and came inside to watch the ball drop. At the strike of midnight the kids called a few people on the phone to wish them a Happy New Year then off to bed we went.

New Years day we were finally able to get together with Mike's sister for Christmas. We exchanged gifts then took the kids and dogs for a walk over to the park. After our walk we went to Mike's moms for pork and sauerkraut. It was delicious.

So as we begin another new year we hope this year will be as happy and healthy as the last one. So far, so good. This year will see one major change with Mike being in school. Classes start this coming week. I am sure it will keep him busy.

Last weekend we took the kids hiking up at white rock. It was unusually warm that day. you can see from the picture on top how beautiful it was. These kids love hiking and so do mom and dad. If the weather is nice tomorrow we are going to try to squeeze a hike in. We shall see though. I also have to go into work early at 6 p.m. and I don't want to do myself in to much. I am not getting any younger.................just kidding.

Jared had his first wrestling meet today. He had two matches. In the first match he was pinned and the second one he lost by points but WAS NOT PINNED!!!! He had fun and that is the main thing. He is all about having fun. I think he did realize today though that the kids he wrestled against were not doing it just for fun, they wanted to pin him. At wrestling practice they have practice matches but it is fun and games with the guys goofing off but in the real match you have to be aggressive and want to win. I am just glad he loves wrestling and is not upset about not winning. He did great today. Every match is a learning experience and each match will bring about a new experience to learn from. We are proud of him. He was so funny last night. He has been so psyched for this wrestling meet the past few days that we figured he would have trouble sleeping last night. Well, he woke me up at 2:30 a.m. and 3:30 a.m. to ask me if it was time to get up and go wrestle? It was so cute. I just told him "no, not yet honey" then back to sleep I went. This morning he told me he did not go back to sleep he was to excited to wrestle.

Mike took Jared to wrestling and I took Kirsten to her swim meet. I could tell she was tired today. We left her spend the night at a friends house last night and you know how little girls are............up till after 1 a.m. (per Kia's mom and dad). When I arrived at 7:45 a.m. to pick her up for swimming she had just gotten out of bed and was still in her pajamas. We were able to arrive to the swim meet on time. (which if we were late it would not have been the end of the world). She swam breast stoke 25, butterfly 25 and a 100 relay. Today was not her best swim times because I think she was tired but she did well. It is amazing to watch her and see how terrific her dive off the block is compared to last year. Getting that great start with a good dive really can put you a head of the rest. I know she is tired because as I type she is lying on her bed sleeping. This is a girl that never takes a nap so she must be exhausted.

So that is about all we have been doing. The kids have been amazing lately at playing together and just plain having fun. Well have a great week and God bless.

Connie

Friday, December 28, 2007 5:45 PM CST

First off I must share that today is Michaela Mease's birthday. She should be 12 today but instead is 8 forever thanks to this horrible disease (neuroblastoma). Take a moment if you can and stop by Michaela's web page (link at the bottom) and leave her family a message to know that even though Michaela is not here on earth with us she is remembered forever and ever..........thank you!!!!

Where does one begin with Christmas. It was a blessed holiday. When I say Christmas is for kids, I mean that. Leading up to the Christmas Holiday I really had to think about what the kids would really appreciate. What would give them that "WOW". I think we hit the nail on the head for this year. Let's face it, kids want want want and mostly, in our kids case, it is just that, a want, not a need. I love to see their little faces when they open their presents and are utterly amazed with what is inside. The look and reaction you get is PRICELESS!!!! Believe me I know because I captured it on video tape to watch over and over and over again. Yes, I have already replayed the Christmas video a few times..........OK actually about 4-5 times. I love to see their faces light up and hear the excitement in their voices. I want to cherish those memories forever and ever. And when they get older we can show their friends and tease them about it. (just kidding about that).

Our holiday began Friday the 21st when we attended a "sing a long" at Mike's sister's house. We all get together, eat food and sing Christmas carols with the player piano. The kids love it and have a blast. They are singing loudly, shaking bell, wearing Santa hats and just having a grand ole time. The major concern is which kid is going to share the piano bench with Uncle Tom. Of course, it is always worked out by the kids alternating and taking turns.

Christmas Eve the kids were so excited for Santa to come and deliver their presents. Talk of what they would get and when they would get out of bed was all that could be heard. On Christmas eve it is our tradition to give the kids one present from us. Usually we give them a small token gift to open but this year we decided to give them one of their major gifts. As we sent the kids inside to our room (so they wouldn't see our secret hiding place) while we retrieved the presents they were jumping around and giggling with joy. We made them come out with their eyes closed and then ..............Jared opened his eyes and saw his shiny blue bike with "gears and hand brakes" just like he wanted. His yell in surprise could probably have been heard for miles. He was thrilled.

Image and video hosting by TinyPic

Next came Kirsten who had to unwrap her gift. As he tore the paper off the box she was so excited and then something happened. She saw a shoe box in front of her and wondered in surprise, "You got me shoes?" But as she opened it and found her Aly and AJ CD inside with concert tickets attached her excitement built and she too was excited and thrilled. Kirsten's most excitement came on Christmas morning when she opened the cell phone she so badly wanted but knew (or thought) she would never get. Now that was Kirsten's best gift to open.

Image and video hosting by TinyPic

Although we talk about what the kids wanted and what they ended up getting we all know that Christmas has another meaning to it.

Christmas day we ended up going to my mom's house for a late lunch then off to my dad's house for a visit. Finally around 6 p.m. we returned home to relax. Christmas is always so busy seeing friends and family. Which we do enjoy.

On Christmas Eve day I was visiting other web sites and I sadly realized that Janie a little girl from New York who had treatment at CHOP as we did, had relapsed and was back in treatment. Reading that was sad. My heart broke for Janie and her family to have to go through all this again. I pray and hope she can get back to NED (no evidence of disease). It made me both sad for them and so thankful for what I have. I went upstairs and gave my two wonderful kids big hugs and kisses and told them I loved them. Oh how I do appreciate life so much. Even when things are crazy and my kids aren't listening to me I am still so thankful to have them both here and healthy. Not to bring anybody down or make anyone sad but darn it this is a reality for many families. That reality sucks. Plain and simple there is no other way to put it. I pray we never have that to deal with. I pray not another family ever has that to deal with.

That being said I am going to go for now. I wish everyone a safe, healthy and happy new year. Now go give your family a hug and tell them how much you love and appreciate them.

Connie

Wednesday, December 19, 2007 7:28 PM CST

OK OK winter is really here now. About two weeks ago we had our first snow. It was not the biggest snow I have ever seen. In fact it was only a few inches or less. Nonetheless, when the kids came home from school (with an early dismissal at that) they instantly put on their boots, hats and gloves and went out to make tracks in the fresh fallen snow. Of course they had the sleds out too but seeing that the snow was so minimal sledding was kind of difficult to do. But boy did they try. Kirsten had fun making snow angels and Jared, well he just ran around the yard. I wouldn't mind a little of the white stuff for Christmas. I love a white Christmas. It is so pretty...................have to wait and see what happens.

This weekend we were to get snow at first but then ours turned out to change and be primarily ice. The trees sure were beautiful though with the ice hanging from them. Hard on the trees and the electric wires (since many people have been without electric for a few days now). We of course are the lucky ones so far. We still have our lights and heat. Hope it stays that way.

Sunday we took the kids for a walk around town. It was neat to see all the ice. Of course when we walked through the school yard it was a lot of fun kicking the metal fencing around the football field and see and hear all the ice fall off. Jared was soaking wet before our walk was even half way through. We even walked to the lake and fed the ducks. It was cool, we were the only ones there doing that.

Jared and Kirsten decorated ginger bread houses at school. They are so proud of their houses. Well proud to show it to us then to "munch" some of the candy down. Gee, I hope it really was OK to eat the candy like the teacher said. Just kidding, it was.

We took the kids to see the movie Enchanted. Oh how they enjoyed us. Kind of a kid movie with a love story in it. Mike and I enjoyed it as much as the kids did.

Christmas is approaching us fast. Less than a week to go yet. Tomorrow I will have all my Christmas cards in the mail,,,,,,,,finally. Shopping is almost completed. The kids are getting excited for Santa to come. They went the other week to sit on Santa's lap and tell him their wish list. It has toned down some. Originally Jared wanted a Chrysler Town and Country van. You know the one with the 4 TV screens and seats that turn. Oh yea, a real car!!! I think he has decided now that we don't really need it. Thank goodness. Plus Santa couldn't bring it down the chimney either (ha ha just kidding). Jared already had that figured out. Santa would leave it in the driveway. Jared has now decided he wants a race track, cars, a cell phone, toys and etc. Kirsten wants a cell phone, camera, MP3 player, IPOD, laptop computer, Webkinz and so fourth. As they get older the list gets bigger and more elaborate. But I really must say the Van kinda threw me this year. Thank goodness he changed his mind.

Third grade performd their Christmas concert on Monday night. It was a concert with singing about Christmas around the world. The kids worked so hard on it and it was neat. We enjoyed it. Great job kids.

Kirsten and two of her friends at the concert. Two of them had matching outfits, (Yes they planned this.)

I hope everyone has a very Merry Christmas. God bless.

Sunday, December 2, 2007

We had a great week and weekend.

We met with Jared's school/teachers. After the schools evaluation they do not feel that ADHD is an issue. He does not fit the typical ADHD pattern. They think it more so has to do with being overwhelmed when there is too much stimuli or things become more complex. We now have an IEP in effect. He will be getting reading support every day for 1 hour and 40 minutes. Which is great. However, he will now have a different reading support teacher. His new teacher seems very nice and he seems to have taken to her already. Which is great. I must admit though, he really liked Mrs. Caldwell and I was worried about switching him but the transition has seemed to occur without a hitch. He is excited about his new reading program. Which thrills us. He is a hard little worker that is for sure.

We went to open house at school for Kirsten's grade. She was excited to show us all her classrooms and the projects she had done. I think more importantly she wanted to just meet and socialize with her friends. (Typical for Kirsten ha ha).

We went on our annual Christmas tree hunt. Finally we were able to agree upon a tree. Not an easy task for the 4 of us. Whichever tree one person liked the other ones did not. The kids were happy to come home and decorate the tree. They were allowed to stay up till 10 on a school night to complete it. That is late for them. Here are some pics of our Christmas tree hunt..............

(posing with our tree prior to chopping it down)

(The guys faught the tree and the guys won)

(the treee is loaded and we are ready to head home and decorate it)

Friday night we had our friends from Penn State L.I.F.E. house come down to spend the night. There were 5 of them who came. They arrived and ate supper then the kids just played games all evening till bed time. Kirsten and Jared had a great time with them.

(I am not sure who had more fun building Lincoln logs, Joel and Andrew...........or Jared? I will give you a hint the winners are the older kids.)

Saturday morning then we went "canning" in Carlisle. We started at one place but then half of us ended up moving to the square to "can". It was exciting. Kirsten and Jared did not start with us but did come in and join us for a little while. They liked it too. Kirsten liked holding the can and accepting donations. Jared became bored in a short period of time and then Mike and Jared left because Jared had a birthday party to go too. We canned from 9:15 till 1pm and ended up raising $966.65 for Four Diamonds dance-a-thon!!! That was great. I was surprised we made that much. It was awesome and the generosity of the community was great.

It was amazing how many people made comments like, " I am a Penn State grad., I attended THON before, I danced at THON before, I was a recipient of the Four Diamond's Fund" and so fourth. What Penn State does to support the cancer families from Hershey Med. Center is phenomenal and awesome. We sure did appreciate all of Four Diamonds support when we were in treatment.

(Jared was not here to be in the pic since he was at a b-day party)
Back Row: Me, Erin, Julie and Rene
Front Row: Joel, Kirsten and Andrew

Anyone wishing to donate to four diamonds can go to the website and make their donation. Our organization at THON is LIFE house. They have been our sponsoring organization for the past 3 THONS. We look forward to another year with them. Thank you LIFE house for making the kids feel special. Go Penn State!!!!

We also continue our fund raising for Lunch for Life. These are both wonderful and worth wile organizations. Any donation to either one would be appreciated.

Last week I had a jewelry party put on by my fellow cancer moms (Kim Mease and Jamie Eager). It was fantastic to see them both. Their jewelry sale business is thriving. Great job ladies. They traveled from Lancaster and Ephreta to do this show for me. More importantly I loved seeing them both. They are both like family to me. I love you guys. (Oh boy, I just realized where Kirsten gets it from.....................her socialization and doing anything to see and be with friends..............she gets it honestly from me!!!!). OK Guess I will have to cut Kirsten a break since it is honestly inherited trait!

Jamie's son Brandon is in relapse treatment now. His last treatment was not as effective as they had hoped and he is now doing another new treatment. Friday he ended up spiking a temp of 107. Of course this landed him in the hospital, which is something he dislikes. I went down to Hershey yesterday to visit them and I must say the boy is a genius. Brandon controls that electric bed like a pro. It is almost like he had driven one of those things (the bed) before. He takes it up high, puts it down low, brings the foot up and down and the head up and down until he has himself almost smashed up like a pancake. Looked like fun. Guess he has to do whatever it is that makes him happy and entertains him. It can be very boring in the hospital so these kids learn to entertain themselves any way they can. You can tell to that Brandon was feeling better. Really though.............he looked fantastic. He is such a little fighter. I love his personality too. Awesome is all I can say. It was really great to see him again. I love you guys!!!

You can visit Brandon's webpage below and Kim's daughter's website also has a direct link below this journal entry.

Well that being said I am going to go. Have a great week.

Connie

Sunday, November 18, 2007

Our Lunch for life fundraiser is underway and going well. Thank you for your support. One new thing that Lunch for Life just came out with is cookbooks. They asked the families effected by NB to donate recipes and children pictures and they created a cookbook. The cookbooks are now on the website for sale. All the proceeds from the books go to Children's Neuroblastoma Cancer Foundation.

I also want to share another fund raiser and special event coming up soon. Our sponsors from Penn State (LIFE house) are raising money for the Four Diamonds Fund at Hershey Med. Center. Four Diamonds helps families effected by cancer with financial issues and other things while going through treatment. Each February Penn State sponsors a dance a thon that raises tons of money for Four Diamonds. The fund raising starts with "canning". This is where the students stand at a road intersection with signs and cans and collects donations from passing motorist. We are happy to say our sponsor (LIFE house) is coming to Carlisle to "can" on December 1. They will be at the Hanover and Noble Boulevard intersection (near Walmart). Come support Four Diamonds. I have contacted the media and it looks as if ABC 27 NEWS will be covering the event live. Isn't that awesome. We love these Penn Staters and all they do help kids with cancer. Or you can go to the Four Diamonds website and donate on line. If you do donate on line, remember to donate to LIFE house. All your generosity is appreciated.

We can't wait to see our friends from Penn State. They will arrive on Friday night and we will have a sleepover here then go "Canning" on Saturday at the spot I mentioned above. GO PENN STATE!!!

Last weekend we took the kids to see Disney on Ice (High School Musical). They loved it and we did too. The music really made it fantastic and easy on the ear.

We met with Kirsten's teacher last week for conferences. She is doing well. She is not as "gabby" this year which is good for her listening skills. Kirsten really does like school. I do not know if it is the learning or the socialization but regardless I am glad she enjoys herself. She is getting excited about the Christmas program they will be performing this December. It is a musical. She was looking forward to getting a solo part but unfortunately she was not picked for a solo. I know this was difficult for her but we reassured her it was the way it was and not to get upset over it. It sure is hard being a little girl sometimes. She is an awesome little girl though........personality and all.

This past week I did career day at school with Kirsten's class. It is funny because I asked them what they thought a nurse did and then we talked about hand washing, medicine, had them take a multiple choice test about the human body and then looked in ears and listened to our heart beat. After I got home I thought, darn I never even told them about my 8 hour day as a nurse or about why education is so important to becoming a nurse. Felt kinda silly that I didn't tell them this. Believe it or not at first I was nervous in front of a class of 3rd graders. Think in my initial nervousness I forgot the things I wanted to say. Oh well, I can not go back now and say it. Hopefully it was educational enough. I had fun and I think the kids did too. I love doing things like that with the kids though. It is also rewarding.

We meet with Jared's teachers in about 2 weeks to see about setting up an IEP. All the evaluations have been done and I am anxious to see the outcome and what additional measures we will put in place. I tell you things are clicking with him a lot easier now. This is a blessing for him. He has now learned all his sight words he has had since the beginning of the year. This is a wonderful accomplishment for him. Mike had promised him when he learned them all he would take Jared and a friend to the movies. So last week Mike took Jared and a friend to see the Bee movie. I think they had a terrific time.

Swimming is going well for Kirsten this year. I can not wait to see her at the swim meets. Her technique has improved so since last year. And it is something she loves. Last night I took the kids to rec swim and we met some of their friends there. They must have went off the dive 50 times each. Made them sleep good last night too. (ha ha)

Jared has had wresting practice 2 nights now and is so psyched about it. Oh my gosh you should see him. The first night he came home and was so excited. He kept saying "mommy mommy look, I learned this and this and this and this.............." He was funny and cute. I looked at Mike and said "I take it he liked it" and started laughing because it was obvious. That is good he likes it. I hope that enthusiasm remains the entire season.

Thanksgiving is coming up quick. We are heading to Mike's brothers for dinner that day. Guess we will stuff ourselves with turkey and stuffing. I hope everyone has a nice thankful thanksgiving with their family. God bless.

Connie

Friday, November 9, 2007

Well we no longer have 2 swimmers in our house. Both kids were swimming with the swim club but Jared kept debating if he wanted to swim or wrestle. He has now decided he wants to wrestle. We don't care which he does. So now he is going to wrestle instead. It should be good for him. He is all psyched for it. Practice starts this coming week. I must admit being the mom I do worry a little bit because wrestling can be an aggressive sport. But I guess it will go OK.

The kids will end up having meets on the same days (Saturday mornings) so Mike and I will have to split and take turns taking the kids to each of their meets. It will definitely keep us busy but I think they both will enjoy their choices.

Kirsten is really enjoying swimming this year. She can dive this year (learned over the summer) so that will give her an advantage she did not have last year. The main thing about the sports is it provides the kids with exercise and socialization with others.

We have parent teacher conferences coming up this week with Kirsten's teacher. She is doing well but it is amazing how tough third grade is compared to her past grades.

We are into our Lunch for Life fund raiser I was talking about. All of the money raised goes to Neuroblastoma research which is definitely needed. I know this every day of the year. As I read the NB list serve tonight I read about a little girl (Emily) who has once again relapsed. This is something no child or parent should have to hear, yet............it happens way more often then it doesn't.

Please keep Emily Adamson in your prayers as she starts a horrendous treatment that no child should have to endure.

Please continue to keep Brandon Loose in your prayers as he heads to CHOP this coming week for scans. Pray his parents hear his relapse treatment is working to get him back into cancer free mode.

All parents with a child diagnosed with NB feel as if there is a black cloud hanging over their head.................. just waiting and praying that the day never comes that we hear the disease is back or even worse that there are no more treatments options to try to fight the relapsed disease. This is a reality to many. We need to stop NB in its' tracks.

You can help stop it by donating to Lunch for Life and helping find a cure.

That being said I must say that the longer Jared goes with no evidence of disease the better the outlook is and the less I think about the disease. However, there is not a week or a day that goes by that I do not think about Neuroblastoma. I think about what he has been through, pray he always remains disease free, think about my friends and people I have met who have lost their children and I think about all the children who are still fighting. There is an endless list of things I think about. This is just a few of them..........

I can not even begin to add up the number of parents who have lost their children to NB over the past 4 years. The number is outrageous. I belong to an e-mail support group called the NB list serve. On this list is parents from all over the world who have children with NB. Some parents just diagnosed, some like Jared who are post-treatment and doing well, some in active treatment, some in relapsed treatment and some who have lost their children. Everyone is there to support everyone else no matter what phase they are in at the time.

We are one of the lucky ones. I am thrilled we are still cancer free. But I can not turn my head and stick it in the sand and ignore the fact that a lot of kids are not where we are. My goal is to help others. Help others cope, provide support and raise money to help make their children cancer free and live a long happy life, like they deserve. That is why every year I send out letters for NB awareness and assist in raising money for NB research. Right now we are OK and hopefully we always are but if we ever needed the treatment I would want an effective treatment for Jared and that can not happen without more research.

So I will not end this in saying thank you all for your support be it emotionally or financially. God bless and take care.

Connie

Tuesday, November 6, 2007

It is now the Lunch for Life annual fund raising time of year. All my friends/families will be receiving or have received information from me. Some by e-mail and some by snail mail.

The past two years through family, friends and organizations we were able to raise near $20,000. This year I hope we can surpass this amount. All the money goes toward Neuroblastoma research. Please help in any way you can. There is a direct link in Jared's site to Lunch for Life...........help yourself, visit it and donate. Jared's giving code is 26372.

That is it for now. Update later this week when I have more time.

Connie

Saturday, October 27, 2007

Lets see what have we been up to the past week or so...........

Last week the kids were both in the Halloween parade. Kirsten was in with the cheerleading squad. Yes, those girls had a blast and were very very noisy. Like you didn't guess that.
Jared decided he wanted to walk in the parade too vs. watching it. So we dressed him up in his Halloween costume and registered him. He had a great time just walking in the parade and handing out candy. Well last weekend we received a call that Jared won 2nd place and would be receiving a check for $25.00. He was thrilled to death. He can not decide what to spend his money on, but don't worry he will soon decide, I am sure of that.

Kirsten is still cheering. The football players won their first playoff game last weekend and play again this Sunday.

Swimming is underway and keeping mom and dad busy. Kirsten has practice M-W-F. Jared has practice on Tues and Thurs. so every night we are at swimming now. It is OK though. It allows them each independent time and 1:1 time with us too.

Last weekend we went hiking again with some friends and friends of Kirsten's. The girls had a blast. We went to Caledonia State Park and hiked. It was easier then the hike the week before but awesome. I think the kids are starting to really get into it as much as the adults. Kirsten, Kylee and Kia had a great time. Of course they are all cheerleaders so they also had the opportunity to practice their cheers on the way............ha ha. Jared, well he was outnumbered by the girls but had a great time too.

Kirsten has received two post cards from the school the last two weeks telling her how good she is doing. One from the principal and one from the assistant principal. She is a hard worker. But lately I noticed friends and fun have been taking priority over school work and interfering. So yes, we had to lay the line down. You can spend time with friends and doing sports but only if you keep your homework done and grades up. I think she gets it.

One thing I can say is this year is tougher than last year. Last year homework was one night and this year homework is every night but Friday. Math has been challenging to her. We definitely need to keep her on track and up to speed. I do not have doubts she can do it we just have to make sure she does do it. Oh she is a little stinker and will try to pull things over on us. All we have to say is,”I am going to ask your teacher about that.” and she will then admit she is not telling the “whole” truth or giving us all the facts. She is definitely keeping us on our toes. But we know she can do it. She is bright she just needs to realize that she can have all the fun she wants but only after schoolwork is done and correct. We remember being kids too....................

Jared is coming along with his schoolwork too. We are still in the process of setting up an IEP for him. I do not think it should take long to complete. It depends on how fast the school proceeds but right now it looks like things are well on there way. Jared has good days and great days when it comes to school work. I must say that he is a hard little worker. We are proud of both of the little ones.

Yesterday the kids had their Halloween parties at school. They were suppose to have a parade too where they walk in their costumes but with the rain that was canceled. They still had fun in their classes with games and snacks though. I went to Jared's party but of course I forgot my camera. Oh well..................

Well till next time, take care.

Sunday, October 14, 2007

It has been a while since I have updated. We have been busy, as usual.

Cheer leading is coming to an end soon. The last game should be tomorrow but the Pony team made it to the playoffs so cheering will continue for a bit longer. Today is parent's day at the football game. The cheer leaders will perform a dance routine at half time and they are psyched to do this. We can hardly wait to see it.

On Monday swim club starts. The kids are excited to start swimming. Jared was thinking about wrestling but decided now to swim instead. Which I must admit sounds great to Mike and I so we can do just one sport vs. two. My only hope is that Jared and Kirsten are at the same level so we can have practice the same nights. Because the beginning level practices Tues and Thurs and the next level up practices Mon Wed and Fri. So we shall see where that goes................

Last weekend we decorated for Fall. We had 8 kids here helping stuff the scarecrow and set up the pumpkins and gourds. They all did a fantastic job.

Last week Jared had to make a boat for school. We all had a lot of fun doing it. Jared and Mike used the jig saw, dremel and electric drill to make it, which Jared loved doing. He really put a lot of hours into that boat.

Yesterday we went hiking up to Flat Rock. We took some friends along with us. Kirsten's friend Kia and her dad (who we went to school with) went along

and Jared's friend Jordon and his dad went too.

Flat rock is a tough hike. I think everyone had fun but I am sure some people will be sore today. We hiked up and had a picnic lunch at the top before coming back down. It is a 5 mile hike up up up but fun.

We met with the school last week to see how Jared is doing. He is progressing since the beginning of school. They want to do further testing to be sure all areas of concern have been identified. We think this is a great idea. We do have measures in place at this time and we do see improvement but we need to keep a close eye on things. We are happy to say that thus far we feel we have the schools support 100 percent.

Last week Mike and Jared went on the first grade field trip to a gourd farm. Dad and Jared found it both fun and educational. Jared decorated a gourd with a face that he brought home with him. It sounded like a great time. I was hoping to go too but had an unexpected situation arise at work that morning right when I was ready to leave and ended up not getting out of work till 7:30 (vs. 6 a.m.) so there went my morning nap I was going to squeeze in, so I just stayed home and slept. Night shift is good sometimes but other times sleep takes priority over participating in fun things.

Speaking of work, Mike now has a plan in place. The idea of being called back to work for him is looking slimmer and slimmer. The unemployment office is working with him to either find a job or get an education to obtain a job. Mike does not really want to be a laborer the rest of his life and is planning on going back to school. He is planning on starting college in January. The career he has chosen is social services. He wants to be a social worker. Years ago he had worked at Tressler School for the Youth and loved it. It is like a detention center for troubled teen boys. So I think that is what may have made him want this field of work. I think it is an excellent move. Social work is a career and not just a job. Kind of like nursing. I love nursing because it is a career. I can do anything I want with it and it is so rewarding. That is what a social worker position would be like. It would be a job he loves and provide a rewarding feeling for helping others. I am happy for him. He is nervous about going back to school at 41, but I know he can do it. So life will be changing soon for him but for the better.

If you get a chance visit Brandon Loose's web site with the direct link below and send them some thoughts and prayers. Brandon just found out that his Neuroblastoma is back. He had relapsed and started back in treatment and then was considered no evidence of disease again. Well the last scan they did showed a new lesion on his skull and he is once again starting a new treatment. I tell you this little guy is an awesome boy and a fighter. Jamie is doing well but I am sure the prayers would be appreciated that Brandon gets back to treatment and kicks NB butt again. Keep Brandon and his family in your prayers.

Jamie (Brandon's mom) and I met at Hershey during Jared's treatment and she is a dear friend of mine. Her family is as important to me as my family...............

Well until next time take care and God bless............

Connie

Sunday, September 30, 2007

Things have been busy......................

First off I must share my story about Kirsten. You know in my last post I commented how she would not study for her test (because she did not have to, she knew it) and she ended up not doing so well on it (68 Well the next test we studied with her for it and guess what? She received a 100 That is so awesome. OK so maybe that was a lesson she needed to learn on her own. We are so proud of her. When she puts her mind to it she can do it. Good job Kirsten.

We are still in the process of setting up a meeting with the school for Jared. I am sure we will meet within the next week or two. It sounds as if he will qualify for an IEP. We shall see. I must admit though...........this past week Jared has been doing awesome. He is WILLING to work on his sight words at night and takes great pride in his successes. He is awesome. I think the more successes (correct answers) he has the more motivated he becomes and the harder he works to be successful. It is neat watching him get the words right and eager to do more. We love it.

I must admit that we (Mike and I) do put a lot of time into homework and review every night but darn the end result is phenomenal. It is so neat watching these little ones grow and develop.

Friday I went with Kirsten and her class to a field trip to Lake Tobias. It was a lot of fun. The kids loved the animals and the bus ride. For the adults ear plugs would have been beneficial for the ride (just kidding). I think the favorite part was the bus ride through Lake Tobias where they had the opportunity to feed the animals out of their hands when they walked up to the side of the bus.

Friday night Kirsten cheered at the Varsity football game. She loved it. As I have said before, cheer leading is Kirsten's calling. There were around 50 - 60 little girls cheering with the Varsity cheerleaders that night, so you know how many little girls love it besides Kirsten. Jared had fun at the game too. He was just running around with his friends and wrestling with them. Yes, his pants were completely green from grass stains when he came home. Mike and I enjoyed just socializing too with the many people we saw that we went to High school with and have not seen for years.

The kids went to Rays Town this weekend with my sister and her family. They are camping and having a Halloween party at the camp ground. Since it was so nice they stayed this afternoon instead of coming home early so they could go out on the boat and fish. I am sure they will be all excited when they get home to tell us all the details.

We are thinking about going to the Finger Lakes in New York this coming weekend. There are so many great hiking trails there at the state parks. Mike and I have not been there since before we had kids. We are hoping we do not miss the leaves changing color and STILL on the trees. It is so beautiful there. Our kids love hiking and so do we so I hope we can make it work to go. The kids have a long weekend off school this week so it is the perfect time to go.

Fall is one of my favorite seasons. Throwing on a sweat shirt and doing outside activities. Now we can really get some hiking in. We all love to hike and view we see when we get to the top of a mountain.

Have a great week everyone.

Saturday, September 22, 2007

Thought I would give a quick update here on how things are going.

On September 8th, Mike and I celebrated our 17th wedding anniversary. We went out for a dinner while my mom watched the kids and then we picked the kids up and took them shopping.. It was a nice evening.

We are finding out that school is a little bit harder this year. Kirsten has homework every night. She does OK with it but needs to put some effort out to get it done. She knows as soon as she gets off the bus it is homework time. Don't know if I should say this but I will.......Kirsten has always picked things up so easily in the past. This year is different in that she really needs to pay attention and work at it. So the other week she had a science test and I kept asking her and telling her she needed to study. She kept telling me she did not that she knew it all. Well, I did not push it then. I figured one of 2 things would happen. 1) she did really know it like she said or 2) she would learn the hard way she needed to study. Well the outcome was number 2. So we shall see how it goes. She had another test on Thursday and I am anxious to see the results. We did study with her so I think it should be better.

But one thing that is hard is how do you teach an 8 year old to study? They have never had tests like this before so it is a whole new ball game for her. I think we can get her there. But I must say mom and dad have homework too.

Jared is doing alright in school too. He has already started the reading support which is great. He has been bringing home books to read that they have read in class and he is so proud of himself when he reads them to us. Yesterday we took him for his evaluation at Hershey. I would say that all went well. Dr. Mayas came up with some wonderful suggestions to assist him in learning. We are excited to get them started. She will be mailing us a copy of the eval and her suggestions this coming week and then we will share them with the school and get them implemented. The eval was a wonderful thing. I feel so much better now to know what is going on and what to put in place to conquer his issues.

I have to sincerely thank the Four Diamonds Fund. Without them this eval would not have been possible. The Neuropsych eval is very expensive and Four Diamonds picks up whatever our insurance does not pay. Hershey is a wonderful place. That is what THON is all about. THON raises money for Four Diamonds. What an awesome thing.

While we were there yesterday we stopped up to see Dr. Frieburg and his nurse Pam. It was nice to see them again in the setting when we were not there for treatment just to say hello. We also ran into Greg our Social Worker from Hershey. Greg has always been one of those to go out of his way for you. He is wonderful. He also is the one who set up this appointment for us. So thank you.

Well life seems to be going well.Have a great weekend everyone.

Connie

Monday, September 3, 2007

The kids have been in school a week now and so far so good.

Jared seems to really like school and his teacher, Mrs. Hartman. Of course his best part is they get 2 recesses. What can I say he is a normal little 6 year old. This summer he was dreading school starting so I am glad he is liking it.

Kirsten likes school too and is eager to learn new things. We had to send her teacher our goals for the school year. I knew mine right off the bat................follow class rules by not talking at in appropriate times and that she will take her time on her school work so it is legible. Not to hard for her to accomplish, I guess. The talking thing really was an issue last year so we are hoping it improves this year. It was not that she was rude just "chatty" ALL THE TIME!!!

The only thing they do not like is they have an hour bus ride home after school. We live about 5 minutes from the school and the long bus ride is making Jared sick in his stomach. So we are going to check on a bus with a shorter ride or else just pick the kids up after school. Either way will work.

Mike is now laid off till whenever......................he is thinking that there may be a few men retiring in January and so he may get called back to work then but we shall have to wait and see. For now he is looking for some part time work that fits into our family schedule. He was the last person to get laid off on day shift so if a position opens up for any reason he will be the first one called back. Not going to stress over it but instead I am going to enjoy him taking over the home duties for a while. Good bye dishes, laundry and grocery shopping...........

Last night we took the kids to see the fireworks at the high school and they were awesome. Jared clapped and yelled out the whole time how amazing they were. It was funny.

Well hope everyone has a safe return to school. I know us parents will be partying in the streets that school is back in (just kidding).

Tuesday, August 21, 2007

This past weekend on the spur of the moment we decided to pack up and head to the beach. We left for Ocean City Maryland on Friday morning and came home Sunday night. It was a great weekend. The waves were wonderful and scary all at the same time. Our kids sure did learn quick how to ride and duck under waves. The undertow was tough. There were times that the waves and current were so strong that you actually had to just stay put and wait for a wave to come before you could get into the beach. A little scary for me worrying about the little ones but they did fantastic.

I had some great pictures. Here is one of a wave that would have been even greater if you could see Mike and Jared in it. However, the wave crashed down on them before my camera could take the picture.

We dug a deep hole in the sand (about 2 1/2 to 3 feet deep) before the life guard spotted us and made us stop and told us that holes were only permitted to be knee deep. Well my theory is it depends whose knees you are talking about ...ha ha ha.

We did the old tyme photos all dressed up like pirates. It was a hoot.

One week yet till school starts. Kirsten is getting excited and Jared well he says he is not looking forward to going. I am hoping that changes when it is time to start.

I have been trying to get him to do kid writing but he just absolutely refuses. First he told me he did not know how to do it. I informed him he did know how because he did it during his summer classes with Ms. Kuhn. He then told me "well I HAD to do that then". To which my response was" Well you have to do it now too". And of course he said, "No I do not" and didn't. I have tried making it fun and playing games with it and he just plain and simple will not do it. I sure hope the school is able to get through to him because I can not.

I am going to think positive thoughts...............

Friday, August 10, 2007

Wow I can hardly believe the summer is over in 2 weeks then back to school for the kids. Kirsten and Jared are both excited to be going back to school. Kirsten has Mr. Flohr for third grade. From what I hear he is fantastic and the kids all love him. We have seen him this summer because he works at the community pool and he seems nice enough. She even received a hello letter from him and welcoming her to his class this year. I think this will be a great year for her.

Jared has Mrs. Hartman for first grade. I do not know her but hear she is nice. I personally am very anxious to talk to her and get his support classes underway first thing this year. We go to Hershey for the testing in September and I am anxious to see what comes of that. He really does worry me. But don't you worry I will stay on top of it and get him everything he needs to succeed. That is a promise.

I wish he would be willing to work to Mike and I but sadly he becomes so frustrated and angry and gives up way to easily. I know he does better with others vs. us so I hope it works. I am just not sure what to do to help him because when we work with him he gets mad and will not participate. I know when he did his 2 week summer class at school this year his teacher said too that when he doesn't know something he just joked and acted like a "goof". He is going to be a tough one that is for sure. But I know somehow, someway we can get through to him.

We did not sign him up for football this fall because we want him to be able to focus on his school work and not have practice 3 nights a week and a game another day. He has been OK with this decision so far. I know some of his friends are playing but we thought it best if he does not this year. We were talking about maybe doing boy scouts with him. Because that is not as much time as football practice/games. We shall see. I think he would love boy scouts but we shall see because so far it does not seem to interest him.

We have been busy just hanging out, playing with friends, working and having fun. Time seems to fly by so quickly. We do alot of swimming, hiking, bike riding and just hanging out.

Today we took the kids to the State Capital and walked around the rotunda which impressed them and then went to the William Penn State Museum (nice air conditioned things on a smoldering hot day).

Tonight Kirsten is at a birthday party sleep over and Jared and I went school shopping for him. He was fantastic. It was nice just the two of us shopping then out for a nice fancy dinner (Burger King of course, his choice).

Mike will find out in a week what his future holds (working or being laid off). He is already for the next week (not by choice). Well the way I look at it is that he is here to watch the kids while I sleep during the day that I can get more than 4 1/2 hours of straight sleep a day and I do not have to rush like a fool to get out of work on time so he can make it to work on time. So I guess I will just enjoy his time off. Oh and yes he will be taking over all the house duties like clean up, dishes, laundry, and my least favorite thing......grocery shopping. So I will actually kick back and enjoy the spare time.

Kirsten has already started cheer leading and loves it just like she did last year.

Continue to keep Brandon Loose in your prayers.

Connie

Friday, August 10, 2007

Tuesday, July 24, 2007

The picture above is a picture of Kirsten, Jared, my grandparents and I which was taken a few years ago.

On Wednesday July 18, 2007 my grandmother slipped away to heaven to join her son who went many years before her. They are now reunited again.

Yesterday we attended my grandmother's funeral in West Virginia. It was definitely a collection of people. 12 of her 13 living children were able to attend and many grandchildren and great grandchildren. There are 35 grandchildren, 39 great grandchildren and 1 great great grandchild. That is a huge family.

She will be sadly missed by many but now she is no longer in pain. She battled breast and bladder cancer in her life and now she longer has to fight. May she watch over us all and bless us.

We mourn her loss.....................

Connie

Monday, July 16, 2007

Yesterday (July 15) marked the day that Jared was diagnosed with NB. We are 4 years out from that point and I must say that NB gets further from your mind but there are still daily reminders and thoughts of the days behind and what is to come........................

Then I think about Michaela Mease who battled NB and gained her angel wings 3 years ago on July 15, 2004. Please keep Kim, Dave, Nicholas, and Daniel in your prayers because I know everyday is hard but this time of year is especially hard. There is a direct link at the bottom of page where you can visit Michaela's caringbridge page. Please do and send the Mease family a loving caring message. (I know I love them all like family).

Yes as we mark Jared's 4 year mark I feel blessed that he is here, healthy and shows no evidence of disease. We are truly one of the lucky ones right now. Unfortunately this is not always/often the case with this rotten NB.

Please just continue to keep all the families fighting, winning and those who have angels in your prayers today and everyday.

Connie

Thursday, July 12, 2007 7:54 PM CDT

Well I am up and back on line again. My computer was down for over a week and now I am up and running again. We have been keeping very busy lately.

First off I never did end up making it to Chicago this year for the NB conference. Life became to complicated with my grandmother not doing well and Jamie's son Brandon getting his stem cells back from MIBG treatment that we decided that it best that we pass this year. It just wasn't meant to be. And let's face it there will be other conferences to attend in the future. I wish I could say that NB would be cured and there would be no further need for a conference but reality is that is not the case. So sometime in the future we will go and get to meet all the families that we interact with on the list. Lets face it, going to the conference for me was more about socialization then information. I would love to attend the side effects conference but meeting everyone was my main goal. But I will do it another year because this year other things ended up taking priority (family).

Speaking of family my grandmother sure has been doing well. She is still on Hospice and the last time I saw her she looked better than the time before. She is a fighter and not one to give up easy. Go grandma!!!

We have been busy with the kids doing the usual summer stuff. Swimming everyday, riding bike, taking walks and just hanging out. We took the kids to Hershey Park the other week and they had a blast. We all kinda got a little sick on the "sidewinder" roller coaster. We can handle upside down, flips and turns but doing all of it forward then backwards is not a good thing. That backward thing messes with you. Our kids love roller coasters as much as we do. Yippee!!!
The kids loved the new boardwalk or water area. It was fun but the water did feel like ice water, no kidding. Froze but had fun in that part.

The kids had vacation bible school the other week too. Had fun and met lots of new kids. The closing program was cute. I love to sit there and watch/listen to them sing to us.........priceless.

Mike has had off work now since the end of June. He is to go back to work this coming Monday. He should find out for sure in the next week or two but he is thinking he is looking at lay off for a few months or getting "booted" to 3p-11p shift in about 2 weeks. I am not sure which is worse....not working or working evenings. We are so family oriented and doing active things with the kids and each other that working evenings will be a big shock to our system. I work at night so I will have to sleep during the day and by the time I get up Mike will be leaving for work. And I can not stay up and sleep in the evening because Mike will not be here so I have to sleep during the day to be with the kids in the evening. Then when school starts Mike will only see the kids off to school in the morning then not see them till the weekend. Plus we would then need a baby sitter from 9:30pm when I go to work till 11:15pm when Mike gets home. Let's face it there are not alot of people jumping to take that job (time frame) on. This is not the worst thing that could happen but we are just so use to being together and always doing family activities together so it will be different for us. If Mike gets laid off he will get paid till unemployment runs out then have to find another job if he is not called back to work but he will be home, we don't need a baby sitter and the kids get to enjoy both of us. So I am not fretting about it yet but am a little worried to see how life will change depending on which scenario plays out...........

This weekend we are heading to State College for the arts fest. We are meeting our dance a THON buddies there. We have not seen them since March so we look forward to seeing them. We should have a blast. The kids and us are really looking forward to it.

Jared has school the next two weeks in the morning to keep up with his letters and numbers so he can stay on top of it for the upcoming school year. I have a date now for Jared's testing at Hershey. It will be at the end of September. It is testing to check out learning concerns and to see if they can get a plan in place to provide him with the information in a manner that is best for his learning style. I am anxious to get this done.

The kids are having a great summer and so are we. It has been active and full of friends and fun. What more could we ask for? Not a thing, just fun fun fun.

Have a great summer what is left of it anyways.

Connie

Sunday, June 17, 2007

HAPPY 6TH BIRTHDAY JARED

Jared had a great time at his birthday party. There were about 11 kids here.

I think they all had fun between swimming, swinging, jumping on the trampoline, climbing in the tree fort, playing on the slip and slide, having water gun battles and busting the pinata. It was a fun and busy day for all.

Mike and Pat were able to finish Jared's tree fort prior to his birthday. The kids love it. It is like a big deck up in the tree with a long ladder to get to it. I am not really sure who likes it better the kids or Mike :-)

Jared loved all of his gifts. This weekend we promised him to set his tent up in the back yard and if the weather cooperates with us we will have a sleep out. He can not wait to get it up and do that. I haven't slept out in a tent in quite a while myself.

This Saturday night we slept out in the tent and built a big fire in a fire pit that Mike dug . The kids had a blast "stoking" the fire and keeping it going. Mike liked it because he got rid of all our tree trimmings on the brush pile. The kids said next time we need to have marshmallows to roast.

Well let me tell you sleeping out in a tent when you are near 40 is not the same as it was when you were younger. Boy the ground sure is HARD!!! Next time I will have to have an air mattress. Or else I will be in no big hurry to do it again. The kids loved it. Both dogs slept out with us too.

Summer is off to a great start. Kirsten had cheer leading camp this week and had a blast with all of her friends. Summer playground is going well too. The kids have been going there and playing with their friends till 1 then off to the pool. This week has been great. I thank my mother-in-law for helping with the kids in the morning so I can get a few hours of sleep till it is time to pick the kids up.

I tell you what with summer playground 4 hours and then swimming all afternoon these kids have been so tired in the evening that they have been little angels. Even in the morning they are so easy to get up because they are excited to go to summer playground. Hope this continues all summer long.

Thursday was Kirsten's parent game and end of year celebration for softball. We had alot of fun. The girls ended up winning. The actually told us parents that we sucked. We sure did have a great time. The parents looked like clowns out there dropping ball after ball. Funny though that is for sure. We had a pizza party, game and cake after wards.

Saturday we took the kids to Harrisburg to City Island and went for a ride on the Pride of the Susquehanna. The kids enjoyed the boat ride and we did too. Then of course while we were there we walked over to second street and went to KoKoMo's for lunch. Had to have their famous wings. Mmm mmm good!!!! Plus the exercise was good for us.

In less than 2 weeks I leave for Chicago for the NB conference. I am excited about going. I am driving there with Kim Mease and Jamie Eager. I think us three girls will have a blast there. I have nick named us the three stooges. I think we three will have a great time and meet so many people from the NB list serve. It should be a blast with lots of fun. It is about 600 miles one way. So we are leaving on Wednesday (6/27) and returning on Sunday (7/1).

On another note, my grandmother is not doing well now. They have estimated her to have about 2 weeks or less left. She came home from the hospital this weekend with Hospice care. I went to see her today. I have not always been to see her as much as I would have liked to but none the less, love her just the same. Keep her in your prayers that she will be pain free and comfortable.

I would lastly like to wish my dad, Mike and all the dads out there a very Happy Father's Day.

Connie

Friday, June 8, 2007

Today is a very special day. Jared turns 6
years old. Every year makes us realize how
lucky we are and how special Jared (and Kirsten)
are to us.

Almost 4 years ago we did not know what the
future would hold for us, well.................
Here we are in 2006 celebrating another birthday
and feeling blessed to continue NED status.

Tomorrow is Jared's birthday party. He can not
wait till tomorrow.

Mike and his friend Pat are working hard on getting
the tree fort done by tomorrow. Way to go guys.
Jared and Kirsten are both excited to climb up
in the fort and play.

Yesterday was the last day of school. Summer
vacation has officially started today. Let
the fun begin now..............

Last night Kirsten and I went to my nephew's
graduation. Way to go Dustin!!!!

Yesterday Jared was running a temp of 101.5
when he came home from school. He has had a
nagging sinus cold starting the last few days.
he was not to sick to go shopping for his
pinata' though. That was a must for him.

Well I will be busy this weekend with a birthday
celebration and a family reunion on Sunday.

Have a great weekend everyone.

Connie

Sunday, June 3, 2007

We are now entering into the last week of school. How exciting for
the kids. I am kinda' ready for school to be out for the summer but
also kinda worried that all will go well.

With me working night shift I hope I can hang with them. I found a
baby sitter for the morning so I can come home and sleep till 1pm.
So I hope this works out we will see.

So the kids will have summer playground at the park from 9-1pm
then my plan is to go to the community pool with them from
1-4 then home to do whatever. I sure hope it works to keep them
entertained and happy.

Jared's birthday is Friday this week. He is going to be a big 6 years
old this year. He is having a birthday party here at the house on
Saturday with friends and family. He is so excited.

For his birthday he is getting a tree house built in the big tree in
our yard. It will not be done before his birthday but hopefully
Mike and Pat can get it done before to long.

On Friday we went to Kirsten's field day at school for a little while.
It was so hot out that day but the kids had fun running around
and playing games.

Friday Jared had his end of year party at school and the kids did
crafts and sang some songs for the parents. It was cute. They
also received their graduation certificates from their teacher
too. So it looks like next year that Jared will be moving onto 1st
grade.

My how they grow up so fast.

This will be a busy week. Kirsten has 2 more weeks of softball
to go. She has 2 games this week and one next week. It
is amazing to watch those girls play. They are wonderful now.
The difference between now and the beginning of the season
is phenomenal to see. They have a lot of fun......sometimes
to much fun!

Well wish Jared a happy birthday if you get a chance. I know
he would like that.

God bless and keep all the NB warriors in your prayers.

Connie

Wednesday, May 23, 2007

Things are going well here. Life continues to be busy. I am ready to
to go back on vacation. I like that leisurely life. But guess that is not
possible, time to get back to the real working world.

The kids only have about 2 1/2 weeks left in school. Then summer
officially begins for them. Wow how time does fly. I am still
trying to figure out our summer routine. I am definitely signing the
kids up for summer playground with the parks and recreation
system. The kids have friends who are also going so they should
have fun. It does not start till July sometime but is 4 days a week
from 9a - 1p.

Kirsten is going to be doing cheer leading camp the week after
school is out. She loves cheer leading and can not wait for
it to start back up again. That is definitely her niche in life.

Kirsten would love to go to a 1 week camp at Camp Thompson
but I have not decided if we are sending her or not yet. I am sure
the experience would be great but not sure if she is really
ready for a whole week away from home by herself. Jared
is to young yet this year to go overnight. Maybe next year.

T-ball is almost over. We have one more game tonight and then
a game next week which is kids against parents. Which should
be interesting!! Softball goes on for almost another 3 weeks
for Kirsten. They sure have been keeping us busy with all the
games and things.

Mike went back to work last week after a 3 month lay off. Glad
he is back working but boy do I miss him staying at home. He
had me spoiled. He took care of alot of things. I sure do miss
coming home from work in the morning and going to bed by
7 am. Now I have to stay up till the kids leave for school at 8:30.
Most of the time this is easy but boy when I am tired it can be
grueling watching the clock move so slow till the bus comes.

The weather sure has changed. Now almost everyday is in the
80's. It is so nice. I have been trying to motivate myself to
get on my bike and start riding but I have been kinda "sluggly".
Hopefully soon I get the ambition to start.

The kids are all ready to go swimming. The pool is open but
boy it is chilly. Last week they went swimming and the water
temp was in the 60's. You know kids though water is water
no matter what the temperature of it is. Me, well lets just say
I jumped in, had a shock to the system and jumped right out.
I think I will wait till the water gets a little warmer.

Well hope everyone has a great Memorial Day.

Connie

Sunday, May 13, 2007

I want to wish everyone a Happy Mother's Day.
Especially to my mom. My mom is the best. I do not know
what we would do without her. She is always there when we need
her and I am greatful to her for all she does and is.
Thank you mom and have a great day. Love ya.

Saturday, May 12, 2007

We are back from the Dominican Republic. We
had a lot of fun. The kids held up pretty well too.
The heat was overwhelming to the them the first
few days. By lunch time they were ready to go back
to the room and watch good ole' Cartoon Network. They
needed the break. I love the sun and can lay on the beach
all day but I must say that the afternoon naps were
terrific too. And the kids were the perfect excuse
to do it. Thanks guys!!!

The weather was fantastic. It was hot and sunny the entire
week except for one day. when it rained all day.
But that did not spoil our fun. The kids spent the day
at the pool swimming in the rain and we swam, sat under
the umbrella and enjoyed some drinks. So even rain in
the Caribbean can be fun.

One day we took the kids snorkeling and swimming with
sting rays and nurse sharks. When they first saw the
sharks swimming directly below us they both freaked out but
then calmed down with us reassuring them they were
nice fish and did not have any teeth. And a bite from them
would be like a sloppy kiss. They were OK after that.

The waves were terrific. The kids had a blast riding them.
We had boogie boards and blow up rafts we brought along
with us. The water was warm and oh so blue. I love the
Caribbean blue water and white sand. It is beautiful
like nothing else I have ever seen in my life.

I am glad we were able to go and enjoy this time.

I know Jared is NED (no evidence of disease) but I tell
you I still have a strong feeling to do everything and
experience everything but life can change in the blink
of an eye and I never ever want to have any regrets
about what I have done or not done.

I want my kids to have it all and see it all and if it is
up to me they will !!!!

I hope everyone has a nice Mother's Day tomorrow. We are
planning a lunch at my sister in laws and seeing Spider
Man 3 at the IMAX theater. Sounds like fun to me.
I feel like the luckiest mom to have my two little monsters
here to enjoy.

Thanks for stopping by. Leave a message so we know
you were here.

Hugs to all,

Connie

Thursday, May 3, 2006

We are leaving for Baltimore now and then off to the
Caribbean tomorrow. Update next Friday on our return.

Hugs to all!!!!!

Wednesday, May 2, 2007

As you can see, ball season is well under way here.
The above picture is Jared in his uniform for his first
tee-ball game. Oh the game was funny to watch.
Jared only had one practice prior to his first game
due to bad weather and being sick. Those little
ones were funny.

Jared was the last to bat for his team and so after he
batted all the players including him ran around the bases
to home plate. He told us, " I brought all of them home"
It was cute. I am sure he heard this from the coaches.
The main thing is he is having fun doing it.

Jared on the far right waiting in the outfield for a ball.

Kirsten has a softball scrimmage last weekend and they
did a fabulous job. Today is her first official game. I am
sure they will do fine.

Kirsten and Jared have games on the exact same nights
at different fields. That sucks. So Mike and I will be alternating
each time. One to ones game and one to the others.
Tonight I go to softball and Mike gets tee-ball.

In 48 hours we will be in the Dominican Republic. I am so
excited to go now. I hope the kids love it and have a fantastic
time. I have almost all our things packed. We are planning
on taking the camcorder to tape the kids to remember forever
and ever.......

Mike and I are excited to be going to the NB conference this
year in Chicago. I can not wait to go and meet all the NB
families I have been conversing with over the Internet the past
few years. I am so excited to go. That is the end of June and
should be a great experience.

Well have a great week and update after we get back from
vacation.

Connie

Thursday, April 26, 2007

Jared has not been feeling well. He has been off
school since Monday. He has been running a high
temp of 102 - 103.4 He was at the docs to rule out
strep and it was negative. They say it is just a viral
infection and it will have to run its' course. He
also has a rash on his body. The rash started
Monday night and then got worse and now is still
there but is more wide spread. He is sick of taking
Motrin and Tylenol round the clock but doing it
anyways.

I think he has lived on the couch the last few days.
He just lays there and watches movies. Nice and
relaxing when you don't feel well.

I am hoping he starts feeling better soon. We leave
for vacation in 1 week so I am sure he will be
better by then, we shall see.

Connie

Monday, April 23, 2007

Well the nor-eastern that was coming our way only brought
us rain and no snow. Now we are done with that and moving
on to nicer weather.

Saturday the temp was around 80 and it is only suppose to
get nicer/warmer. Sounds great to us. Saturday we actually
layed out in our swimming suits and even went for a convertible
ride. Oh how I love summer. In the morning we took the kids
for a walk down by the lake to feed the ducks and back to the
old dam, which is now about gone.

Sunday we took the kids hiking at Flat Rock. It was fun but hard
work. We did get very hot though. Should've went in the morning
but got a late start around 12 noon. That's what we get for being
lazy bones in the morning.

I love living in Boiling Springs. It is a great place to walk around
and the lake is so beautiful. This summer we plan on getting a
pass to the pool too. Yes, we have a pool at our house but we
are still going to go the pool because the kids will love seeing
their friends there and swimming with them. Plus there is a big
water slide for them and us (hee hee) to use.

So as you can tell we have summer fever now.

Softball and tee ball are going well for the kids. They both really
like it. They only have 2 more practices then games start. It
will be fun to watch them play.

Last week we took the kids to see the movie Meet the Robinsons.
If you never saw it I would recommend it. We liked it. Well
actually we did not take the kids. Kirsten was suppose to go with
us but at the last minute went to a friends house instead. Guess
doing things with us rates number 2 next to being with friends.
So Mike and I took Jared. We had a great time and so did Kirsten
with Kylee.

All Kirsten ever wants to do is have play dates ie. have someone over
or go somewhere. There is not usually a weekend that goes by that
she does not go to a friends or have a friend over. One nice thing is
she has a nice variety of friends. And I like all of her friends.

Jared is starting to have play dates too. But he thinks every time
Kirsten has one he has to also. This can cause contention and
a temper tantrum in him. We are slowly but surely working through
it.

Well I hope everyone has a nice week. I know we will just keep
bringing on the bright warm sunshiny days.............

Aunt Linda, thanks for taking the kids Friday evening and going to
the park and doing all that fun stuff. They both really enjoyed
themselves.

Connie

Saturday, April 14, 2007

Last night my mom and I and the kids went to see
Disney on Ice. It was a great show. I say that because
I have seen one that was not my favorite. The kids loved
it. Jared kept yelling out and clapping like a maniac. He
really did enjoy himself. It was funny. Kirsten just sat there
like a good little girl and smiled while watching it.

But then I think Kirsten was tired. She was sick all week and
running a high temperature since Monday. Yesterday was
her first day to school so I think she was kinda worn out. She
is not really running a temp now but still not eating right or
feeling 100et. Hopefully she feels herself soon. She has
been a little sweetheart lately.

We are expecting a Northeastern storm tomorrow that will
bring us rain, snow and a mix. I am hoping it does not
amount to too much. But it sounds like it could. Well if it
is going to snow Mike said he hopes it snows enough to
get one more time of sledding in. I am sure the kids will love
that.

All this talk about snow makes me anxious to go on vacation
now. We will be able to go too because we received the kids
passports already. We leave in about 3 weeks. I am excited
to take the kids to the Dominican Republic. All they talk about
is seeing and swimming in the blue water of the Caribbean. I am
so excited to see there response. I hope they have a great time
with minimal temper tantrums (that is for Jared ha ha).

I have some sad news to share too. Kendall our friend from NY
who has been fighting NB since his relapse about 1 year ago has
become an angel this past week. It seems like it all happened so
so fast. Please keep his parents (Aimee and Neil) and twin
brother Zachery in your prayers for strength and courage to make
it through the coming days.

Kendall was a sweet heart. We first met them at Dutch wonderland
about 2 summers ago. Then we have since seen them at CHOP. Last
September we saw them when we were there and Jared and him had
fun playing with each other that evening at the Ronald McDonald
house. Kendall had a beautiful smile and those dark eyes that
would melt anyone's heart. At least now he is pain free but his parents
will need the support in the coming days. Please stop by and leave
them a message in his guestbook. There is a link below to Kendall's page.

It breaks my heart to see another warrior gain his wings. Keep
all the families fighting NB in your continued prayers. And you can
help stop this disease but going to Lunch for life and making a
donation to help fund research to find a cure and help save
children's lives. There is a link above that will take you
to the Lunch for life web site.

Thank you for caring and stopping by. Please leave a message
so we know you were here to see how we were doing.

Connie

Saturday, April 7, 2007

Happy Easter to everyone.

Last week we had conferences with the kids teachers
at school. We did not hear anything we did not
already know.

Kirsten is doing well in school. Her only downfall
is her "talking". Kirsten loves to talk, talk,
talk......... "Will talk to anyone, anywhere at
anytime". I am thinking yes that is my Kirsten
girl. She is a little social butterfly. Always
has been and always will be.

Jared has come a long way since the beginning of
the year but still has some issues. We are not
sure if his issues are because he is a young
student (turned 5 in June and started school
in August) or something else. He has been
getting reading support with letters and sounds
since the beginning of the year and he has come
a long way. (GREAT JOB JARED!!!) He still has
issues with number recognition. We have been
working with his numbers so we shall see. Instead
of waiting till the beginning of the school year
next year and then seeing how things go we are
actually pursuing an evaluation this summer at
Hershey Med. Center. Hopefully this will tell
us what is going on and give us a baseline for
him. If there is any concerns identified they
will also give us and the school measures to
put in place to best meet Jared's needs.

Jared seems to do OK at times but the next time
it is like starting all over from the beginning.
It is almost like a memory issue that he can do
it with work but has difficulty retaining
the information. So I just want to make sure we are
providing him with the best teaching method that
best suits his needs.

On Wednesday I went into the school for Jared's
Easter party. The kids had fun. They decorated
bunny picture frames, made bunny hats and had
an egg hunt. It was great.

We decorated our eggs today for Easter. The kids
had fun doing it but lets just say that their
fingers and hands will be multicolored for a
long time to come................but it was fun
so what the heck. I think they only dropped
about 3-4 eggs during the process and cracked
them. When those eggs get wet with paint they
sure are slippery.

Well I hope everyone has a nice Easter and God
bless.

Connie

Saturday, March 31, 2007

The weather has been nice lately and we are enjoying it.

We have been getting the kids out for bike rides both on
their bikes and on the alley cats that connect to our bikes.
The other day actually rode 8 miles on the alley cats with
us and wanted more...........amazing.

Kirsten started softball practice today so once Jared starts
tee ball I am sure we will be quite busy in the evenings.
One nice thing about Kirsten's practice is it is in the park
right next to our house most of the time. Which will be nice.

Lat night we went to Mike's brother's house for a campfire
cookout. The kids enjoyed cooking their own hot dogs over
the fire pit and then roasting marshmallows. It was a lot of
fun for them. Then they played some sort of hide and seek
game in the woods after dark with the big kids which was a
great success.

Today we had our annual egg hunt at my mom's house. You
can see from the picture on top all the eggs these kids get.
We must put 100's out. Here is a pic of the kids getting ready
to start the hunt.

<

Easter is just around the corner. One week to go till then. I
Hope everyone has a nice Easter.

Please keep Brandon Loose in your prayers as they head off
to CHOP this week to do MIBG therapy. The treatment he was
getting is not working like they had hoped it would so they are
trying something new. Stop by his web page ( link below) and
send his family some prayers.

Also please keep Penelope London in your prayers who is not
doing well at this time. Her parents are praying for pain free days
and comfort.
http://www.caringbridge.org/ny/penelope/

Kendall Jackson is also looking for a new treatment
options to stop the NB and control his pain.
http://www.caringbridge.org/ny/kendall/

Pray for all the children and families fighting NB.

Connie

Sunday, March 25, 2007

Long time no update. We have been busy.

Last weekend we received 6-7 inches of snow. It was the perfect snow for sledding. Kirsten had a friend come over on Friday to sleep over and we took all 3 kids sledding.

It was fun for all of us. I think the girls did not like pulling their sleds up the hill but they made it. Jared loves to sled. This should be our last snow for the winter now. Dad and Jared had fun building a snow fort.

This week the temp was up in the 60's. All the snow has melted and I wish I could say it has been nice but it was a rainy week. We were able to squeeze some fun in though. Jared and I went bike riding one day and the kids are practicing for ball season to start too.

Jared is playing tee ball and Kirsten is playing softball. This is the first year for both of them. We bought a tee and the kids are having fun just hitting the ball and pretending to run the bases and make a home run.

The kids are excited for vacation now. We promised them a trip to the Caribbean. So now we have things all set. We are going to the Dominican Republic the beginning of May. They are excited to fly in a plane and go see the "blue water" of the Caribbean. I am so excited to go and take them with us. Mike and I love to go but the kids have never been there so it should be a blast with them. Assuming we get the passports back in time for the kids. We have applied and expedited them so we should have them in time. So about 5 weeks then we are off.

Well have a good week and I think Spring is really right around the corner so we can get outside and have fun doing active things. I can not wait.

Connie

Thursday, March 15, 2007

Well so far we know the CT was normal on Tuesday. That is
good news. We just received an e-mail from Dr. Grupp this
morning saying with the MIBG scan that everything is just
fine. Hallelujah!!!!!

We had a great time at CHOP. We got to see Jamie and Brandon.
And I must say that Brandon was a little social guy. He was funny.
He brought dominoes and they did have a great time trying to set up
the ultimate maze to knock down. Brandon you look terrific. In all
the times I have met him this time he was a "talker". HE told us all
about how he skipped kindergarten because he was to smart for it.
IT was great seeing you guys. Jamie you have a very special young
man there, that is for sure.

Two of our past THON dancers (Liz and Jess) and Liz's mom came
to visit us at the Ronald McDonald house last night. The kids had a
blast playing with them. Jared is always in rare form around them and
Kirsten loved hanging on Jess's leg and making her drag her around.
Boy what a work out for her. I suggested she have her switch legs so
her workout was equal on both sides. ha ha !!!

We are glad they were able to come and see us. It was a fantastic
surprise. Liz is from Philadelphia and since they were on Spring
break it worked out well for them to stop by and we loved the visit.
We hope to see them again real soon.

The kids and Mike with our THON friends when they came to visit us at the Ronald McDonald house in Philadelphia (Liz, Jess and Liz's mom!!!!!

Yesterday after the MIBG scan we took the kids to the zoo. It
was the perfect day for the zoo. It was warm and sunny. We loved
it. I hope the nice weather continues forever.

Well have a great week everyone and thank you all for your positive
thoughts and prayers. Don't know what I would do without you all.

Connie

Sunday, March 11, 2007 4:07 PM CDT

Well tomorrow after school lets out we will be heading
to Ronald McDonald house in Philadelphia and on Tuesday
morning heading over to CHOP to get our scans done.

Tuesday
10 a.m. Hearing test
11:30 a.m. CT scan
12:30 MIBG injection
1 p.m. clinic appointment with Dr. Grupp

Wednesday
10:30 a.m. MIBG scan

Keep us in your prayers as we head for scans.

Today we took the kids up Pole Steeple for a hike.
It was a beautiful day. The sun was shining and
Spring is definitely on it's way now.

The trail up was muddy and snowy but boy when
we got to the top it was a beautiful view. Jared was
so daring bouncing from rock to rock. He actually
scared me. He just kept telling me "I am not a baby
mom, I am a big boy now" I said yes you are but
you still scare me.

The picture at the top of the page is from hiking today
and here is one of Mike and Jared that I took from a
rock beside the big rock they were on.

Well have a great week. I will be happy when scans are
over and we hear continued NED.

Connie

Thursday, March 1, 2007

Kirsten is doing better and is spending the night at a friend's house tomorrow night. Meanwhile, Jared is having a friend stay here. We are planning on taking the boys bowling or something fun............

Kirsten and Jared really enjoyed the messages in the guestbook from all our THON friends. They will be returning e-mails soon.

This week Kirsten received mail from a Penn State pen pal. Her name is Becky Andrews from the bright club committee. She had sent Kirsten a stationary set and tons of cards which Kirsten loved. Kirsten already wrote her two letters back that I need to put in the mail for her. She will love this relationship. I tell you these Penn State kids/adults are amazing and we love them all. Thank you to all of you and we will see you again soon.

We will be heading to CHOP on week of the 3/12 for follow up scans. We are arriving at the Ronald McDonald house on 3/12 and be at CHOP 3/13 and 3/14 for tests/appointments then home on the 14th. IF anyone is going to be there let me know and we can link up. I know Jamie and Brandon will be there and I can not wait to see you again. See you soon.

Well everyone have a great weekend with sunshine sunshine sunshine...............I hope.

Connie

The kids getting ready to leave for school. Jared
has his hair done up for "crazy hair" day.

Monday, February 26, 2007

Well here we are again with Winter
weather on top of us. Yesterday
received some snow and ice. The
kids have a two hour delay this
morning. THey love that.........

Last week Mike and I took Jared sledding.
What a blast. We had a lot of fun. I
ended up with bruises on my knees. Mike
flew off his sled about 10 feet in front
of it when the sled came to a dead stop
on the way down the hill. I thought I
remembered sledding to be fun..........
not dangerous!!! Guess the older we get
the more dangerous these fun times become.
Jared had one spill but no evidence to
show. Maybe we can get out again this week
because hopefully it will be the last snow
of the year. We shall see.

Kirsten is fighting a major ear infection.
Her ear hurt so bad this weekend that she
was crying. We started antibiotics
yesterday so hopefully it improves soon.

Well have a nice week and and wish for
warm sunny weather for us soon.

Connie

p.s. Happy Birthday Aunt Linda and Liz (our
one dancer from THON). They both had birthdays
on February 22nd.

Monday, February 19, 2007 12:22 AM CST

The weekend was great. We love going to the dance a thon
at Penn State. Those kids are all phenomenal. What an
amazing thing they do. Staying up and on their feet for 48 hours to raise money for cancer families at Hershey Med Center. What an awesome task and they did it. They ended up raising $5,240,385.17 for the Four Diamond Fund. That is terrific. Way to go. As a four diamond family we would like to thank all the Penn State students who danced and all those who made THON happen!!! You are all number ONE in our book.

We would especially like to give a big huge thank you to Erin and Liz from L.I.F.E house. We love you guys and think the world of you. The kids love ya and had a great time with you and all the other students we met like Jason, Emily to name a few. Thank you all for taking the time to make Jared and Kirsten's weekend so special. Even when you were tired and your feet hurt you were never too tired to play with the kids like bounce balls, chase balls, blow bubbles, give piggy back rides to them, make head bands, make pipe cleaner glasses or just hug and play with. We thank you all from the bottom of our hearts.

We had the opportunity to go to breakfast with some very special people too. Our dancer from 2 years ago (Katie) and her great friends Holly, Sarah, and their boyfriends. We enjoyed seeing you all. You are also number one in our book. We love you guys.

Jared's wish at THON was to meet the football players. We got to do that and tour the Lasch football building at Penn State. Our tour guide was linebacker Sean Lee. On Sunday there was a big picture in the local State College paper of us with Sean Lee. Here it is.......... The kids loved this.

We went to THON before but never ended up staying for the end. Boy it was amazing and awesome. I never knew how many emotions it would bring out in me. Family hour was so emotional. Watching the video clips of kids who had conquered cancer and of kids who did not. I must say there were lots of tears shed both out of happiness and sadness. Happiness to see kids diagnosed with cancer and now are years out living happy normal lives. And the heartbreaking tale of the kids that were diagnosed and are no longer here on this earth. Made me look at Jared and feel so much love. Feel so lucky to have him. Tears poured from my eyes to know what a lucky mom I am to have my little angels here with me. Tears poured from my eyes for all the parents who no longer have their children with them. It just tour at my heart strings to watch the video clip that contained a dear friends daughter in it (Michaela) who is now up in heaven watching over us. Oh Kim I cried for you too. What a wonderful thing that Michaela could be at THON too in that video. It was amazing. I love you Kim.

It was so nice to see old friends like Jamie Eager (Brandon Loose's mom and family), Tammy and Tom Brady (Eric's parents and their family), Sylvia Pituch and her family, Mary Karoly and her family. Mary and I went to Nursing school together and use to work together at Carlisle Hospital. I found out a year ago her daughter had cancer and it was so nice to see them after all that time. You guys look amazing and your little girl is beautiful. I could go on and on................ It was just a wonderful weekend.

Our weekend ended last night with a little twist. We had a ride home from State College in a luxurious king cab flat bed truck. No that was not our original intent but that was the way it ended up. We left State College around 4:45 and about 20-30 minutes later as I am driving on 322 I heard a strange noise, my battery light came on, my engine started getting hot and my power steering was difficult. We pulled over and then rode the berm of the road to the next exit (Milroy) which was very close and called AAA. Originally they told us there were no garages open seeing how it was Sunday evening and that we would probably not be able to be towed home either tonight. So we anticipated getting a room for the night but when the tow truck called me he told me he could take us home. So home we came in our flat bed with my car on the back. We arrived home around 8:30 pm last night. I was so happy that we were able to be brought home by the nice gentleman who helped us. So what could have been a horrible situation ended up being a good one. The kids loved the ride in the flat bed and I got to sleep instead of drive. What more could I ask for?????????

Today my car is fixed and back in my possession. The main belt tore when a baring went out of the one pulley. Thank goodness it was an easy fix. We are lucky.

So that was our weekend. Busy but we had a blast and loved it even the flat bed truck ride.

This is a picture about 1 hour before THON ended. Balls were flying everywhere and excitement was in the air.

Connie

P.S. VISIT THE PHOTO ALBUM TO SEE TONS OF THON PICTURES.

Friday, February 16, 2007

Penn State here we come.

We are leaving for the dance marathon
at State College within the hour.

Can't wait to get there and have |
loads of fun.

Connie

>

This is the kids with thier favorite presnts of all.
They always ask for Island outfits. This year I
could not find them any at the resort but I
got lucky and at the airport in Jamaica I found
these 2 outfits and they LOVED them, as you can see

Saturday, February 10, 2007

So last night was the big slumber party. We ended
up with eighteen 7-8 year old girls. That is correct, I
said 18!!! We had a house full.

This is not everyone but almost.

It was noisy at times and noisier at others. But over
all it was a fun evening with lots of laughing, squealing
and chanting. Where did the chanting come from? I
do not know. One girl would say something and all the
girls would start yelling it in unison.

18 little girls sure can get loud that is for sure. But
I guess that is what being a girl is all about. I
remember those days well.

I think everyone had a great time. We played the Hannah
Montana CD over and over again. And each time the
girls ran around and danced like maniacs. We had also
bought a disco light that spun and threw colors all over
the room and a white light so anything white glowed in the
dark. It was cool.

Around 2 a.m. I told the girls it was time to go to bed.
About 3 girls had fallen asleep prior to this. I would say
most of the girls fell asleep by 2:30a.m. But 4 of them,
Kirsten included were up at least till 3:30 a.m. then I
think I fell a sleep. So I am not really sure what time
they conked out.

All the kids were up around 7 a.m. this morning and with
their parents by 9:15, house cleaned by 10:30 and I was
fast asleep by 11:30 not be heard from till 3:30 p.m.
today. Kirsten stayed up all day today!! How? I do
not know. But the kids went to bed at 8:30 p.m.
tonight, which they needed.
It was certainly an experience to have that many little
girls here. And it went well too. But I do think next
time I will stick to 5-6 girls just because they are
easier to manage.

I could not have done it without the help of Mike, my mom
and my cousin (Cynthia) who were here for the duration
along with me. Thank you all for your help. I greatly
appreciate it!!

The main thing is Kirsten had a great Birthday party and
that is all I wanted. With starting a new school this
year with us moving I wanted to have the best party ever
and I think she was thrilled with it. Goal met.

Jared was to spend the night at a friends house but he
ended up going over there and coming home at 9:30 p.m.
at his request which was OK. I think he worried he was
missing something. Oh well, that is OK.

As I said before next week we are off to State College for
THON. We are looking so forward to going. The kids are
so excited. It will be a blast. We leave Friday after
school and come home Sunday evening. Can't wait to see
you all like Liz, Erin, Katie, Sarah and Holly. Less
than one week to go!!!!!!!

Well have a great week everyone.

Connie

Wednesday, February 7, 2007

LIfe continues right along as busy as
ever..........

This Friday Kirsten is having a birhtday
slumber party. So far we have like 14
girls coming. WOW!!!! It should be
pretty wild. I hope I can handle 14 little
7 and 8 year old girls. Wish me luck.

Jared has been invited to spend the night
with a friend on Friday night, so he will
not be here to tease the girls. His only
concern is that someone will get in his
room but I think he has it all planned out
now. He is going to make a big sign to put
on his door stating "STAY OUT". That should
work. (funny)

Next weekend is the dance a THON at Penn State.
The kids are getting excited to go. Our
dancers are Liz and Erin from LIFE house. We
Love these girls and can not wait to see them
again. Should be a great weekend. We look
forward to this every year. IF anyone wants to
send mail to the dancers here are our dancers
names and numbers. It would be greatly
appreciated.

Mail Call information:

Liz Masi, Dancer 92B
c/o Mail Call
210 Hetzel Union Building
University Park, PA 16802

AND

Erin McDonnell, Dancer 92A
c/o Mail Call
210 Hetzel Union Building
University Park, PA 16802

IF you have time to send mail these awesome
girls would love it. They will stay up on
their feet all weekend to raise money for
the Four Diamond's Fund which benefits
families of children being treated at Hershey
Med. Center.

Thank you for your help. THe THON web site
is listed above and you can go there and also
make a donation to THON. If you do, you can
donate in honor of LIFE House or whichever
organization you choose.

Today we had about an inch of snow and the kids
had a 2 hour delay, which they enjoyed. OK so
the ground hog did not see his shadow so.....
Where is Spring???? Just kidding.

Jared shoveling snow.

Thank you.

Connie

Sunday, February 4, 2007

The weekend has been busy. Wanted to share some pictures
and events with everyone.

So we arrived home from Jamaica on Thursday night. It was a
great feeling to get home and see the kids. We got in about
11:30pm. Kirsten managed to stay awake but Jared was fast
a sleep. We did get the "best" hugs ever when we got home.
Kirsten was like an attachment to our bodies. I think we carried
her around a half hour or so after we got here. She would not
let go. Which was great. Once we were able to get Jared awake
he too was hugs and kisses. Oh what a great feeling.

We told the kids that the next time we go to the Caribbean they
are going with us. That will be fantastic.

I wanted to share some pics with everyone. We stayed at Couples
Negril. It was beautiful. The white beach, blue water and beautiful
water. Loved it all.

This is a pic of the view. I just love the blue water and blue sky
that you can not even tell where the water and sky separate.

This is the view from the beach at our resort.

This is a pic by the pool at the resort. Like I said, the place we
stayed at was great. I miss it already.

While we were there on the beach talking to another couple I
found out they had a nephew with NB. When I asked his name
I was shocked to find out it was James Runde. I immediately
recognized his name from the NB list. We then did our NB talk
and I was fascinated. I go all the way to Jamaica to meet
someone from NC who has a direct link to NB and the list serve.
It was amazing.

So we leave 85 degree temps to come home to this freezing
weather. On Friday we got a light snow that was enough to
cover the ground white. And let me tell you this weekend has
been COLD. The coldest we have seen thus far this winter.

Friday we just hung out with the kids and played and had a
great day. Oh except for Jared's little accident. They wanted
to go out and play in the snow and so we all got ready to go
out and the kids went out while I folded laundry then was
I was coming out to join them. All of a sudden I hear glass
breaking........not sure what it was. Thank goodness the kids
were OK. Here the kids were outside and they started
throwing bricks and dropping them on the patio to try to break
them and Jared accidentally threw it through the basement
window. He was so upset. So we did a quick fix to keep the
cold out for now. And instructed the kids no more brick
throwing. Hey an accident is an accident.

The kids received Toys R us gift cards in the mail so yesterday
they went to the store and spent almost of it. They were
fun to watch. It was literally 2 kids in a store happy as can be
to have their own money and buy whatever they wanted. We
came home with 2 huge bags.

The kids had a swim meet yesterday morning and they did
great. Kirsten really loves meets. She knows the concept of
winning and wants to. Jared just likes to swim. First place or
last place, does not matter to him. He just wants to swim.
Next year he wants to wrestle instead of swim, at least that is
what he says now.

Last night I took the kids to rec swim at the high school. They
had a blast swimming, diving and playing with their friends. When
it was time to get out of the pool to go Jared accidentally hit
himself in the mouth with a toy and knocked his one loose
tooth out. He was upset because it hurt and it was bleeding. He
also was upset because I could not find his tooth. It was lost in
the swimming pool, never to be found again.

I told him I was sure the tooth fairy would still visit him and she
did. He will find that out when he gets awake today. I am sure
he will be thrilled to know she did not forget him.

So that was our weekend. The next 2 weekends we have a full
schedule.

Mike also found out on Friday that he will be off work the next
2 months. That means he will be here 24/7.He is planning on
redoing the hardwood floors in the house which is great but may
be noisy and I may have to look at my sleeping schedule since
I work nights. But it will be great for him to be home and taking
care of things. I will just enjoy him doing the household duties
that I normally do. Welcome home Mike................

Well enough now. Have a great week everyone.

Connie

Friday, February 2, 2007

We are home from vacation and thrilled to be
back with the kids. The hugs we gave and
received were the BEST!!!

We had a great time. We are very tan or "orange"
as Kirsten calls us.

We are keeping the kids off school today so we
can enjoy them and have fun.

A million things to get done before all are
awake so update this weekend.

Connie

Monday, January 22, 2007

The picture on the home page is of the kids at the swim meet
on Saturday waiting to start. They love to swim. The past 2
Saturday nights we have gone to Rec swim at the high school
too and met some of their friends there. It is a blast. I am not
really sure who has more fun the kids or us. Mike was having
to much fun going off the diving board and doing flips.

Well as we get ready to leave for Jamaica in about 2 ½ days we
are now finally having winter weather here. It has been very
cold recently. Yesterday we had some snow flurries even. It
was not enough to play in or build a snow man but it turned the
ground white anyways. The temp has dipped down into the
20'sand 30's too. A bit nip. Makes me even more ready to go
to the Caribbean.

Here is Jared out climbing a tree. That boy just loves the out-
doors no matter what the temp is.

>

The kids are getting excited to stay with Grammy and Cortney
(my niece) is staying at our house to watch the 2 dogs. Not sure
who to worry about misbehaving (the dogs or the kids)? Just
kidding because I am sure they will all be fine.

Well update after our return. Sunny Jamaica here we come!!!

Connie

Monday, January 15, 2007

As the countdown for Mike and I's vacation begins
(10 days) so does the quest to make everyday special
and fun family time for the kids. I know they will be
fine while we are gone but I want to enjoy every moment
until then. Sometimes this is hard though...........

Jared is going through a rough phase right now as we
have termed it the "Dr. Jekyll and Mr. Hyde phase". One
minute he is the sweetest thing on earth and the next he
is mad at everyone and no matter what you do he yells
and accused everyone of being "mean", even when
everyone is being as nice as can be. He will throw his little
temper tantrum and eventually get it out of his system
(Sometimes only after a time out in his room). Not sure
what is going on with him. Probably just typical 5 year
old behavior where he is trying us to see what we will do
and what he can get away with.

So somehow we are going to get past this stage and get
our fun loving boy back, I HOPE!!! Just kidding. I know
we will get him back.

Anyways, I am planning some fun things for us to do the
next week in a half, like: go to the movies, game night,
swimming at the YMCA, playing or just doing whatever
the kids want to do. It is going to be all about them.

Yes, don't worry when we go away I will get my 500
minute phone card so we can talk everyday for as long
as we want. Last May when we went away we talked
to the kids one or two times a day at first then near the
end we were calling before school, after school and at
bedtime.

I know they will miss us but I also know they will enjoy
their week with Grammy K. We bought a bunk bed to
set up at Grammy's house so they will have their own bed
and bedroom now. They are really excited about that. The
kids have already decided who is sleeping on the top bunk
and for how many nights.

I hope it goes well and they do not fight like they usually
do. Which well, what do you expect from a brother and
sister so close in age. They sometimes play so nice and
other times..............well, not so nice. Typical brother/sister
stuff.

Well have a great week everyone.

Oh thank you Erin and Liz our THON friends for the
presents. The kids love them all. It is great. We can not
wait to see you in about 5 weeks. We are all getting
excited for thon. See ya then. You gals are great. Hugs
to you both.

Connie

Friday, January 5, 2007

Well the new year is under way and so far, so good.
The kids went back to school from Christmas break
this week and are glad to be back and see their
friends.

Mike has been off work since before Christmas and
does not return until January 11th. He has a nice long
break. Me, well I have been working all along and
will continue to do so until vacation later this month.

On January25th, Mike and I are leaving to go to
Jamaica. We will be gone 8 days and 7 nights. I am now
getting very anxious to go. We have never been there
before.

The kids will be remaining behind to attend school. My
mom will be watching them for the week. Thanks mom!!

Although later this year I am going to plan a trip to take
the kids back to Disney. They enjoyed our make a wish
trip so much back in December 2004 and want so badly
to go again. So that is the plan.

Mike being off work has really been spoiling me. After
work in the morning, instead of having to rush home so
Mike can leave for work I can go straight to the gym and
work out before coming home and going to bed. I
have been enjoying this.

Well hope everyone's new year is off to a good start.
Thank you all for signing the guest book when you
stop by.

Connie

Sunday, December 31, 2006

Today in 2003 marked the beginning of the hardest
part of Jared's treatment.

Today in 2003 I drove Jared and dad (Mike) to CHOP
to begin Jared's first of two stem cell transplants.
Boy how long ago that seems now but how easy it
is remember like it was yesterday.

So this year we spend New Years Eve together as a
family as we should. I hope the New Year continues
to bring us happy times and good health for all.

I am sure I will be thinking of this as we watch the
ball drop together this year and many more years to come.

May everyone have a great New Year filled with
family, friends, love and happiness.

Please say an extra special prayer tonight for all
the families in treatment who continue to fight. And all
those celebrating this Holiday without loved ones by
their side.

HAPPY NEW YEAR!!!!!

Connie

Wednesday, December 27, 2006

I hope everyone had a wonderful Christmas. I know we
did. The kids were so excited to see Christmas come. On
Christmas Eve I did not think they were ever going to go to
sleep due to all their excitement. They kept getting out
bed saying they were to excited to sleep. It was to funny.

We made Christmas cookies last week but by Christmas
Eve we ate them all so here I am at 9 p.m. At night running
to the convenience store to buy chocolate chip cookies for
Santa to eat. And yes, Santa loved them. We have to do the
milk and cookies for Santa. That gives him fuel to get through
his busy night.

We started our Christmas celebration with a party and sing a
long at Aunt Linda and Uncle Tom's house on Saturday night.
Here is a pic of all the kids (Nicholas, Kirsten, Uncle Tom and
Jared) at the player piano singing Christmas carols.

Sunday night we went to Aunt Tina's and Uncle Tony's house
for Christmas with the Strayer family.

Monday we celebrated with a my family at our house and then
in the evening we went to visit my dad and Jane.

We had a wonderful weekend spent with family. What more
could we want? Nothing more. Family and good health.

Here is a pic of the kids on Christmas morning.

I also want to thank our THON friends for the presents they
sent the kids. They loved the games and oh were those apples
ever delicious. Thank you again. Hope you received our gifts too.
We look forward to seeing you all at THON in February. It will
be here before we know it.

Here is a pic of the kids posing with some of the
presents you sent them. They loved them all.

Well have a happy New Year everyone. We are not sure what
we are doing yet. Either staying home or thinking about going
to some community event with the kids. We welcome another
year and hope it continues to bring us good health and good
times.

As I go I will ask that you stop by and visit my friend Kim
Mease's dtr's website (Michaela's site) below and leave the
family a message. Michaela has a birthday tomorrow and is
celebrating it in heaven. I am sure Kim we feel blessed to
know that Michaela is forever and always remembered.

I also want to once again thank everyone who donated to
Lunch for life. Jared has 3994 ornaments on his tree
and he could not have done it without all of you. Thank
you everyone and God bless you and yours.

Connie

Tuesday, December 19, 2006

Well, yesterday Kirsten ended up staying off school
and going to the doctors and they are thinking now it
it either an infection or asthma. She is now on
antibiotics and Albuteral. We shall see if this helps
that nasty cough she has.

Jared has the cough too but last night he was also
running a fever. Today when he woke up he did not
have a fever so that is a good thing.

Here are a few of the kids Christmas pictures we had
taken. They are so cute.

Christmas is getting even closer. Jared has a ring of
paper loops that he made at school and each day he
tears a loop off till Christmas. So everyday when he
gets up he tears his loop and then counts how many
days till Christmas. What a neat idea.

We still have to bake some Christmas cookies yet
this year. I think we will do it this weekend if we do
not get time this week.

Jared lost another tooth on Sunday. He is now missing
2 teeth in the front. One on the top and one on the bottom.
His smile is too cute.

Have a great week.

Connie

Sunday, December 17, 2006

First off I would like to say that this month is
a month for celebration. It was in December of 2003
that Jared was scanned prior to his first transplant
that he was considered NED (no evidence of disease).
We are thrilled and blessed to be able to say that three years
later,Jared is still NED!!! We couldn't ask for anything
more.

Christmas is right around the corner now. The kids are
getting so excited for it to be here. Last night we went
to see Santa and get their picture taken. It was not
the usual Santa. We go to the same place every year for
our picture with Santa. Santa is always an older
gentleman who had a natural white beard and was round
and jolly looking. This year it was a younger looking
guy with a fake beard. The kids noticed the change
right away. They proceeded to tell me that this guy was
not the real Santa. "Look at him mom he is not the real
one, he is fake". But then we started talking about how
Santa can not be everywhere at once so he has helpers.
(Yes, we have had this conversation previous years too).

When we got home the kids told dad they saw Santa
but it was one of his helpers and not the real one.
It was too cute. The kids were all dressed up last
night because we also had their Christmas pictures
taken. I will share them once I am able to download them
from the Sears site.

Yesterday the kids had a swim meet. Kirsten came in
second on the freestyle heat. Jared came in 4th. On
the back stroke heat Jared came in 3rd and Kirsten came
in 4th. We did not stay for the relay. Both kids were
coughing with colds and were ready to go and did not
want to sit there another 2 hours till they swam next
so we came home early. I do not blame them. I think from
now on we will ask the coach not to put them in the relay
at the end.

I actually think Kirsten may have pneumonia again
or still. She was on antibiotics for it and here it
is only about 2 weeks later and she again has
the same nasty cough and now Jared has it too. Think we
may be making a trip to the doctors today.

Well our ham sandwich sale is almost over. We ended
up selling 200 sandwiches. I want to thank Jane and
Laurie for helping to sell sandwiches at their work.
I also want to thank my mom, Cynthia, Aunt Joanne,
Kirsten and Jared for helping to make sandwiches up and
get them ready to deliver. As soon as I get the money
from everyone I will donate the proceeds to Lunch for life.

I would like to thank everyone who bought ham
sandwiches and all those who have donated to lunch
for life. If we know who you are the kids have been
making up thank you notes and mailing out. For those
who have donated that I do not know your address or who
you may be I want to personally thank you for your
donation. It means so much to know you care. God bless.

That being said I hope everyone has a terrific week.
(8 days till Christmas and counting).

Connie

Tuesday, December 12, 2006

The other day I took the kids for their flu shots.
Now ordinarily I do not tell them about things
like that a head of time. Well this time I flubbed
up and did.

When we first got to the doctors the kids were
actually (to my surprise) arguing over who was
going to go first. Well let me tell you after the
Nurse arrived with the needles in hand they were
both singing a different tune.

Jared ended up going first and he was quite unhappy
even before the shot took place. This set the stage for
Kirsten too. She too then was scared out of her
shoes before the nurse was even 3 feet from her.

We finally had that ordeal over with and now the kids
look back and laugh at themselves for getting so
worked up.

When we were at the doctors I had him look at Jared's
hair too. It is thinning on the top and their are actually
some small bald spots especially on the back/top. Not
sure what is causing this.

Had spoken to the oncologist and asked him if this could
be a late effect of treatment. The thinking is "no". So we
decided to check his thyroid which can be effected by
the radioactive isotope they give for the MIBG scan.

Well I found out yesterday the thyroid tests were normal.
Which is good but then why is it happening? Not sure
of that answer.

We talked about a skin infection but the pediatrician did
not feel that was the case because his scalp is clean and
no symptoms of a skin infection.

So the question now is do we do further testing or wait and
see what happens? Will his hair continue to get thinner or
will it grow back in? Not sure of the solution yet.

Sometimes hair loss can be from "nothing" so not sure what
to do next. Now do not get me wrong. He is not bald by any
means but it is definitely thinner on top and you can see more
scalp then you use to be able to see. Just strange.

Here is a pic of it.

Not a good one but you can tell how you
can see more of his scalp. So we shall see. Waiting to hear
back from the doc if their is anything else to check out.

Now let me tell you when we left the docs and went
to the hospital lab to get blood work, this time I was
smarter. Jared had no idea what was coming till we
were sitting in the lab and the tech brought the needle
out. Sure he was upset for a brief period but by the
time he was upset it was over with. Good lesson for
mom to not spoil the surprise next time.........

Well have a great week.

Connie

Monday, December 11, 2006

Well we are on our way to getting ready for Christmas.

This weekend we purchased our tree and put it up.
It was not easy to find either. We actually went to
two Christmas tree farms yesterday before we found the
“perfect” tree. It was funny.

The first farm we went to we walked all over it and
then I proclaimed to Mike, “you know what? I know
there are probably 1000 trees here and I honestly do
not see a single one I like.” So off to the second farm
we went. Thank goodness it did not take long at all
to find one there. Then we were homeward bound to
put our tree up and decorate it.

The kids love to decorate the tree. We loaded it full
of ornaments, lights and tinsel. It is beautiful.

Here is a pic of us with our tree

I still have some Christmas shopping to do. I have
about everyone done............except my kiddos. I
will work on them this week though.

They already saw santa once but want to see him
again at the Mall like we do every year and get
their picture taken so we will do that this coming
weekend.

The kids had the secret santa shop at school and so
they were able to shop for each other and Mike and
I They are thrilled to have their shopping done. They
already put our presents under the tree. I am surprised
that they have not told us what they bought us yet. They
are actually keeping it a secret. That is great.

So they are on the count down to Christmas now.
Everyday they ask how many more days till it is here.

Monday, December 4, 2006

Yesterday we went to the Four Diamond's Christmas
party and the kids had a blast. We had the opportunity
to once again link up and see Dr. Freiberg and Greg
our Social Worker from Hershey Med Center. I hope
they do not mind but here is a picture of the kids with
their two gentleman friends.

Jared always loved the way Dr. Freiberg would play
and carry on with him. And Greg always enjoyed
Jared's woopy cushion he would bring along to clinic.

Dr. Freiberg was always there to answer my
questions and God knows I had plenty. And he was
always there when we needed him. Along with
the rest of the medical staff at HMC. You are all great.

Greg was always there for us when we needed him
during the trials of treatment. He was very helpful
and we could not have made it if it were not for him
and the Four Diamonds Fund. For all you gentlemen
have done for us, we thank you and are forever grateful.
We appreciate all of the staff at Hershey Med Center.
Even though you are not visited often, you are fondly
remembered and not forgotten for all your assistance,
advice, patience and care. You are one terrific team!!!

I hope this Spring to do a fundraiser for the Four
Diamonds Fund. Because it is so very important,
needed and appreciated when a family is in need.
Again we thank you all for everything you have
done and continue to do. God bless you all.

The kids loved all the clowns that were there. I think
we left with at least 10 balloons animals and shapes
and that doesn't even count the balloons they left behind.
Here is a pic of them with one of the clowns.

It is so nice to see everyone. As I told Dr.Freiberg,
“With the kids in school and working full time we
do not get much of a chance to come down to Hershey
just to visit.” He said, “Yea, but if you need us you will
come.” I said “yea, but hopefully that doesn't ever
happen.” This is one time when not seeing someone is
a good thing because it must mean that things are going
well. Which they are!!! We thank God everyday that
we can say that and pray we can always say that.

We had the chance to see the Brady's again too. Some of
you may know Tom Brady who posts to the NB list
at times. It was nice to see them again. His son Eric is
doing well and goes to Sloan for follow up scans in
about 2 weeks. It is always nice to see Tom, Tammy,
Eric and Emily. Say a little prayer for Eric to hear
continued good news on his upcoming scans.

Friday night we went to Kirsten's award banquet
for Cheer leading. She received a plaque and a medallion
that she loves. She loved cheer leading so much that I
am sure that is something she will want to do again
next year.

This weekend starts the swim meets for swim club.
I am kinda excited to see the kids compete. They are
both doing so well. It is amazing how much better
they are doing “stroke” swimming compared to when
they first started.

Well, have a great week everyone and thank you for
stopping by to say hello.

Connie

Friday, December 1, 2006

I have to share a funny story with you all. Our puppy
is has lost two "baby" teeth this week. When she
lost the first tooth Jared asked such a cute
question..."Will the tooth fairy leave money for
Angel too?" it was so cute. Unfortunately
we had to tell him the answer was no. It was so cute
to see him think that way since the tooth fairy
just visited him last weekend.

____________________________

Wednesday, November 29, 2006

Well we have some sick kids here but they are on the
mend now. Jared had a cold but is getting better. Kirsten
has had a cough for about 2 weeks and when I took her to
the doctors over the weekend I was told she had walking
pneumonia. They are both on antibiotics now and getting
better.

The lunch for life campaign is going strong. I want to
sincerely thank everyone who has donated to the cause.

Today I have started a ham sandwich sale where all the
proceeds will be donated to lunch for life. In May when I
did this I was able to raise over $500.00. I hope this one is
as successful as the last.

If anyone is interested in helping sell sandwiches at there
work, in their community or to their friends please let me
know and i will send you the information on when and
an order form. Any help would be greatly appreciated.
The more sandwiches we sell the more money we raise
and closer we will come to a cure.

I am sadly aware that some people do not comprehend what
NB is and think “Ok, I have a child who is well now and I need
to move on.” I wish it were that easy, but it is not. Finding a
cure is to important to me personally. It is my goal to help
find a cure in anyway I can.

I would love to share some stories with these people if I may:

Michaela who relapsed about 2 months after treatment and
has passed away
Brandon who has relapsed and is back in treatment
Eric who had NB and was cancer free for 18 years and then
relapsed
Tanner who was treated for NB and won only to develop
Leukemia from the NB treatment
Michele who relapsed 5 years after treatment
Kendall who relapsed and is back in treatment
Christi who fought without ever going into remission and
has passed away
And I could go on and on.........................

What I am trying to say is some people say things that are
hurtful and they do not understand the treatment these
kids endure, the low success rate for survival and how it
feels to watch your child go through all of this. I just hope
and pray that they personally never have to find out either.
This is not a disease that I would wish on anyone, not even
my worst enemy.

Yes, we are blessed and we are lucky to have a healthy
little guy (Jared). But everyone is not so lucky and
everyone is not lucky forever so instead of being critical,
I challenge you to help make a difference......

Again I thank you all who have helped fund finding a
cure. I can not even begin to tell you how happy it
makes me to see so much money donated in honor
of Jared. It just goes to once again prove that people
care and we are loved. Thank you all from the bottom
of my heart.

God bless,

Connie

Sunday, November 26, 2006

We had a wonderful Thanksgiving. We ate at my
mom's house. Thank you mom for the delicious
meal.

At school they dressed up like pilgrams or indians.
Jared was a pilgram. Here is a pic..

Thursday night Jared lost another baby tooth. So of
course he was happy when the tooth fairy came to
see him and left him $5. I think that is the third tooth
now he has lost all together.

Jared is riding bike so well now. Yesterday Mike, Jared
and I rode bike from our house to the park down the rode
and through the park on the path to the other park.
Jared rides like a pro now. It was cute. When we were
riding and we would be coming up to people on the path,
Jared would ring his bell (thank you Katie for the bells) to
let people know he was coming so they could move. It
was funny.

Kirsten does not want alot to do with bike riding. But
Jared loves it. Yesterday Kirsten went to Grammy K's
house for a few hours. She told me she like to go because
her and Grammy have fun and do "girl" things like talk,
look at magazines and just do fun stuff. She loves going
to my moms house, which is great. So that is what Kirsten
did. Tonight they are both going to spend the night at my
mom's. They are looking forward to it.

My mom got a new car this week. The kids were pretending
they were driving.

PLEASE KEEP KOLTON APPLEBY IN YOUR PRAYERS THIS
WEEK AS HE HEADS TO CHOP FOR FOLLOW-UP SCANS.
This is a family we met at CHOP.
Sending prayers you hear continued NED.

Kolton's web page is:
http://www.caringbridge.org/pa/koltonappleby

Thursday, November 23, 2006

Today is Thanksgiving and I know I personally
have so much to be thankful for.

I am thankful for:
My husband who is there no matter what
My 2 children who are happy and healthy
My parents for being there for me
My entire family for being so special
My friends who are there for me and who I
am there for no matter what
And oh so much more..............

We really do have so much to be thankful for.
If I were to list everything I would be here
forever.

I want to say I am thankful too for having a child
that has remained cancer free, so far!!!

I want to thank Mark Dungan for creating lunch
for life so we can make a difference in this
crazy cancer world. I also want to thank all
who donated to lunch for life to help make a
difference. It really only takes $5 to help
make a difference.

Jared's giving tree,

Thank you and God bless you all. May you have a
blessed Thanksgiving.

Connie

Saturday, November 18, 2006

This past week was parent/ teacher conferences.

Kirsten's teacher informed us she has adjusted well
to the new school and is doing well academically. The
only negative thing we heard was that she is very social.
I mean very very social. He said she will talk to anyone
and everyone at anytime................literally. Well what
can I say. Kirsten has been a "chatter box" forever and
probably always will be. She is just little Miss. Friendly.
Although she does need to learn when it is appropriate
to talk in class and when it is not.........but if that is the
worst thing she is doing, we will take it. Could be a lot
worse. We are proud of Kirsten.

Jared is doing well too. He has adjusted well to starting
school. We need to continue to work on letters and sounds
with him, which we knew and have been doing. He is
doing well too. (no chatter box syndrome with Jared).
Good job Jared.

Both kids are doing well. Keep up the great job you are doing.

Yesterday was Open House for the kindergarten classes.
We went in and made Thanksgiving projects with the kids
ie. head bands, necklaces and turkeys out of potatoes.
The kids had a great time and I did too.

This weekend should be busy. Kirsten has a birthday party
today to go to and Jared is planning to have a friend over for
a play date. Then tomorrow we have a Pee Wee dinner for
cheer leading. And we would like to try to squeeze hiking
into our schedule too.

Have a great weekend.

Jared's giving tree,

I thank you all for your donations to Lunch for Life

Wednesday, November 15, 2006

Just a quick update to say that we made
it past the 48 hour mark and Angel is
doing fine. Thank God. I think she is
going to be fine.

She is running around and acting like
her normal self.....chewing things she
should not and peeing and pooping on my
floor so I will say all is good at the
Strayer house. Had to say that, I could
not help myself.

But seriously, I am glad she is OK.

Remember to donate to Lunch for life.
Jared's giving tree code is 19139

Monday, November 13, 2006

On Sunday our Angel (puppy) ate rat/mouse poisoning.
We ended up taking her to the vets and they gave her
a Vit K injection and some Vit K capsules to give her
daily for the next 3 weeks.

The Vet told me if all goes well the next 24 - 48 hours
then she should be OK. So we shall wait and see and
hope all goes well for her.

So far she is doing well and no symptoms of anything
happening. I hope it continues that way. The main thing
we are looking for is bleeding.

I did not know this before but the way Mouse poison
works is it destroys the Vit K in their bodies. Vit K
is responsible for blood clotting. Without Vit K one
would bleed to death and this is what happens about
a day or two after the mouse eats the poisoning. It is
not something that happens immediately.

So that is why they gave Angel a Vit K injection and
pills to take. We want to keep her Vit K level in her
body elevated so she does not bleed out. So as long
as she does not have any bleeding issues in the next
day or so we will be OK.

What a horrible thing to happen. Say a prayer that
Angel is OK and unharmed by the poison she consumed.

That is the only thing on my mind today. Prayers that
Angel is OK.

We did warn the kids that she may be sick and may
even die. Hopefully that is not the outcome but we
want them to be prepared just in case the worst case
scenario happens. They seem to understand the
possible outcome.........

Connie

Sunday, November 12, 2006

Here are the kid's school pictures:

When I look at these pictures I realize how big my
little kiddos are getting. My how they grow up so
fast. I was sitting and comparing the pictures of
Kirsten from the last 3 years and the changes in her
looks are amazing. She is growing up to be a fine
young lady. Jared too is losing that baby look. Both
my little ones are growing up to be big kids. Guess
that is all part of being a mom and watching them grow.
They will never be to big to get a hug or a kiss from
though. That is my favorite part...........

Jared's giving tree,

Thank you for stopping by. Please leave a
message in the guestbook so we know you were here.

Friday, November 10, 2006

We have had a busy week (like usual).

Jared has been irritable this week. I swear I
thought he had an ear infection. Because when
he gets ear infections he gets mad easily and just plain
mean. After all the fighting he has been doing
and all the yelling I would swear an infection was
the culprit.

So I took him to the docs mid week and was surprised
to hear "no ear infection" So I say to the doc
what are you saying, "he is just a brat?" (just joking)
then we both laugh. She said, well it tends to happen
at this age. I am thinking OK we can deal with that.

Now, I must add that Jared is a good boy and Kirsten
is a good girl too. They have their moments like all
kids do. No matter what we love them dearly.

Last week one day he actually got mad at Kirsten
and chased her down and when he caught up to her he
jumped on her back, knocking her to the floor and
started hitting her. This is not his normal behavior.
His buttons are pushed so easily. Of course he doesn't
act like this at school only at home.

He really gets like this with an ear infection.
He has had a sinus cold on and off the past few weeks
and was complaining of his ears hurting prior
to us going to the docs.

But still no infection even though all the symptoms
were there. We shall see how it goes.... The
doctor did give me a script for an antibiotic and
told me if the cold symptoms return just give it
to him. So far he has not needed it.

It is kinda funny how that whole fight started.
You have to understand that Jared is my "clean"
boy. He hates messes. The playroom was a mess
and we talked about cleaning it up. He was all
for it. Kirsten however is not like that. Clean
or messy..........doesn't matter to her. Messy
is the norm. So he wanted her to help him and she
didn't care if it was clean or not so after
they had words a few times he decided to go after her.

Now is a clean room worth a fight like that? I say
"NO WAY". But I guess in Jared's eyes it was. Not
acceptable though.

Jared and I did manage to clean the room with
some help from Kirsten. Although we did most
of it, she was responsibe to finish up the room.
Which she did. So together and with a few fights
(between the kids) we got it accomplished.

Those two kids are either playing and having fun or
at each other. Guess it is just a phase they are
going through. They edge each other on until the
other one gets so mad then we have to intervene
before someone gets hurt. Crazy lately.

But when they are playing they play so well together
and they are so cute to watch.

Coloring has been the thing lately. All they do
is color and draw pictures. My refrigerator is
full of pictures right now. I love it though.

Well have a great weekend. It is so nice here today
that I could actually wear shorts. Hope it stays
this way all weekend.

This coming week is conference week at school. Can
not wait to hear how things are going. Update later.

P.S. If you have not, consider donating to
Lunch for life, it goes to a great cause and would
be greatly appreciated.

Lunch for Life

(jared's giving tree code is 19139)

Connie

Monday, November 6, 2006

It is amazing how fast the weekends fly by.

Yesterday we took the kids hiking up near our house.
It was such a beautiful day. Most of the leaves have
now fallen off the trees.

Here is a pic of the kids in a crevice.

The kids love the hike but Kirsten certainly was tired near
the end. She had a sleep over birthday party the night
before and she tells us she stayed up till 1 a.m. No
wonder she was so tired. But that is what having sleep
overs is all about.

Then we all met at Applebys by my nephews birthday.
The kids do not get to see Nicholas all the time since
he lives in Maryland. So it was great watching them
play and have fun.

Of course I had so much fun this weekend that I forgot
all about Jared's homework due today. OOPS, not
a good thing. We just barely got it completed this
morning before the bus came. Talk about pushing it
till the last minute.

OK, so we have lived here for 3 months now and I actually
got some boxes unpacked this weekend. Yes , they have
been sitting around all this time. Oh well, they did not go
anywhere and I still have a few more to go as soon as I
figure out where to put the stuff. Oh the joys of moving.

Well have a great week and remember the lunch for life
campaign going on.

Jared's giving tree,

Have a great week everyone. I have to get to bed now.

Connie

Wednesday, November 1, 2006

I am excited to say that the annual Lunch for life giving tree
fundraiser is well underway. We are excited and hope to be
able to assist Lunch for Life in their fundraising crusade.

Last year Jared earned 4503 ornaments on his giving tree.
We do not know if we can beat that number this year.
But our goal is to try.

Soon all my Friends and family will be receiving either a letter
in the mail or via e-mail to once again ask for your assistance
in raising money for Lunch for life which goes to Neuroblastoma
research so that someday there may be a cure for Neuroblastoma.

If you are able to assist in us meeting our goal please do so by
going to the Lunch for Life web site (direct link above) and make
a donation in honor of Jared. If you do make a donation you may
use the giving code of 19139. By using this code you earn Jared
extra ornaments for his tree.

I will thank you all now for reading this and hopefully taking the time
to go to the Lunch for life site and donate in honor of Jared.

Any donation is great. Whether it is $5.00 or $50.00. Thank you for
caring so much. We certainly do appreciate it. Hugs to you all.

Connie

Wednesday, November 1, 2006

Trick or treat pics from the past two nights and the
kids in their costumes.

Sunday, October 29, 2006

Friday was the Halloween party and parade at school. The
kids all love the parade. The students all line up and march
around in their costumes. It is neat to see the costumes
they wear.

Friday night the kids and Mike took me out to dinner for
my birthday. Yes, I am 29 years old, AGAIN for the 9th year
in a row..................ha ha ha. Just kidding. I am really 37.
OK, I did not hit the big 40 like Mike yet so I am doing well.

I just hope when I do hit the big "40" that I am in great shape
like Mike is. So, I have 3 years to work on it. Maybe if I start
now I will do it. But knowing me I will procrastinate for the
next 2 years and 11 months then have to work my butt for
the last month.

The kids are getting very excited for Halloween. Monday night
we are going trick or treating at my work ( a Nursing Home).
The resident's love to see the kids and hand candy out to them.

Then Tuesday night is the real Trick or Treat night. SO this
week we will be busy with Halloween.

Have a fun Halloween everyone.

Here is Jared hanging out in the tree in our back yard

Thursday, October 26, 2006

Today is crazy hair day at school so we
tried to make the kids hair look a
little crazy.

We went to Walmart this morning and ended
up buying hair paint. We bought purple
and a sparkly gold color because that is
the school colors but when I got home I
realized the gold was not for hair so we
ended up with only purple to use. Here are
2 pics I took of them before they left for
school.

They are to cute. Jared also tried to
spike his hair with scrunch spray. To funny.

Connie

Monday, October 23, 2006

Last week was a busy week with swim practice every night.
that was just to determine what level the kids were at. Now
we will go to twice a week practice (which is more doable).

The kids are loving swimming. I think it will be great for them
both in the terms of fun and exercise.

Last week I went along on a field trip with Jared's class. We
went to the Oakes Museum. I have never been there before.
There are mounted animals everywhere like deer, bear,
and so forth. The kids really enjoyed it.

Yesterday was Kirsten's last time for cheerleading. The team
did not win their first final game. That is OK, they played a
good game though. I know she will miss cheering for sure.

Yesterday was dad's birthday. The "BIG 40". The kids
announced congratulations to him over the loudspeaker
at the football game and sang happy birthday at half
time. It was so cute. Mike loved it.

Mike has been working hard to get in great shape. I
think the 40th birthday had something to do with it.
He has been riding his bike to work everyday for
about a month or so. And watching his diet. Here is
a cool silhouette of him from when we went hiking last
week. He is now a lean and mean fighting machine.
Just kidding about that, but he is looking good.

The kids helped me bake Mike a cake yesterday for
his birthday. Here is Jared doing his part.

Here is a pic of the kids and dad with the cake

We went to a Halloween parade last week. The kids loved
seeing all the costumes. There are 2 more local parades
this week we are going to try to go to.

Besides that all is going well. Have a great week.

Sunday, October 15, 2006

Saturday we took the kids hiking up Tumbling Run
which us near the Lakes and Pine Grove furnace
State Park. When we left this morning it was a
little chilly and by the time we were done it was
warm.

We took both the dogs with us. Buddy did well
which he always does. Angel went on her first
hike today. She did great too. What a trooper
for a little dog.

The kids had a great time too. They really enjoyed
picking up the fallen leaves that had changed color.
we found out the red and orange ones were our
favorite ones. I personally love fall time. It is my
favorite season of the year.

This afternoon we went to The Bengal football game
so Kirsten could cheer. This was the last game of
the regular season. We now go into finals.

Starting next week it will be busy. We have
cheer leading practice on Wednesday evenings only
(Thank goodness) and Football games on Sundays.

We are starting swim club this coming week too.
this coming week it is Monday thru Friday for
practice so the coaches can determine what level
the kids belong in. After that then it will be
practice a few nights a week and swim meets on
Saturday mornings. So, until football and cheer leading
are over it is going to be busier. We are anticipating
football to last another 3-4 weeks yet.

Jared and Kirsten are both wanting to do the swim
club thing. I say "yes" because it keeps them
active all winter.

Well have a great week and thank you for stopping
by and leaving messages so we know you were
here.

Sunday, October 8, 2006

Kirsten had a great time showing off their dance routine at
the football game today. It is definite now that the Pee Wee
team that she cheers for will be going onto finals. That
means the season was suppose to be over next weekend
but will now be extended.

The kids are spending the night at my mom's tonight since
they do not have school tomorrow. That way I can come
home from work tomorrow morning and sleep.

I do not know if you Will be able to see this or not. I went to
get the camera and the battery was acting up and needed
charged and as I was carrying the camera across the
driveway I snapped a picture to see if it worked or not.

Anyways when Mike and I were reviewing the pics we saw
this pic of the driveway and we both see what looks like a
face. It is in the middle toward the right and looks like
big googly eyes, a nose and a mouth. We both saw the
exact same thing. It is strange. I think it is a
ghost. See if you can see it.

Here is a pic of Mike he is in the very top of this pine tree.
yea, he is a nut. Not me, I do not like heights that much.

Have a great week.

Cousin Brooke, Jared, Cousin Nicholas and Kirsten

Wednesday, October 4, 2006

OK, OK, so I got the point. The general consensus is
we should not really teach our kids to hit others even
if they hit them first.

Darn it, that was not my thought process. My thought
process was sock them a good one to teach them not
to mess with you again.

Just kidding, not raising an animal here but a little boy
instead. Which I think he will turn out OK regardless
to his parents thinking he should sock the other kid.

Actually I must admit that Monday when Jared came
home from school he proudly told us the little boy who
hit him Friday told him he was sorry. That was really
sweet to hear.

So.................maybe Jared was the better person for
not caring and ignoring it. Way smarter than us, that
is for sure.

I must share a story another mom shared with me.
Instead of wishing our kids could punch them back,
we will just wish a itchy rash on them bullies. I loved
that and it made me laugh. Not that I really want them
to get an itchy rash but it was funny thinking about it.

Things are going well here.

Kirsten has parents day this Sunday at her football game.
The cheerleaders have been practicing endlessly for the
dance routine they are going to be performing for us. We
get to escort her out on the field. She can hardly wait for
it.

Like I said before she loves cheer leading so much. It is
fantastic to watch her cheer. She is smiles all over.

Here is a pic of Kirsten that they took for
cheerleading.

Well have a great week everyone.

Connie

Monday, October 2, 2006

OK, here is the question of the week.

What do you tell your son to do when another kid
punches him on the bus?

Do you tell him to walk away and tell an adult or do
you tell him to punch him back?

Well the "good" parent answer is probably to tell them
to ignore it and tell the bus driver. Unfortunately that
was not my answer. My answer was to punch the kid
back. Come on, he deserves it, doesn't he?

Well my Jared boy is not like that. He said, I can't
hit him back because I might hurt him and then get
in trouble. And I do not want to get in trouble.

I'm thinking what? The boy he will sock his sister
for no reason at all and he won't return a punch to
another kid who hit him first? OK, who is this child?

So I tell him it is not OK to hit people but if some
boy hits him first then he has my permission to hit
him back. This conflicting information may
not be understood by a 5 year old.

I don't want Jared to be a brute but I also don't want
him to get walked all over and pushed around.

Let's face it, he will probably only have to hit the kid
back one time till the kid gets the point and leaves
him alone.

Now all I have to do it talk Jared into doing it.

It was funny Mike and I said can you imagine being
called by the principal for Jared hitting someone and
we would say, "Thank you and we will talk to him."
Then we tell Jared "good job buddy" and pat him on
the back.

Now I am sure Jared will not hit another kid because
besides being mad at his sister that is not really his
nature. So we shall see what happens. Guess it is
time for boxing lessons. GO ROCKEY!!!!!

Any advice? Till later, good bye.

Thursday, September 28, 2006

On Saturday we attended the 3rd birthday party
of a little boy named Noah. Noah was diagnosed
with Neuroblastoma at birth. He was stage 4s.
His first year of life was a rough one. He is now 3
and is NED. To look at him you would have no
idea of everything he has been through. He is really
an amazing little boy.

HAPPY BIRTHDAY NOAH!!!!!!

Life is going well. Except this new puppy. She is
totally clueless about where to go to the bathroom.
I think she believes my couch, floor and the kids
beds are OK places........wrong!!!

She sure is a tough one to house break. I am going
to be the one breaking before the housebreaking is
done. We are literally at our wits end on what to do
with her. She gives no indication she that she is aware
inside the house is wrong. I don't get it. OK, I do, she
is a 13 week puppy. That is the answer but it is driving
us all crazy.

Jared actually said the other night that he is tired of her
peeing in his room and on his bed (thank god for plastic
mattress covers) that he asked if we could take her back
where we got her? Let me tell you I had to think long and
hard about that one before I answered because I wanted
to scream "YES, we can" and load her in the car and take
her back. But instead, I said she is a puppy and we have
to teach her where to go to the bathroom and she will
get it soon. Now darn it I hope what I said is true.

It would not take much for me to call the newspaper and
put an ad in for a FREE PUPPY TO GOOD HOME. But
I would also need to add that new owner must
have carpet cleaner, mop and bucket, plenty of
Mr. Clean and Laundry detergent, be willing to
wash laundy all day/everyday, sneakers for running
(to get the dog to poop), plenty of patience
and the time during the day to fit all this in
Stay at home person preferred to be able to
accomplish all this. It would be a great
feeling to do this because she is driving
me crazy. But I can not do it, at least not yet.

She is like a baby only no diaper. hhhmmmmm,
that may be an idea. Put a diaper on her in
the house. Just kidding.

I now call her my little pisser (not in front of the kids) because
she pees EVERYWHERE!!! Take her out for 30 minutes and
have her pee and somehow she will still come in and pee on
my floor. UGH!!!

I have learned that if you can not get her to poop you have
to run her. So yes, I am forced to get exercise. Run her
around the yard a few times and tada..............she poops.
It is amazing. Does not always works but works most of
the time.

So enough griping about my crazy untrainable puppy that
is driving me in sane.

p.s. She is lucky she is so cute and I love her or she would
be gone by now. Have a great day.

Connie

Tuesday, September 26, 2006

I have to share with you that we now have 2 bike
riders (without training wheels) in our house.

Sunday evening Kirsten wanted to try to ride
bike too. She did so well. She is not as
confident as Jared yet, but she will be soon.

Jared is riding all over the place now. We take
them to ride on a quiet rode where there are not
a lot of cars driving, near our house and Jared
rides like he has been riding forever. You should
see him go. It is amazing.

Kirsten is getting there. She is a little more
cautious and nervous but the more she rides
the more self confident she becomes. If we
continue to do this every day I know within a
few days she will be riding as well as Jared or
better.

We are so proud of both of them. What an
accomplishment for them both.

Saturday, Septembr 23, 2006

Well as you can see from the main picture on the page
Jared is now a bike riding little boy. It is so neat to see
him accomplish this.

When we went to Phili last week and met with Dr.Grupp
he asked Jared if he could ride a bike? Jared was not
riding his bike at all then just because he did not want
to.

Well after we came home Jared started riding his bike all
the time (with training wheels) on the drive way and through
the yard.

Then Jared decided he wanted to try without training wheels
and he was able to do it right off the bat once he got started.
it was cool to watch him ride a bike like a big boy.

We are so proud of him and he is so proud of himself.

Wednesday, September 20, 2006

Today is a day of mourning and a day of
celebration. We mourn the loss of the
brave NB fighter, Christi Thomas. Her
battle with this relentless disease is
over here on earth. We now celebrate
her eternal life in heaven. May she
be up in heaven pain free. Her battle
was a couragous one and she fought till
the very end.

Please take a moment to say a prayer for
the Thomas team for peace and strength.
Her parents (Angela and Shayne) have
documented on her blog site how they have
planned the funeral and how beautiful it
will be. With a carriage drawn by horses
and a dove release. The thinking is since
Christi will not be around to have a big
beautiful wedding she will have the most
beautiful celebration of life ceremony.
Nothing will be spared.........

This reminds me of my friend Kim Mease.
When Michaela passed away I must admit
it was the first child funeral I had ever
attended. It was so sad to be there and
say good bye to a child who only began to
live their life. But I must say it was
the most beautiful funeral I had ever been
too. Michaela's memories were everywhere.

Kim had a slide show of pictures of Michaela
showing the entire time. Pictures of
her everywhere. The most beautiful music
and many memories shared. so although it
was sad it was a funeral I will remember
forever and ever like it was yesterday.

Please help get the word out about Neuroblastoma.
Enough children have left their parents, we
need to find a cure. Soon the lunch for life
is going to be starting a big fundraiser
again and I am anxious to help raise more
funds for research. All our help is needed
and any $$ amount helps. Please pass the word
around.

God bless and keep the Thomas team in your
prayers today and forever.

Connie

Thursday, September 14, 2006

We had a nice visit to CHOP. We were able to meet many
people. Here is a picture of us at the Ronald ..........

From left to right is me, Kim Malarkey, Aimee Jackson and in front is
Jared and Kendall.

Kim and Aimee it was so nice to spend the evening with you two
just talking and having fun. We really enjoyed it.

Kim's son Ryan is in the process of doing his second transplant right
now. He is an awesome little boy. I wish I could have met him again
but I had a little bit of a head cold on Wednesday and did not want
to put Ryan at risk and therefore was unable to go in and see him.
Give him big hugs for me Kim. Ryan's site is
http://www.caringbridge.org/visit/ryanmalarkey Ryan may you tolerate
the rest of your treatment well and have fun.

Aimee and Kendall are awesome people too. Jared and Kendall had
a great time just running around and being "typical" little boys. They
chased each other and just had a blast all afternoon and evening.
I am so glad we were able to spend so much time with you two.

When I asked the boys to get together for a picture it
was so cute because Kendall reached his hand out to
hold Jared's hand.

Kendall was at CHOP for scans. He is on relapse treatment. Their
scans did not show what they were hoping for. They found out his
tumor has progressed and are now looking for a new treatment
option. To look at Kendall and see how he runs around you would
have no idea of this. Kendall you are in our prayers for a new
treatment that you can tolerate well with minimal side effects to
get you back to NED. Kendall's site is
http://www.caringbridge.org/ny/kendall

On a sad note.........I am so glad I had the opportunity to meet the
Thomas family again. Their dtr (Christi) has been fighting this disease
for 4 years nonstop. She is now not doing well and her parents really
need our support and love. Christi is such an awesome little girl.
The Thomas team is from Ohio but have been at CHOP for a while
and plan on being here till the end. My heart goes out to the
Thomas team. All I had to offer them was hugs and prayers. You
can visit Christi's site at www.christithomas.blogspot.com

Please keep the Thomas team in your prayers that Christi will be
pain free and that Angela and Shayne have the strength to go on
one day at a time.

We also met Alexa Bailey and her mom Stephanie. Alexa recently
finished treatment and is NED. She looked awesome. Keep up the
good work Alexa. It was nice to meet you all. Alexa's site is
http://www.caringbridge.org/visit/alexabailey

We were able to meet Laura Stiles too. She is in treatment and at
CHOP for follow up scans. She is a neat girl. I hope you all
received good news on your scans. Laura's site is
http://www.caringbridge.org/visit/laurastiles

Seeing all these people in various degrees of treatment really makes
you see how horrible this disease really is. To many parents are
losing their children and way to many kids are courageously fighting
this battle on a daily basis.

We do realize how blessed we are. We thank the good Lord for
Jared being NED and pray he stays that way forever.

Please keep all these families and kids in your prayers. They
desperately need our help.

Hugs and prayers to all.

Connie

Wednesday, September 13, 2006 6:42 PM CDT

Only time for a quick update now.

Jared's MIBG scan was NORMAL,
Thank God.

Thank you all for your prayers. It
worked.

I will update more in the days to come.

God bless.

Connie

Tuesday, September 12, 2006

We arrived in Phili last night. Had our CT scan
today and all is well. Tomorrow is our MIBG
scan.

Saw Dr.Grupp today and had our hearing test too.
So far so good, no concerns came up. Yahoo!!!

Jared grew 1 inch and gained 2.2 pounds since
our last visit in March.

Update more tomorrow.

Miss you daddy and Kirsten!!! Love ya and see
ya tomorrow afternnon. (They had to stay
behind at home to watch the puppy).

Connie

Saturday, September 9, 2006

Yesterday Mike and I celebrated our 16th
wedding anniversary. Had a night out for
dinner. It was just Kirsten, Mike and I.
Jared spent the night at Grammy's house.
Kirsten was suppose to go to Grammy's too
but decided at the last minute to throw
a temper tantrum so she ended up staying
home instead. So we took her a long with
us, which was fine. We had a great evening
and I think she did too.

The years seem to be flying right by for
us. Seems like only yesterday we were
married. I remember it like it was yesterday
anyways..............

Monday after Jared gets out of school we will
be leaving to go to CHOP for scans, hearing
test and MD follow up. Please keep him in
your prayers for continued NED.

Connie

Thursday, September 7, 2006

We have a new addition to the family. And no,
I am not having a baby.

although by the looks of the pics you would
think "mama Kirsten" has had one. This is
her with Angel in the baby stroller.

Dad promised the kids a new puppy when we
moved and it finally happened. We are
now the proud owners of a little white west
highland terrier pup. She is 9 weeks old.
Her name is Angel.

Kirsten picked her name and everyone liked
it so it was a go. I forgot how much work
puppies were. We are making Kirsten be
responsible for her though. It is her job
to watch her, take her outside and take
care of her. She is doing a great job too.
Of course, we help her too. One person can
not do it alone.

Of course you can't leave the little thing
alone for a moment or she is getting into
things, chewing things, going to the bathroom
or something...........right now she is
resting on my lap as I type. That is the
only way to get my computer time in (which
has been minimal lately).

So she is a cute little pup but I am ready
for the housebreaking thing to be accomplished.
Which eventually, it will be. I need puppy
diapers (ha ha)

Angel is well liked but also driving Buddy
crazy. She is playful and likes to jump at
him and nip at him. He growls to let her
know he has had enough and then we have to
intervene. She will learn though, eventually.

School is going well for the kids. Having
fun and learning lots.

My new job is going OK. I have to get myself
into the night shift mode. I am getting
there though. Not an easy job and then I
stress over making sure I get out on time
(6 a.m.) to get home so Mike can get off
to work on time. Each night has gotten a
little easier then the previous one so I
have high hopes that it will work out well.
Time will tell..........................

I shared the pic of Jared with the underwear
on his head. Now both kids think they should
do that. Of course, it is always clean underwear.
I call them the underwear bandits. Too cute....

Well time to go get the kids up for school
then off to bed for me. Have a great week.

Saturday, September 2, 2006

Last night after supper Kirsten did
my hair and made me "pretty". Then I
did hers and made it look just like
mine. Jared wanted in on the fun too but
his hair is to short to do so daddy
told him to put "clean" underware on
his head to look silly. Just had to
share the picture of this........

Have a great weekend everyone.

Connie

the kids getting ready to get on the
school bus on the first day of school.

Friday, September 1, 2006

Had to share a quick story today. You know
I said that Jared told me got in a fight on
the bus the first day of school. Well last
night before bed he was telling me about all
his new friends and he was telling me about
his friend in the bus and how they look at his
magazines and play and guess what? Is it the
same boy. That is great. The first day he
upset Jared but now they are friends. No
grudges held, kids are great.

Jared is funny he meets new friends and tells
me all about them. I ask, "what is their name?"
he tells me I don't know. So he has lots of
friends he likes but no names attached. To
Jared names are unimportant right now. All he
knows is he has fun with them and they are his
friends.

Now Kirsten is another story. Kirsten knows
"everybody's " name. And I mean E-V-E-R-Y
-B-O-D-Y!!!! She is a big time people
person. I could not even begin to tell you
how many kids she has already invited to her
house to play or for a sleep over and how many
kids she has made plans with to go to their
house. My social butterfly. How cute. Little
Miss outgoing that she is.

Jared and his friends at cheer leading practice
have tons of fine while their brother's practice
football or sister's practice cheer leading.
Last night they had to much fun. Jared came
home with a knot and bruise on his leg where
they were throwing rocks at each other. That
is until they were stopped. And a big brush
burn on his leg from wresting around. They
were acting like wrestlers and taking each
other "down". Jared was happy because he was
usually on top. "I won" is what he said. I
guess boys will be boys.

Today is my last day in my Staff development/ADON
job at work. Sunday I start 10p-6a nursing
supervisor. I am excited to start but I sure will
miss my job and all the folks I work beside.
Even though I am still at the same employer I
will not see them anymore with my new hours.
So today is a happy and sad day.

This week I had a very rewarding thing happen.
I walked into my office to find a card and a
gift. It was from a new nursing assistant
that we hired in June. She sent me this to
thank me for helping her get a job here and for
going out of my way to make her orientation
go well and just doing everything I did to
help her. I was shocked and happy. I really
did push to get her in and help her out, just
like I do all new employees. I felt so happy
though that she went out of her way to thank
me. It just felt so rewarding to me. To have
someone thank me and to know I made a difference
in this person's life. It was a good last thing
to happen as I end this job and move on to
something new. Made me appreciate all I do for
others in my job and know that yes, I can and
do make a difference in their lives. But I
also know as a supervisor I can continue to
do that. To be their to support them and help
in any way I can. I am looking forward to
this new position and my new responsibilities.
Wish me luck.

Have a great weekend.

Connie

Wednesday, August 30, 2006

Yesterday was the first day of school.
Kirsten was so anxious about starting
school that she was up til about 11pm
Sunday night. Just could not sleep.

Both kids seemed excited about going
yesterday morning. Grammy K even
surprised them by showing up to see
them off on the school bus.

It was not sad to see Jared's first day
of school. It was exciting to see it.

I am working 9a-5p this week so I can
put them on the bus and off to work I
go. I start night shift this coming
Sunday night.

Yesterday on the way home from work I
called home to see how it went and Kirsten
talked my ear off. She had a great day,
met lots of new kids and had fun. That
is the short version of our conversation:/

The first thing Jared told me was "I got
in a fight on the bus" Now I am thinking
Oh no, not on the first day of school.

It ended up not being a "fight" with hitting
or anything like that occurring. Thank
goodness.

The boy he sat with kept leaning on him and
he was close to falling out of the seat.
Jared told the boy to stop leaning on him
and move over and he would not. So Jared
pushed him over and then the boy pushed him
back and so forth til the bus driver saw it
and told them both to stop it.

Jared was OK with all of this because he said,
"she told us to stop but she did not yell"
referring to the bus driver.

It really surprised me to hear him say this.
Not that he is a push over but he can be
shy at times and so it just caught me off
guard. I guess he is capable of standing
up for himself.

So hopefully that doesn't reoccur. Jared
and I did have a talk about how to handle
these situations and bus etiquette. So
hopefully it works.

Next week I will be starting night shift
so I guess if he gets kicked off the bus
for something I could take him. Just
kidding. I am sure he will do fine. He
is a smart boy. No one got hurt and I
am glad to see that he will stand up for
himself if he needs too. That is really
a good thing.

When my mom heard this story she asked me
who Jared takes after? I responded
"aunt Julie". I think she meant me or
Mike but I had to say Julie because I
could not resist.

For those of you that know my sister I
am sure you could laugh. Julie is a
nice sweet person but in school she sure
did not put up with anything from anybody.
It was interesting. So when the kids act
really bossy or like that I call it
acting like "little Julie"

Growing up Julie ruled us kids. We did
whatever she said because she acted like
the boss and we didn't want to disobey
her (funny). So that is a little family
joke.

Julie's dtr has a mild disposition and
Kirsten has always been headstrong and
stubborn. So we would joke around that
we think our kids were swapped. Cortney
acted more like me and Kirsten acted more
like Julie.

So you can see the fun in that statement
that Jared acted like aunt Julie. Sorry
Julie. Could not resist that one.

Well have a great day.

Connie

Sunday, August 27, 2006

I do not usually put just a picture of
Kirsten on the top of the home page, but
she was so happy to cheer for her first
football game today. That I just had to
share it.

Doesn't she look cute? I think so.

She had such a blast today cheering. It
was fun just watching her. I think she
actually found something she will love
doing. Which I am happy for her about.

Jared just ran around with his new friends
during the entire game and then daddy and
his friend and him threw football to each
other.

One more day till school starts. The kids
are both getting anxious to start.

Then 2 more weeks til we go to Phili for
our next scans (Sept. 12/13). I am getting
ready to get them done and over with now.
I can feel the anxiety building........

So I hope the next 2 weeks go smooth and I
can keep busy to keep my mind occupied....
like that will be difficult!!

The kids picked out new bedroom decorations
today and so I have to get busy redoing their
rooms this week. Or at least that is my plan.
We will see how far I get.

Have a great day.

Connie

Thursday, August 24, 2006

Normally Jared will not participate in
eductional stuff with me. He wants to
play and that is it.

Well the last 2 nights he has been
practicing letter recognition and
practicing writing his name for as long
as he wants to (about 10 minutes).

I just had to share this though. This
is after practicing writing his name
about 3 times. I was impressed and
proud of him...

Imge

Didn't he do well. I think so.

Well we officially own only one house
now. Yippy for us. All the house
things/deals are completed. We settled
on our old house yesterday. It was nice
to be on the receiving end instead of
the giving end. Yahoo........

Have a great week.

Connie

Tuesday, August 22, 2006

Kirsten had her orientation for 2nd graders who are
new to the school district yesterday. When she was shown
her classroom she was thrilled..........On the hall
outside the door was shapes with all the kids
names on and guess what? Her best friend,
Taylor, who moved from Carlisle to South Middleton
during the school year last year was in her class. It got
even better inside..........All the desks had folders
with a child's name on it. Kirsten's was in the front
row and Taylor was right beside her. Kirsten loved
this thought immediately. I too was thrilled to see
her so glad. I know it really makes Kirsten feel
more comfortable about starting school. Now she
is so anxious to start and see Taylor.

Yesterday Kirsten was telling me how she thinks
our new house is lucky. I asked her why she said
that and she said:

"Well I am starting a new school, Taylor is in my
class, we have a trampoline, I am a cheerleader,
we have a bigger yard, we are getting a puppy,
and we have a laundry shoot."

Well she is not hard to please, now is she? Gotta
love her.

Jared and Kirsten have been playfully wrestling
around lately. I mean all the time. Of course,
Kirsten is bigger so she is usually on top and
wins.

Here is a picture of them on the trampoline
wrestling around.

We are now down to 1 week till school starts.

Tomorrow we settle on the house we are selling.
It will be nice to get it done and over with.

Over the weekend we were at our old house,
finishing some cleaning and the kids were upstairs,
being really quiet. When I went up they had
been very busy, tearing the wallpaper boarder
off their old bedroom walls........I was not real
happy. It looked BAD! Jared had pulled his off
in about 3 sections and Kirsten had hers off in
a lot more areas. I could've screamed. Thinking
"oh no, not before the final walk through!"

We were lucky that we still had a can of spray
adhesive there and I managed to fix it up the best
I could but let me tell you, it does not look the
greatest. On a quick walk through, they probably
will not notice it. But once they get a good look,
it will definitely be obvious.

What were they thinking? They told us they did not
think the new couple had kids so they thought they
would take it off for them. Now yesterday Kirsten
told me they tried to make it ugly so the people
would not want to buy the house (because they did
not want to move.) but Kirsten said, now that
Taylor is in her class she wants them to buy it
and is glad we moved..........what do you say to a
7 year old when she tells you that?

So anyways, all is well now and I will keep my fingers
crossed that all goes well with the walk through
tomorrow. We shall see..........

Have a great week everyone. Kirsten has helped
me redo the look of the web page. She helped
pick out the background and print color and the
kid both picked out new "tickers" for the page
announcing their birthdays. She is happy to help
choose.

Please continue to pray for all the kids effected by
NB. Sammy (a little boy I know) just found out he
has relapsed. They are from California but his dad
(Neil Hutchinson) is originally from Mechanicsburg.
So they are back in the fight and just also celebrating
the birth of their 3rd child. So they have a lot on their
plate right now.

Sam's web site is http://www.teamsam.com

Connie

Thursday, August 17, 2006

Yesterday Jared had the opportunity to go to
his new school and meet his teacher (Mrs.Burns).
They had their kindergarten kick off. Jared
had a lot of fun.

He also got to meet all the kids in his
class and then they played games and went
on their first school bus ride around the
school. He loved it.

It was funny watching all the kids when
they came in. Some were happy to be there
and some were NOT.

The kids all sat on a mat on the floor in
the cafeteria and the parents sat at the
tables. Some kids walked right up and sat
down on the floor. Others were crying
and clinging to their parents not wanting
to sit on the floor or even be in the school.

Thank goodness, I had one of the ones that
just sat on the floor. Before I knew it
Jared was talking to the kids around him and
having fun. It was wonderful to watch.

Jared made new friends already and is
looking forward to seeing them again. This
is great. You always wonder how the
school transition will be for them and
I think it will be OK for him. Which I am
glad for.

They had to do some tasks like trace, cut
out, decorate and write their name on a
craft. OK, we need to work on the name
writing thing before school starts. Jared
is not real motivated to do this, so it
may be a task. The name writing thing I
am referring to. I am sure he will do OK
though in the school and learning setting.

I was surprised how many parents I knew
and had gone to school with myself. I know
at least 4 parents of kids in his class.

One thing that is funny is most of the
teachers are young except Jared's. She is
a nice older lady. Jared was telling
someone about his teacher last night and
they asked him if he liked her? He said,
"yes, she is nice. She is a grandma."
I asked him if she told him that? He replied,
"no, but she's old so I know she is." It
was funny to hear him say this. She
probably is a grandma to someone, but
she does seem really nice.

School starts in about 2 weeks (August 29).
Both kids are actually looking forward
to going to school.

Kirsten goes to meet her class and teacher
this coming Monday. She has a male
teacher this year. Which she never has
before. But I am sure all will go well.

I am not sad to see Jared start school.
I am glad he is starting. I think it will
be good for him. It is only sad that my "baby"
is growing up and going to school already
but it is a wonderful thing too.

I personally just love to see the kids
playing with their friends and having fun
and adjusting so well to change. It is
a wonderful thing to see. And it is so
rewarding to me as a parent.

So even when my kids are argumentative and
fighting with me I know they do know how
to interact appropriately with others
and get along well. A wonderful site to
witness.

It pleases me to see them interacting
with others so well. I love them a BIG bunch.
I am thankful for them everyday and for
everything they are growing up to become.
A wonderful young lady and gentleman.

Connie

Tuesday, August 15, 2006

Well the kids are settling into the new house.

Some of their favorite things about the house are:
1. A laundry shoot in the bathroom
2. A pool they can actually touch/stand in
3. No steps to climb when it is time to go to bed
4. A bigger yard to run and play in
5. A play room all of their own (not set up yet)
And that is the main things they like better

Last weekend we bought the kids a trampoline for
the yard. I am not sure who is having more fun on
it though..........them or us.

Mike is a "nut". He can jump up and do back and
front flips on it in the air. It is neat to watch him.
I think sometimes he forgets he is turning 40 this
year. He still thinks he is a young kid. (Good for
him).

Of course we have to tell the kids to be careful. NO
FLIPS allowed. So it is a do as daddy says and
not as daddy does.

They tell dad he is going to fall and bust his head
open or hurt himself doing that. I tell them, daddy
is not so smart sometimes. Then we just laugh.

Cheer leading is going well for Kirsten. She loves
it. She looks forward to practice every night and
is making a lot of new friends. Which is great for
her. She really is the social butterfly. She loves
people.

I really am glad the transition has gone so well for
the kids. I worried more about them then us.

We are meeting lots of kids who will be in their class
or grade, which will make the school transition go well.

It is hard to believe the kids will be back in school in
about 2 weeks. WOW this summer has been just
flying by. It sure has been a busy summer.

I hope everyone has a great week. Thank you for
stopping by.

Connie

Thursday, August 10, 2006

Time for a more lengthy update.

So we moved in our new "old"
house last weekend. Here is a
picture of the front....

I think I moved when I took the
picture, and that is why the roof
looks the way it does. Or maybe it
is just because of all the trouble
we have had with it.

We had a new roof put on 4 weeks ago
prior to settlement and the roofers
did not do everything they were
suppose to do. They refused to
fix it right for the sellers, so
Tuesday of this week a different
roofer came out and fixed it.

They too did not fix what they were
suppose to fix. All they had to do
was tear off half of the front of
the roof, replace sheeting and install
new shingles where they tore them off.
Well, when we came home from work on
Tuesday and saw our house we were shocked.
We had a roof that was half gray and half
black. All I can say is what is wrong
with people?We were upset. So on Wednesday
they came back out and ripped off the
entire new roof they applied to the front
and replaced the sheeting and applied the
right color of shingles. I find it hard
to believe that they finished their work
on Tuesday, looked at it and thought, "We
did a good job". They had to have seen
that the shingles did not match up.
Anyways after a long ordeal fighting
with the roofers, talking to our Realtor
and talking to our attorney the roofer
said they would fix it right for no cost.
Which they should of. They are the ones
who did not do it right in the first place.
If I never see another roofer again in my
life, that will be OK with me!!!

This is a view of the back of the house

The bushes in the immediate back yard
surround the pool.

The kids love this pool because they can
touch in it. It goes from 3 ft to 6 ft.
They are having a blast in it.

Behind the pool is more yard and then
just fields. No houses behind us or
on the one side and there never will be
due to the township owning the land. We
love that.

This is the area behind the fenced in
pool. We are planning on putting tire
swings on the big Maple tree out there.
The kids will love that.

So that is views of the house. It is not
a big house but we love it. It is so weird,
when we moved in here the transition went
well. It is not even strange living in
a different house. It feels so natural
being here. It is almost like we just belong.

Of course I still have tons of organizing
and unpacking to do but I am getting
there slowly but surely. We have run
into some glitches but not to bad.

The kids love it here. They enjoy
swimming, playing pool downstairs
and just having the freedom to fun around.

Kirsten joined cheer leading this year
at the new school. We thought is was
a great way to get to know people.
She loves it. The last 2 nights practice
has been at a gym and they are learning
cheers, routines and stunting. She is
thrilled about it. Their first game is
in 2 weeks. Then we will have games to
go to every Sunday for a few months.
Will be busy but fun for her.

Jared well he is our monkey boy.
He wanted to play football but was
a year to young. So he has to wait
till next year, which he is OK with.

Well better go get busy. Lots to do
today. Thanks for stopping by to visit.

Monday, August 7, 2006

Well we settled on our new house on Friday and
we have all the big stuff moved in and in its
place. Lots and lots of boxes to still unpack.

I am off all week except Tuesday, so hopefully
I can get us settled in soon.

Update more later.

Wednesday, August 2, 2006

Well, I hear our house buying is a "GO".

The Realtor is paying for the repairs
for the roof out of his commission because
he wants the deal to go through. We are
so very very thankful.

We are talking about filing a complaint
against the original roofer. They think
if we and the sellers of the house go
together we might be able to do it.
(fight for a few things). One is to make
them provide the warranty they promised on
the workmanship and two to fight for them
to reimburse the Realtor for the second
roof repair which was the original roofers
responsibility to begin with.

So it looks like we will definitely be
moving in 2 days. I better get in gear and
finish packing.

This week has shown major changes at my work.
This week a few important people were
relieved from their jobs. I know they
must do what they see fit, but it is with a
sad heart I say this. I will greatly miss
these two gentlemen who I have come to know
well and be friends with.

It is sad to see change and scary too. It is
easier to go about business the same as
usual. Change is not easy. Please keep Jeff
and Tom in your prayers that they find
appropriate jobs for themselves and soon. What
a difficult position to be in. I miss them
already and it is only 2 days later.

On the up side, I only have about 3-4 more
weeks till I move to my new job as night
shift Nursing supervisor. I am so so
looking forward to the change in my life.
the change is so badly needed right now.

Thank you for checking in. Please leave a
guest book entry so we know you were here
checking on us.

Connie

Monday, July 31, 2006

The kids had a great weekend. On Friday
night after the Bible school program they
spent the night at Grammy K's house.

Saturday night Kirsten spent the night at
a friend's house (Crissy) and they went to
a "Hawaii" party and had a great time.

Jared went to Grammy Strayer's on Saturday
evening just to spend sometime with her.

Mike and I did a lot of packing on Saturday
to get ready for the move that hopefully
occurs. (Smile) we shall see.......

Yesterday was a lazy day but fun. Jared
swam almost all day. Kirsten came home
from her friend's house then Jared had
his friend (Josh) come over and play and
swim. Jarad has been wanting to have Josh
over for a while now and it finally worked
out. Those boys are a blast together.

Those kids are so so silly. We were thankful
for the quiet, uneventful and stress free
day yesterday. We needed it.

Hope everyone has a great week.

Sunday, July 30, 2006

Today is a better day.
Please excuse my venting the
other day. I was at my wits
end. I am in a better place
now. Thank you Lord for that.

Yesterday we went out to the
new house and met the Realtor
and a roofer and told them
exactly what we expect to to be
done and now we wait to see if
they agree to do it or not...

I believe they will agree with
us. We will find out tomorrow.
Until then I am just going to
go about my business and not
fret over the outcome.

I have been so stressed out lately
and just plain "grumpy".

On a better note..............
Friday night we went to the kids
closing program for Bible School.

The kids did awesome. It was so
cute watching them up there singing
and having fun. I video taped it
so we would have it forever to see.

They made so many neat crafts there
and as a surprise they gave them
live fish and frogs to take home.
I am referring to little ones in a
fish tank. Since the kids already
each have a fish tank they really
liked that.

This is like the 5th year Kirsten has
gone to this Bible school and like the
3rd year for Jared.

It was the first night of Bible school
in 2003 when I took Jared to the doctors
because I felt a lump in his belly. I
came home from the doctor's office
(crying) because I was told Jared had
some type of "tumor" in his belly. I
then took Kirsten to bible school so
she could not be involved with the
discussions Mike and I needed to have
that night before our appointment the
next day at Hershey with the oncologist.

Jared was in-patient the entire week of
Bible school (this was diagnosis time).

For the closing program that year my
sister-in-law came down to the hospital
to stay with Jared so Mike and I could
both attend Kirsten's program. Thank
you aunt Linda!!!

Wow, how very long ago..........but also
I can remember it as if it were yesterday.

Maybe this has also been a reason for my
stress this past week. Not the entire
reason. Because last week was crazy.

Instead of being stressed though I wish I
could have recognized it and moved on.
Well, I did realize it but it was so out
of control last week that I could not
get myself straightened out.

Thank you God for hanging with me when the
going was tough. Next time, I need to give
it all to God to handle and not "fret" so
much. Remind me of this next time.

It is funny because mid week my mom said to
me, "Did you say your daily prayer?" And I
said, "No, I am too busy complaining" HHMMMMM,
maybe there is something to that.

Well, have a great week everyone. I am
definitely going to have a great week,
PROMISE. No matter what.............

Connie

Friday, July 28, 2006

Went to house with a roofer and guess
what? He was not a "roof inspector"
so it was a no go.

Found a roof inspector but was $350.00
for us to pay..........I think not!!!

Know nothing more today then we knew
yesterday.

Settlement in 7 days and the deal is
still a mess.

Realtor offering to "fix/repair" roof
at cost. Problem is........fix according
to who's definition of "fixed".

Getting an estimate for repair then
Realtor decides if they want to pay.
If they do we may buy, if fixed......
"our way".

I am too stressed out about all this.
It is sucking all my energy.

Today Mike called me at work and told
me to call the Realtor and tell him
what we want. I called first and in
no uncertian terms said we will NOT
pay another dime for an inspection.

Then he told me I could call a roofer
to get an estimate for repairs. Which
I then was not very nice. I told him
I would not do that. That I was working
and this thing is driving me crazy. I
am done doing the leg work. I can not
take much more of this!! Told him to
do it. He said "OK"

Have not heard anything from him. I know
I was nasty. But (excuse me) damn it, I
can not deal with this anymore.

Yes, I want the house. I want it fixed
right first though. I don't want to spend
anymore time or energy calling people to
set up appointments. I can not do it.

Enough is enough and I am at my wits end
with it. I am starting to feel like deal
or no deal, I don't give a crap. Buy it
or don't buy it, I don't care anymore.

Work has been so busy that I can not think
straight then to deal with these people
on top of it is driving me crazy. I need
the end of this problem to come to a hault
and it needs to be what it will be, and
then I will move on from there.

Maybe it was not meant to be. Whatever, it
does not matter. I want my life back to
normal. All week this week has been nuts
at work with work things then dealing with
the house issue on top of it has been too
much for me.

This is why I need to go night shift and get
out of this position soon. It looks like
the beginnig of September I will start my
new position at work. I can not wait....

The house deal will end soon too. Our settlement
on the house we are buying is to be one week
from now. So by this time next week I will
have signed the papers to buy the house or
have decided to move on. this can not
happen quick enough for me.

Everyday is a new struggle and dealing with
the same "crap". I want it all to go away.

OK, I am done venting. I just can not
stinken stand it anymore.

Could things be worse? Of course they
could be. Do I recognize this? Yes!
So here I am bitching about stress at
work and house buying woes and others
have much more important things to worry
about............I know shut up!!!

I am done. thank you for listening.

Connie

Friday, July 28, 2006

To buy or not to buy......that is the question.
House deal driving us crazy!!!!

Inspector going to house this morning

OPTION 1
Says the roof is "sound"
we agree or disagree
No warrenty provided
buy or not to buy?
(agreement says "warrenty provided")

OPTION 2
Says the roof is sound
We agree or disagree
Warrenty provided (which isn't likely)
Have to buy!

OPTION 3
Roof is "junk"
Do not buy!!!!

OPTION 4
Roof is "junk"
They fix to our satisfaction
No warrenty
We buy

OPTION 5
Roof is "junk"
They offer to fix
But no warrenty
We refuse to buy

So this is our present options, we shall see
how things pan out today.

Wish us luck!!!

Tuesday, July 25, 2006

We are back from the beach. The weather was not
the best but also not the worst. It was in the high
70's to low 80's. No gleaming sunshiny days
but only minimal rain one day and we were at a water
park so the rain was insignificant.

The kids had a blast in the ocean. The waves were
awesome. With the tropic storms and things coming
up the coast the water was rough. Which made it
fun for the kids but scary for us. The riptide
(under pull) was strong. But the kids used their heads
and went in far enough to be submerged in water but not
where they could not touch.

The water was on the cool side but once you stood
in it a few minutes you became immune to it and could
get in and enjoy it. We dug for sand crabs but guess
what? Not a single sand crab to be found!! The
kids had fun chasing the waves and running on the
beach. They were so much fun to watch.

Our last full day we took them to the Jolly Rogers
water park. Which was more then fun. They have like
19 water slides, a pool and a bunch of stuff the kids
could play on.

Our scariest slide was the Stealth. It was a 45 foot
half pipe. You dropped 45 foot almost straight down
and then went up the other side and back down. It
was a blast. Took your breath away at first. Of
course us girls let out those blood curling screams.
The boys were much quieter then us when we went.
It was the greatest rush though.

Then we went into the "black hole". It is a water
slide completely enclosed that is painted black
inside and the entire way down is pitch black.
You are slipping and sliding around turns and have
no idea what direction you are going or what is ahead
of you. I was surprised the kids loved it as
much as Mike and I.

So we did have a great time. We ended up coming home
late Sunday night. We left the beach around 10:30pm
and the kids slept most of the ride home. Well
Jared was out within 10 minutes in the car and Kirsten
hung on till about 12 or so till she went out. We
arrived home around 3:30a.m. The ride home was great.
No awake kids so no fighting in the car.

I hate driving around Wilmington. Always get
misplaced. Since we missed the attractions
around Wilmington the first time we went through it
due to the darkness we decided to do it again to get
a better look. Just kidding. My way of saying we
got misplaced....ok, ok ,ok we were actually lost.
Darn it I hate getting lost. But at least we eventually
found our way. Coming home that way always gets me.
I told Mike from now on when we go we come home Route
50 through Baltimore. Oh well, could have been worse.

The kids started bible school last night. they
met a lot of new kids plus the ones they already
knew. They both had a lot of fun and look forward to
it all week. At 7:45pm on Friday they will have their
closing program. So if you (grandparents
or whoever) are interested in going just let me know.

Back to work for us today.

We ran into a glitch now with the house we are
buying. We are not happy about the job they did on
the roof. Hopefully we can get it worked out and
settle in 2 weeks. We shall see.

Have a great week. Thank you for stopping by.

Connie

Thursday, July 20, 2006

UPDATE: Our house has a SOLD sign on it. YAHOO!!!!!!!!

First off we are heading to the beach tomorrow morning.
Spending a long weekend there. The kids requests and
demands are easy to full fill. Jared and Kirsten wants
to swim in the Ocean, build sandcastles, dig
for crabs and dig a big hole in the sand. I can easily
do all that. I can not wait to go. The kids are great
to take to the beach, well, minus the car ride there
that is.

Secondly, I am changing jobs. Same employer but
different position. I have decided to change jobs
for a couple of reasons................... Right now I do a job I love.
I am the Staff Development Coordinator.
It is a rewarding job and I love the people that I
work with. But I am salaried and very busy. I have
been working long hours and still fretting about
not getting it all done.

I have decided that I want to do less worrying about
work and put more time where my priorities are.
That is with my family and having fun. I applied
for a night shift nursing supervisor position where
I work and was awarded the position. I will be starting
sometime in the next month. Now, I have not worked
night shift for years full time so it will be a major
switch for me. But I really think this will be a
good thing. I can be home with my kids when they
are off school so there will be no need for a baby
sitter. when my kids have school programs and things
going on I can be there and not have to worry about
what is going on at work and if I will be able to get
away to attend. Plus I will no longer be in a salaried
position. I really think this will be a great move. The
kids are happy for me and Mike is supportive to
whatever I want to decide to do. No more on call for
a week at a time.

So even though I love my job I need something that
is more of an 8 hour job and then the rest of the time
can be spent with my family having fun and not worrying
about what I did not get done and so forth. So it is
a scary move but I am looking forward to it.

Sometimes we have to look at our priorities. Hands
down, my family always comes out on top of my list!!!
So wish me luck on the new change.

Everyone have a great weekend.

Connie

Monday, July 17, 2006

The summer seems to be just flying by. I can hardly
believe it is the middle of July already. This
weekend was hot (in the 90's) and sunny. We spent
our weekend in the pool where it was cool and refreshing.

Kirsten hates the water in her nose so she has become
an expert using the "nose pincher"

The kids just played and played. Here is a picture with
Kirsten playing house. She took her baby swimming with her.

Last night Jared and Kirsten spent the night at their
friend's house (the McIllhenny's) they must have done
OK because we did not receive a phone call to pick
anyone up. It was Paul's birthday and the kids were
going to sleep out in tents if it was not to hot. So
we shall see how it went when they come home today.
I am sure they had a blast.

Saturday night we went to a 50th wedding anniversary
of a neighbor of ours. It was fun. The kids
(especially Jared) was dancing and just loving it
up. They were the only "little" kids there. They
were dancing and having a blast until Kirsten wanted
to slow dance with Jared and he did not want
to.........that ended in a little physical altercation
between them that involved pushing and hitting.
Not a good thing. But besides that they were
perfect angels.

We will find out this week if our house being
sold goes through or not. The buyers ran into a
glitch and are trying to work it out. We are hopeful
it pans out and our house is definitely sold.
If not, well worse case scenario is our house goes
back on the market. Will know for sure by Friday.

It is hard to believe that we will be moving in less
then 3 weeks now. I have to getting packing one
of these days. I am sure I will be quite busy
the next few weeks.

We are leaving for Ocean City Maryland on Friday morning.
We can hardly wait. The kids are so excited. We
are taking a 4 day weekend. Poor Buddy will be
staying at the kennel during our vacation. I
worry more about him. He has only ever been in
a kennel one time and it was not good. He was
depressed and did not eat the entire time. Thank
goodness it is only a 4 night stay for him this time.
My niece who normally would stay here and watch him
is also going on vacation then so we decided to
kennel him so as to not put anyone out by having them
come to our house to watch him. Hope he does OK.

Hope everyone has a great week. Please continue
to keep all the children fighting NB in your prayers.

Connie

Sunday, July 9, 2006 7:49 AM CDT

I do not know why I feel like I have to put this in
writing but I do......

Did you ever notice that God works in mysterious ways?
Even when things go crazy and the outcome is not what
you want it to be, there is a reason it happened the way
it did. At the time you can not always see the
rainbow and the end of the storm but we always have to
keep in mind that things will work out. The end
result may not be what we planned but we can adjust thing
to adapt to life's twists and turns along the way.

I can say that I feel like the luckiest lady
on earth. I have a husband I adore and 2 beautiful
children that are great. I thank God everyday for being
blessed with my family. Even as I am disciplining my
kids I am thankful I have them to discipline. Even
when Mike and I are disagreeing I am thankful I have
him by my side. I would not change a thing if I could.

That being said I think sometimes we need to stop and
evaluate life. We need to be thankful for what we have,
live life to the fullest and live everyday as if
it were our last. Do we always do that? No. We
are all blessed and our blessing comes in different ways.
Sometimes a blessing is overlooked till we can sit
back and really evaluate the situation. I do
not know why things happen the way they do but I
do know that life is great. We need to appreciate every
aspect of our lives and live life the way God would
want us to. Thank you God for that eye opening thought.

Maybe the approaching anniversary of Jared's diagnosis
has sparked this revelation in me. July 15th marks
a great milestone and a sad remembrance. That
is the day in 2003 that Jared was dx with Neuroblastoma.
It is the day that our entire life changed. Life
will never ever be the same again.

That is also the day in 2004 when my dear friend
Kim Mease lost her Michaela to Neuroblastoma.
It is a date that will be engraved in my thoughts
forever and ever. I am thankful that I can say Jared
is celebrating his 3rd year anniversary since
diagnosis and is still NED (no evidence of
disease). Thank you God. I am sad though when I
think of Michaela and all the other children who
are no longer battling but are instead in heaven waiting
for the day that they are reunited with their family.

God please continue to watch over us and all the
families battling NB, those who are NED and those
parents who have lost a child. That is a situation
that I can not imagine. Not that I can't, I do not
want to image it. We need to live life one day at
a time and be thankful for all that we have. And I AM!!!!

You can visit Michaels's caringbridge page with the
direct link below and leave the Mease family a message
to let them know we are all thinking of them.

God bless.

Jared and Kirsten on our hike to flat rock.

Wednesday, July 5, 2006

We had a great 4th of July. Mike and I took the kids
hiking up Tumbling Run yesterday morning. I tell
you those kids are excellent little hikers, especially
Kirsten. They were both little troopers and did
an excellent job.

This is an excellent time to go since we had all this
rain the waterfalls are flowing like crazy. This is
the first time in years it has been like this when
we were up there. The kids loved getting in the
water and getting all wet. There was even a spot on
the falls where the rock was big and smooth. Mike
and the kids slid down the rock like it was a water slide.
Of course, when the kids went Mike caught them at
the bottom to keep them from going down more falls
then it was safe to go down and to prevent them from
hurting themselves. They loved it.

On the way up they kept talking about waterfalls. Kirsten
would say,"What I like most about water is water
falls." Then Jared would say, "What I like most about water
falls is they are so beautiful." It was funny.

Here is a picture of Mike and Jared posing on top
of the mountain. Awesome view.

After we were done hiking we went to Mike's parents
for a picnic. They kids had fun playing with
cousin Nicholas and everyone else. They swam and
played water sprinkler twister. It was to cool.

So we had a great last few days. Of course, my legs
were a little sore yesterday from hiking Tumbling
Run 2 days prior with Mike but I am sure with all
the activity yesterday I will work out of my soreness.
The fun and view was well worth a little soreness
in the old legs. I am not getting any younger.....

Have a great week.

Connie

Monday, July 3, 2006

We have had a busy but fun weekend. Friday night we
went to the square in Carlisle and listened to a
band (Cheap Sneakers) which was part of the holiday
weekend celebration. The band is great.

Saturday night we went to the fireworks. I
am not sure what was more fun for the kids....running
up and down the hill or watching the fireworks.
Those kids are crazy. They were so silly. They
loved running until Jared did an endo which ended in
a face plant on the ground. But he got up and said,
"I am OK, no blood just a boo boo on my knee" then
off again he went.

We actually had a relaxing weekend just hanging out
and swimming. Saturday Kirsten had a friend over all
day. Those kids had a blast together.

Last evening the kids spent the night at my moms and
Mike and I went hiking up Tumbling Run. We did not
know if we would get poured on or not. It did rain
but not hard. It was so cool. I love that hike. Here
is a picture taken up on top. We ran into 2 guys up
there who we had take our picture.

We love to hike. The view from the top is awesome.

Tomorrow we are heading to Mike's parents for a
4th of July picnic. I work today but then off tomorrow.
Have a great 4th of July everyone.

Connie

Friday, June 30, 2006

This week has been busy. First off we are happy we have a
new roof on the new house we are buying. That really
makes us happy.

Last night we took the kids for a walk in the park over
beside our new house. They loved it. They ate black
raspberries along the way that were growing along the
path. There was some flooding by the creek where we were.
Our shoes were soaking wet when we were done. Well
everyone except Kirsten was wet. Dad carried her through
the standing water because she did not want to get
her sneakers all wet.

Jared loved all the BIG fishing worms we found. He and
daddy were holding them. Mike was freaking Kirsten
out by pretending to put it in her hair. Which made
her scream. (Not nice teasing her like that..........)
It was funny. But I can say that because he did
not do it to me. I like to look at them but not feel
those slimy things.

The kids should be in their glory the starting today.
Mike has off work starting today and does not go back
to work until July 13, 2006. That means the kids can
sleep in, stay up late and just have fun with dad. They
are planning play dates and all kinds of things. Should be
a great time for them. Yes, I am working. But that is
OK. I have vacation the end of July when we head to the
shore for a long weekend.

Hope everyone has a great 4th of July weekend.

Sign the guest book so we know you were visiting.
We love to read the entries.

Connie

Wednesday, June 28, 2006

OK, I know we need rain but I am soon going to have to start
singing the rain rain go away song. We have received so
much rain this week that there is some flooding and fear of
more to come. Enough is enough. Last night our sub pump in
our basement was running almost continuous. But glad
it was running. No water in the basement for us.
Both our neighbors on both sides had water in their
basements. Oh what a mess for them.

I am adding some sunshine ot Jared's page in hopes
that it works to really bring us some. Just kidding
but wishful thinking.

The kids had too much fun in the rain. It was a
warm rain. Here are some pics of them playing in it.

After they were done playing in the water running down
the street then they jumped in the pool and went
swimming. They had a blast. Then off to the warm
shower for them.

I am asking for some prayers for a dear little girl
we met at Hershey on our first day in the Oncology clinic.
Her name is Rhiannah. She was dx with Primitive
Neuroectodermal Tumor (stage 3) This is a type of Ewings
Sarcoma. She has been off treatment for a while like
us. However, yesterday Kim (her mom) e-mailed me and
said they saw something on the CT scan but felt nothing
on palpation. The doctors are optimistic but
we as parents know how scary that can be. They are doing
an MRI in July to double check to see what it is. Please
keep them in your prayers. Rhiannah has a web page.
You can copy and paste the link to get there. It is
http://mywebpages.comcast.net/jkhepfer/rhiannah.html
Thank you for your added prayers for her.

Yesterday a little boy, Benny, gained his angel wings
and went off to heaven. Benny was battling NB.
What a sweet little guy. Please say an extra prayer
for his family for strength and courage to get
through these next few rough weeks or so.

Keeping all the families battling cancer in my prayers.

Connie

Monday, June 26, 2006

We had a rainy weekend. The kids had fun though. On Friday
night they spent the night with Grammy K. Sunday, Mike's
sister (Tina) and her son (Nicholas) came over and Mike,
Tina, Nicholas, Kirsten and Jared went to the movies to see
Garfield. It was not the adults favorite movie but
the kids liked it. So I guess that is all that matters.

The kids have so much fun with Nicholas. They were
having a ball here playing and carrying on after the
movie here at the house. I worked the weekend so I missed the
movie, which was OK. Glad they were able to get together
and have fun. Well gotta go get ready for work this morning.

Thank you for checking in. Leave us a message so we know you
were here to visit.

Friday, June 23, 2006

Great news to share...................

We bought a new house and we settle on August 4th now for sure.
We are so excited about moving back to Boiling Springs and
South Middleton school district.

Our present house was listed on Tuesday of this week and
today we sold it!!!! So our house sold in 4 days of being
listed. That is awesome. We are so so happy. We are
planning on the settlement of our house to our buyers
being on August 23.

I am so glad that things are working out well. We
are so so lucky.

Have a great weekend. I work this weekend and that
is a good thing because I am so behind and need to catch
up. Usually on the weekends things are quieter and I
can catch up. So here is to a productive
weekend at work.....

Have a great weekend.

Connie

Thursday, June 22, 2006

OK, now things make sense........ Jared has been having
great fluctuation in his mood. He has been grumpy and
throwing major temper tantrums for the past 2 weeks. I
mean bad ones that last about 20-30 minutes with him
screaming with no relief in sight. Give me strength.......

Yesterday morning was the final straw. After he got
out of the shower and then sat upstairs screaming
at me and fussing for a half hour for no reason. Acting
like a control freak about any and everything. I finally
decided even though he has no temp and is not complaining
of anything to make him a doctors appointment to get
his ears checked because this has been going on for about 2
weeks and finally I can not deal with it anymore. well,
lo and behold I was right the boy has double ear infections.
no wonder he was so miserable. I probably would be too.

It is amazing that with an ear infection he has
such behavioral changes. We have noticed this in the
past. Sometimes it is hard to tell though if it is an
infection or just behavioral issues. But when the behavior
is so bad and continues I know it has to be the ears and I
was right. Oh thank god that is what it was. I hope after
a day or two of antibiotics it immproves. Poor thing
to be so miserable too. So here is to the ears getting
better and Jared being happier and not so grumpy.

Wednesday, June 21, 2006

Last night the kids had a play date with their friends
down the street. They too have a pool but their pool has
a diving board. Jared walked up to the dive a few times
to jump off then backed out. Finally he decided he was
going to do it and he loved it so much he kept doing it.
I bet he jumped off the dive 50 times last night. This is a
big accomplishment for Jared. First time he ever did this.
He was so proud of himself.

Jared preparing to jump

Jared flying in the air

We had a lot of fun at the McIllhenny's last
night swimming and playing. They invited us back
tonight but we shall see what we end up doing. Of course,
Jared wants to go so he can jump off the dive and Kirsten
just wants to go to play with Meghan and Laura.

Working hard at trying to get an estimate on replacing
the roof on the house we are buying. Hopefully we will get
this completed today and make an offer to the sellers. Of
course, we want them to replace it prior to settlement.
We shall see what happens.

Have a great week everyone.

Connie

Monday, June 19, 2006

Happy Father's Day Mike!!!

Yesterday morning we made breakfast for Mike for Father's
Day. The kids decided what we should have. They decided
on "dippy" eggs, hash brown potatoes,sausage and
toast. Then we got up and made it and surprised daddy with
it. He loved it.

This is a picture of Mike and the kids after opening up
the gift they got him. It was an Eagles sweatshirt and
t-shirt. They know how daddy loves the Eagles.

This weekend was beautiful. Mike and I spent a lot of time
working on the house (painting, planting flowers and
so forth). The kids played a lot. They swam and were
in the slip and slide.

This is Kirsten in the slip and slide

Saturday night I took the kids to see the movie CARS. We
enjoyed it.....even me.

Well, our house officially goes on the market today. Hopefully
we get an offer and sell it soon. Wish us luck.

We ended up making $513.50 for CNCF from the ham sandwich
sale. Thank you all again who helped sell, collect money,
make and deliver sandwiches. We do so appreciate it.

Have a great week.

Connie

Thursday, June 15, 2006

First off, I want to thank everyone who helped with the
ham sandwich sale. When we are done making sandwiches
we will have made 360 sandwiches. So between selling
sandwiches and the donations of money from people we ended
up making a little over $500.00 for Lunch for Life. I
will post the exact amount when we are completely done
tomorrow. That is fantastic.

I want to thank Julie, Tracey, Missy, Linda, Jane, Mike,
Chris and Lori who helped sell and collect money for
sandwiches. I want to thank Julie, Tracey, Lisa, Bill,
Johnie, Joanne and Cynthia who helped make sandwiches
yesterday. I was unable to help because of my work
schedule and I really appreciate all you all have done.
Tonight is our last night of putting sandwiches together
to deliver. You all are great and helped this sale be
a great success and again I THANK YOU!!!!!

I also wanted to share some pictures of my silly little
ones. We were trying to capture a picture of them jumping
in the pool. It was hard to get the picture at the right
moment but the kids had fun jumping in, so it
did not matter.

This is both the kids preparing to jump

This is Kirsten in route to the pool while Jared stands
back and watches

Here is Jared during his jump

Both kids splashing in the water

I have a 3 day weekend coming up so I am sure I will be
quite busy here at home. Have a great weekend.

Connie

Jared posing with his birthday cake

Monday, June 12, 2006

Yesterday was Jared's birthday party. He had 14 friends over.
They had a great time. Jared was a little bummed though
because his best friend called yesterday morning and
was unable to come. So we will have to plan a play date
for them this week.

Even though it was sunny it was breezy. Most of
the kids went swimming yesterday, except Jared. He
was in and right back out. Too cold for his liking.
Which I do not blame him. I was not in either.

Overall, it was a fun day. All the kids had fun. It
was a busy day though.

Here is a picture of Jared posing with the food lab Kirsten
had given him. You make gummy food to eat. We made gummy
fish last night. It was pineapple favored, not Jared's
favorite taste. Next time we will make a different flavor.

This weekend flew by. With the birthday party and
getting our house ready to list next week we have been
very busy with painting and what not. Just have a few things
to do to improve things a little. But with working full time
it is just harder to get it done. I need a few days off
work but it is so busy at work that I can not just take off
right now. So, slowly but surely it will get done. I will
be glad when we get everything done and can relax a little.
Which will be soon.

Have a great week.

Connie

Friday, June 9, 2006

Last night we went to Red Robin to celebrate Jared's
birthday. His favorite part was them singing Happy
Birthday to him. Besides that we had an evening at
home hanging out and playing. Sunday is the big
Birthday "bash" for him. He is so looking forward
to all his friends coming over to celebrate with him.

NEWS UPDATE:::::::::::::::

This picture was in the local paper, much to our surprise.
They had an event at school and Kirsten and her
friend made the front page of the Sentinel paper.
She loved the publicity!!! It is to cute. You can
tell she was laughing and having lots of fun. We
teased her that we all needed her autograph.
(Ignore the name, people always misspell her
name as Kristen instead of Kirsten. Oh well......)

Have a great weekend. I know we will have a great
weekend with the birthday celebration.

Connie

Wednesday, June 7, 2006

Tomorrow is Jared's 5th birthday. Happy birthday to my little guy. It is hard to believe he is 5 already.

I decided to share annual pictures with everyone for Jared's birthday.

This was taken right after Jared's birth on June 8, 2001.

My how Jared has grown up and become such an independant little guy. Please stop by the guestbook and wish Jared a Happy Birthday.

We are having a birthday party this weekend on Sunday with lots of kids invited and adults too. Should be a blast.

Connie

Monday, June 5, 2006

Saturday night Jared started with a fever (101.6 axillary)
and malaise. He kept saying he did not want to walk and
he actually was walking funny when he did walk. So here I am
thinking....OK, what is going on here??????

I hate to even go there but any symptoms puts my brain
into overdrive. Especially the not wanting to walk part.
He said though that his legs to do NOT hurt but he just would
not walk. At home Saturday night and Sunday morning he
actually slid himself around on his butt on the floor at
times to change places. But with the fever he may just be
tired and not WANT to walk.

Sunday morning he again had a temperature and was
not himself but by last night he was fever free and running
around having fun like the Jared I know. So maybe it
was a 24 hour thing? Who knows?

Actually my dad and Jane stopped by yesterday and Jane
said her grandson had the same symptoms the night
before (temp, headache and his legs hurting). That was
really reassuring since he does not have NB. OK, it is
probably a virus thing and not anything to do with NB.
What a relief. So we shall see what happens today.

We have been looking to move for the past couple of years
but when Jared was diagnosed it threw a glitch into things.
Well Thursday a house went on the market and I am proud
to say that as of yesterday it officially became our house.

We will be moving to Boiling Springs in August. We are so
glad to have found this house. It is only about 5 miles
from our present house but it is a different school district.
The house is within walking distance to the school when the
kids are in the middle and high school. Our new house
actually borders a 40 acre lot that the township just
purchased to turn into park. The ball fields for the school
are right there. Which means too that the land will not be
developed into houses around us. We are so excited.

If any of you are familiar with Boiling Springs, it is a
quaint little town. It has a lake where you can fish and
feed the ducks, a community pool and all within walking distance.
Mike and I both went to Boiling Springs when we
were in school.

So the next few weeks will be busy preparing to sell
our present home. We hope to sell our house before we settle
on the new one in August. I have no idea how I will keep
our house in order to show with 2 kids. I asked the kids
if they could help me keep the place in order and cleaned up.
They said they could, so we shall see.

The kids did not want to move at first. But once we
showed the house to them then they were all for moving.
Now Kirsten goes between being happy and sad. Happy to move
but sad to miss her friends and scared to make new ones. It
will be a rough 2 months. I know once we move and get settled
and Kirsten and Jared start school they will meet new
friends and be fine but the anxiety of leaving old friends it
going to be difficult, especially for Kirsten.

I am going to get them in some activities hopefully
this summer to get them to meet some people. And see if I
can find someone with kids their age so hopefully the
transition goes well. Oh boy, what a challenge.

Have a great week.

Connie

Thursday, June 1, 2006

This week has continued to be hot and beautiful. The kids want
to spend all evening in the pool.

If they are not in the pool they are
beside it playing with their toys.

The water has warmed up a bit to 76 degrees but it is still cool.

Last night we had wings for supper. Jared loves wings. Here
is a picture of him with Bar B Q suace all over his face. He
was in his glory. He looked like this even after using probably
10 napkins. Too cute.

Just having fun in the sun.

Connie

Tuesday, May 30, 2006

We had a beautiful Memorial Day weekend. The weather was
perfect. It could not have been any nicer. I love summer.
We just hung out at home and had fun in the sun. We bought
the kids a new sprinkler and they loved it. Here is a
picture of them running through it.

The kids enjoyed swimming in the pool too. Mike and I were in
but not for long. The water temperature was only 68
degrees. That is pretty cold. But with it being so hot
outside it was refreshing. I would get in and cool off and
then right back out. The kids enjoyed it more then that. They
must be nuts. Just kidding. I am hoping for some warm days
and with the solar cover in place it should warm up quick.

Kirsten is our little fish. She just jumps in and goes. Jared
is another story. He forgets how to swim from last year. He
needs to gain his confidence back, which I am sure he
will before to long.

Kirsten walked in the Memorial Day parade yesterday with
her school. See the picture above. She loves that kind of
stuff. Jared stayed home with daddy. He did not want to go.

Everyone have a great week. Gotta go get ready for
work this morning.

Connie

Saturday, May 27, 2006

In following up with the oncologist we have now found out the
immunization sheet they gave us says varivax (chicken pox vaccine)
not recommended post transplant and actually he was to have it
2 years post transplant. Which for Jared was February 2006.
Oh shoot, to late for this incident. So, if we make it through
this incident with out getting the pox then we are definitely going
to get the vaccine ASAP. He said if he does get the pox then have
the doctor put him on Acyclovair. So we shall wait and see what
happens. So far so good.

Our dog (Buddy) has been intermittently limping and
having trouble getting around. We at first thought it was arthritis.
Then we started thinking Lyme's disease. Buddy is 6 years old.
Mike took him to the vets yesterday and he does have Lyme's
disease. He is now on antibiotics and pain meds for 30 days
then we retest to see if it is resolved. Poor Buddy. So we
hope all goes well for him. So far so good. Of course, that dog
is way to smart. We tried mixing his pills (4) in wet food. No
such luck. He would not eat it. Then I got smart and wrapped it
in cheese and bologna and lo and behold he ate it. Guess
I better stock up on bologna the next month. Hey whatever it takes.

Kirsten is back in school now. Their last day has been moved from
June 8th to June 15th due to the teachers strike. If they do
not resolve their issues then they plan to strike at the
beginning of the next school year. We shall have to wait and see.

Today was a nice day. We went down to Mike's parent's house
for a picnic for his dad's 72nd birthday. The kids
had a great time playing with cousin Nicholas. Happy
Birthday Paul.

from left to right: Linda (Mike's sister), (her husband)Tom,
Mike, Kirsten and (Mike's dad)Paul

The ham sandwich sale I am doing for Lunch for life is underway and
going well. We are selling sandwiches till June 5th. Then we will
be busy making the sandwiches for delivery. I thank all of you who
bought and are selling sandwiches and all of you who have
volunteered to help make and deliver them. Greatly appreciated.

I hope everyone has a great Memorial Day weekend. Please
remember our troops fighting for our freedom because freedom
doesn't come free. Thank you!!!

Connie

Wednesday, May 24, 2006

OK vacation is officially over and back to the real world. I want
to go back on vacation. That is not really an option though,
now is it? NO.

Last week Jared really missed his best bud (Josh)at the sitters because
his sister had the chicken pox
so they were not there all week. Well Monday they returned and Jared
was in heaven to play with Josh again. Well yesterday, they were not
there again because now Josh has the chicken pox!!!!

OK, this will be the true test. How good is Jared's immune system?
We are just waiting for him to get them. He was immunized against
the chicken pox prior to diagnosis but of course with the transplant
all that immunization was completely wiped out. Varivax is not an
immunization that was recommended for him post transplant per the
oncologist. So to make a long story short that means no immunity to
it. So we shall see if he ends up getting it or not.

Jared is preparing for his birthday next month. He has his party
all planned and who he is inviting. He will be 5 on June 8th and his
party will be on June 10th. We haven't decided yet what special thing
we are going to do. He wants a trampoline for his birthday. Not
sure about that one yet. Still debating on it..........

Kirsten is still not in school. The teachers are still on strike.
It is not looking good either. We shall have to wait and see
what happens.

Well, have a great week and keep your fingers crossed for no
chicken pox here.

Connie

Monday, May 22, 2006

Before I say anything about vacation I must say that the hugs and kisses
we received from the kids on our return was THE BEST!!!!!! I know
they missed us as much as we missed them. I also want to thank our
moms and aunt Linda for all their help while we were gone. We do so
appreciate it. The kids had a great time too while we were gone.

They had loads of excitement. First off it started that on the 13th
when they went to Baltimore they were all exposed to head lice. Thank
goodness no one actually caught it. Boy aunt Linda these things
always happen to you. Sorry.......

The teachers at Kirsten's school went on strike last week too. So
no school since Wednesday and I have no idea when they will be
returning to school. We will have to wait and see.

Kirsten sprained her ankle last week but is doing fine now.

We are finally settling back in from vacation and Saturday night
the kids had 3 friends spend the night (Meghan, Laura and Paul). They
had a blast. We finally got them all in bed at 11:15pm. They all had
a big sleep over in the living room after a pillow fight of course.

Now for our vacation. It was alot of fun. It was all inclusive. So,
we had ate a lot of food and drank a lot of things. Rum and coke was
our favorite it seemed. And the frozen drinks were a hit too.
We drank enough of that the past week to last us a year or so. But
what are you to do? I guess exactly what we did. Had fun
fun fun!!!!

The first 3 days were rainy. Yuck!!!! But after that it was
nothing but blue skies, blue water, sunshine and again more drinks.
We took a catamaran to Saona Island which is south of the Dominican
Republic island. It was so cool. The catamaran took us over (partying
and dancing all the way) then spent the day on the island swimming,
eating, again more drinking and soaking up the sun then we took
a speed boat back to Dominican Republic. It was so much fun
we actually ended up doing this 2 days. On the way back we stopped
on a sand barge to swim, hang out and you guessed it, drink more rum
and cokes and we actually found a star fish. It was cool.

One morning we went horse back riding through the jungle and then along
the beach. For those of you that know how to horse back ride, you can
appreciate this. Mike and I have never road a horse before. It
was a lot of fun but lets just say I was sore for 2 days or so. Those
horses would gallop fast along the water at the beach. It was scary
at first but cool. I loved it. It was so neat to be on a horse
galloping on the beach line with the wind blowing through our hair.
Awesome is all I can say.

We met so many people there. People from Harrisburg, Enola, Gettysburg
and so forth. Our favorite couple
was from Tower City (above Harrisburg). They were on
their last yahoo before she is off to Iraq on the 10th. Norma we
will be thinking of you and Bob. It was so great meeting these folks.
We had a lot of fun with them.

The beaches were white, the water was blue and it was a beautiful place.
We stayed at Sunscape the beach. It had a pool like the Nile River.
It was almost the entire length of the resort. We were more beach people
then pool people but it was nice.

On Friday when we got home we received the biggest and best hugs and
kisses from the kids that you can imagine. It was a fantastic
reunion. Oh how we missed them. And oh how good it felt to back home
with them to hug and kiss. While we were gone we called 1 time a day
the first few days then after that we called 2-3 times a day to just
chat and say hello. They loved it and so did we.

The main language was Spanish. We do not know spanish so the
language barrier with the staff was the main thing we encountered.
Especially with the maid service. Food servers and bar tenders
knew some english which made communication a little easier.

I know it sounds like all we did was drink but .....not everyday.
It was just a lot of fun.

I am going to add some more pictures in the photo album because that
place was just so beautiful.

I could go on forever but I will stop. Just know it was beautiful
and we had one fantastic time. Loved it!!!

Connie

Saturday, May 20, 2006

Right now all I have time to say is we are back and we had a fantastic
time. Vacation was wonderful but being back home with our kids
is even more wonderful. Today is the May Fair at school and I have
3 hours to bake and decorate a cake so I must go for now, especially
since I still need to go buy the ingredients to make it. Update
later.

Connie

Thursday, May 11, 2006

Well, today is the day. After work we are leaving for vacation.
We are going to Baltimore to spend the night and tomorrow morning
at 8 am our flight leaves for the Dominican Republic (Punta Cana).

I am so ready to go and have some fun time with just Mike and I.
We certainly need it. And deserve it. But boy I am sure I will
miss the kids.

I know the kids will have fun while we are gone. We have their
entire schedule mapped out for them. The grandparents will be
watching them. With the exception of Saturday when Aunt Linda
takes them on their Baltimore trip with Girl Scouts to the
Aquarium and Science Center.

We have always had a ritual of Mike and I both tucking them
in bed at night. Last night as I tucked them in bed (at
10pm too when normally they go to bed at 8 on a school night).
All I kept thinking was this is the last night I will tuck
them in till the 19th. It was sad. I honestly felt as if I
could've cried.

We talked about what they were going to do, who was going to
watch them and how much fun they were going to have while we
were gone. They seem OK. Jared seemed perfectly fine.
Kirsten was OK but she is my main worry. Oh, I pray they
have a great time and our daily phone calls are enough, for both
of us (kids and mike and I).

I am going to be putting things (letters/treats) in the mail
for them daily starting today. That way what I mail today will
get to them tomorrow. So it will be a nice surprise for them to
get something from us immediately. I know once we get to our
destination we may beat our mail home. We shall see.......

Well off for some fun and sun for us. And fun for the kids too.
We promised to shower them with souvenirs when we get home.
They are thrilled about that. I am taking a collapsible duffel
bag in my suitcase just in case I need it to bring goodies home in.

I will miss my NB list while I am gone and wanted to let everyone
know I think of you often and all you kids fighting are in my prayers.

Thank you Grammy, Grammy and Linda for all the support and help
while we are away. We certainly do appreciate all of you like
you would not believe.

Happy Mother's Day MOM!!!! Happy mother's day to all the
moms out there. May you all have a day filled with love
and hope..

Tuesday, May 9, 2006

On Sunday Mike's sister ended up coming up in the morning and
then her, Nicholas and us all went for a hike up at White rock. The
kids had a blast. We packed a lunch and ate when we got to the top.
It was such a beautiful day that day. Nick loved it. He said, "Mom
we have to do this again, this is fun." So we vowed to go
again sometime. The kids had a blast.

Me posing at the base of the rock bed

This is Mike in a huge tree that is up there and some of the branches
actually grew into the rock. He had to climb up there by climbing
the rock and then walking out the tree branch. This picture does
not even do the tree justice. It is huge.

Sunday afternoon I received a call from the principal from
Kirsten's school. OK, no one likes to hear the Principal's voice
and name on the other end of the phone, but this was a good
thing. He had called to tell us Kirsten had been chosen by
her teacher for the month of April as the Learner to Leader. He
went on to tell me how Mrs. Anderson said she is kind, always
prepared, considerate, honest, friendly, helpful to other
students and so forth......It was a nice surprise to hear. So
good for Kirsten!!! She is such a little stinker anyways.

On Sunday I had to open my Mother's Day gift for the kids. They
had my gift here and wrapped and since I will not be here on Mother's
Day she wanted me to open it Sunday. The original plan was to
open it on Thursday but Kirsten could not wait any longer so she
insisted I do it then. It was a beautiful necklace that had
a heart and said MOM. I love it. Of course there were hugs and
kisses involved too. Thank you to my mom for helping the kids get
me my necklace, good choice, I love it.

Well we are leaving for vacation (Dominican Republic) in 2
days now. Come on Thursday!!!!!! I am mentally ready to go.
Not packed or prepared but mentally ready. I will be busy this
week getting ready. Maybe tonight after work will be productive
and I will start to pack. We shall see.........

Jared is enjoying being home with dad this week. Mike is layed off
Monday thru Wednesday and so he is staying with dad during the
day and just doing "guy things". Yes, Mike also has a honey to do list,
don't worry. Mike goes back to work on Thursday then after work
we leave for vacation. I say, COME ON THURSDAY!!!!

Have a great week.

Sunday, May 7, 2006

All is going well here. We took the kids miniture golfing
the other night. Kirsten caught on pretty quick how to play
"the correct way". Jared did great too but he kept forgetting
to leave his ball on the green. He kept picking it up after
every hit. Oh well, he will catch on eventually. They had fun
and that was the main thing. For Mike and I it was a close game
but I did end up winning by one putt. Yahoo for me!!! No, I did
not rub it in his face, that would not be nice.

Here is another pic of the kids posing playing golf.

I want to wish my dad and his wife, Jane, a HAPPY BIRTHDAY!!!
Yesterday they both celebrated their birthdays. We tried to
call to tell you happy birthday but you guys were probably out
celebrating yourselves. So, I hope you had a good one.

Brandon Loose starts his relapse treatment tomorrow so please
keep Brandon in your prayers. The link to his site is below.
Give them words of encouragement.

We are off to see cousin Nicholas today and have some fun
this morning (at Mike's moms) before his mom comes to take him home.

Have a great week everyone. Thank you for signing the guestbook.
We love to read the entries.

Wednesday, May 3, 2006

I wanted to share this art project that Kirsten made at school.
It was put on display at the art show for the school. We were so
impressed with her. Plus I think it really made her happy to
have her project picked to be on display.

It is a dog she made and painted. It is to be a replica of our
dog, Buddy. She did a great job.

Sunday, April 30, 2006

The weekend was great. The weather was sunny but breezy.
I loved it. The kids just wanted to play outside.

Today we took them to a local park to play on the new play
ground equipment. They had a blast. Here is a picture of
them climbing up the rock wall to get to the top.

another one of my favorites is Kirsten coming down the slide.
Those plastic slides are so full of "static electricity".
Look at her hair. It was so so funny to see.

This is a picture of me and the kids at the top.

Jared was so excited today. He went to his first "friend"
birthday party. A little guy he goes to the baby sitters with
(Josh). They are best buds. He was thrilled to go to his
first birthday party that was not a family members. The boys
had a great time. He came home with a bag full of candy and
tales of the fun stuff they did there. It was so cute.
It is so neat watching them grow up and develop their own
little friends. I love it.

I will be getting the ham sandwich sale information out this
week. So all those who said they would sell, I will be
contacting you this week. Thank you all.

Have a great week.

Friday, April 28, 2006

Yesterday Kirsten had field day at school. Her and her friends
had a blast. It is fun watching them compete against each other
and all the yelling, carrying on and just plain fun. It was a
beautiful day for it too. Jared and I went to watch her. Of course
we took the camcorder too so daddy could enjoy it later. Jared
was fine at first but after a little while I think he had wished
he stayed at the baby sitters to play with his friends instead.
He told me next year he is not coming. I said next year
you will be doing it!!! He liked that idea. Here is a picture of
Kirsten and 2 of her Friends posing and having a blast.

Thank goodness it is Friday. I am ready for the weekend. Yahoo.
Connie

Wednesday, April 26, 2006

I hope Jamie does not mind me putting this here but it is
confirmed that Brandon has relapsed. Please stop by Brandon's
page and leave them a message so they know we are all routing
for him. (Direct link below) They are setting up appointments
now to get a port put in and start chemotherapy again. Brandon
is doing great. Running around and from what Jamie says you
would have no idea he has relapsed by the way he is acting.
This is a good thing. Prayers are with them as they start
a new journey to fight Neuroblastoma again. And win again!!!!

This week is "NO TV" week for school. As Kirsten tells me that
means: no TV, no computer, no nothing with a monitor. So I am
to read a book, play a game, go outside and play or do
anything. Be active and use my mind. Those are Kirsten's exact
words for me. So, sssssshhhhhhh, do NOT tell her I am on
the computer!!!! She is doing great and so is Jared. No TV
since Sunday for them. They are playing games and being
active. It really is great. Maybe I can even get them to
clean their rooms? Doubt that!!! Oh well, nothing wrong with
hoping and dreaming.

Jared playing a game with Buddy. Buddy is watching him to
be sure no cheating goes on. That dog is way to smart.

Two weeks till Mike and I leave on vacation. I am getting
excited to go. Lots to do before we leave but eventually I
will get it done, have to.

Have a great week.

Connie

Monday, April 24, 2006

This weekend started out rainy and yucky. We were all stuck
in the house on Saturday. The kids entertained themselves
playing and "messing up" which was OK. What are they suppose
to do when they can not go outside?

Yesterday we went to the movies to see Ice Age 2 Melt down. It
was a nice movie and the kids loved it but let me tell you there
was some inappropriate comments made in the movie for young
kids to hear. The kids did not say anything about them. So
I am hoping they did not pick them up or forgot about them.

We are planning a ham sandwich sale for CNCF/Lunch for life.
I will be getting to that in the next week. Planning on selling
sandwiches for 2 weeks and delivering them the end of May. So
calling all friends.......If you are interested in helping
sell or make sandwiches let me know and I will get you order
forms or let you know when and where we will be making them.
You know me, I will be asking all my friends and family to
assist me by selling to all their friends and family. More
updates to come in next week.

I am also going to be working on typing up letters to send
to talk show hosts, morning news shows, magazines and etc.
to try to get some more awareness and funding out there in the public.

The News stations we did interviews with did a great job of
getting the word out but I think we more of a national level
thing. A 1 minute news clip gets the word out but Neuroblastoma
really needs more publicity then that. We need at least a
good 10-15 minutes or more.

People do not realize how poorly funded childhood cancer
research is, especially neuroblastoma!!! This was a
part of every interview we did however, with only having
a minute to talk on the actual news program this portion was cut
from the interview. It really is the most important piece. The
only way I know how to get the word out is try harder and
think BIGGER. So , that is my plan.

In the next couple of months I plan on getting this together to
hopefully catch the attention of the media and really make people
see how poor the funding really is.

People give to American Cancer Society (which is a good organization)
but in reality only about 3 percent of funding goes to pediatric
cancer and NONE of that goes to Neuroblastoma research. This
has to change. People need to know when they donate to
organizations who will be helped by their donation.

With Lunch for Life ALL of the donations go to NB research
(100 percent, that is why CNCF/Lunch for life is the place to donate
in particular to specifically help kids like Jared
with Neuroblastoma.

OK I will get off my soap box now. Have a great week.

Connie

The family at an Easter egg hunt

Thursday, April 20, 2006

Yesterday we our interview with WHP 21 news station on Lunch
for life. The kids loved it. The reporter (Kelly Glorioso)
and camera "lady" (Nellie) were absolutely fantastic.
The kids had a ball doing it. They were both energetic, fun
loving and just all around great people. I sincerely
thank them because they were so great and went above and beyond
the call of duty in making us feel important and that made
the entire interview go great. We thank you both for
taking the time to come over and interview us to promote
the lunch for life idea. It was so nice that we even went
outside and taped the kids just swinging. Which is
Jared's favorite thing to do of all.

The TV station even aired the show already. Wow, these girls
are on the ball. They mean business. The only thing at first
was that this is the only interview that I actually became
emotional about. And we have done at least 6 of them. Of course
they put that part on the clip. Which at first embarrassed me
but the more I thought about it the more I realized it did
not matter. It is a sad thing that kids have this cancer
with no 100ure and some do not survive.

The clip they showed with me tearful was right after we were
talking about my dear friend from Hershey (Kim Mease) who
lost her daughter (Michaela) to NB. And it just really hit
me hard at the moment. They did not show that conversation
but that is what it is all about. It is sad that parents do
not have their children anymore. That is why we need the publicity
and donations.

I am planning some fundraisers coming up and some other things
too. So the next few months will hopefully end up being
successful and raising even more money for NB.

Thank you again for all who have donated to the cause......

Kelly (the reporter) told me when she left that if we have any
other things in the future to keep her e-mail address and let
them know. I thought that was great. I am sure I will take
her up on that offer.

When the news clip was over the kids were so so pleased with
themselves. They were running around giving "high fives".
It was so cute. Yes, I have them on board for the cause and
they (especially Kirsten) understands what it is all about.

Please keep Brandon Loose in your prayers as he goes off
for more testing today to confirm his relapse.

Michaela Mease and Brandon Loose both have direct links to
their caringbridge pages below.

Connie

Sunday, April 16, 2006

Yesterday we had our annual Easter egg hunt at Grammy K's house.
See the above pictures. The kids all retrieved "loads" of eggs.
It is great that we can all get together and the kids love it.

Here is a picture of Jared on his hunt

And don't forget Kirsten

I hope everyone has a great day today. The weather is so nice
now too that the kids can go out and play all the time. They love that.

God bless,

Connie

Thursday, April 13, 2006

What a week!!!! I am glad I have the next 3 days off work.
I need it, really I do. I can definitely say that
this week I was stressful. I know I have been really fretting
over Brandon Loose and how Jamie (mom) and the family are doing.
Jamie and I had these "what if" conversations and also
serve as great support people for each other and it really
concerns me to think that Brandon may have relapsed. Maybe
they are wrong??? Have to wait for the results of further
testing, even though they are pretty sure.

On a lighter side you should have seen Jared tonight. Last
night he found a winter Jimmy Neutron pajamas and has worn it
since (except when he was at the baby sitters today). I asked
the kids if they wanted to go for a walk tonight and
Jared asked if he could leave his pajamas on? I said
"Sure, why not?" So away we went for a walk in the neighborhood
with him in his pajamas and
sneakers. It was cute.
Here is a picture of him ready to go
for the walk.

If you could have seen his face and heard him when I said
"yes" it was so cute. He smiled all over and was going
"Yea, yea, alright" and so forth. Mike and I just looked at
each other and smiled and laughed too because it was so darn
cute. PRICELESS!!!!!!! We ended
up walking to their
friend's house to visit Paulie an Laura and Jared
was excited to be showing off his pajamas he found in
his closet
and was thrilled they still fit.

Yesterday he was at the dentist and all cavities repaired.
He did such a wonderful job. I was so proud of him. Of course,
they used nitrous oxide to do it. But no sedation this time.
The sedation the last time had him acting like a wild man.
This time was so nice and easy for everyone involved (including
the dentist).

The kids are getting excited for the Easter egg hunt at my
mom's house this weekend. They will leave there with so much
candy and goodies they will be "sugared up" till next
year. Oh well, Easter only comes
once a year.

Tomorrow night Kirsten is staying at a friend's house over night.
Jared wants to stay too because he loves Laura's little brother.
He can not this time but while we go on vacation they are going to
stay there a night. (Thank you Tina, we do so appreciate it).
I will not be surprised if Jared decides he wants to stay
at Grammy's house. He has already made reference to it but
I have not decided yet or not. Maybe Mike, Jared and I will have
a special night with just
us. We shall see.

I hope everyone has a nice Easter.

Connie

Tuesday, April 11, 2006

The abc 27 news story came out great. A big thank you to
27 news and Dr.Freiberg for his assistance. He was
able to add a "reality" piece that a parent could not
really officially do regarding what the survival statistics
are for children with Neuroblastoma. I sure hope the news clip
helps raise awareness and funding as planned. Because that
is really what it is all about.

Today we went to the doctors for Kirsten since the school
nurse called and said she was running a low grade temp and had
two ear infections. While we were at the pediatricians the
Physician Assistant that we saw (Dianna Rudy) gave us a
donation for lunch for life (she had seen us on the news, plus
she knows us well from the pediatricians office).
Which I added tonight for her. How thoughtful and considerate
of her. Oh how we do appreciate it too.

Now for some not so good news and I need your help. A dear
friend of mine from Hershey who just (last weekend) celebrated
the 2 year anniversary of her son's diagnosis with Neuroblastoma
just found out that they are pretty sure he has relapsed.
They have some further testing to do yet. But they are thinking
it is for sure. Please keep Brandon Loose and his family in
your prayers. They could sure use it.

Brandon has a link below that will take you to his page
where you could leave a message of encouragement for them.
They are a great family who I care about very much.
They too were treated at Hershey and are very dear and close
to my heart. This too is just another reason why research $$$$
is needed. I can not stand to see another child diagnosed
with NB, taken from this earth from NB or diagnosed with relapse.
It has to stop. The odds are against us families effected by
NB and any and all $$$ donated will help. This is like my
second job.....NB awareness and research fundraising.

So please say an extra prayer for Brandon Loose and his
family for me.......

Connie

Sunday, April 9, 2006

I heard from Valerie Pritchett today and they are airing
our lunch for life story with Dr.Freiberg (our oncologist
from Hershey medical center) tomorrow night at 5:30pm. The
kids are excited to see it. Me too. It is always amazing
how they take what you give them and turn it into
something amazing.

This is the kids playing on the fort they made with all
the cushions from the couch in the basement.

Sunday, April 9, 2006

Tomorrow is a special day. It is a mile stone in our life that we are very grateful to have reached. It is Jared's day to register for Kindergarten. My oh my how time sure flies. It is hard to believe my little guy is starting school soon. It is also a blessing to see him starting school in the fall. Makes us realize how truly blessed we are to be where we are today and have 2 healthy kids to love and adore.

We also want to thank Katie for the presents she sent the kids from Spain. Katie is a special person. She is from Penn State and she was our dancer from THON 2005. We enjoy keeping in touch with you and are sticking a package in the mail for you also. The kids loved the stuffed animals you sent and I loved the chocolate. We loved the story about the frog and it was neat to hear you "found" it. The story goes that in one of the buildings there is a frog hidden in the carvings. The frog was carved in 1218, and is nearly impossible to find. Rumor has it, if you find it you Will have good luck. And guess what? Katie found it for us. We do always appreciate your thoughtfulness and kindness. Hope to see you again soon.

Well, I have to work today so time to go for now.

Connie

Saturday, April 8, 2006

Today is a better day. Thursday I was just upset with the kids not listening and I was upset with myself for my response to them. Feeling like a "bad" mom there for a while. We are moving on. It was a great eye opener for me too into my "grumpy/snappy" responses to the kids behavior. So here's to starting a new..........

The sticker charts are improving things. Right now I do remind them that if the behavior continues they will lose a sticker and for the most part the behavior stops. Yahoo for the kids. They really are doing better with the reward and consequence system. And I am also monitoring my own reactions to them. I stop and think about what I say before I say it. (guess if I had my own sticker chart them I would be earning mine too:-).

I was hoping it would be nice today so the kids could go out and play but it is raining hard, so looks like an inside day today. Jared is waiting for me now to help him put his Thomas the train track together to play with and Kirsten is actually still in bed. She is being a sleepy head today. Well better go help Jared.

Connie

The kids playing "nice" together

Friday, April 7, 2006

Well we did the Lunch for life fundraiser interview
today at Hershey with ABC News.
It will most likely
air next week on Monday. They will let me know for
sure closer time. Let me tell you it was a very interesting
day, to say the least.

I have to share a very intersting story with you. It
also taught me a very important
lesson. Today we
went to Hershey (we arrived at 12 noon). The interview
started with Dr.Freiberg and the kids had to be very quiet
in the office while the interview
was taking place
which was not to easy for them. They were bouncing off the
walls from the moment we walked in the hospital. When Jared
would (purposely) burp or do something, I would give him
the evil eye like only a parent can do and hope he
got the point.

After that we then moved to the playroom so they could
just get some "natural" shots of Jared playing. This lasted
what seemed like a half hour. Which when it was time
to leave they put the microphone on me so it would be in
place at the next location we were going to. We were heading
to the area where the computers were kept so we could pull
up the "Lunch for life" site to tape. On the way there the
kids were mad because they did not want to leave the
play room, they were having too much fun. So of course
everyone else was half way down the hall and I was still
trying to get them off the ride toys. OK so this is where
you should start to take notes......So I tell them (after
asking them to come several times without them listening)
to come on because everyone is waiting for us and we are being
rude by wasting there time.

First off, does a 7 and 4 year old care about "wasting"
people's time? Absolutely not, they just want to play.
I get it. OK so we are all on the same page at this point.
(Although mom is starting to get stressed because I
think at this point the kids had
enough and wanted to play
or eat lunch). Our stress actually started in the car on
the way to Hershey when the kids managed to get into
two fights that resulted in hitting each other and yelling
at each other. So our trip did not start out to well.......
I also recognize that we wanted to give a good impression
and I was worried about the kids not listening. Did I
expect too much from them? I did not think so at the time
but now that I look back on it the answer might be MAYBE.
They were excited to do the interview but they also are 4 and 7.
In the process of my own agenda I may have overlooked this
"minor" detail. Not that it was too much to expect them
to listen to me but that I expected them to just leave a
play room full of toys to go talk. Dah, on my part. They
are only kids.......

So we get down and do the web page thing and now it is time
for me to be interviewed. The kids are both fussing and whining
at this time that they are hungry and want candy out of the
machine and slushies. OK there is a slushie machine right
there but the PR lady from Hershey indicates it is
for patients only. Which is no big deal because it is
1:30pm at this time and the kids did not eat lunch yet since
we left at 11 am to get there for our 12 noon time. I
should've just bought them "junk" out of the machine that was
right where we were but no I insist they need to wait and
have a healthy lunch. (Ok, when it was all said and done
with it ended up not being a healthy lunch anyways, it
was fast food).

We finally but barely make it through a few brief questions
about Lunch for life and why people should donate to it.
Now everyone leaves and the kids really start kicking in
to fussing and whining about everything and anything. So
well, no one is around ( I do not like to give my kids the
devil in front of others). So now is my chance because no one
is around, right? So I tell them to stop it and go into
detail about how their behavior is
unacceptable. Mom is
kinda getting mad at this point.

Then they tell us they want us to walk down the hall and
they will tape us. Well we are all
about done and on our
last nerve. So down the hall we walk. Kirsten is mad
and swinging her arms like mad and Jared well what
can I say about him..... Anyways I have to tell
Kirsten that the attitude she was showing now was exactly
what I was talking about and wanted it to stop and so forth
(of course no one can hear me they are way at the other end
of the hall, so I think). So we get to the end of the hall
and turn around because we are leaving a different way. The
kids wanted to go to the cafeteria to eat but let me tell you
the way everyone was acting (including me) we needed to
leave and go through a drive through window because if we
stayed it was not going to be a "good" thing.

When we stop to say hello to the social worker (Greg) and
the camera man comes up and says "Oh, I think you forgot you
still have the mic on." At this point I have a brief
panic attack thinking "oh my god, I forgot I had the mic on".
So much for my correcting the kids in private. That poor guy
got to hear every word I said. I am sure I was red faced.
Now I wanted to go and get out of there ASAP. Now, should
I be embarrassed? Probably not, it was not like I swore
at my kids or called them names. Did I tell them they were
acting like brats though, maybe.

So here is the lesson, never forget you are wearing a mic
from the TV station when you think you are "yelling at your kids"
in private. Lesson learned for me. Hope that part
does not air on the news:- If so, it could be interesting to watch.

When we left the PR lady said "it looks like you have your
hands full" So what do you think the impression we left was????

So to finish up today brought a big realization to me.
I love my kids dearly and want them to experience and have EVERYTHING.
But I realize that it is not always a good thing. I need to
have more control over them and what they do. I do not like it
when they do not listen (especially in public). I do not like
it when they fight with each other.
I do not like getting
upset and yelling at and scolding them. I want that to all
change. That is all up to me to change too. They can not do
it alone. I am the mom and I need
to be the one to fix
this problem. So to say the least I definitely have my work
cut out for me.

I am not saying that other people's kids do not fight, fuss
and whine I am just saying that I need to have more control over
the situation then I do. I do anything and everything I can
for my kids but I never know if they are going to listen or
make a scene that I find uncomfortable to deal with. I am sure
all parents have had this happen at one time or another.

Now do not get me wrong, my kids are not heathens because
you can take them away and they do know how to act .....as
long as things go their way. If just one time they do
not get immediately what they want though, LOOK OUT. I
know this is partly my fault. I do not know if it has to do with
having a child who had cancer, has been through all he
and we as a family have been through and/or the worry of relapse
and possibly losing him. No matter what the reason (I know
even parents who haven't been through what we have been through
have the same issues) it has to come to a hault. And it is
my responsiblity as the parent to take control of this and fix
it. My kids need more discipline from me. I am not doing them
any favors by letting them think if they whine, fuss or complain
I will give in and they will get their way. I do not want to
give in, it is just easier that way.
Then the behavior stops
and it ends. I am teaching my kids it is ok and if they do it
they will get what they want. So in reality I am reinforcing
"wrong" behavior by rewarding them. Yes, I know this all to
well. But the hard part is to change and change them.

So here is my solution. We started sticker charts again
effective today and the kids are aware they have to EARN special
things now. If they act up and do not get a sticker
then no special treats either (like spending the night at
a family members, buying a toy at the store, going to the park to
play, going to a friends and etc.).

I am not implying that this is all related to having a child
with cancer but I think in a way I feel like I do not always
have control over the future and it scares me and therefore,
I want my kids to be happy ALL THE TIME. Which is the toatally
wrong answer !!!! So here is to putting a new foot
forward and taking back some control in my life and providing
my children with the most by teaching them respect and manners
and the appropriate way to act at all times and in all situations
(while also considering they are 4 and 7 year olds).

I know there is no need to type all this here. Guess I just
need to do it because I really felt bad about the way things went
not only yesterday but everyday life at my house. I
want us to be able to go away without the fear of a scene
occuring and a temper tantrum in public that I do not want to
have to deal with. From now on I choose to deal with it and
encourage good behavior.

So here is to all the times my kiddos play well together and
listen to me when I ask them to do or stop doing something.
Which there are plenty of these times too, I am not implying
that my kids are totally brats. They are great kids but
they just need some fine tuning done on their behavior.
Because I do love my kids I need to do this to to teach them
right and wrong behavior and make them successful in society.

Connie

(just a normal parent dealing with normal kid issues)

Thursday, April 6, 2006

Today we re heading to Hershey Medical Center for our
interview with the oncologists and Valerie Pritchett from
ABC 27 NEWS. The kids are very excited. Jared wants to
take his "fart pad" with him to trick the doctor with. He
remembers taking it in the past and having a great time
with it. So, if we can find it we are going to take it.
Look out world, here comes Jared and the fart pad.

I believe the clip should air tonight. We shall find out
later today.

Connie

Wednesday, April 5, 2006

The kids are getting excited to go to Disney on Ice
tonight. It is the 3 jungle Adventure. It will include
Jungle book, Tarzan and Lion King. Should be good. I love
Disney on Ice shows. Will be a late night for a school
night but I am sure we will manage. I have off work
tomorrow so we do not have to get up real early to go
anywhere. Well.....except Kirsten going to school, but
that is not until 8:15a.m. that she leaves for school.

Mike and I planned our dream vacation last night. The last
couple years have been stressful and we decided we needed a
vacation (JUST THE TWO OF US). We are going to the
Dominican Republic to Punta Cana. I found an excellent
deal and we are going for 8 days and 7 nights. YAHOO!!!

We are leaving next month on May 12th. I can hardly wait.
Don't get me wrong....I will really miss the kids. I am
not sure how it will be going on vacation without the
kids. I am sure we will miss them like crazy but also
feel that things will go well. We re setting up a "family
plan" for them to stay with with different family members
while we are gone.

Jared is GREAT about us leaving. He's like "who cares."
Now Kirsten.....that is another story. She was already
crying about missing us. I am sure she will do fine, but
she is more so the one we worry about. She wants us to
check and see if she can stay with a friend a night or two
also, so we are working on this. We think if she has
some say in where she goes and who she is with then she
will feel better.

Don't get me wrong it will be very difficult for us too to
leave the kids for a week but I really think Mike and I
need this vacation. We have not really taken much time to
do anything special for ourselves in the last few years
and now just seems like an appropriate time. We need it,
really.

Last week we received continued good news on Jared's scans,
so we decided now as a good a time as any. So, I hope all
goes well....

I will be missing Kirsten's girl scout trip to Baltimore
to go to the aquarium and science center though. But
thank goodness for Aunt Linda. When Kirsten found out we
would not be here to go, we asked her who she wanted to
take instead and she said,"Aunt Linda". So thank you Aunt
Linda for saying yes and going with her. Jared decided he
wanted to go too. So all 3 of them are going to go and I
am sure it will be a great time for them all. I am sorry I
will miss it but glad Aunt Linda can step into my shoes
and go for me. Thank you again Linda. That is what great
Aunts are for. You are the best!!!!!

Mike and I went to the Bahamas and St.Thomas way back
before we had kids and so it will be nice to return for
another vacation. When the kids get a little older it
will be great to take them on one too.

I keep reminding the kids that we have a great vacation
planned for August this year of a week at the beach. Just
the 4 of us. So they too have a great vacation to look
forward too.

I know some people would never dream of leaving their kids
for an entire week and going away. And I do kinda feel
guilty, but I also know they will be in good hands with
Aunt Linda, Grammy K and Grammy Strayer.

Now the dog, that is another story. We will not put him
in a kennel. We did that the other year and he did not
eat the entire time we were gone and they were really
worried about him. So, we are going to ask Grammy Strayer
to watch him. And this time I hope he is on good
behavior. When we were at CHOP last week for scans he
stayed with her and Wednesday morning she let him out to
do his business and she went inside to do her own business
and when she came back out he was GONE. They were unable
to find him for a few hours. They searched everywhere and
then he luckily returned on his own. They were really
worried he was lost and he did not have any identification
on him either, which was scary.

So between worrying about the kids and the dog I sure hope
we can go away and have a relaxing vacation. We shall see.

Tomorrow is suppose to be the day that we go to Hershey
Med Center and do our interview with Valerie Pritchett of
27 NEWS and the oncologist on Lunch for Life. I still
have not heard a time though. So I really am not sure if
it will definitely happen or not. I will have to follow
up on it later this morning. I hope it does happen
because we sure have been waiting a long time to do this.
If I find out I will update everyone when it will be
aired.

Well I hope everyone has a great day.

Connie

Tuesday, April 4, 2006

First off some sad sad news, the NB list lost a very brave
person this weekend. His name is Nick Snow. He was dx in
1996 and has been off treatment and NED (no evidence of
disease) since 2002. He was suddenly take from this world
unexpectedly on Sunday night related to a medical
condition.

My heart goes out to his mom (Shannon) and his entire
family. To battle neuroblastoma and win and then to lose
to another illness just breaks my heart. Please say an
extra prayer for the Snow family today. You may visit
Nick's site and leave a message for his family at
caaringridge.org/ca/nicksnow

Connie

Sunday, April 2, 2006 8:58 PM CDT

I had to share this because it was just to funny......

Last night Jared made himself a bed in the laundry room on
the treadmill. He found pillows and a blanket and layed
on the treadmill with the abd. curler over the treadmill.
He joking around said "I am going to sleep" and then
laughed. We all laughed.......

5 minutes later I realize Jared never came out of the
other side of the basement and I go and find him REALLY
sound a sleep on the treadmill. It was so cute.

I carried him up to bed and when I tucked him in I told
him he fell asleep on the treadmill and he started
laughing too.

Here is Jared working out. He is really working up a sweat.

ALRIGHT LITTLE MAN, THAT IS MOM'S KIND OF WORKOUT.

I knew that treadmill would come in handy one way or another......ha ha ha

Sunday, April 2, 2006

We are glad to be home and back into normal life. The
weather has been so nice. The kids just want to play
outside all the time. Which I do not blame them.

Yesterday morning we went to an Easter Egg hunt at a local
park. Here are some pics from then. There are always so
many kids at this hunt that it literally only lasts about
2-3 minutes. But the kids have a blast.

This is the kids showing off their find and how many eggs
they retreived.

Today is the first day withthe change of time and so it
will be light longer. I love this time change but boy
will it ever be hard to get the kids to bed at 8pm now
if it is not dark yet. We shall see how it goes.

I put new pics in the photo album for a change. You will
have to check them out.

Connie

Thursday, March 30, 2006

Scans were repeated today and thank the good lord that
NED is continued. We are so ever greatful. It was so
scarey hearing they saw some questionable areas and needed
to rescan. Today when they repeated the MIBG scan they
first did the pelvis and were told they were worried about
an area near the bladder. After that picture then the
tech spoke to the radiologist and then wanted to rescan
the torso too. They were looking at a spot on the left side
right about where the upper part of the kidney would
be. Thank goodness they did not find any "hot" spots. We
were thrilled to hear from Dr.Grupp later that the repeat
scan was normal and nothing was seen. Mike and I really
do always make an attempt to remain positive but boy the
past 24 hours were trying for us. As always we are ever
so greatly to have an oncologist who is right on top of
these matters and is very punctual at giving scan results.

We had a great time at Philadelphia. We met so many people
too. We met Rhonda and Carter Finger(and his grandmother)
who were there for scans. Carter was one of the sweetest
boys you could ever want to meet. I really enjoyed
talking with them. I wish them lots of luck on their
road back to NED. Carter has a caringbridge page at
pa/carterfinger.

We also met Shayne and Christi Thomas. Another amazing
family. What more can I say about them..... Jared, Kirsten
and Christi played hide and go seek at the Ronald and let
me tell you that girl is a great hider. I could not even
find her I had to give up and have her come out on her own.

We also met Ryan Malarkey and his parents who were at CHOP
for a consult. Ryan was just diagnosed with NB stage IV
this month and has had one chemo so far. He was an active
little guy. They were also the nicest people. I wish we
would have had more time to talk to them and cheer them on
in their battle yet to come. I am sure they will do fine
though. Kim and Henry if you need anything let us know.

We also met a little boy last night at the Ronald whose
name was Elijia and he was getting ready to start his
double stem cell transplant at CHOP in a few weeks. He
is 2 1/2 and they are from above Pittsburg. We wish him
lots of luck and hope his transplants go well. He also
has NB.

We are sorry we missed seeing Erin (Carol Gilmore's grand
dtr.) who was there for MIBG treatment. We stopped up on
3rd to see you all but you were not in your room on
Tuesday. Kim the nurse told us you all were getting a
procedure done and we never had a chance to stop back,
sorry. We would have loved to meet you all. I hope your MIBG goes well and you are homeward bound and NED bound
too.

We also never had a chance to look up Alexa Bailey who is
in transplant. Our thoughts are with you and I hope
things are going well for you all.

OK that is everyone we met and who I wanted to tell we are
glad we saw you or sorry we missed you.

We took the kids to the zoo yesterday and I will post the
pics. We took the kids up in the 6ABC balloon. It goes
up 400 feet in the air and gives an awesome view of the
city. We loved it and pics are terrific.

This is a pic from 400 feet up in the
air where you can see the whole city.

this is a pic of the balloon from the ground

This is a picture of Mike and the kids from the top overlooking Philadelphia.

Thank you all for thinking of us. We could not do this
without God and the support of all of our friends and
family. Thank you all who care and to those who left
messages in the guestbook. It is so reassuring to know
that everyone is routing for us. We are certianly blessed
by our great news and all of you too. Thank you and big
hugs to you all for being there for us. We love you all.

Connie and family

Ronald McDonald came to the Phili Roanld and the kids
had their pics taken with him (as you can see).

Wednesday, March 29, 2006

Well we ended up having to stay in Philadelphia another
extra day. The MIBG scan showed something questionable
and they want us to get rescanned tomorrow. Sometimes
when the isotope for the MIBG does not get through your system and excreted it can hang out and look bright on
the MIBG scan. What I heard was they were questioning
the bowel or constipation. I know he is not constipated
because he recently had that GI crud and should be emptied
out. They had also mentioned the renal pelvis in the
kidney but again we are thinking this has to do with
isotope excretion. Or at least that is what we are
thinking until proven otherwise. We shall find out for
sure tomorrow.

He did have the CT scan done yesterday and Dr. Grupp
called today and left a message that the CT looked fine,
even in the areas of concern on the MIBG. This is a
really good sign. So we shall find out tomorrow if this
is just a problem with MIBG scans or what. Keep your
fingers crossed but we are thinking positive until
proven otherwise. No symptoms and CT being negative
are great signs. So we are pushing fluids and things to
flush Jared's system today. We rescan tomorrow at 8am
then after we hear the results we will head home.

We took the kids to the zoo today. It was so beautiful
outside and they loved it. We had a great time.

God bless and thank you all for your continued support.

Connie

Tuesday, March 28, 2006

We are at the Philadelphia Ronald McDonald house. CT of
abd/chest done today and MIBG injection. We saw Dr.Grupp
in clinic but no news on CT yet. I assume no news is good
news. MIBG scan tomorrow morning at 10:30am then homeward bound.

Everyone doing ok. Anxious to get MIBG scan tomorrow and
hear results.

Thank you all for your continued support and good wishes.

Connie

Saturday, March 25, 2006

Insurance and all is squared away and we are a "good to go"
for scans on 3/28 and 3/29. I know a mom who had to cancel
their scans this past week because the scans were not pre-
certed in time. Think this really had me going and worried
that the same thing would happen to us. Thank goodness
we are good to go now. Thanks to the people at CHOP
(Dr.Grupp, scheduling and the people who deal with the
insurance). They are saying we are fine because MIBG
does not need a pre-cert. Thank goodness.

Sounds like there will be a few other families at CHOP
and the Ronald this coming week. I hope we get to
personally meet all of you. It is so nice to meet in
person the people I talk to over the internet.

Have a great weekend.

Connie

Friday, March 24, 2006

Valerie Pritchett e-mailed me the other night and we are
planning on doing our story at Heshey Med Center on April 6th.

We ran into another glitch in our scan scheduling that the
wrong test was pre-certed with the insurance. I am working
on this with CHOP and hope we can get it resolved before
our scheduled appointment on Tuesday. Wish us luck...

Last night Jared spent the night at Grammy Strayer's house.
Today they are leaving to go to Mike's sister's house in
Maryland and returning home on Saturday. Tonight Kirsten
is going to stay with Grammy K so we will have a quiet
evening at home with just Mike and I.

Saturuday night Kirsten and daddy are going to a Western
dance with Girl Scouts so that should be alot of fun for
them.

Glad it is Friday already. Looking forward to a quiet
weekend at home. Then Monday after work off to the Ronald
McDonald house in Phillie. Assuming we get the scan
and insurance information fixed today. (Keeping my fingers
crossed).

Have a great weekend all.

Connie

Wednesday, March 22, 2006

This past weekend Mike, Jared and Stas(one of Mike's
frineds) went hiking on our favorite hike (Flat rock).
Above is a picture of Jared and Mike on top of the world.
Of all the hikes I have been on, the view at the top of
that hike is the most beautiful place. The boys took a
packed lunch and had a blast. Jared and Kirsten are
sure turning into the "little hikers".

Kirsten and mom stayed home while dad and Jared hiked over
the weekend. We went shopping and then Kirsten went to
her friend's birthday party.

We finally did a big thank you to Yellow Breeches Middle
school to thank them for their fundraiser to Lunch for
Life. We made a big poster board and glued the newspaper
article to it and then wrote personal thank yous and the
kids drew pictures on it and we gave it to Brooke to hang
up at school to thank everyone from us to them.

I still did not hear from Hershey or Valerie Pritchett
about when we are going to do our thing on Lunch for
life. I hope I hear soon. We shall see..........

Have a great week. Take care.

Connie

Saturday, March 18, 2006

Just to update, we are changing our date with Valerie
Pritchett (the reporter from ABC 27 news) due to a
scheudling issue. We are now going to get us and the
oncologist from Hershey together at the same time and
in the same place. However, with my work scheudle being so
crazy the next few weeks with new employees, CPR classes
to teach, off to go to Philadelphia for scans and what not,
it looks like it will not be scheduled till early April.
I am waiting to hear back from Valerie or Hershey to let me
know exactly when. Right now we are planning the first full
week in April.

Last night the kids spent the night at my mom's house. On
the way up to my moms, the kids were eating fast food and
when Jared was eating a french fry his old loose tooth
finally fell out. He was so excited about it happening.
Last night he put his tooth under his pillow for the tooth
fairy in hopes that she would find him at his Grammy's
house and low and behold, she did. This morning when he
woke up he was so thrilled to have 5 $1 bills under his
pillow. He looks so cute with 2 missing teeth now.

Life is getting less hectic....this week was better than
the last few. It sure is hard working full time and being
a full time mom and wife too. Lately I have been
putting in longer hours at work and seems like by the time
I get home it is time to eat, get the kids showered, do
homework. get the kids to bed and then go to bed
ourselves. I have been in bed (typically) before 9 pm.
Of course, I am still an early riser. Love getting up
early and having that "me time" before anyone else in my
house is up or even thinking about getting up.

Keep Jared in your prayers as we prepare to go to CHOP
next week (28 and 29) for scans.

p.s. I must add that here I am complaining about a
busy schedule and I certianly am aware that life could be
much much worse and busier, so....... I will shut up about
it for now:-

Connie

Thursday, March 16, 2006

Well, we have our next scans scheduled now. We will go to
CHOP for an MIBG and CT scan on March 28 - 29. Ready to
get them in and over with and move on. Ready to hear
continued NED (no evidence of disease). After this month
we then move to every 6 month scans instead of every 4
months.

I really do think this last 4 months has been the best thus
far. Nothing happened that "freaked" us out. Sure Mike
and I still talked behind closed doors about the what if's
but nothing happened to freak me out that triggered a call
to the oncologist. So that is a good thing. Maybe things
will settle down. The longer we go in between scans the
more chance we have to get into a more normal routine, even
though I do also like the reassurance of doing scans and
hearing NED.

One thing that can freak me out is that kids literally do
relalpse all the time. A matter of fact on the NB list
serve a little girl who was 6 years out from stem cell
transplant just relapsed. So 5 years cancer free and
being termed "in remission" does not really give you 100R>peace of mind. Although the longer you go cancer free the
better your chances are of remaining that way. Which all
this talk brings me to another thing...

Valerie Pritchett is coming over next week to do our
interview for Lunch for life. We are very excited.
She is first seeing if she can get approval through the
PR department at HMC to go and speak with Dr.Freiberg
first (who is Jared's oncologist) then come here in the
afternoon and interview us. All this is taking place on
3/22. I do not know if the piece will air on Wednesday
evening or Thursday at this time. I willl find out the
intention though. We hope Dr.Freiberg is able to
participate too. That would be terrific.
The idea of ABC 27 news is exciting because it is a
major network and will be great for NB and Lunch for
life awareness.

This weekend Kirsten is going to be very busy with
birthday parties and girl scouts. But they are both fun
things to do so I am sure it will be a blast for her.

Jared boy is still dressing himself everyday just like he
said he wanted to. Awesome for him. His second loose
tooth is very loose. He wiggles it back and forth but it
is just not loose enough to fall out yet. Bet by the
weekend it will be out. We shall have to see.

The kids love to read the entries people enter into the
guestbook. Thank you for stopping by.

Connie

Sunday, March 12, 2006

Things are going well. Kirsten is feeling better and no
one else in our house ended up getting strep. Good for us.

Well, it is official now. Jared can or I should say WILL
dress himself. We have been trying for some time to get
Jared to participate in dressing himself but he had no
interest in doing it.

It was funny because he would have US snap and zip his
pants after every trip to the bathroom. I would say
recently, who does this for you at the babysitters? And
he would tell me he did it himself but at home he would
not do it himself but have us do it for him. Go figure.

Yesterday morning when we woke up the sun was shining and
it was a beautiful day. Jared wanted to go outside the
moment he woke up. Mike told him he could go out right
away but he had to go get his own clothes and dress
himself. Within a few minutes Jared appeared with clothes
on and ready to go outside. Of course we praised him like
crazy and now he is so proud of himself that he told us he
is going to get his own clothes and put them on by himself
everyday. He is even snapping and zipping his own pants
now after going to the bathroom. It is amazing what one
can do when they want to do it.

Tomorrow is soccer skill day. Kirsten had me sign her up
but now decided she does not want to play yet. She instead
wants to get a ball and practice and join the team the next season. I say, hey that is fine. Whatever she wants
to do is great. Actually this fall her and Jared can both
play (if they want) since Jared will be 5 by then. Who
knows though if Jared will get into something else by then
like football, wrestling or whatever......

Still trying to schedule Jared's scans for the end of the
month. Scheduling is still waiting for the doc to send
them a script for the tests before they schedule them.
Hopefully this is taken care of this week. It has a been
an entire month now with trying to schedule. I know
people are busy but still............

Have a great week and thanks for stopping by and visiting.

Connie

Thursday, March 9, 2006

I think Spring is almost here. Or at least it looks like
it and it is starting to feel like it too.

Yesterday the school called and we (I mean Mike) had to
go pick Kirsten up around 11:00am. She was complaining
of a sore throat and running a fever. Of course, Mike
took her to the docs and she has Strep throat. Which
was not really a surprise to us. I've been hearing that
it is going around and I know her best friend just had it
last week.

So of course, she is not allowed to go to school today
since she has to be on antibiotics 24 hours prior to returning. Thank goodness for sisters. My sister is off
work today and is going to watch Kirsten for us. Of
course, she has to watch Jared too because he wants to go
to Aunt Julie's house too. Which is great so Mike and I
do not have to miss work today. I can not take off right
now (to much going on) and since Mike missed 1/2 day
yesterday it is great that Julie can help out. If she
could not have then Mike would've taken off but this works
out well for us. Thank you!!

So we shall see if Jared is next. He has had upper resp.
symptoms the past few days but no sore throat...yet. WE
shall wait and see what happens.

Kirsten was upset the other morning. About a month ago
they both recieved small fish tanks and bought 2 fish.
The other morning her one fish died and the second one
does not look to good either. I think he will be gone
today when I go in to get her out of bed. She was
tearful about it. We promised her we would take her
shopping to buy new fish this weekend. Boy, those fish
did not last long at all. I think she will be OK but we
must get new ones ASAP. Poor fishies.... Jared's fish are
doing well thus far, thank goodness. We told her it is
"normal" that when we had fish tanks before sometimes fish
die and it is nothing she did, but instead just happens.
She seemed OK with that explanation and the reassurance
that we would get her new ones.

Have a great week everyone.

Connie

Monday, March 6, 2006

(UPDATE THIS EVENING)

A gentleman Mike works with wanted a paper I had made up on
Jared for donations for Lunch for Life. Here this morning
he handed Mike a check for $500.00 from the Friends of Christ
Church. We were shocked and thrilled. How exciting for
people who do not even know us to get together and donate to support
a great cause. We sincerely thank them all!!!!!

The kids are thrilled that the ornaments are growing on
Jared's tree. They love checking it to see how many ornaments
are on it and who has donated. Kirsten especially loves
seeing her own name on there (how cute).

(MORNING ENTRY)

Many people have asked me how they too can thank Brooke
for her fundraising for NB research. If anyone wants
Brooke's address to send a thank you, just e-mail me
and I can send you her address or you can send it to me
and I will make sure she gets it. I have also forwarded
all e-mails I received saying thank you to Brooke in her
direction. I know she will appreciate all the thank you's she gets.

Yesterday we took the kids hiking at Flatrock. We love
to go up there. The view is breathtaking fromthe top.
It is awesome. On the way up we ran into some
snow/ice patches. The kids did a wonderful job too.
They are amazing. Here is another pic of them during the hike too.

Have a great week everyone and thank you for stopping by and saying hello.

Connie

Friday, March 3, 2006

There was an article in the Sentinel Kidsworld section
this week on the fundraiser that Brooke did for Lunch for
life at Yellow Breeches Middle School. The link is

Story on Brooke

There is a great picture of Brooke and Jared too.

Thank you Brooke and all the kids of Yellow Breeches
Middle School for all your support and help to raise money
for NB research. We and all families effected by Nb
greatly appreciate your generousity.

Things are going well here. Busy but well.......

Trying to schedule Jared's scans for this month, waiting
for the doctor to write the script so the staff can schedule it. Looking at the last week of the month. Too busy to really even dwell on it. Which is a good thing.

Have a great weekend everyone and thank you for stopping
by. Jared and Kirsten love to read and look at the
guestbook, so leave a message if you want. thank you.

Connie

Saturday, February 25, 2006 8:24 PM CST

Last week was a busy week and I am glad it is over with....

Last night we took the kids to see the movie "Eight Below"
They loved the movie but it was kinda sad for them. Jared
was talking to Kirsten about a scene in the movie where a
dog fell over a cliff and it was funny to listen to them talk about it because Kirsten said,
"Don't talk about that Jared because that part was really sad and it made me cry." Jared said, "that's OK Kirsten
because I cried too." And they both really did. Mike and
I were sitting there watching the movie and we were
watching them and they were both sitting there crying.
They did love the ending but the movie definitely had some sad parts to it. So just a warning to parents who want to
go see it. I think it was PG13.

Today we took the kids to Ski Roundto to snow tube. It was
the perfect day. It was cold and windy when we arrived but
before long it was sunny and not to cold. It was in the
40's today. Here is a pic of them and there is another one
at the top of Jared's page.

The kids had a blast. THis was the first time any of us
went tubing. We had to sit on our tubes and and get hooked
onto a pully system that pulled us up the mountian then we
rode our tubes down. The way down was great. It was a
little slower then I would prefer but it was great for the
kids.

I heard from Brooke's mom (Laurie) and the kids at Yellow Breeches Middle School raised over $200.00 for the Lunch
for Life campaign. I am thrilled and that is terrific.
What an awesome thing. I think the article is going to be in the Sentinel this Tuesday in the inside paper titled
Kids World. So you will have to look for it.

Have a great week.

Connie

Tuesday, February 21, 2006 9:10 PM CST

I moved all the THON pictures that were in the jounral to
"JOUNRAL ENTRIES" so you will need to go there if you want
to view them.

I forgot we also want to thank LIFE house for paying our
hotel room tab. That was very nice of you all. You
kids never cease to amaze me of how nice and considerate
you all are. THANK YOU SINCERELY!!!!!!!!!

Jared was so thrilled yesterday morning to have $5.00
under his pillow from the tooth fairy. It was cute.
He is now working on getting his other bottom tooth out
that is loose. I am sure it will not be long till it is out.

Today was one of those days. I will just say, "When God gives you lemons, make lemonade". I can say this now but
could not earlier today. Was a difficult frustrating day
but it is over and I need to move on now, so here is to
better days ahead................. (nothing to do with
Jared, all is well with him).

Thank you for stopping by.

Connie

Sunday, February 19, 2006 8:26 PM CST

THE DANCE A THON WAS A BLAST!!!!!!

IF ANYONE WISHES TO DOANTE TO THON. GO TO http://www.thon.org
and you can donate under the organization that
sponsors Jared, which is LIFE HOUSE.
The $$$$ goes to
help pediatric cancer at Hershey Medical Center.

We arrived around 7 pm on Friday and left to come home
today around 2pm. It was a fun time for all. Wish we
could have stayed till 7 pm tonight when it was completed
but with working tomorrow and things to get done it did
not happen. Next year I will plan to take off the Monday
following THON and just stay another day.

I posted a pic at the beginning of Jared's web page of the
dancers that sponsered Jared from LIFE house. They were
terrific!!!! They were holding up well too. 48 Hours to
be on your feet is a long time and we are so proud of
our dancers from LIFE house and all the dancers in general.

We stayed at THON till about 11:30pm or so each evening but
at that point we had to leave so the kids could get some
sleep or we would have some mighty grumpy kids on our
hands. Which we still had our moments but not to bad....

The kids had a blast just squirting water at everyone,
blowing bubbles, chasing and popping bubbles, rolling balls
around, throwing ball, bouncing balloons and so fourth.
They had a blast.

They really enjoyed seeing everyone from LIFE house who
went out of their way to welcome us and show us a great
time. Thank you Sarah and Holly who took us out for brunch
on Saturday. It was really nice to see you again. Tom
really entertained the kiddos too.

Kirsten and Jared both enjoyed seeing the sports players.
Jared especially like the football players...............

and Kirsten loved the cheerleaders.

Jared and Kirsten won the hearts of many college kids
as all were helpful and fun to be around. Here is a girl
Jared met today who just played bubbles with him.

Kirsten and Jess posing with the silly glasses.

jared playinig with some "crazy guy" we met at THON.
Actually Jared had fun playing ball with this guy.

I know I shard alot of pics with you all and I have so many
more that are special too. Hope you can see them all as I
know how pics can really slow down the download at times.

Sylvia it was so so nice to meet you. What a lovely family
you have too. I wish I could have met both of your
daughters. I am so impressed with Michele and cutting her
hair for Locks of Love. Her shorter hair looks great. You
have to show me the longer hair too. So nice just to meet
you. You are a terrific person.

Love ya all,

Connie

Friday, February 17, 2006 12:08 AM CST

Only time for a quick update.

We are leaving for State College today at 4pm. We are
very excited to go and see our sponsors from Life House and
see everyone from last year too. We are packed with squirt
guns and beach balls.

Jared just ( a minute ago) lost his very first tooth. He
is thrilled. The tooth fairy will probably come to Penn
State tonight. Yahoo for him.

Brooke had her fundraiser for Lunch for life yesterday at
the school and all went well. Even though Jared was to
shy to even talk to anyone. The Sentinel Paper is doing a
follow up story. Will let you all know when it will be
published.

Have a great weekend. Tons of things to do to get ready
to leave. See ya all later.

Connie

Wednesday, February 15, 2006

Hope everyone had a nice Valentine's Day. I know we did.
I went to Kirsten's party at school yesterday. The kids
were all hyper and excited. Kirsten is still doing
Valentine's to pass out ot people. I think she has sent
50-60 Valentines out this year. She loves it.

The kids were so thrilled last weekend. They have wanted
to get fish for sometime now. So, for Kirsten's birthday
we bought both the kids little one gallon fish tanks.
On Sunday we took the kids fish shopping. They both
picked out two gold fish for their tanks.

Kirsten named her two fish "Rose and Ruby" and Jared named
his two fish "Brian and Joey". They love to just sit and
watch their fish swim around. Feeding time is really
exciting for them. "Look, look their eating" and laugh,
oh my do they laugh. We figured (besides Buddy, our dog)
this would be nice first pets for them both and they love
them.

I wanted to say that our Lunch for Life tree is continueing
to grow. We were surprised to see the names of a couple we went to high school with on Jared's tree. Thank you
Dave and Judy. How thoughtful. We have not seen you guys
in years......Hope all is going well for you. We hope to
continue our campaign for Lunch for Life.

Tomorrow is the big day at Yellow Breeches Middle School
(or Boiling Springs school) for out Lunch for Life campaign
The kids and I are going to the school tomorrow during the
lunch time hours so the kids can meet Jared. They are
asking kids to bring in donations and spare change to
donate to Lunch for Life in honor of Jared. Their goal is
$2000.00, which is impressive. We are just thrilled they
are doing this for us and all families with children
effected by Neuroblastoma.

The Sentinel Newspaper is coming tomorrow to do a follow
up story to their original Lunch for Life story they did in
December. The more attention and media we can get the
better.

Well we are planning on going. I work in a long term care
facility and we are in the midst of our Department of
Health annual survey right now. It began on Monday and
will end on Thursday. so I am keeping my fingers crossed
that I am still able to definitely get away on Thursday.
This is something that is very important to me and my
family so I hope it all pans out for me to go. So far so
good.

Friday we leave for State College. We are getting really
excited about this too. We are thinking of everything
we want to pack. I have received and sent many e-mails
about this to the Penn State students. Two young ladies
who we met last year are planning a lunch date on Saturday.
Should be great.

The 5" of snow we received over the weekend is almost gone now. Yesterday was so warm and nice that it is all
melting away. Bet this is our last snow of the year, who
knows? Guess we will have to wait and see.

Kirsten loved all the e-mail messages and guestbook entries
she received for her birthday. She read them all last
night as she was jumping up and down on the chair with
excitement. What a clown!!!! So thank you all, she loved
them.

Connie

MONDAY, FEBRUARY 13, 2006

Today is officially Kirsten's BIRTHDAY. Happy
Birthday Kirsten. It was 7 years ago today that we
were blessed with our first little angel, and that
is you. My how you have grown in 7 short years. You
are growing into such a nice young lady who has a
strong will and determination. These will be great
qualities as you grow and conquer the world.
I hope you have a terrific day today and loads of fun.

HAPPY BIRTHDAY AND WE LOVE YOU!!!!!

Mom and Dad

SATURDAY, FEBRUARY 11, 2006

My little "punk pie" (as I call Kirsten, but she gets mad
at me when I call her this in front of her friends) had her
7 th Birthday party today. There were 10 kids there
counting Kirsten and Jared.

We had fun and played some games for prizes. I really
thought we were going to have a "cat fight" when we played
musical chairs. The very first time the music stopped the
little girl who did not get a seat was very upset and said
the other girl who was on the chair had pushed her off.
The girl on the chair was Kirsten. I really
was not paying attention to who was there first, I just
saw Kirsten on the chair and the other little girl not.
We resolved it by starting over and I then recruited other
adults to help supervise "who really owned the chair" of
the last person to sit down. I felt bad because this
little girl was upset and almost cried and it was not about
getting upset it was about having fun. She did get happy
again then. Thank goodness because the goal was for
everyone to have fun. (Which did happen)

We played musical chairs, pop the balloon game where prizes
were inside the balloon, squish the balloon and beat the
daylights out of a Care Bear Piniata with a baseball bat
until the goodies hiding inside came tumbling to the floor.

Kirsten had a cake with 4 disney Princesses on it. It was
beautiful.

Kirsten had fun and received many gifts she loved so much.
She received a princess rug for her room, clothes, 3
diaries, barbies, brats and more.......When we came home
after the party the kids just played and played till bed.

We actually put the kids to bed at 7 pm tonight. They were
so tired and Jared was getting grumpy so we tucked them
snuggly in their beds and fast a sleep they went.

Kirsten tucked her tooth she lost under her pillow for the
tooth fairy to visit tonight. Friday morning while Kirsten
was brushing her teeth before school when she spit the
toothpaste out of her mouth she found her tooth that had
been loose in the sink. She was so excited. Last night
she and Jared spent the night at Grammy's house and so we
would not confuse the tooth fairy she opted to wait till
tonight to put her tooth under her pillow.

When I went to get her tooth for her tonight I noticed it
had broken in half. When I showed Kirsten, she said "cool
now I have two teeth, so I will get twice as much money."
Boy she is one smart cookie (smile).

When we came home from Kirsten's party we had a package at
the door. It was a present from Sarah and Holly from THON.
You two are forever thinking of us and we do thank you and
appreciate always how you go out of your way for us. I
will post pics of the kids with the surprises tomorrow.
They loved it. I hope we see you all at THON next weekend.

Wow, THON is sneaking up on us fast. I hope we are all
feeling better and can stay the entire weekend.

Pleas visit the guestbook we love to read the entries.

Connie

Friday, February 10, 2006

Today is a better day here, better mind set. Sometimes I
just need to vent and get my feelings and frustrations
(anxiety) out. OK, I did it and now I feel better.

Wanted to share Kirsten's picture of her 100 day project
she did for school. We made the number 100 using 100 mini
marshmellows.

Tomorrow is Kirsten's 7th BIRTHDAY party. She is getting
so excited. She and Jared had a great time getting the
little "loot" goody bags ready for her guests. Of course,
they decided what they wanted to keep for themselves too.

I looked on the internet and found some fun games we can
play too. So, tonight will be busy finishing up the last
of the shopping for tomorrow. And Kirsten wants to go
decorate the cabin tonight so it will be done for tomorrow.
So we will have to see how much we actually get done.

Last night was a poor sleep night for us. Our next door
neighbors heat pump must be going bad. It is so noisey.
It sounds like there is a generator sitting outside our
bedroom window running all night. Our neighbor is not
home now, hope they come today and realize it so maybe
it will be peaceful tonight.

Hope everyone has a terrific weekend.

Valentine's day is coming soon!!!!!!!!!

Thursday, February 9, 2006 4:37 AM CST

I can not help but worry lately.

I know Jared is probably fine but boy can we drive
ourselves crazy....... The past month has been a challenge
to remain positive.

Jared has had something going on since 1/16/06. Two weeks
ago Jared woke up in the middle of the night crying and
complaining that his head hurt. This is unusual for him.
I gave him Tylenol and he went back to sleep and has been
fine with no more complaints of this. His eyes look funny
now. Just does not look right. Sure he has a
sinus/ear/eye infection but.......sure can freak
us out at times.

This week complained of his vision being disturbed and
his head being dizzy. Just can not seem to completely
kick this thing once and for all and get 100% better.

Having normal energy level but I tell you I am starting to
get a little paranoid. He is being followed by his
peds doc but when is enough enough?????

I have to ask myself am I just being paranoid or is there
really something going on? I do not know the real answer
to this yet? Hope I am just being paranoid.

I have to really think about all this and try to keep a
level head and rationalize things in a normal manner,
which I must say is not always easy.

I do not say this to worry anyone. Just venting my own
frustrations in print. Feels better to get them out vs.
keeping them inside.

Will monitor a few more days before I really really freak
out.

For now just dong the normal things:

Monitoring for a temperature
Monitoring for pain
Monitoring eyes for a change in the way they look
Monitoring for change in activity level
Monitoring for anything that just shouldn't be...
(Me and my paranoid self)

God, Help me to relax and not worry needlessly.......

Tuesday, February 7, 2006

I should've known better than to even say on Saturday that
Jared was feeling better. On Sunday morning when the kids
woke up they were both coughing and stuffy. Kirsten
complaining of a sore throat and Jared just back to the
cold symptoms again.

As Sunday went on Jared started having drainage from his
right ear and his eyes were red with a lot of yellow
drainage. Plus still have a congested
cough and stuffy
nose. Ok, here we go again.

Yesterday morning Jared's eyes were pasted shut when he
woke up which scared him. We ended up taking him to the
doctors yesterday. They put him on an oral antibiotic
which they said may or may not help depending if it is
bacterial or viral in nature.

I was wishing they would put him on eye medication too
because the drainage is terrible. Poor little guy just
constantly rubbing his eyes and draining like crazy. He
is getting use to the warm compresses now. But his eyes
are so red, swollen and even his orbit around his eyes is
red. If the eyes do not improve today I am going to ask
them for eye drops to help clear it up quicker. We shall
wait and see what happens though.

Last night when he went to bed he told me to wake him up in
the morning and clean his eyes before I go work. This
morning I heard him up there crying. I said what is
wrong? He told me he could not see. So we did the warm
compresses and got all the yuck off his eyes (from being
pasted shut) and now he can see again.

I said are you feeling better today? He said, "no, I still
have an infection." Then he proceded to tell me of a
teacher of his who has a friend who is blind and they have
to use a cane to walk and feel their way around. He then
told me that is how he feels when he wakes up with his eyes
pasted shut.

Dad is staying home with Jared today so he can rest and
relax. We can not send him to the babysitters with all
that eye drainage and him constantly putting his fingers
in his eyes. The babysitter and other parents would not
like us if we did that. So staying home it is.

I finallly sent a follow up e-mail to Valerie Pritchett
the ABC 27 News reporter who is planning on doing a story
on Lunch for Life. Last night I also received an e-mial
from a reporter from 21 NEWS who wants me to contact her
to do a story on Lunch for Life. Our work is not yet done.

I am so busy this month at work and home that I will probably not be able to plan anything til next month at
the earliest though.

Next week Yellow Breeches Middle School is doing a fund
raiser in honor of Jared and Lunch for Life. Which
was triggered by our niece, Brooke. I will write more when
I know more details. The Sentinel is planning on doing
a follow up story to their first one and covering this
event. Thank you Brooke for your thoughtfulness and
planning. We appreciate it. I am excited to come down
to the school next week and get it underway.

Well time to go get ready for work and get Kirsten up
and ready for schoool.

Connie

.

Saturday, February 4, 2006 6:14 PM CST

Well things are going well. I think Jared is soon going to
be over his cold. He can now sleep at night without
coughing his "head off". Which is a good thing. He stilll
has an occasional moist cough but not as bad. I actually
think he may have passed the "crud bug" on to me now which
I guess I can deal with. Dad has been spared thus far...
hopefully he continues to be.

Kirsten is getting ready for her big birthday party this
coming Saturday. Her birthday is the 13th but party is on
the 11th. We again rented the cabin for her to enjoy and
have her party at. She invited lots of friends and family
to come and celebrate with her. She will be 7 years old.
It is hard to believe how fast time flies. It seems like
yesterday she was just born. My baby girl is really growing
up, for sure.

She did the Disney Princess invitations but party supplies
are with stars and say "rock star" on them. She picked out
a beautiful cake today which is 4 of the Disney Princess's
on it. She was very particular about the colors used to
decorate it (she was funny).

We are anxiously awaiting to attend THON. Which is the big
money raiser for the Four Diamonds fund at Penn State
Milton Hershey Hospital. This is a great place and a great
fund. The kids at Penn Sate in State College hold a 48
hour dance a thon to raise money. It is awesome. THON
is on February 17-19. We are going to have a blast.
This year Mike is not going but instead our niece Brooke
is going with the kids and I. Brooke is 13.
Our dance a thon student sponsers are from LIFE HOUSE.
The dancers are Jeff and Jessica. One thing people can do
to help is send them mail to receive at THON. To do so
you can send it to,

Attn:THON mail call
Dancer # 87A
Jessica Wojcik
216 Hetzel Union Bldg
University Park, PA 16802

Attn:THON mail call
Dancer # 87B
Jeffrey Wuebber
216 Hetzel Union Bldg
University Park, PA 16802

The mail can be encouraging statements, GO PENN STATE or
anything you want to say to them. I already sent a bunch
of mail to a bunch of dancers who are frineds with a girl
who's mom sent me their addresses and I just found the
dancer's names and numbers for LIFE HOUSE who is our
support and pen pal type people. We are anxious to meet
them in person at THON.

If anyone is interested in send more mail to dancers just let me know and I will pass the addresses and numbers onto
you or you could go to the THON website and look up dancer
information. There are over 200 dancers.

I continue to keep all the kids who are battling this
disease in my prayers. May treatment go well and NED
be reached for all involved. God bless you all.

Connie

Wednesday, February 1, 2006

The Patriot news did a wonderfu story on lunch
for life and Jared's story. A dear friend from
Australia was so kind as to put a direct link
on Jared's page for all to go and view it. If you
did not see it you should take a look. Thank
you Colleen.

It is funny because in the article the reporter
referred to Kirsten as "the chatty sister". Well,
yesterday Kirsten recieved her report card for the
second marking period and it was great. She had all
satisfactory or excellent ratings except in 2 things.
One of those things were staying focused with the
comment that she is doing well academicly but tends
to talk to much in class to classmates. That is Kirsten
alright. When I read it she said, "sorry mom" I told
it is ok but now she knows what she has to focus on
and improving on. She is a talky thing. She will talk
your ear off, but as I said before I think she gets it
honestly from me.

I had off work today because Jared was suppose to go to
the dentist today for work to be done. With his cold I
ended up cancelling his dentist appointment but was
able to get his needed ECHO done at Hershey. This is
just a 2 year post transplant follow up test. I assume
all will be fine with this test. No problems in the
past so I am sure no problems now either.

We visited everyone while we were there. Started with
Nurse Judy the radiation nurse. We use to sing songs
to Jared through the intercom while he received his
treatment. So of course when she saw us she sang the
Tiger song for him.

Here is a pic of Jared and Nurse Judy

We went up to the oncology floor and saw Katrina the
Child Life specialist. We spoke awhile and then gave
her some craft things we had brought with us. We bought
some suncatchers to paint, foam stick-ons and foam
animal shapes the kids could use to paint with. We know
how important is it for the kids to go to these activities
and have fun so we wanted to contribute to the cause.
I hope the oncology patients have fun with them.

In talking to Katrina we found out that not alot of the
nurses who personally took care of Jared were working
today. Most were on evenings or off.

Next we went to clinic to visit the Doctor, Pam (his nurse)
and Greg (the social worker). We had fun talking with
them a little while. Of course, Dr.Frieberg teased Jared
and had him all excited, which Jared loves. We talked to Greg
about when Jared would bring his "fart pad" to clinic with
him.

It was so nice seeing everyone again. It was strange too.
Ever since treatment ended we have not had much contact
with Hershey. Not because we don't want to but because
we go to CHOP for our scans because they do the one day
scan for MIBG and Hershey does the three day one. Also
when we had that false positive scan in Dec 2004 we had
great difficulty getting our scans from one hospital to
another and we decided to do all our stuff at CHOP because
well....if we relapse we would go to CHOP for treatment
because they just simply see more NB and relapse NB. Love
Hershey though too. The people are nice and it is so close
to home. They were my saviors numerous times during
treatment. I probably bugged them everyday with one
thing or another. So, Hershey will love you guys.

I will have to try to make it a point to go to Hershey to
visit more often but with working full time Monday thru
Friday it is hard to get there to visit during office
hours.

Well that was my day. Hope you have a great week (what is
left of it anyways). Talk to you later.

Connie

Tuesday, January 31, 2006

Today is suppose to be the day that our story on
Lunch for Life is to be in the Patriot. They had
originally said it would be in the Metro section.
Anxious to see it in print and how it came out.

Jared still has this terrible cold. He does well
during the day but at night he coughs and coughs
that I actually think he is going to throw up, but
he does not.

We have been putting him to bed with 2 big pillows
and then even end up adding a third one but to no
avail. He continues to cough and hack.

He has had this cold for over 2 weeks now. Gets
better then gets worse again. No longer running
a fever though. I am planning on listening to
his chest this morning. Think it started as a
sinus cold but has gone to his chest now. Has
been on an antibiotic since Thursday with no help.
Probably is a viral thing and the antibiotic will
not do squat for it though. But this night time
coughing is crazy. Even have the cool mist vaporizer
running at night with continued coughing. Hope it
improves soon. Gotta love winter.

Last night Jared was in bed before 7:30pm. He was
beat. Started the new baby sitter yesterday and no
nap (which is a good thing) and so he was just
tired. He loves it at Linda's house and all the kids
he has to play with. That is fantastic. He kept
telling me he had "too much fun" yesterday and wanted
me to "smack him around". Which is a little game
we play. Glad his first day back was a good day, may
he have many more to come.

Last night Kirsten went to a skating party at school.
She and Laura had a fun time together too. Fell a few
times but did pretty well. I took her but Laura's
dad offered to take her and bring her home and Kirsten
really wanted to go with Laura. So, I took her and
got her squared away with skates and skated with her
till Laura arrived then she told me "I could go
home". Which after watching her a little while I did
leave. She is growing up way to fast these days. My
big girl!!!

Well have a great week everyone.

Connie

Friday, January 27, 2006

Today is Jared's last day at daycare. From
now on he will go the same place that Kirsten
goes. He is actually looking forward to it.
On Monday he insisted he was no longer going
to daycare and wanted to go to "linda's" with
Kirsten, NOW. I kept telling him he had one more
week at daycare. He became angry and argumentative
with me insisting on going with Kirsten. So,
next week he WILL go to Linda's.

Since today is his last day there, we made cupcakes
last night to take today for snack. Of course, it
had to be chocolate ones (per Jared).

He use to go to Linda'a before in the past. When we
first put him back in daycare after treatment we
couldn't get a full time slot so he went to Linda's
a few days a week and daycare the other days. So,
he is familiar with them.

She and her husband watch a lot of kids. There ae
a lot of little boys there so he will definitely
have other boys to play with. There is like 4 of
them that will go to Kindergarten next year too.

We debated on taking him out of daycare now or
waiting till summer to make the switch. He was
excited about the "switch" and when Mike is off
work (which he has been here and there a day or
two) he can stay home with Mike free of charge.

With daycare we pay one flat rate whether he goes or
not. This will be a better financial thing too
because now if Mike is layed off then Jared can
stay home and we owe nobody for anything for that
day.

Mike and I do need to make sure now that we take
more time to work with Jared on working toward
goals to get him ready for school in the fall.
Although, Kirsten is so cute, she has also been
working with Jared to write alphabet letters and
helping with letter recognition. What an amazing
big sister. So with mom, dad and sister helping
he should be ready for school by September.

Have a great weekend all.

Connie

Thuursday, January 26, 2006

I must add a note about yesterday's entry.

I am sure Jared is probably just as fine and healthy
as I am. It is just to say that any complaint drives me
crazy and worries me to death at times, especially
when the complaint involves pain or something of that
nature. Welcome to my world. (Just kidding).

No complaints yesterday and his complaint of pain
in random and not all the time. If his complaints were
more consistant then I would be really concerned and call
the doctor and he would be at Hershey or CHOP getting
checked out for sure. So bear with me when I vent my concerns and
frustrations. This is not meant to worry anyone just
my place to vent and get my frustrations out.

You parents of kids with NB know exactly what I
mean about "the fear" that lessens but never truly tends
to go away.

Connie

Wednesday, January 25, 2006

Just trying to stay in check. I swear I
wonder when the fear will go away and stay
way.....I know the answer to that.....NEVER.

For the most part we think "GOOD THOUGHTS"
but i tell you this belly pain thing is
starting to bother me.

Jared will complain of his belly hurting and
when I ask him where he says "everywhere" and
when I ask him to point and show me he always
points to the same place. He makes a big circle
with his finger around his belly button area.

When I ask him if it hurts like a boo boo or like
he is going to throw up he usually says, "like
I am going to throw up."

He says this but is eating (only didn't eat when
he had that sinus cold). But that is improved now.
Acting pretty normal for a 4 year old (happy at
times and grumpy/moody at other times).

Then I think could it be some GI irritation or
something. We are going to wait it out and see
if he continues to complain.

I don't want to get paranoid about every complaint
and symptom. Just warrents some watching.......

Mike and I were talking last night and said how are
we ever going to go to every 6 month scans. Crap,
it has only been a little over 2 months since our
last scans and we are worrying and wanting to do it
now. Next scans due in March.

Somehow we need to move on and get over this, but
how?????? At least I am not freaking out yet and
calling the oncologist. Just keeping it in the back
of my mind that if the complaints continue, I can
notify them. I guess I am not really sure how to
trust and move on. Thought I was getting there,
maybe not.

I think this is where the "church" thing will come
in to play. We really do need to trust and let
go some and move on. We do move forward but
always seem to fall in the same worrisome rut.

I guess that is what being a parent of a child who
had cancer is all about at times....and this to
shall pass.

Thank you everyone for your continued encouragement
and prayers. It really does mean so much. Take
care all.

Connie

Tuesday, January 24, 2006 4:30 AM CST

hello all,
The kiddos are both feeling better and getting
over the colds they had. Thank goodness. I
am actuallly surprized about how fast they really
are beating these "illnesses" this winter (so far
that is).

We never made it to the "tea party" on Sunday, which
was ok. Maybe next time. The kids just had a
relaxing time at home. Kirsten just relaxed and
literally watched TV all day (guess you need to do
that sometimes). Jared actually fell asleep
on Sunday at 6:30pm on the couch and when I woke him
up he just wanted to go to bed. So, he was in bed
before 7pm. Which was wierd, but guess he was
tired from all the swinging and playing with sand
he did in the late afternoon.

His new thing is swinging high and jumping off the
swing then. Scares me but I guess kids will be
kids and jumping off the swing is a fun kid thing to
do.

Boy with the car industry closing all these plants
right now. Kinda thinking about Mike's job since
he works at a plant that makes carpet for cars.
There was a blip on the news last night about
LEAR (which is where he works) and how this could
effect their jobs their and would they remain in
Carlisle with all the car production plants closing.
Just a question to ponder. Not getting excited yet.
We will have to wait and see. I told Mike if for
some reason it does close/move it may be a great
opportunity for him to do something differant
with his career. He is not thrilled to do what he
does but he has done it since 1988 and with 4
weeks vacation it is hard to leave and start anew.
So, we shall see.

The patriot called last week and they are not going
to run the "lunch for life" story today (not sure if
I had posted this yet or not). Instead they are
going to run it in the paper on January 31st. So
thought I should pass that on to some of you who
may think it is today.

Better go get ready for work now. Take care and
thank you for stopping by.

Connie

Saturday, January 21, 2006 10:03 PM CST

Happy Birthday Grammy K (my mom). Today is
my mom's birthday. A whole clan of us went
out to dinner tonight for her birthday. We
went to Chili's. We had a good time and the
food was great.

The kids bought grammy balloons and party hats
too for us to wear. Here is a pic where Jared
put 4 hats on my head to wear.

I hope mom had a great birthday. Here is a pic
of her with Jared and Kirsten.

We love you mom!!! You are the greatest.
you are always there when we need you, you will do
anything for us, even without us asking.
You always know what to do to help others or
make others feel good about whatever is going on.
You have a wonderful ear to just listen when I need
to talk or laugh when I need to laugh. You are great.
The kids love spending time
with you as do we. In our eyes you would definitely
win the mom and grammy of the year award, hands down.
I hope when I am a grandmother that I am as terrific
as you are with your grandkids. Love ya always
and big hugs coming from us to you. So again a big
HAPPY BIRTHDAY to you with a hug and a kiss!!!!

Last night Kirsten had a friend spend the night.
Those kids were wild and crazy but had a great
time. No actually, they were great kids. They
played so much.....put make up on, dressed up
in dresses then pajamas, watched a movie, played
games and just ran around acting like nuts. Which
was fun to watch.

One thing that was so nice was the girls let Jared
play with them all night. Even when it was time
to sleep they let him sleep with them. Jared
slept in Kirsten's bed and Kirsten and Laura
slept on the floor in sleeping bags on cushions.
I know Jared really appreciated being part of
their fun. How sweet of them......

Here is a pic of thekiddos last night in Jared's
bed watching a movie and eating pop corn

Jared's cough is better and his eating just finally
started picking up tonight. Prior to that we
were really concerned that he was not eating and
complaining of his belly hurting when he eats.
We were talking today and if it continued another
few days we would call oncology Tuesday and get
him checked out. So, I hope his appetite continues
to increase.

It is wierd, Kirsten was fine and when she woke up
today she had a little cough and then was fine
all day and tonight she now has a horrible croupy
cough. It is terrible sounding. When we put her
to bed we put the cool air mist vaporizer in her
room and tried some med for cough and claritin too.
I hope she is better tomorrow because tonight she
can not even talk (laryngitis). Hate when the
kids are ill, but know it is all par for the
course of winter being here.

Tomorrow Kirsten and I were to go to a Tea Party
with girl scouts at the Clarion. We shall have
to wait and see how she feels in the morning now.

I am still unable to receive my e-mails from the
NB list serve which is so wierd. IT must have
to do with my internet company. I just today
received an e-mail I sent to my home address
from work on Thursday. That is so wierd. I do
not know what is going on but hope it is fixed
soon.

Carrie from the NB list has been forwarding all
the posted e-mails to me personally. Which is
so terrific of her. I'm sure it is time consuming
for her. Thank you Carrie.

I am glad she did today because I was shocked
to see one of the little boys from New York
(who my mom and I and the kids met last
summer at Dutch Wonderland) had a questionable
scan and is going for a biopsy and further testing
this week. Please keep Kendall in your prayers.
I hope it ends up not being relapse and is just
a virus or something.

Pray for all the families and kids fighting this
terrible disease and going through rough times
right now.

Take care

Connie

Thursday, January 19, 2006 5:34AM CST

Last night was "play date" night at
our house. Kirsten's friend (Laura)
came over and her little brother
(Paul) came also to play with Jared.

The boys played Thomas train and cars
(of course) while the girls played
dress up and barbies. My kiddos love
playing with them.

Laura is planning on spending the
night with us Friday night. She has
never spent the night anywhere before. I
am sure it will go well and if she
changes her mind she literally lives just down the street.

Jared is getting a sinus cold. Started
the other day but really kinda kicked
in yesterday. Some nasal congestion
and coughing.

He is not really eating that much.
Only nibbling on things. Complaining
of his belly hurting randomly but when
I ask him about it then he says it doesn't
hurt or it hurts everywhere. I did
weigh him tonight and his weight is
49 pounds (which is stable for him).
I also did palpate his belly but it feels fine or should I say nothing abnormal felt.

He is up and running around and playing
like normal. But by bedtime (8 pm)
he is beat and goes right to bed and
crashes to sleep.

Last night at bed time he was running a
temperature (101). He went to bed and
slept all night. We will see what he
is feeling like this morning.

Mike and I were laying in bed talking
last night and we start talking about
Jared's symptoms and complaints......
And I said ,"Mike he just has a cold."
I know where both of our thoughts were
going....and I wanted to stop that.

OK, he has a fever, is complaining of
his belly hurting and is not eating...
Yes, this sounds all to familiar to
when he was diagnosed but now he has
a reason to feel that way. He has
cough and congestion. If he had those
symptoms without any signs of a viral
thing or cold going on, then YES I
would really be worried.

I hate even typing that. I also hate
even thinking it. Like I have said
before, Our poor child is not allowed
to have any symptoms of any "normal"
childhood illness without us freaking
out.

Well, I just hope he is feeling better
today. We shall see.

Thanks for checking in. Talk to you
later.

Connie

Monday, January 16, 2006

Aunt Linda we thank you for the fun you gave the
kids today. They loved it. Linda took the kids to
the science center and Strawberry square today.
The kids learned about electricity and gases and things.
The kids even volunteered and had Aunt Linda go up and
do an electricity experiement where she had to be
shocked. Linda you are the greatest. Thank you!!!!!!
They then went to the IMAX theater and learned about
the Nile River. They loved it. They told us it
was the "roughest" river around.

Mike and I went looking at homes today. We eventually
want to buy a new home so we had a good day.
We found so many nice places. We just need to commit
and actually do it. I am so nervous to buy a new
place but know eventually we will really do it.

Tomorrow is our big turn around day. Trying to live
a better life and be more active and better fit.
I hope this time we are winners and actually do it.
I hope everyone has a great day. God bless you all.

Sunday, January 15, 2006

We had a busy but fun weekend.....

Friday night the kids stayed the night at
my mom's house. Mike and I went out for
Mexican dinner and then a relaxing evening
at home with us and a bottle of wine.

Saturday night Kirsten went to a friend's
bithday party and had a good time. It was
a sleep over but she did not sleep over.
Which she was upset about but with Sunday
school at 9 am this morning we did not think
it was a good idea.

Today we went to church, which we are going
to get back into doing. The kids loved it.
Mike and I ended up going to a Parenting class
which we both found interesting.

On the way home from church we talked about what
we had all learned and it was neat. Jared told
us he learned to be nice to others and if you
do "bad" things you should ask god to forgive
you. I thought this was interesting for his
first time at sunday school. Kirsten also shared
what she had learned. I think this will be a good
thing for all of us. Looking forward to upcoming
weeks at church.

This morning prior to church I noticed Jared's
bottom front teeth looked crooked (which is
unusual for him). I felt them and they are both
loose. Man oh day, he is getting ready to lose
his teeth already. At first it worried me, like
is this normal? Then I thought, yes it is. Kirsten
lost her first teeth at 5 years old and he is 4 1/2.

He asked me if I could pull them out for him? I
told him "no, he would have to wait till they
came out on their own" He then said "if they
do not fall out by my birthday (which is not
till June) will you pull them out?" I reassured
him when they were ready they would fall out.

I think he is excited about losing his teeth so
he can be a "BIG" boy like his sister. Oh, how
cute.

Today the kids went to a birthday party of my cousin's
daughter, Jackie, she turned 8. So we have been birthday
partying it up this weekend. Happy Birthday Jacklyn.

I actually had the opportunity to go see an old
friend today that I use to work with at the hospital.
She has a new baby and his name too is Jared. What a cutie
he is. We had a really nice visit.

Tonight the kids are spending the night at Mike's
sister's house (Linda). Good night and sweet
dreams to you all.

well it is time to go to bed. Good night all.

Connie

Wednesday, January 11, 2006 4:03 AM CST

Hello all,

Last night we took the kids to the farm
show in Harrisburg. Saw loads and loads
of animals ie, chickens, ducks, geese, cows,
horses, sheep rabbits and so fourth.

I think the kids really liked it. Jared
was all for it from the git go. Kirsten was
not to keen on going at first. The other
year when we were there, she could not stand
the smell of the place (smells like a barn
yard, of course). So when we first talked
about going she did not want to go but she
then changed her mind and went along.

They had cages on display that held the
shavings from sheep. Jared saw them and
said, "Ahhh, poor sheep" I think he thought
at first it is was sheep lying in there
not moving or else he meant the sheep
being bald.

The baby chicks were a big hit. We watched
and watched hoping to see a chick break its'
way out of a shell. But no such luck...still
enjoyed watching the baby ckicks that were
hatched. They were cute.

Here is my baby chick...I know he is a big one!

We watched some horse back flag racing in the
arena. Kirsten loved it because in the race
for kids under age 18 the winner was a girl
in 2nd grade who's name was also...........
Kirsten. She kept looking back saying, "her
name is Kirsten too."

This is a pic of a realy "fluffy" bunny we saw. When it's head was
tucked down we could not even see it's face.

The kids were so excited they got to pet this horse....

Overall we had a great time and tolerated the smell pretty well too.

I know there all alot of kids heading off to scans this week
and you are all in our prayers that
the scans are clean and clear.
Good luck!!!!

.

Sunday, January 8, 2006

I wanted to share some terrific news with everyone.
Last night my sister-in-law (Laurie) called and told us that
our niece, Brooke, who is 13 took our article that
was in the Sentinel to school and a couple grades
have decided to do a fund raiser for”Lunch for Life”
at school by picking a day and giving up their lunch
money for Lunch for life. Is that cool or what?!?!?!

The school district is South Middleton which is also
Mike and I's alma mater. We are thrilled. They were
thinking maybe the local paper would again do a
follow up to the original story to add what one local
school is doing to help. I think it is a great idea. I will
have to call the reporter tomorrow to give them a heads
up and run it by them to see if they are interested. I hope
they are.

Thank you Brooke, we appreciate it.
How thoughtful too!

The day they donate the money they would like Jared to
go to school with Brooke, which is fine with me.
Great idea.

We will keep you updated on when and what is going on.

Saturday, January 7, 2006

Hello all!!!!

Yesterday Jared had a great day. He went to
the movies with my mother-in law and sister-in
law and loved it.

Mike and I just hung out and went to lunch
with my mom. A nice adult lunch without kiddos.
Seemed strange without them.

Kirsten was so excited last night. She had the
opportunity to spend the night at a friend's house.
Which she was tickled pink about. She loves to
spend time with Laura.

Laura has a little brother Jared's age so it is
nice. When we took Kirsen over (which is right
down the street) the girls took off upstairs to
play and the boys played Thomas the train. They
to have loads of fun together.

Meanwhile, us two moms relaxed and had a glass of
wine and chit chatted about anything. It was a
nice and relaxing evening. We talked about fund-
raisers we can do this year for lunch for life.
She and I are full of ideas.

I know I will drive Mike crazy. He thinks it is
great to do it but with being a full time worker
and mom, I think he is ready for me to calm down
a bit. I will, someday.......

In February Valerie Pritchett (with ABC 27 news)
is going to do a piece on Lunch for life so we
were thinking it would be great if we could
come up with a fundraiser idea prior to that
for her to advertise on the news. We talked
about spaghetti dinner, dance and all kinds
of things. I spoke to her (Valerie)today and
it is a definite GO! Have to really think
what to do and fast to get it organized by then.

It is amazing how any complaint continues to
freak kme out at times. Thursday night the kids
went to bed at 9pm and at 10pm Jared was still
awake but being a good boy and laying quietly
in bed. When I went up and saw he was still
awake, I let him get up and come downstairs with
me. He said, "my legs hurt" I of course said,
"where" and he said "everywhere". At first I
felt my panic rising then I thought, wait now
we have been walking every evening the past 3
days and he is just probably sore from the
change in our activity level. And I am sure that
is probably it. No further complaints so we
shall see but that was probably it.

Jared and daddy ended up staying up really late.
Not me, I went to bed at 11:30pm and I still
heard them downstairs carrying on. They were
doing "head fights" which Jared usually wins
because his head is as hard as a rock. They
were wrestling and acting crazy. Boys will
be boys and that is all I can say about that.

I must share a story with you about our walk
the other night. So, here we are walking, running
or whatever and Jared bends down and picks
something up (now of course it is dark out,
except for the occasional street lights and
the flashlight we are carrying). He says "what
is this" with something in his hand. I look
and say, "drop it,it is dog poop" It was so
gross but funny. Guess it was a from a
constipated dog that it was hard and easy
to pick up. Now it is a big joke that we tell
Jared, "we will only take you for a walk if
you stop picking up dog poop" he gets a little
annoyed with us. But it was so funny because
he was pleased to have found something, not
knowing what it was. I know strange sharing
my dog poop story but boy did we all laugh
about it, well I am lieing, Mike, Kirsten and
I laughed, not Jared. Someday he will see
the humor in it too, I think.
This is a time when hand sanitizer would come in great use!!!!

Well, I have to work today so better go get
ready. While my hubby and little guy sleep
snuggly in their beds. Sweet dreams......

See ya later.

Connie

Thursday, January 5, 2006 5:21 PM CST

Kirsten was so so excited today.
she had taken the article from
the Sentinel into school to
share and 3 other people in her
class had brought it in too. She
was asked to go up to the front
of the class and tell about it.
Which she did. She had heard
my "speech" for over a month now
so I am sure it was not hard for
her to explain.

She said she felt "like a movie
star or something" all with a
huge smile on her face. What a
sweetheart she is. Gotta love
her. Which I do for sure!!!!

The Patriot is planning on running
their article on January 24th. In
the Metro section. So we have a
few weeks till then.

I still need to call Valerie Pritchet
back. She said to call in January
and she would do a story on "lunch
for life" in February. So, I need to
call her tomorrow. Today was to busy
at work that I did not get a chance
to do so. Tomorrow I am off, so that
is perfect.

I sure do hope the awareness generates
donations to "lunch for life" though.
That is the main reason for doing it
all. It is well worth it though, it
is rewarding just getting the word out
there and it is even more rewarding
when I see the $$$ increase on the doantions
to lunch for life.

Since December 1st, they have raised over
$123,000.00 THAT IS FANTASTIC!!!!!

Jared and dad had a quiet day at
home today. Boys "special" day. Tomorrow
I think Jared will go to day care and
dad and I will have a "mommy/daddy" day.
Or at least that is the plan.

Tomorrow night we have to get in
gear then and start our girl scout
cookie sale. We have not even started
yet, so tomorrow is the big day. Kirsten
is anxious to do it.

Thank you for stopping by and please
share this information with others so
they to can help.

Connie

Wednesday, January 4, 2006 7:34 PM CST

We want to thank the Sentinel for
helping to support Lunch for life
through public awareness.

They did a great article in
tonights paper on Jared's
battle with neuroblastoma.
And how the community can
help find a cure.

I am hoping the article makes
people want to help.

If you copy and paste this link
it will take you to the article
on the Sentinel's web page:

http://www.cumberlink.com/articles/2006/01/04/news/news07.txt

We want to sincerely thank
Tina McIlhenny and Jennifer Marrs
who took the time to investigate
the story for printing and to Jason
Minick for taking the pictures.
(P.S. the kids loved seeing their
picture and hearing their quotes
in the paper). Mike and I appreciate
the public awareness. Thank you
for taking an interest.

Connie

Monday, January 2, 2006 6:33 PM CST

HAPPY 2006 EVERYONE !!!!

As we enter into a new year it
makes me think it is time to stop
and reflect on the past year:

It has been 2 years and 5 months
since Jared has been dx with NB.

Jared has been off treatment for
1 year and 2 months.

Jared has been NED for 2 years.

As of now, Jared has no long
term side effects of treatment.
(hearing is normal, growth is
amazing, energy level is astonishing
and so forth).

Jared is growing into a little
gentleman (when he wants to act
that way, that is).

Kirsten has graduated from kindergarden
and moved onto first grade.

Kirsten can now read books to us
at night instead of us reading to her.

Kirsten does "kid" writing that
we can actually read.

Kirsten can add and subtract math
problems.

Kirsten is turning into a very nice
young lady and a very big
helper for mom and dad.

We truly had a great year with a ton
on great memonts made for us to
remember and enjoy forever.

And so fourth........ I could go on
and on and on.......

Mostly I can just say I am happy that
we are all here and we are all healthy.

We truly are blessed to have Jared
doing as well as he is. May we have
as good of a year next year for health
and good fortune.

We would also like to thank everyone for
their continued support and prayers.
We could not do it without you all.

We love to read the messages in the
guestbook. Keep writing them and we
will keep reading them. Thank you.

Wanted to share some more great news
about LUNCH FOR LIFE...

1) The Patriot news will be coming out
to retake our picture and then later
this week ( I am thinking) they will
be doing a story on NB/Lunch for life.

2) The Sentinel was here today and took
family pictures to add to the Lunch for
Life piece they will be publishing in
the paper. I believe their article will
be in the paper tomorrow night (1/3/06).

I want to thank both papers for allowing us
to spread the word about Neuroblastoma and
the great cause "Lunch for Life". We are
thrilled that you are willing to help get the
word out in the public. We look forward
to reading each piece.

I would also like to thank everyone again
who donated to Lunch for Life in Jared's
name:

Cristine Bryan
Sunshine Conyer
Kathy Hershey
Dee Richards
Mary Ann Durain
Bruce and Jane Faircloth
Karen Faircloth
Carol Finkey
Cynthia Franklin
Wendy Gibbs
Mary Griffin
Tom Hamilton
Colleen Kashino
Barbara Killian
Charlotte Krempa
Doreen Maisano
Tina MeIlhenny
Gary and Mary Mentzer
Tony and Tina Minio
Tiffany Neal
Sarah Rockwell
Pete and Helen Rollason
Lori Schlegel
Rebecca Spangler
Alice and Paul Strayer
Jared and Mike Strayer
Kirsten Strayer
Laurie, Paul and Brooke Strayer
Linda Weaver
George Yatsky
George and nancy Yatsky

And thank you to everyone else
who gave to Lunch for life in
honor of other children. What
a great cause and worthy cause.

Connie

Friday, December 30, 2005 8:02 PM CST

The gastro intestinal bug has
hit our house today. Daddy has
the "sickies". I have to share
a story with you.

I went to work today and when
I called home around 10 a.m.
Kirsten answered the phone and
told me that daddy was in bed
because he was sick.

She told me,"Don't worry mommy
I am in charge today. I am taking
care of everything." She then
elaborated to tell me she made
Jared a snack, "his favorite, a
bologna sandwich with mustard."

She was so proud of herself. She
was the "lady" of the house and
had things under control.

When I came home from work the
kids were playing and Mike was
downstairs laying. Kirsten
had given him a bell so if he
needed anything he could ring
it and Kirsten would come running
to give him assistance.

Kirsten must be practicing to be
a nurse (like mommy) when she
grows up. Daddy said she was his
"big" helper today.

Hopefully daddy starts feeling
better soon. We have a busy
weekend planned of house work and
running around (item returns/shopping).

Hope he keeps it to himself. We
do NOT want those bad germs.

Yesterday I did not feel sick but
also did not feel 100ither.
Maybe I gave it to Mike but he
was effected worse then me. But
then I do usually have a great
immune system. Working in
nursing I have probably been
exposed to so many germs that my
body is use to it. Hope mike feels
better soon.

Imge

Connie

Wednesday, December 28, 2005 8:33 PM CST

I want to thank The Patriot News
for coming over tonight to do an
interview and picture. I am really
trying to get the word out about
NB. And what better way to do that
then the through the TV and newspaper.

The article will be published sometime
after the new year. I will let everyone
know as soon as I know a date.

Thank you Mike and Matt for taking the
time to come over and help me get the
word out about neuroblastoma and Lunch
for life. You are very appreciated in
our eyes.

Hope the picture comes out ok. Boy
what a picture it will be..........
I had just walked in the door from
work after a stressful day(not
exactly looking my best)
and Jared has a big scratch on his
face from a toy helicopter accident
(he was playing with a friend and
ran into it).

And Kirsten wanted
so badly to be in the picture but
the main focus with Jared and I. I
know Kirsten will be upset
if she is not in the picture when
it is published. All you people who have
a child who went through treatment
I know you know what I mean about
how you have to always include the
other child. It is hard for them too.
So, that being said, I hope Kirsten
is in it.

When they posed us they had jared and
I together with Mike and Kirsten
behind us, so I do not believe they
will be in it. I am planning on calling
them today to ask about a retake because
Kirsten will up upset and Lunch for
life really has been a big deal to her.

I hope the Patriot does not think this is
an unreasonable request and I hope this
is something they can do because
Kirsten and all of us have been
through neuroblastoma and it has
effected all our lives in
one way or another.

If you visit Jared's tree you will see
Kirsten and Jared donated. It is a funny
story. Last night, Kirsten comes down
while I am on the computer with her
pocketbook and hands me $10 which she
wants me to donate to Jared's tree.

I said you don't have to do that honey.
She says," I want to, doesn't it help
kids?" I told her it did and so she
told me she wanted to donate it. So,
we donated $$ in her name. Then of
course, Kirsten showed Jared her name
under the tree and he wanted to give
too. Then Kirsten said we needed to
add daddy's name too, so we donated in
Jared's and daddy's name together.

Now everyone is happy and everyone in
our house has their name under Jared's
giving tree. That was so nice and
considerate of her. (My speech on
Lunch for Life worked). Just kidding.
Thank you Kirsten for being such a sweet
and caring little girl.

I would again like to thank everyone
who was able to donate to Lunch for
Life. We do appreciate it and I know
all the families effected by NB really
appreciate it. Thank you again from
the bottom of my heart.

Mike and the kids are enjoying there time
together this week. Mike is layed off
of work until January 9th. So this week
the kids are staying home with him during
the day. Kirsten goes back to school on
January 3rd and Jared will probably go
back to daycare. We are paying for it
whether he is there or not so he will
probably go next week and Daddy can have
some "quiet" time.

Have a Happy New Years. We are planning
on staying home and seeing the new year in,
I think. We may go to a neighbors house,
not sure yet. They have 2 kids that go to
school with Kirsten. We will have to wait
and see.

Thank you for visiting. Leave a message in
the guest book so we know you stopped by.
Even if you just say hi.

Connie

Monday, December 26, 2005 6:11 AM CST

Fox 43 did air the interview
with us on 12/24/05. Below
is the written transcript of
the part showed on the news.

I thank you Fox 43 for all
your work and time put into
doing this and making it
happen.

Now, I hope there is more
awareness in the community
about NB and lunch for life.

--------------------
Lunch For Life
--------------------

December 24, 2005

MIDDLETON TWSP -- Christmas is
the time for giving and how
about giving up just one
lunch for a good cause

At the Strayer's house in
North Middleton Township
they're ready for the
holiday.

They've decorated the tree,
and the kids have made sure
Santa knows what they
want for Christmas.

"A new CD player that will
not break like my two other
ones," said Kirsten Strayer.

"Power Rangers Two and a
pretend Power Rangers gun,"
said Jared Strayer

Wish lists that should be
easy for Santa to fill -
considering what this family
has been through.

"It was really difficult,"
said Connie Strayer. Connie
Strayer is talking about her
son Jared's battle with
neuroblastoma -an especially
deadly form of cancer that
strikes hundreds of kids each year.

He was diagnosed two years ago,
and went through 5 rounds of
chemo after surgery removed
a tumor from his belly.

"They cut it out with a knife
and they threw it in a trashcan".
said Jared

Now Jared's in remission, considered
"healthy" and his mom knows
they're lucky.

"I've seen other parents who have
not been as successful as we have and I
just hate to see that," said
Connie Strayer, parent.

That's why this Christmas - she's
speaking out about a special charity.

It raises money for neuroblastoma
research and all you have to do
is miss a meal because "Lunch
for life" asks people to donate
one day's lunch money with one
purpose in mind.

Kids like Jared,who may one day
need the valuable research to
end this deadly disease.

"That's the goal - the goal
is find a cure," said Connie Strayer,
parent.

Because neuroblastoma is so
rare research into the disease
is often underfunded.

But all of the money raised
through lunch for life goes
directly to neuroblastoma research.

If you'd like to donate, check
out their website, lunchforlife
- dot -org.

Copyright (c) 2005, WPMT-TV, Harrisburg

--------------------

This article originally appeared at:
http://fox43.trb.com/wpmt-122405-lunchforlife,0,4045709.story?coll=wpmt-home-1

Visit FOX 43 online at http://www.wpmt.com

The kids were thrilled to be
on TV. They loved it so much,
especially Kirsten.

Christmas was great at our house
yesterday. Santa was to kind.

Kirsten received her favorite
requests: CD player, polly pockets,
barbies, and so much more.

Jared received: Power rangers, bat man
and a bat mobile, Hess truck and so
much more too......

They had a really good Christmas and
the best part was we are all healthy
and doing well and able to spend
the holidays together.

Yesterday we went to my dad's then
my mom's house for lunch.

This is the kids with my dad and Jane

This is the kids with my mom (Grammy K)
And when we arrived back home
the kids just played and
played all day until bed
time.

I hope everyone had a terrific Christmas.
I know we did.

Thank you for stopping by to check in
on us.

God bless and take care.

Connie

Saturday, December 24, 2005 5:03 AM CST

On Christmas Eve santa always
stops by to see us at home and
deliver a few presents to the
kids. Here is a pic from that
happening.

The kids are so anxious for Santa to
come tonight. I do not know if we can
get them to go to bed or not. We shall
see.............

Tonight is suppose to be
our big night to be on the
10 pm news on Fox 43 (channel
5 in our area). We are so
excited about this and proud
to be part of bringing NB
awareness to the forefront
in our community.

Katie we want to thank you for
the Christmas presents. The kids
love them and me being the
chocoholic I am love that too.
You are always so thoughtful
and always remember the kiddos

Katie was our sponser from
THON last year. We will greatly
miss seeing you this year as you
go out and finish your schooling.
Spain will be great. We want to
wish you loads of fun and a great
learning experience.

Last night we went to a sing
along at Mike's sister's house.
It was great. The kids had a
blast singing Christmas songs
with the player piano. Thank you
Tom and Linda.

Today we are having our Christmas
with Mike's family. It should be
fun with all the kids together
again.

Have a great Christmas.

This is Kirsten "sporting" her
Christmas hat she made at her
Christmas party at school 12/22/05.

Connie

Thursday, December 22, 2005 4:13 AM CST

Last night Fox 43 did come over
to interview us for "lunch for
life". They will call me and
tell me when it will be aired.
They are thinking either Christmas
Eve or Christmas at 10pm. When I
find out I will let you know.

The kids absolutely thought it
was great. They were on best
behavior for the most part. There
was a point where the old "poopie
head" terminology was used by a
little boy I know. This was not
while being interviewed though it
was afterwards and directed
toward his sister. The reporter
just laughed and repeated it and
told Jared she never heard that
before because the exact words
were "bat poopie head". It was ok.

One thing I must say is that
it was kind of hard to talk
about the negative aspects of NB
with the kids sitting there
listening to me. I had to watch
what I said and how I worded it.

So I could not use words like "die"
in my interview. Had to tip toe
around it by saying "not survive,
not make it, poor prognosis" and
things like that.

Even though NB can be a horrible thing
we never talk about that in front of
the kids. We stay positive in front of
them because Jared is doing good and
has minimal side effects from treatment.

Plus I would just not want them to hear
the bad stuff. Not yet and at their ages.
Do not want my kids to worry. We
told them we are doing this because some
kids with NB are not as lucky as Jared
and we need to get the word out so we
can raise $$$ to help make them better.

That is something they understand and
is not scarey to them either. They
were actually more then eager to assist
me in my task.

They had it all practiced and knew what
to say. "Give money to lunch for life
and help save children".

So that was how our night went. I
am excited to see how they piece it
together to air. We will tape it to
keep.

Thank you all for checking in and
participating with Lunch for life. I
know not everyone is able to give or
have already given to other worthy
causes and I thank you all for that.

My one neighbor gave to Caringbridge
which is another great charity. If it
were not for caring bridge I would not
have this free website. What a great
thing to do. So again, thank you all.

I have two more requests. My friend (Jamie)
and her son (Brandon Loose) need some extra
prayers right now. Brandon recently had scans
and something showed up on his liver on his
MIBG scan. They are in the process now of
scheduling more scans/biopsy to determine
what it is. Please say an extra prayer for
them. A link to Brandon's website is below.

Also at this time of year I always think about
my great friend Kim Mease. Michaela gained
her wings in July 2004. she had NB too.
Michaela's birthday is coming up here
tomorrow on the 23rd.
If you get a chance stop by Michaela's
page using
the link below and add a note to her
guestbook
for Kim and Dave. I'm sure they would love
the support.

These are both kids we were treated with at
Hershey Med Center and are very important to me.

Blessings,

Connie

Wednesday, December 21, 2005 5:40AM CST

Today is the big day for NB awareness.

Assuming their is no earth shattering
breaking news story tonight then Fox 43 is
coming over to do a news clip on "Lunch
for Life". So, we are hoping all pans
out well. I am not sure when it will be
aired. As soon as I know, I will pass the
information along.

Jared went to the dentist yesterday to
finally get that "cracked" molar repaired
for good. Mike and "Grammy Strayer" took
him in. They give him "sleepy" medicine
prior to performing the procedure. All
went well. They ended up doing a repair
and a crown on his tooth. This is a
tooth he will have till about 12 years
of age.

Last night we looked at his tooth for
the first time since the repair and were
shocked to find the shiniest silver tooth
ever in Jared's mouth.

We were not expecting it to be silver,
guess we just assumed it would be white.
Nonetheless, it does not matter. It is
in the back and is irrelevant in the
whole scheme of things.

We assisted Jared to check it out in
the mirror and kept telling him how
"cool" his shiny silver tooth was.

He is now so excited about his "special"
tooth that he was showing everyone it.
He is excited to go to daycare today
and show off his new "tooth".

Should we be proud of a "silver" crown
at the age of 4???? Yes, why not!!!
I just hope this is not the start of
many more dental issues to come.

Jared still has some other dental work
that needs done so we will see.......

Kirsten is doing well. A little shaken
up last night........

Our neighbor of 13 years passed away
yesterday. It was expected and anticipated
but still shocking. He had hospice on
board since the weekend. I know it has
to be hard for them. They have 4
children Mike and I's age. Will be keeping
their family in our prayers. Anytime to
lose a loved one is difficult but especially
at the holidays.

When Kirsten came home from school yesterday
and Mike told her of him passing away
she just started crying. Kirsten has not
experienced anyone she personally knows
passing away that she remembers.

My grandmother passed away when Kirsten
was 2 1/2 and she remembers "Grammy" but
not the part of her passing away. Which
is a good thing.

Please keep all the people who are fighting
NB and all the people out there who have
lost a loved one in your prayers.

Well that is it for now. See you later.

Connie

Monday, December 19, 2005 9:00 PM CST

I am really trying to raise NB
awareness in our community. I
have an interview with a news paper
next week and I potential interview
with a News station Wednesday. I
will find out tomorrow for sure if
it will materialize or not.

Lunch for Life has become my main
reason for being lately. It is my
goal in life. To raise awareness and
research money.

I have made up flyers and gave them to
everyone I know (literally). It is
so very very important to me.

I will update as I know more info.

This weekend we took the kids sledding.
They had a blast. The snow was perfect
for it.

Today I went to Kirsten's Christmas
concert at school. The 1st graders
sung the song "All I want for Christmas
is my two front teeth." It was cute.

I video taped it because Mike was
unable to get off work to attend. We
watched it afterwards and it was funny
to watch them.

Mike, Kirsten and Jared went to Kirsten's
girl scout Christmas party tonight. They
had a great time. Played lots of games
and exchanged presents.

I went to a Christmas party for work
at Sunnyside. We played a cool game
of exchanging and trading presents. It
was so nice that we all could get
together and have fun like that. And
the food was great too. (Great pick
Helen).

We have a busy week coming up......
Christmas shopping to finish
Kirsten's party at school on Thursday
Christmas sing along Friday
Getting together with Mike's
family on Saturday
Christmas day on Sunday

I want to wish everyone a very Merry
Christmas and a happy new year.

Connie

Wednesday, December 14, 2005 7:55 PM CST

I am so so happy to say
that this month is 2 years
for Jared being NED or No
Evidence of Disease!!!!!

I remember it like it was
yesterday.....2 years ago in
December Jared had scans done
pre-transplant and was found
to be NED!!!!

That was really the happiest
day of our lives. The best
news we ever could have heard.

I must admit, I still feel that
way after every scan is completed.

Scans make me nervous but oh so
happy when all comes out well.

We are truly blessed and so so
lucky to be where we are today.

Two years ago at this time we
were preparing to go through
our first stem cell transplant
at CHOP.

Wow, how great life is.

Tell someone you care about:

...how special they are
...what they mean to you
...that you love them
...and etc......

We all need to appreciate
each other just a little
bit more at times.

On that note I am going to go.

Thanks for checking in on us

Connie

December 16, 2005

I wanted to thank Sarah and Holly
from Penn State THON. The kids
love the game (Hullabaloo) you
sent them for Christmas. That
was very thoughtful of you all.

I do not have your addresses. I
have Sarah's e-mail but not Holly's.

I want to tell you something.
Besides liking the game they love
the Fed Ex box it came in. They
put holes in the top front of the
box for them to see out of and holes
on the sides to put their arms
through.

They are having as much fun with the
box as they are with the game.

Here are some pics of them opening
the box and posing with the present.

(opening the present)

(posing with present)

We have had a lot of fun playing
the game. Great gift and thank you
again for your thoughtfulness.

Connie

Friday, December 9, 2005 10:46 PM CST

LET IT SNOW
LET IT SNOW
LET IT SNOW
AND IT DID!!!!!

Our first big winter storm. How
exciting. We have 8 inches of snow
everywhere. It is beautiful.

My favorite thing is to see the
Christmas light decortions lit up
with the snow glistening all around
them. One of the most beautiful
things I've ever seen.

The kids loved it. We went to one
of Kirsen's friend's house today and
spent all afternoon. The kids just
played inside then went out and played
in the snow. They had a great time.

While the kids played, Tina and I
spoke about "Lunch for life". She
writes articles for the local paper.
She is going to submit it to the
editor to see if they are interested
in running a story on it.

Tina was so excited. After we came
home she called to tell me that she
was reading all the information that
I printed for her off the "lunch for
life" web site and she was so moved.
She wants to get together again to
talk about other fundraisers we can
do this coming year for "lunch for
life". That will be great. I am all
for it.

The task of fundraising by myself
overwhelms me (I must admit). But if
Tina and I can work together to plan
future events that would be terrific
and grealy appreciated. So, we will
have to get together and make some
future plans.

I have really been pushing fundraising.
I have dropped information sheets off
at businesses and other organizations
and I still have more I plan on working
on this weekend.

Thank goodness Mike went to work this
morning and found out they were laying
people off for the day and came back
home because I worked 10pm last
night till 6am this morning. The snow
and no school really through a glitch
into my sleeping plans today but since
Mike did not work it worked out well.
When he unexpectedly showed back up
at home at 7:15am I was thrilled.
I was then able to go to bed vs. thinking
after being up all night working
I was going to have to try to stay up all
day with 2 little ones. What a blessing.

We are planning a relaxing weekend. My
only plans are playing in the snow, making a
gingerbread house and going to see Santa.

(UPDATED PICS 12/10)

(The kids starting to decorate their
gingerbread house)

(The end result, They did a fantastic job
of decorating it. Looks good enough to eat)

We need to hear what the kiddos want for
Christmas. Santa has not started shopping
yet here. But will soon. I'm being a
procrastinator.......

Everyone have a great weekend and enjoy the
snow (if you have any). And thank
you for stopping by.

Connie

Wednesday, December 7, 2005 9:00 PM CST

I want to thank everyone who has donated
to Lunch for Life to raise money for
NB research.

I can not begin to tell you all how much this
truly means to me and every
family effected with neuroblastoma.

Ever since Jared has finished treatment, I have
wanted to plan some sort of fund raiser
to raise money for NB. With me being a full
time mom and worker it just has not happened.

This Lunch for Life campaign with the Giving
Trees is perfect. I love it.

I plan on doing more advertising for Lunch for
life and hope to find more peopleable
to donate. I know not everyone is able
to or has already contributed so much
to other organizations and I can appreciate that.

Those of you who have donated in
Jared's name and other children's names,
I want to sincerely thank you from the bottom
of my heart. I am so touched that you would
take the time and effort to do that. Your
caring is appreciated more then you will
ever know. Because NB research and just
anything having anything to do with NB has
my full attention. I realize this
is not for everyone, but I think it is great
how much money has been raised so far.

All the kids on the Lunch for Life
giving trees are doing a great job with this task.
It makes me feel so special to have such caring
friends and family members. We love you all
and thank you again!!!!!!!!! Besides being blessed
with 2 healthy kids right now we are also blessed
with you all. I mean that too. Could not ask for
better people........

I am going to stop now because here I am sitting
with a computer screen typing and crying......If
someone were to see me they would think what is
wrong with her? (Need to pull myself together now).

((((Hugs to all))))

Connie

Monday, December 5, 2005 3:56 AM CST

We had a terrific weekend. First
off, Kirsten and I were busy on
Saturday.

We went to a baby shower
in the morning of a friend of mine.
Tara you look great!!!! Tara is having
a baby boy very soon. It was
great seeing you all again.

Saturday afternoon Kirsten and I
went with Girl Scouts to see the
Nutcracker ballet in Harrisburg.
There was about 15 girls who went.

After the show they all went downstairs
and the people from the ballet were
there to show them dance moves so
they could earn a try-it for scouts.
The girls had alot of fun.

Yesterday we went to the Four
Diamonds Christmas party. It was at
the Hershey hotel and lodge. The
kids had a blast. They did alot of
singing and dancing and just plain
having fun.

This is the kiddos with Dr.Freiberg
(his oncologist from Hershey Med Center)

Santa was there for them to see. One
thing that was really funny was when
Jared saw santa. Instead of telling
him what he wanted for Christmas he asked
him,"How can you see everything we do?"
Santa told Jared he uses video cameras.
That was all Jared talked about on the
way home. It was funny. He is now looking
around to find the "video cameras". But
he has not found them yet.

We saw a family we met in treatment.
Their son also had neuroblastoma. His name
is Eric Brady. He is doing great and
looks good. It was so nice to see Tammy,
Tom, Emily and Eric again. (I will e-mail
the pics we took as soon as I get a chance).

Yesterday when we woke up we had about
1-2 inches of snow. The kids loved it.
Of course we went out to play in it right
after breakfast.

Ronnie's family keep
looking for snow. They are in California
now. His site it caringbridge.org/ca/aarons.

Please keep Kolton Appleby in your prayers.
He is heading to CHOP this week for scans.
His site is caringbridge.org/pa/koltonappleby.

Remember to check out the Lunch for Life
site and make a donation if you are able to.
The money goes to a great cause----NB
research.

Connie

Monday, November 28, 2005 5:09 AM CST

Yesterday we did the "Annual family
Christmas tree hunt." We go out to
a tree farm and cut down our own
Christmas tree.

The kids had a blast and the weather
was perfect yesterday. Cold but not
too cold.

When we arrived we were given a saw and
then taken on a wagon hay ride and
dropped off to find a tree to cut.

Of course you can not cut down a tree
till you have looked at EVERY tree on
the 50 acres. (Now that is only a joke,
but feels real).

Kirsten found a tree immediately when we
arrived and Mike said, "No, you can't
pick a tree yet. We have to look at all of
them then come back an hour later and cut
this one." (Being sarcastic of course).

After looking at 100's of trees we did finally
pick a tree. It was 10 foot tall. It was
a beauty.

Mike proceeded to cut it down

Of course we had to cut some
of the bottom off......

so we would be able to fit
it in our house.

We then had to drag the tree back to the place
so it could be payed for and hauled home. It
was a heavy tree too. Thank goodness for Mike.

That tree is the "jaggiest" tree I ever touched
in my life. A beauty but "ouch" when touched.

So, last night we came home and decorated our
tree. The entire family. Well, Jared put
some ornaments on but not too many because it
was too "jaggy".

It is a beautiful tree.

Last night Mike and I were freaking out.....
After we put the tree up Mike had to dispose
of a small black hairy spider crawling on
the ceiling. I later had to also. Then.....

We were sitting there watching TV with the
christmas tree lights on and all of a sudden
I saw a huge shadow that looked like something
crawling on the tree. The shadow made it look
as big as a cat. I knew it could not really be
that big because obviously, if it was, the entire
tree would be moving and it was not moving at
all. Here there was a spider crawling on a light
and of course the shadow was so distorted. It
was only a little black hairy spider. UGH!!!!!

Now we are thinking. Ok, where are all these
black spiders coming from. Is there a spider
nest in our tree??????

So here we are shining a big spot light on
the tree. We did end up only finding 2 more
spiders and we sucked them up with the shop
vac because these things were tricky and
could jump.

I went to bed last night thinking about the
movie Arachnophobia....I pictured spiders
crawling everywhere. How gross......

This morning when I got up the first thing I
did was check out the tree and ..........saw
NO SPIDERS!!!! Hooray, maybe they are all
gone.

So that is our story of finding a Christmas
tree and putting it up. Now you know it all
and then some.........

Connie

Monday, November 28, 2005 5:04 AM CST

Mom and the kids on a hike last week

Dad, kiddos and Buddy. As you can see, Kirsten
is being a "little" grumpy.

Imge

Thursday, November 24, 2005 7:17 PM CST

Here are some pics today from
our Thanksgiving gathering. We
went to Mike's sister, Tina's
house.

Happy Thanksgiving. We are glad we
were all able to get together eat, have
fun and be thankful. We had a great
time.

Wednesday, November 23, 2005

First off I want to wish everyone a
very very happy Thanksgiving.

We certianly have many things to
be thankful for like: Our two
healthy kids, our health, family,
friends and loved ones, NED and so
so much more than I can actually
even sit here and type.

We will be heading to my sister-
in-laws in Maryland tomorrow for
lunch.

We are bringing the pies. My crust
making skills suck tonight. Kept
cracking and falling apart. I
finally gave up and called on Mike
and thank goodness he finished them
because I was not having an easy time.
He is a great pie maker (Go Mike go).

Jared went to the dentist last week
and his molar is obviously cracked.
He needs it repaired with a crown
applied. This is a tooth that does
not fall out till 10-12 years old.
He is getting it fixed on 12/08.

I took him to a dentist who gives
them "sleepy juice". I do not want
one of his first experiences with
a dentist where work is needed
to be threatening and painful.

Last night Mike and I went to
Kirsten's parent teacher
conference for school. We were
happy to hear all is going well.
Her teacher said she is such a
sweet girl and loves to help
other students.

Her only downfall is she sometimes
talks when she should not. Well,
all I can say is she gets this from
me. Miss blabber mouth....that is
me. So, guess it is ok.

She really is doing well and we
are really pleased with her progress.

Thank you for your continued support
and prayers.

Connie

I've been wanting to post these pics
for a while of the kids with their
Halloween pumpkins, so here they are.

Wednesday, November 16, 2005 7:09 PM CST

We are home!!!!!!

I AM THRILLED TO SAY JARED IS STILL
NED!!!!!

(NED= No evidence of disease) This is
what we wanted to hear.

Jared had the CT of the Abdomen
yesterday and the MIBG scan today.
They both look good. I spoke to
Dr.Grupp earlier tonight and he has
not personally seen the MIBG scan yet
but he said the findings were the
same as before with no change. Which
means CLEAR and NED!!!!! We will take
that anyday.

Jared had his hearing test and his
hearing is absolutely normal. No deficit
at all. The right ear showed very
minimal hearing loss but above the level
of hearing needed to hear words and
sounds. Which is great.

When we went to see Dr.Grupp he said one
thing strange about the hearing test is
usually hearing loss in bilateral and not
unilateral. Then he looked in his ears and
said that his right ear has an infection.
Was red and had fluid on it. So,
We are assuming that the minimal high
frequency sound loss that did show is
probably due to the ear infection and
not actual loss. THIS TOO IS GREAT NEWS.

We are so happy to hear this and truly feel
blessed to have things continue to go
so well. This visit to Philadelphia
has brought us nothing but reassurance
and relief. God must truly be watching
over Jared and us.

And thank goodness for Dr.Grupp who is
punctual with scan results too. Not having to
wait really cuts down on the anxiety time.
Usually we know the results before we even get
home because he calls us. Today it was a little
longer and Mike especially kept saying call him,
this is strange, he always calls us by now and etc.
I knew what mike meant but I also knew that DrGrupp was the
MD for the oncology unit this week and figured he was busy and
would call and tried to maintain a positive outlook.
So, to quiet Mike and my own uneasiness, I called him
and just by luck he answered.

Jared weighed 22 kg (which is about 48 pounds) and
is 3'8" tall now. He is literally
growing like a weed. We are pleased with his growth rate.

This morning Jared was poking his finger
in his mouth and said that his mouth
was bleeding. Noted he scratched his
gums with his nails. Also then noted
that his top back molar has a chunk missing.
That is strange. I made a dentist appointment
tomorrow for him. I can not recall if the
molars are baby or permanant teeth off
hand. Guess I will find out tomorrow...

I had asked Dr.Grupp about it because I have
heard people say about the long term effects
of cancer treatment and dental issues. He
said he has only seen dental issues with
kids which received total body radiation.
Which we did not have. I
don't know. Think it is strange that
his tooth just cracked and is missing though.
But this is a boy who can chew a lollipop
in 1-2 minutes flat. Maybe he cracked it
at sometime and then it just fell out.
Have to wait and see.

We had a good time in Phili although I did
not sleep well at all. We visited the nurses.
Or I should say I visited them. Jared hid
his head under the back of my shirt the entire
time. He acts so shy around them everytime we
visit.

Now with Dr.Grupp that is another story. Jared
teased and tormented the heck out of him. Laughing
and being devilish like you would not believe.
Jared always has a great time with him. He turns
into a little clown and gets so "goofy". He even
almost knocked him off his seat. He was sitting
there writing or reading something and Jared
kicked the bottom of his seat and when he did
his aim was so good that he unknowingly kicked
the handle that tilts the chair and it flew forward
almost making Dr.Grupp slide out of it . Thank
goodness he was not hurt. Jared just gets so
wild and crazy around him. I guess I did not handle
it well either. I was shocked and probably
should have put him on timeout or something
but instead told him not to do it again and told
him to apologize and say he was sorry.
I do not know what it is about the doctor. But
Jared just loves him and then he gets so excited
and acts like a "wild child". Oh well, no one was
hurt so no harm done.

Jared reminded him of the time when we were in
transplant he came to see Jared when he was in
the bathtub in the middle of a water syringe battle
with the nurses and he squirted Dr.Grupp in the pants
and it looked liked he had wet his pants. Jared
thought that was funny. Walking around with pants
that looked like he peed and had an accident.

Sorry this entry is so long. Thank you all for
your continued support and words of encouragement.
You all mean so much. I know someone up there is
looking out for us.

Love you all,

Connie

PICTURES OF JARED POSING AT THE RONALD MCDONALD HOUSE

Tuesday, November 15, 2005 1:42 PM CST

Back at the Philadelphia Ronald McDonald
house for the day.

Had a hearing test and looks
pretty good. Explain later in
detail.

CT scan done and read and nothing
abnormal showed up!!!!!

Met with Dr.Grupp and no concerns noted.

Hip Hip Hooray.

Had MIBG injection today and
MIBG scan scheduled for tomorrow
morning.

Update after that. Thank you all for your continued prayers and support. We appreciate you all.

Connie

Monday, November 14, 2005 3:58 PM CST

We are leaving for CHOP now for scans.
Update you when we get back.
Wish us luck.

Connie

Saturday, November 12, 2005 8:52 PM CST

Well we saw "The Incredibles" Disney
on Ice and the kids loved it. I liked
it but it is was differant them any
other one I have seen. Usually they
follow the story line of the movie but
this one did not. It was still good
though. The kids all received free
light up wrist bands and they loved
them.

Yesterday Jared and I went to school
to eat luch with Kirsten. She loved
us showing up. she introduced her
brother to everyone and was such a
sweet little girl. What a great big
sister. She really is my little
sweetheart.

Jared went to the doctors to get his
ears cleaned out before his hearing
test coming up this week. And
actually when we got there only one
ear needed it. Now we shall find out
if the high frequency loss is due
to "wax" or actual loss.

When we were at Philadelphia last time
the doctor indicated he thought
Jared's speech was differant. It is
so hard for me to tell. I understand
Jared fine usually. It is hard for me
to tell if it is hearing loss or just
normal 4 year old speech. So, this
time we will be able to tell if it is
developmental or a hearing issue.

Mike and I recall we both were in
speech classes in elementary school
and maybe that is all he needs too.

I work this weekend that way when I go
to CHOP this week it will be regular
days off vs. having to use vacation
time. It is great I can do that.

Time ot go get ready for work.

Thanks for stopping by.

Connie

Sunday November 6, 2005

Hello,

I wanted to add some more pics
of the kids from their Halloween
party at their school/day care.

this is Jared with his friends
from day care. Jared is the
Ninja Turtle.

Jared had a terrific time
with all his friends.

This is Kirsten with her friends
at school.

Kirsten is the one in the
pink dress on the far left.

Here is a picture of me dressed
as a "hippie" at Kirsten's
school Halloween party.

The kids are getting excited
to go see Disnsy on Ice,
"The Incredibles" on Wednesday
night. I am getting excited
too. It should be a blast.

Getting closer to scan time.
Only about one more week yet.

Going to CHOP November 15 and
16. Ready to have them done
and over with.

Have a good week and sign the
guestbook so we know you were
here to see how things are
going.

Please keep Jared in your prayers
for his upcoming scan.

I saw a shooting star last week.
And yes, I put my wish in.....

I am finally done with my American
Red Cross Instructor teaching class
and I passed. Hooray..............
Now I will be able to teach CPR/AED/
First Aid to employees at work.
This really had me stressed out.
I'm glad it is done and over with.
All that worry for nothing.......
Oh well just glad all the classes
are finally over with. To busy for
my liking.....

.....

Connie

Wednesday, November 2, 2005 4:34 AM CST

Halloween was terrific.

Us kids all went out trick or
treating Monday night. The
kids came home with tons of
goodies. They should be sugared
up for quite some time now.

The weather was perfect for
being out. It was a warm night
that night, at least to start.

We all dressed up as planned.
I think the kids really liked
that part.

Monday I went to Kirsten's class
at school for their Halloween
parade and party. The kids were
all great. It was funny, us moms
were talking and all the girls were
in light colors and all the boys
were in dark colors. I will have
to add some of those pics to the
photo album on the page.

I finally figured out how to use
my digital camera. It will be easier
now to download and add pictures
to the web page.

Have a great week and thanks for
stopping by.

connie

THE KIDS IN THEIR HALLOWEEN COSTUMES

Friday, October 28, 2005 9:34 PM CDT

Well Mike and I have both had
birthdays come and go. Funny,
I still feel young. (ha ha ha).

My birthday was great. The kids
surprized me with the most
beautiful Opal necklace. I love
it so much.

Last night we went out to dinner
with my sister-in-law and her
husband. It was good. We ended
up getting a free dessert, which
we all shared and the kids ate
most of. Thank you Tom and Linda.

Today I had off work. Hooray....
Jared and I went to Ashcombs with
the daycare gang. The kids had a
blast. We went on a hay ride and
they all played in a big pile of
hay.

Jared's favorite fall
decoration was a John Deere tractor
made out of hay and painted green.

I can't wait to see the pictures I
took. I took tons of them.

My CPR/AED/First aid instructor
classes are going well. Two
down and two to go. (YIPPY)
Tonight it was 6:30p - 10p and
tomorrow it is 9a-1p.

Thank you everyone for the guest
book entries and happy birthday
wishes.

Scans November 15 and 16 at CHOP.

Connie

Saturday, October 22, 2005 11:36 PM CDT

Today is Mike's birthday. Happy
birthday sweetheart. I must tell
you it was a great day. Basically
we slept till lunch (the kids were
at my mom's house), did nothing
and had a great day doing it. I was
the best wife ever today. I was at Mike's
beckon call.......

I was even so kind as to wash his clothes.
WALLET included....Everything in his
wallet has been cleaned and dried at
a hot hot temperature. This is including
his paycheck which now only looks like
light blue paper that was put through a
paper shredder then saturated with water
and dried by a blow drier at the hottest
temperature possible. Needless to say
his employer will have to be giving us
another check this week. Bet they will
love this story. Oh well.

So as you can see it was the best day ever.
I even cooked supper tonight for the family.
Cheeseburgers, tator tots and of course
boxed macaroni and cheese for the kids. Is
that a meal for a king or what? Actually,
it was what he asked for. We were going to
go out to eat but since the weather was
so yucky today Mike decided he just wanted
to stay at home and have the above meal.
Hey fine with me.

We did bake dad a cake. I made a water gate
cake. It is the one with the pistachio
pudding. MMMMMMMMMm....good!!! Bad for
me to eat, but good.

now Kirsten is counting down the days till my
birthday. Which is the 27th. Mike bought me
my birthday gift already. A digital camera
with the dock. Our camera broke a few months
ago and I have been using disposable cameras
ever since. So it will be nice when it is
delivered.

Have a great week and thank you for stopping by.

Connie

Thursday, October 20, 2005 3:54 AM CDT

Birthday time is upon us at
the Strayer house. Mike's
birthday is Saturday the
22nd and then my birthday
is the 27th. We will soon
be "caked out".

The kids are doing the
countdown to birthdays now.

The kids are getting excited
for Halloween too. Jared is
dressing as a ninja turtlle.
Kirsten is dressing as a
princess. Dad is going to
be the bad guy from the movie
"scream". I am going to be
a devil. We decided this year
we would all dress up. We
thought the kids would like that.

Next week Jared and his daycare
are going to Ashcombs for their
fall fest (which is a green
house) and going for a hayride.
I was able to get off work that
day so I will be going along.

Then the following week is Kirsten's
Halloween parade at school and
party. I will also being going
to this. I helped with parties
last year at school and loved it.
So, I am really looking forward
to this first party to meet all
the kids in her class.

We were planning on going to the
parade the other night but instead
Kirsten decided to go to a friend's
house to play. Jared only wanted to
go to the parade to get candy (which
they throw). So instead he decided
to just go to the store and buy
candy. That was easy for us.

Next week is another parade around here
so I think we will try to attend that.

They are getting excited for Disney
on Ice. We are going to see the
Incredibles on Ice November 9th at
Hershey. I love the ice shows.

I heard last night from a dear friend
that a little boy we met at Hershey is
back in treatment again. His name
is Tucker. We met at Hershey and his
mom was actually the one who told me
about Kim and Michaela Mease and speeded
up the introduction by giving me Kim's
phone number. Tucker is such a sweet
boy. Please keep him in your prayers.

If my memory serves me right they were
never sure exactly what kind of cancer
he had. I think it was some kind of
sarcoma but it was never really 100BR>identified.

I know it has been a long and bumpy
road for them. And all prayers would
be appreciated.

Thank you for stopping by.

Connie

Monday, October 17, 2005

It is official, Jared's scans have
been moved to November 15th and 16th
at CHOP. This works out well for
all of us actually.

With November 1st we would go trick
or treating on the 31st then up early
the next A.M. for a 2 hour drive to
Philadelphia. So this will be great!!

SUNDAY, OCTOBER 16, 2005

Scans are SUPPOSE to be November
1st and 2nd. Now something came
up at work that I need to be here.
I am going to try to reschedule them
tomorrow for November 15th and 16th
if I can. If not, then I'll leave
them the same.

Lately it just seems like there is
more and more going on at work.

Next week I have 4 classes in the
evening/Saturday morning to become
certified to train CPR/AED/first aide
to our employees. Presently someone
else teaches this to us but now I will
be responsible to do so.

This has been added to my job duties
at work, plus........

Now in November I have to get to classes
to be trained to train people to be
feeding assistance ie. activity workers
and etc.

All these things are good for us and
good for me to learn too. I figure the
more I learn the better off I am.

I am an RN and I work as a Staff Educator/
Assistant Director of Nursing in a
Nursing and Rehab Center with about 270
residents and over 300 employees.

I am not complaining about my job, just that
I am going to be busy the next few weeks.

Mike could take Jared to the scan appointments
without me, that is an option too. But I
really like to and want to go. If I can get
an appointment 2 weeks later then I will
probably do it and if not, then I will go
as previously scheduled and one of my
co-workers will have to go to the classes
in early November. So, we shall wait and see.

Had to vent...........

Things are going well here. School still going
well for Kirsten and daycare going well for
Jared.

Jared just had his picture taken at daycare
and Kirsten's picture day at school is this
week.

I am really starting to think about Christmas
now.....Wow, seems like it can not be that
time of year already but it is.

Lots of housework and things to do today.

Thanks for stopping by. See ya all later.

Connie

Tuesday, October 11, 2005 4:11 AM CDT

Found out today that we are going
for scans on November 1st and 2nd
at CHOP.

November 1st

CT scan
MIBG injection
Clinic appointment for labs and see Dr.Grupp
Audiology exam

November 2nd

MIBG scan then homeward bound!!!!

It will be nice to get one more set
of scans done and out of the way.

Monday, October 10, 2005

It is getting closer to scan time.
I am in the process now of scheduling
scans at CHOP for November.

Dr.Grupp originally only wanted us
to do an MIBG scan this time but I
just can't bring myself to do that.

Jared was never MIBG sensitive at
diagnosis. I asked again if we could
do an MIBG and a CT scan and he agreed.

Thank goodness he can be so easy to
work with. I think I will always
want an MIBG and CT scan every scan
time.

The kids love scan time because we
always go and stay at the Ronald
McDonald house in Philadelphia. They
love to stay there. It is like a
vacation away from home.

All is going well here. The kiddos
spent the night at Mike's sister's
house over the weekend and they had
a great time. She has a little guy
Nicholas who is around 8.

Have a nice Columbus Day everyone.

Connie

Sunday, October 2, 2005 0:35 AM CDT

Well, my computer crashed and was
not worth fixing. After 2 1/2
weeks I now have a new (used) one.
Hooray for me, I am back on line.

Things are going well here. Nothing
unusual going on.

The kids are doing great.

We took them skating the other night
and they had fun.

Kirsten looked like
she was running on skates. It was
cute. She was "running" vs gliding
her skates and had her butt sticking
out. Mike and I thought it was cute.
I wish we would have had our camcorder
with us to get it on tape.
I will tell you though, she has excellant
balance. Our plan is to try to go to
the skating rink and practice more.

Jared well he had difficulty standing
on his own at all. He loved it though.
Mike stayed in sneakers and took Jared
out in the middle to practice. We need
to just practice some more.

Kirsten is so strong willed that she wanted
to do everything by herself. She loved
the limbo and special skate programs.

Today Kirsten went shopping all day with
grammy K. Jared hung out with mom and
dad. He spent hours using the shop vac
to vacuum out our cars. Dad cleaned out
and Jared cleaned the carpets. He loved
it and it kept him occupied. He actually
did a good job too.

The kids have sticker charts for 4 things
( good behavior things and clean rooms).
Now they also get 25 cents for each sticker
they earn every day. So they each have the
potential to earn $1/day. Since we added
the money to the sticker chart it is amazing
how much better they are at earning there stickers.
They love the stickers and money and we love
no chaos. See it is a win/win situation for
both us and them.

Gotta go now.

Connie

Wednesday, September 28, 2005 2:23 PM CDT

Still no computer here. They are
so far behind
at the repair shop that they just
got to it today
and it looks like it may be a
problem with my hard
drive. They are going to try
one more thing then
call me back here at work and
let me know what the
deal is. Looks like it may be
easier to buy a new
computer. Will find out later today.

Things are going well here. Jared
had more immunizations
yesterday (five to be exact). His
poor little arms were
so sore. I am keeping him doped up
on Motrin. He looked
at me last night and said," I can't
even give you a high
five because my arms hurt from the
shots." Dad had the
opportunity to take him for them.
I am glad it was not
me. Oh how I hate that. Kirsten
went along with them
and Mike said she sat there and
cried while the nurse gave
Jared the shots. We only have one
more shot to go in February to catch
him up to where he should be. Thank
god for that.

Kirsten is doing well in school.
It is so cool. She now
reads books to us at night. I love
it. Her brain is
like a little sponge. She is
learning something all
the time. She loves to read and
be read to. She is
working on math addition and subtraction
and doing well
on her tests. We have 3 spelling
words a week for now.
She is really doing well.

Tomorrow night the kiddos and us
are going skating for
the school skating party. It should
be a blast. Kirsen
will be ok. Jared has never gone
skating before so it
should be interesting.

Kirsten joined Brownies. She goes
to meetings once a
week. I think it will be a great
experience for her.

Jared is developing more and more
dear friends at day
care. He wants to invite everyone
over for a "play
date". It is so cute. We are going
to have to set one
up soon for him and a little friend.

I love the weather since it is getting
cooler. The kids
actually wore pants this morning. I
love fall time. We
did some hiking last weekend again.
The kids love to
do it. We are going to try to stay
active this fall.

As soon as my computer is fixed or
I get a new one
(which ever the case may be). I will
stop by and visit
everyone. Miss the NB e-mail list
too. I am thinking about everyone and
hoping all is going well for all.

Talk to you later

Connie

Friday, September 23, 2005

I want to thank everyone for
visiting and giving words of
encouragement. As soon as I
get my computer back up and
running at home I will stop
by and visit. This is driving
me crazy. I hope to have it back
and working by the middle of next
week. Hate to do too much personal
stuff on work time.

Connie

Tuesday, September 20, 2005

We heard yesterday that Jared's
Urine for VMA/HVA came back normal.
That is a releif off our minds.

Now it is time to move on agian.

Can't help but worry sometimes.

Connie

Monday, September 19, 2005

Want to give a quick update.

We had the VMA/HVA urine test done
at Hershey Med Center last Wednesday
and we are waiting to hear results yet.

Everything is going well. Everyone is
acting normal. Nothing to worry about
here.

My computer is down since last Wednesday
and it is at the shop. I am updating
from my computer at work today. Hope to
have mine back and working by the end of
the week. I really miss my e-mail and
checking up on how everyone is doing. I
am going through "computer withdrawal."

Will let you know when we hear any news.
We are still monitoring the weight and it
is stable.

Bye and thank you for stopping by.

Connie

Tuesday, September 13, 2005

Well we heard that all of Jared's lab work came back normal.
The weight loss still concerns me though. I put a
call into our local oncologist at Hershey and he
called tonight while we were out to dinner and he said
we can certianly come down for an appointment for
counts and a urine (VMA/HVA). We are planning on taking
him down this week to get the urine done just to be
on the safe side.

I assume our oncologist from CHOP is away since I e-mailed
him Sunday and I have not heard from him yet. (Which is unusual).

Monday, September 12, 2005

Here I go again, becoming miss worry wart....

The other day I said to Mike that Jared was looking
thinner to me. Well Mike weighed him and he has lost 5
pounds in the last 2 weeks or so.

I am not sure why he is losing wieght. He use to weigh 52
pounds and now he weighs 47.

He is eating!!! No problems with appetite here. He is a
very active boy. Wondering if his calorie intake is just
not meeting his needs.

Also has alot of bruises again on his legs, hip and
elbow. All areas he could have bumped while playing.
However, I just think it is more.

I know I felt this way before and all was fine (with the bruises that is). The weight loss has me concerned.

Went to the pediatric center today and they did a CBC, SED
rate, and FBS to evaluate what may be going on. I am
anxious to hear the results tomorrow.

I hope all is well. If the blood work comes out ok then I
will just monitor his weight weekly and if it continues to drop then I want more tests. But if his weight stays
stable or he gains then we are good to go.

Have to be concerned but do not want to "freak out" yet.
Need to gather information then I am sure I will give a
big sigh of relief when all turns out well. But I guess
we should always be precautious.

Wanted to share that Saturday night we went out to eat in
Harrisburg. On the way walking back to our car we passed a
guy carrying a snake. It was a red tipped boa
(spelling ?). The kids were so fasinated with it that the
guy stopped and let then pet it. They thought is was
great.

We walked across the Walnut Street bridge then to City
Island and walked along the river on Front street and just
had a relaxing time. It was a beautiful evening.

I will keep you all updated.

Connie

Thursday September 8, 2005

I want to wish my hubby, Mike A HAPPY ANNIVERSARY. Today we celebrate our
15th wedding anniversary. We have been through both happy and sad times
in the past 15 years. I am glad we are where we are today. Here with
each other and blessed with two very beautiful children who I adore
completely.

Here's to another 15 or more years yet to come.... May they be filled with
love and happiness.

Connie

Tuesday, September 6, 2005

What a weekend. I had a whole 4 days off work. We had loads of fun.

Friday we did not do much. Just hung out at home. Friday night the kids
spent the night at my mom's house and Mike and I had a quiet evening at
home. Ordered Pizza in and just relaxed and watched a movie.

Sunday my mom and the kids and I went to Dutch Wonderland and had a blast.
I don't think my mom had been at an amusement park in ages....... The
kids loved her going. We even talked grammy into going on the roller
coaster, which went well. But we should have bypasssed the rocket ship
which is like the pirate ship. That
ride made mom and I little ill. But we ended up being ok in a little while.

We were happy to meet Aimee, Neil and Kendall and Zachery from New York. By
the time we linked up my kiddos were ready to go to the water part of the
park so we did not get to spend as much time together as I had hoped but
I was glad we did get to meet and now I can put a face to who I am talking
to. Aimee your kiddos are adorable. keep in touch. maybe we can get
together another time when things are not so hectic.

When we got home on Sunday we then went across the street for a cook out
with our neighbors. the kids had a great day.

Monday Mike and I and the kids went to Rickett's Glen to hike. They had alot
of fun. We arrived around 12 noon and hiked till 4 pm. They loved it. The
area has around 22 water falls. Some were not that full of water this time
of year but it was beautiful.

Well gotta go get ready for work. Have a great week and thank you for
stopping by.

Connie

p.s. My friend Kolton heard his scans were clear!!!!!!NED is continued. Way
to go Kolton. Keeping you in my prayers.

The NB list suffered a great loss recently. Beebo gained his angel
wings and my prayers go out to Kelly, Dave and Charilie. The link below
will take you to Beebo's site where you may visit his family and leave a
message of support. Thank you.

Tuesday, August 30, 2005 8:09 PM CDT

Jared started a new class at day care. He is now officially in the pre-school
class. They have reorganized the day care and now they have 2 small pre-school
classes vs. 1 large one. The first day upset me with the new teacher and
a 2 hour nap (which is entirely to much for Jared). If Jared sleeps 2
hours during the day he will not go to sleep at night till 11:00pm or so. My
concerns and expectations were made known and I think and hope this issue
has been resolved. Jared likes his new teacher too (Miss Carolyn).

Kirsten started 1st grade on Monday. How exciting for her. I ended up
taking her the first day because she asked me too but from now on she will
ride the bus to school. She has met alot of new kids and her class size is
only 19 kids which I love. Last year in kindergarten she had almost 30 kids
in her class. So this size is definitely more suitable for learning.

A sweet little boy I know from Allentown is going for scans this week
so please keep Kolton Appleby in your prayers. His web page is
http://www.caringbridge.org/pa/koltonappleby

Also I know Kaitlyn is goign for scans too this week. Her web page is
http://www.caringbridge.org/ne/kaitlyn Also keep her in your prayers.

Connie

Thursday, August 25, 2005 6:02 AM CDT

Last night we had a visit from the tooth fairy AGAIN!!!! Kirtsten keeps
losing all her teeth (which is expected at 6 years old). She was so
excited about the $5.00 she found under her pillow this A.M. She is
getting richer and the tooth fairy is getting poorer. She is now missing
2 teeth on top, one on each side of her front teeth. Pretty smile.......
really I do love it, it is cute.

Yesterday Kirsten received a post card from her new first grade teacher
welcoming her to her class. School starts Monday. I thought that was
really nice of the teacher to do, it impressed me for her take the time and
effort to do that.

Jared, well what can I say about "Monkey Boy" (as he likes to be
called). If I call him "honey" or anything like that he will say, "that
is not my name, I'm the monkey boy." So, Monkey boy it is......

Have a great week and thank you for stopping by.

Monday, August 22, 2005 7:09 AM CDT

One more week till school starts. Kirsten is going into first grade this
year. She is so excited. So far, none of her friends from last year are
in her class that we know of. There are still a few to check with and if
not......I'm sure she will be fine regardless.

Jared is now wondering too when he goes to school? one more year yet for
him then off to Kindergarten. He loves going to pre-school though. It
is 5 days a week and he has alot of friends and alot of fun.

Last night we went to the drive in movies to see Valiant. The kids loved
it. That is the first time this year we did the drive-in things so it was
neat.

>center>

Jared loves Shrek and Donkey

Tuesday , August 16, 2005 4:42 AM CDT

I wanted to add that this past weekend, Jared is now officially a
swimmer. He is able to jump in the pool without an inner tube or any
floatation device and swim to the step. Actually, he can swim anywhere
in the pool he wants to. He is no longer afraid to put his face under
the water. We were even working on retrieving things (toys) off the
bottom of the pool. Our entire pool is 5 feet deep, so I am amazed with
him. He is doing terrific. Dad is the swim teacher though, not me. I
can't handle the crying and not wanting to do things whereas, dad just
ignores it and trudges on and then before you know it (within a few
minutes) Jared is doing his new task by himself and proud that he can do it.
Jared is funny though because like all kids he is reluctant to do new
things. We say lets jump in the pool and he would cry and say "no" and
after we talked him into it and asked him to do it again, then he would want
to do it and do it 30 more times. He just needs the reassurance that all
will be ok and the confidence that he can do it. Which he gets very quickly
once he does things.

Monday, August 8, 2005

We are back now and the beach was great. The sun was perfect (except
for Sunday when it rained), the water was warm and we had alot of fun.

We went to Rehobeth Beach in Delaware. My husband's entire family
all have campers so we just "shacked" up with them. All together there were
17 of us.

We spent the days Friday and Saturday at the beach.
The weather was perfect.

All Kirsten wanted to do was spend every moment in the water riding waves

or floating on her boogie board. With Jen of course, another little girl her
age who was with our group. The two of them hit it off so good. She also
enjoyed spending time with her cousins Nicholas and Brook. It was nice to
get them all together like that.

Jared loved to stay at the beach and run in the waves, dig in the sand and
look for sand crabs. He also liked to go out and float on the boogie board.

Mike and I, well we liked to build sand castles....when I get our pics
developed I will add the pic of our "really cool" castle to the
page.

It is amazing how brave these kids have become. In June when we were at
the beach they were content to play at the edge of the water and where the
waves were breaking. This time they were really into the water and waves.
They are both so adventurous. They never cease to amaze me....Probably
the fact there that were other kids with us really helped too.

We also went to a water park on Saturday evening and enjoyed the
swimming pools and water slides. We then went and rode the miniture race
cars. The kids had a lot of fun doing this.

The weekend was so much fun but way to short..............

That is ok though, there is always next year to go back to the beach. I
just think it is sad knowing we will not get back to the beach now for
another year.

I will add updated pics as soon as I get them developed, which is hopefully today.

Take care and thank you for stopping by.

Connie

Friday, August 5, 2005

We are off to the beach this A.M. (Rehobath Beach, Delaware). Will be back on Sunday. Can't wait to go enjoy sun and fun..........

Sunday, July 31, 2005

Nothing exciting going on here.

We are thrilled to be NED (no evidence of disease) as I wrote in my last entry.

I can really say I am having a differant outlook on life. When it comes to
Neuroblastoma I am thinking more positive and not dwelling on the negative.
So far, so good......................

This weekend we went to Knoebels Grove for the day. It was a blast. The kids enjoyed
the rides and the water area with pools, fountians and such. we never arrived home
till 11:30pm last night.

Tomorrow is Mike's first day back to work after a 3 month lay off. Boy how time as flown.
Seems like just yesterday his lay off began and now it is over.

This means the kiddos go back to baby sitter's (Kirsten) and day care center (Jared). Tomorrow
morning should be fun and interesting. The kids are use to sleeping in until
9 a.m. and I have to be get them up, eat breakfast, dressed, drop them off 2 places and
be at work by 8 a.m., so it should be interesting.

The only plus for me is I only punch the time clock once a day and my hours can be flexible
most days. So a few minutes late, no big deal usually.......

I am hoping they are excited about tomorrow morning so they cooperate
and we get out of here on time.

This week is bible school every night from 6:15p - 8:30pm. Then on Friday morning we
are leaving to go to the beach for the weekend. We will be home Sunday evening.

So we will have a busy week for sure.

Thank you for stopping by......Please sign the guest book so we know you were here.

Have a fantastic week.

Connie

Thursday, July 21, 2005 5:07 AM CDT

Another set of scans done and more great news. The results are NED (no evidence of disease).
We could not ask for anything more............

When we went to see our doctor on Tuesday he was explaining a graph to us regarding the
statistics of a study they are doing regarding the double stem cell transplants
and event free survival rate.

In looking at the graph one thing for sure is that at 2 years post dx the number of people
that relapse dramaticly drops. Which in short means, that if you make it to 2 years post
diagnosis without a relapse your chance for relapse decreases. This is good news for us.
I am a statistical kind of person.

It is so strange being NED. It is a great feeling but it is like you keep waiting for the
second shoe to drop. I don't want to live like that anymmore. I want to live thinking
the second shoe will never drop. I am not exactly sure how to get to this mind set but
I really need to try.

My poor child can not have any symptom of anything (not even a cold) without me freaking out.
I don't want to be like this. I want to more positive and have more faith that all will
continue to go this way.

All I can do is take one step at a time and gradually get to this place.

When we were in Philadelphia the kids had a blast. Staying at the Ronald
McDonald house is like a mini vacation to them. They love it.

We tried to squeeze some fun in too. We went down to Penn's Landing so the kiddos could see
the boats and things. It was so humid though that we did not stay very long.

Yesterday after our scans we went to Sesame Place for a few hours before coming home.
The place was packed. It was hot and the 6 or so wading pools and water areas they had were
literally shoulder to shoulder people. Very crowded. The kids had fun but boy was it HOT.

Today Mike is running the kids up to Raystown lake. My sister and her family are there
and the kids are going to stay with them till Sunday. Last year the kids loved going with
them. They go boating and tubing, fishing and they have jet skis too. Fun fun fun for
them. Back to work for me today. Hooray for me.........

It will be 3 1/2 quiet days for us with no kids here. I miss them already and they
did not even leave yet. But i know they will have loads of fun and they deserve it.

Have a great week and thanks for dropping in.

Thank you all for the encouraging thoughts and prayers regarding Jared's scans.

Connie

Friday, July 15, 2005 4:15 AM CDT

It was exactly 2 years ago today that our journey with Neuroblastoma began.
I remember it as if it were yesterday..............

It was last evening (July 14, 2003) that I came home from work and Jared was complaining
of his belly hurting. (He had not been acting himself for about 2 weeks. He was
not eating much, intermittantly complaining of his belly hurting and not as playful.
He would lay in the living room on his pillow instead of going outside to play.)

The nurse in me told me to feel his belly, again. When I felt it I felt a lump on the left
side. I first thought maybe he was constipated and his bowel was distended. I was
not sure what to think so decided to take him to the pediatrician to be evaluated.

As soon as the doctor felt this lump, he excused himself from the room and came back in about
15 minutes and told me he scheduled an appointment with Hershey Med. Center tomorrow morning
at 8 a.m. with an oncologist. He said I am not sure but I think he has some kind of tumor.

This immediately freaked me out. I was now wishing my husband had came with me to the appointment.

Dr.Hoffman continued to provide me with information on how to get to Hershey and said
there was no sense sending us for a scan locally now because Hershey would want
there own tests tomorrow.

I left the office to come home and I was numb. I kept replaying in my mind
what he said, "tumor." By the time I arrived home I was a basket case.

When Mike arrived home I was crying my eyes out. It was the worse day of our lives, so we thought.

The next day we went to Hershey in the morning, full of anxiety and tired from minimal sleep.

We arrived at Oncology at 7:30 am. We sat in the waiting area forever, it seemed. Finally
it was our turn. We were seen by the doctor, asked a million questions and had scans and tests done.

It was not until around 6 p.m. that evening (we were the only people left
in the entire clinic) that we were given direct information.

We were in a room... still..... waiting to see the doctor and hear about test results.
My husband and i were anxious, tired, scared and irritable. We heard the doctor in the
hall way say to his intern, "Alright lets go get this over with." As soon as I heard it I
knew he had cancer for sure without the doctor even being in the room yet. (This statement
made by the doctor has eaten at us forever, how inapppropriate).

We were informed that Jared had a grapefruit sized tumor on his left kidney and adrenal
gland area. They were not sure what kind, it was either Neuroblastoma or Wilm's tumor.
The plan was to admit us for further testing, biopsy and to place a central
line. And the rest is history...............................

I think July 15, 2003 was the worst day of our lives. I hope it always remains the worst day too.

To think where we were 2 years ago and where we are now is amazing. Jared has been through so
much and to look at him now you would have no idea. He is a terrific little guy who has done so well.

We thank god for how things have turned out.

We thank all our friends, family and community for all their support both spiritually and
financially. We could not have made it through this with out all these
wonderful people in our lives.

We are truly blessed. Blessed with our kids and loving people who care so much to be there and support us.

I have made many great friends throughout this experience and I treasure them all dearly.

Jared has been in remission since 12/03 and we hope he always stays that way. We think
making it to the 2 year since diagnosis date is a plus. Alot of kids relapse early
after treatment and so far so good for us......................... We hope this continues.

Next week we go to CHOP for scans (7/19 and 7/20). I am anxious to hear
continued NED (no evidence of disease) status. Please keep Jared in your prayers.

Connie

TUESDAY JULY 12, 2005

Just a quick addition.........

Jared is a swimmer now. He was in the pool last night without any flotation devices on. We are
so so proud of him. He was so scared at first then he began swimming little distances and then
grabbing the side of the pool. By the time we were done, he was swimming a few feet at a time.
I knew he could do it. What an accomoplishment for our little guy.

I think being at the lake Saturday and then being in the 3 foot deep community pool on
Saturday helped. He could touch and swim and touch and swim. Think it helped him gain
his confidence. We are so proud of our new little swimmer.

FRIDAY, JULY 8, 2005

Where to begin.........

We had a great time last weekend. Sunday (July 3rd) we went to Hershey Park for the day
and stayed for the fireworks. The fireworks were great. The grand finale was awesome.
The kids really love roller coasters too. Their favorite one is the Super Dooper Looper.
It takes you upside down in a circle. We must have riden it 5 times at least.
Our kids love amusement parks.

Monday we hung out at home and swam and then went to my in-laws for a picnic in the afternoon.

Tuesday we ended up going to Dutch Wonderland. We got there about 12 noon. By 2 p.m.
it started pouring down rain and thundering so they closed all the rides temporarily.
We ended up leaving and coming home since we weren't sure what the weather would do. One nice
thing is they gave out free passes to return another day. So....we get to do it all over again.

Last week we had a freak out period. Jared had an intermittant hoarse voice about 2 weeks.
This started to concern me. Some people on the NB list told me that was a symptom they
saw with relapse. Tumors in the lymph nodes and chest. This freaked me out momentarily.

I ended up e-mailing Dr.Grupp and taking him to the pediatrician. Lymph nodes normal per
pediatrician. Throat looked fine and no other symptoms. No cough, stuffiness, congestion
or sore throat. By Monday it was completely resloved. Hoping it doesn't come back.

Jared probably just strained his woice. He can sure be a loud child at times. So,
here's to yelling and nothing else.

Our poor Jared is not permitted to have any symptoms of anything without freaking us out.
I hate that my first thought with any symptom is "relapse".

I just hope some day this feeling will pass.

In about one week we are coming up on our 2 years since diagnoses anniversary.
It is scarey to think where we were 2 years ago and wonderful to think where we are today.

Jared is doing excellant and we are very very greatful but anything out of the ordinary scares
us. Or I should say scares me more.

I just pray that we can keep on living the good life and having fun and being cancer free.

Please stop by Michaela's page (link below) and say a few words to Kim and Dave as they are
coming up the 1 year anniversary of losing Michaela to Neuroblastoma. I'm sure they would
appreciate all the encouragement to help them make it through this anniversary will
be greatly appreciated.

Also Michaela's page has a whole new look thanks to Colleen and myself adding background,
special features and pictures of Michaela throughout her short precious life.

Connie

Sunday July 3, 2005

HAPPY 4TH OF JULY EVERYONE !!!!!!!!!

I hope everyone has a great weekend
and fun holiday.

Last night we went to the fire works
here in Carlisle. The kids loved it.
All they kept saying
was, "beautiful" "that is pretty" and stuff like that. We had fun.

Kirsten lost another tooth. I tell you the tooth fairy is going to go
broke soon if the tooth losing thing
doesn't slow down. Just kidding. She
is always so excited to get up and
find her money. She always gets $5.00
a tooth. So, I am anxious to hear her
response when she wakes up this morning.

Jared is doing well. Has had a hoarse
voice about 1 1/2 - 2 weeks now at
times. Not sure what this is. Some
days he is fine and others he is
hoarse. The past 2 days it has
improved so we shall have to see what
it is like today and go from there.
Thinking maybe we should just go in to
see the pediatrician just to rule out
strep to be safe.

It is funny how any little "normal"
symptoms can make you paranoid of relapse. Darn Neuroblastoma
anyways........I hate being like this.

Well have a nice day tomorrow. We are
heading to the in-laws tomorrow for a
picnic, should be fun.

Monday June 27, 2005

HAPPY MONDAY!!!!!!

We had a beautiful weekend. The
weather was perfect, 95 degrees with
the heat index feeling like 100
degrees.

We hung out at the pool and played all
weekend long. It was fantastic. We
were outside by 10:30/11:00 a.m.
every morning and stayed out there
till 10:00/11:00p.m both days.

On Saturday my friend Helen came over
with her grandchildren to swim and
Sunday our neighbors and Mike's
sister and her husband came over to
swim and for a cook out lunch. It
was great. I love summer time so
such.

Jared is starting to learn how to swim
without his water wings. He is funny,
he does not like for us to take the
water wings off but we are allowed to
take all the air out of them. He is
able to swim about 3-5 feet without
them. He will do this a couple of
times till he gets tired.

Everytime he swollows water we just
make it a game and ask him, "are you
drinking all our pool water?" He'll
say, "No, I was drowning." and then
he will just laugh. I think by the
end of summer we will have a real
swimmer on our hands.

Kirsten loves to swim. She is like a
little fish. She is practicing to
learn how to dive. She does a
little "froggy" move when she tries.

Needs to keep her body straighter and
go in hands first. She is working on
this. Probably within the week she
will have conquered this task.

Those two have tons of fun in the
pool. It is great exercise and they
are so tired in the evening that
getting them to go to bed is not an
issue. It is nice.

I spoke to Dr.Grupp last week and we
are doing every 4 month scans now.

With all the relapse on the list, it
freaks me out at times. Mike and I
did not feel comfortable waiting 6
months. Dr.Grupp agreed to do every 4
month for a year then move on to every 6 months.

We go to CHOP on July 19th and 20th
for CT and MIBG scans.

Have a great week everyone and thank
you for stopping by.

Connie

Continue to keep Jamie (BEEBO) in your
prayers.

Also, please keep my dear friends Kim
and Dave Mease in your prayers too
as they are approaching the one year
mark for Michaela gaining her angel
wings and I know it will be rough and
they will need our support.

The links to both their sights are below.

the father's Day shirt the kids made dad

Jared posing with his birthday cake

The family at Kirsten's kindergarden graduation

Tuesday, June 21, 2005 4:07 AM CDT

Hope everyone had a happy father's day.

Dad had a great day here. The kids and I made dad a shirt
for the occasion. I did an iron on pic from when we were
at the beach the other week. Then the kiddos did hand
prints on it. It turned out nice. I will have to post
a pic of it eventually.

Every year I try to do feet or hand prints on shirts for
dad. It is neat to look back and see the size comparision
from one year to the next. They are keep sake items for sure.......

The kids started going to "Summer Sdventure" yesterday and
absolutely loved it. It is at a local community park. It
is from 9a-12p Monday-Friday. The kids get together
and do crafts and play games. And best of all lit is FREE.
Mike said there is about 40-50 kids there with adult and
teenage supervision. They are so excited to go back
today.

Kirsten looks out for her little brother too. Her and
her one friend Laura were little mother hens for him.
Whcih is a great thing. She said this one girl was
being mean and she stepped in and fixed the situation.
It is so nice that she will take Jared under her wing
and make sure he is having fun and watch over him. What
a great big sister.

Jared is going through the terrible "2's" at 4 I think.
He is such a little fight cat lately too. Hope it is
just a stage and we move on soon. It is getting diffucult
to take him to the store because he is having major
temper tantrums with yelling and screaming. And he gets
so mad so easily at his sister and will just start hitting
her and down right being mean. Not sure why????? Here's
to growing out of this stage......and soon. I know, just
being a normal little child......

He is like this for Mike and I and my mom. For everyone
else he is a perfect angel. Definitely a behavioral
thing. Not sure what to do at times. Hoping it breaks
and "nice" little Jared comes to stay with us for a
while.

Mike is still enjoying his time off work. Having fun
with the kids and getting some things done around the
house. Me, I get to work, work, work. No, justt kidding it
is not that bad.

We are honestly having a great summer. Ready for the 90
degree days to come again which I think is suppose to
happen today. Ready to swim and have fun.

Please go visit Michaela's page, the link is below, her page has been
totally redone and it is beautiful.
A MUST SEE.

Also please continue to pray for
and check in on Jamie, Beebo. His
link is also below. He is starting oral
chemo for his relapse. He is having lots of fun right now and enjoying life.

Connie

Monday, June 13, 2005 4:42 AM CDT

Last Wednesday (June 8) kindergaten graduation went off
without a hitch. We were so proud of Kirsten. They were
all up on the stage and Kirsten was signing her little heart
out. They all made t-shirts with their hand prints on and
had hats with their names painted on. It was great. What
an accomplishment for our beautiful girl. I will post pics
of her when I get them developed.

We went to Brandon Loose's Pig Roast on Saturday (June 11)
down near Ephrata. The kids loved it. Thank you Jamie for
the great time. The kids especially loved the games and
prizes. Brandon you look terrific little guy.

A dear friend I met through Kim Mease, Aunt Lori, took pics
of the kids at the pig roast and I posted a few to Jared's
site for all to enjoy. Thank you very much Lori.

It was so nice to see you all: Kim, Dave and the boys,
Aunt Lori and Aunt Kathy, Jamie,Brandon and family. We had a great time.
You are all great people and I'm glad we had the opportunity
to come and see you all again.

May we be able to get together again sometime.

Jared had his birthday celebration yesterday. What a party.
He we in his glory. Mike and I's family all came and some
dear friends/neighbors. Thank you all for coming to
celebrate with us. We appreciate it and were glad you
were able to do so. We had a fantastic time and I know the
kids really enjoyed themselves.

The "Incredibles" party was here so now in Jared's mind he
is officially FOUR. The day was so busy. We were all
exhausted by the end of the day. The kids went to bed
last night and immediately passed out. Mom and dad
included.

I want to also thank our "thon" frineds Holly and Sarah for
the surprize delivery on Saturday. Jared and kirsten loved the
presents. The sprinkler tube was a complete blast. The
kids played in it about 2 hours on Saturday morning. At
the birthday party yesterday the pool toys (balls and frisbee)
were also a hit. Everyone was having fun soaking them
with water and blasting them at people. Like I said, Lots
of fun was had with them. The nemo pad also was great. They
love the invisible pictures that show. Thank you both again.

Well vacation is officially over for me now, I have to go back
to work today. I would love to continue to stay home, lounge
around the pool and have fun but.....I just can't.

Mike still has about 2 months left on his layoff.
Him and the kids should have a blast now that it is warm enough to
swim.
They will be my sun tanned beauties soon.

Thank you for stopping by.

Connie

P.S. Please continue to keep Jamie (Beebo) and his family
in your prayers. They are trying to find out possible
treatment options now. Deciding
whether to treat or enjoy the time that he has left. What a sad choice for any parent
to have to make. They really need our support and prayers.
You may log onto Jamie's page by the link below and go to Jamie's information.

Thank you again.

Wednesday, June 8, 2005 2:24 PM CDT

HAPPY 4TH BIRTHDAY JARED!!!!!!!!

I must admit that I am so happy to say that. When Jared was
diagnosed with Neuroblastoma almost 2 years ago we had no
idea which direction we were going and what path life was
going to lead us down.

We have truly been blessed to be where we are today. I thank
God everyday that Jared is here and doing so terrific.
Mike and I are lucky and thankful for both our kiddos.

Today we celebrate another mile stone. Four years old and counting.

We have been at the shore (Fennwick Island) since Saturday.
We hated to come home today. The weather was beautiful.
The place the "Belive in Tomorrow" orginization have for
you to stay in is terrific and beautiful. We stayed in
a townhome at Mallard Lake. It was a two bedroom house.

Outside our front door and back door were lakes and fountians.
It was beautiful and relaxing. We went to the beach
everyday. The kids absolutely loved it.

They ran on the beach, built sand castles, hunted for sand
crabs, and went into the water and loved the waves to break near them. It was wonderful to watch them. They
had so much fun. Fear was not an issue with them.

We went miniture golfing, went out on a pirate ship (for
fun and games), ate delicious food, walked the board walk and
shopped. It was the best few days I have had in a while.
No stress or anything I had to do.

We had an Old Time Photo taken. I will try to post it when
I get it on a disc. I took four rolls of film so when I have
time I will add all new pics to the page. I also have hours
of vidoe's I took.

I try to capture all I can on tape have these memories forever and ever.

Gotta go now. We have graduation for Kindergarden tonight
and Kirsten will be home from school any minute and I
promised her we would go swimming when she arrived home.

Take care and thanks for stopping by.

Connie

Thursday, June 2, 2005 3:20 AM CDT

Hello,

All is going well here. We leave for the beach in 2 days.
Fennwick Island here we come............ We still have to
buy some sand toys to take along for the kids. I am so
excited to go. I hope the kids love the beach, I know I
do.

I want to thank Katie from "thon". Jared received his
birthday "box" from you yesterday and was thrilled about
it. He thinks he received 3 gifts (the ball, squirt guns
and the bubble wrap). He played with the bubble wrap more
than anything thus far. How thoughtful of you to do that.

Kirsten also loved the gift you sent her. She took it
with her to my sister's house last night to play with.

I am getting excited for his birthday party too. His
actual birthday is JUNE 8th but we are going to celebrate
it on June 12th with a party. We invited around ten
kiddos to his party and alot of adults. Now, all I have to
do is come up with some great games for them to play. I
hope it ends up being a nice day so we can have it outside.

The other night he did pick out his "party supplies" and I
ordered his cake last night. He did end up picking "The
Incredibles".

As I said before we are cutting our trip to the beach
short so we can be home on the 8th for Kirsten's
kindergarten graduation that evening. She is so excited
about this. She wants Mike to go to school with her
today to watch them practice. I don't think he will be
able to go though because he can't take Jared and there
is no one to watch him. They are not inviting parents
to school today but Kirsten invited her daddy. I'm sure
the teacher wouldn't mind though if he went.

Jared wants a sand box for his birthday. Mike is going to
build him a big one in the back yard. Hope we get it done
by his birthday. We will be pushed for time though.

My niece will be staying here while we are away so she
can watch the "Bud dog" for us. He always misses us
when we are not here. I appreciate her doing this. She
is graduating from high school on June 9th. How exciting
for her. What I wouldn't give to be 18 again.........
I may as well forget that because I am only getting older.

Please visit the BEEBO site below and offer words of
strength to Kelly and the family. They found out that
Jamie in deed has relapsed and things sound scarey.
Jamie has been in remission for a while prior to this.

Jamie was diagnosed around the same time as Jared. It
is so scarey. This damn cancer has infected to many
beautiful children and has caused way too much pain for
way to many families. It just goes to show you that one
can NEVER EVER let their guard down. Just when people
think their life is "back to normal", it gets you.

I think what I find so hard is there are sometimes no
warning signs it is back. One day you are fine then you
have a little sign and the next day you are not. I still
can't believe Jamie has relapsed. My heart goes out to
Jamie and his family.

Well, this will probably be my last update until we get back from vacation.

Connie

Monday, May 30, 2005 6:15 AM CDT

HAPPY MEMORIAL DAY TO ALL,

Hope everyone is having a great holiday
weekend. I know I am enjoying my 3 day
weekend from work.

The kids are doing great. Jared is still
just doing what boys do ie. dig, run, swing
play just anything to pass the time. Kirsten
is great too. Playing and having a ball.

The kids are getting anxiou to go on vacation
next weekend. Jared has never been to the
beach and Kirsten has only been there one time.
We know the water will probably be to cold to
get in but they can still play in the sand.

I must admit I am also getting anxious to go.
It's been a 4 years since I have been at the beach
too.

Today we are going to my brother-in-laws house for
a picnic. Food and fun, yahoo. It should be great.

Well all is going great so just a brief update.

Remember Brandon Loose's pig roast is coming up and
the information is on his page (link below).

Also please send some extra prayers to Jamie (BEEBO).
His link is below. Jamie was dx 2 years ago with NB and
he was doing well but lately he has some issues going
on that really have parents worried. He is going to see
the doctor today. Jamie's link is below (BEEBO).
Please stop by and give them some strength until
they get through this issue and pray all turns out
fine.

Thank you for stopping by.

Love always,

Connie

Wednesday, May 25, 2005 4:27 AM CDT

Hello everyone,

I see the information for the pig roast
that Jamie Eager is having is now posted
on her web page. The date is June 11th.
If anyone is interested please visit her
site by the link below for pa/brandonloose.
We will definitely be attending.

All has been quiet and going well here.
Not much to report on.

Have a great week.

Connie

Thursday, May 19, 2005 4:32 AM CDT

It seems like things are so busy now.
By the time I get home from work we
just play outside all night then before
I know it, it is time to go in and get
the kids ready for bed. Life just goes
so fast.

Monday we all went to Kirsten's field day
at school. They had a blast. It was funny
watching Kirsten with all her friends. I
video taped the whole thing. Tonight one of her
frinds are coming over to play and watch the
video. She was so excited about this last
night. It is so neat watching her grow up
into such a sweet young lady. (yes, I know she
is only 6 but boy she is growing up so much).

Kirsten is someone who thrives on being with
freinds. She just loves being with kids her
age. She is such a neat person and is well
liked by many. I love watching her play with
her friends and hearing them laugh and giggle.

Jared sure has come a long way too. He is turning
into a little gentleman. He is such an active
boy. He goes like the "energizer bunny". And he is
all BOY.

Jared's favorite past time is digging holes in the
yard with his garden tools. He is worse then the
dog when it comes to digging holes. He will literally
dig for hours. We let him dig in the back corner of
our yard. He digs and then loads the dirt up
in his duump truck and empties it somewhere else.
This provides hours of entertainment for him.

Jared is getting excited for his birthday to come.
His birthday is June 8th. He is still debating
what the theme of his party is going to be. I
think he is leaning toward "the incredibles".
He loves that movie. We are planning a big party
for him. It will be great for him.

Well, time to go for I have to go to computer training
at work today. It will be difficult to sit all
day and I am not looking forward to it.

Take care and thanks for stopping by.

If you get a chance please stop by and leave
a message for my friend Kim Mease. She is having a
tough time and needs the support. Michaela's page
is below in my links.
Thank you.

Connie

Sunday, May 15, 2005 6:00 AM CDT

I am really loving this weather. This past week
has been absolutely beautiful. The kids have been
really enjoying there outside play time. We almost
have to drag them in at night. They want to just
stay outside an play. Which I do not blame them.

The kids have been having a great time with daddy
being home with them the past 2 weeks. No more
getting up early, playing all day and etc. It
really has turned out to be a good thing for them.

I must admit also enjoy the calm mornings (no
kids to get up and ready and leave....on time that is).
Mike is
catching on to the stay at home dad thing too. No
more grocery shopping, housework and minimal cooking
for me. Now, that part is nice.

We are getting anxious to go on vacation. We leave
on June 4th. We are going to Fennwick Island through
"Believe in Tomorrow." We were suppose to go for a
week but we will have to cut our time down. Kirsten
is still in school until June 8th. We are just
pulling her out the last week.

Kindergarten graduation is on June 8th in the evening
and she really wants to go. So,
we are going to the beach June4-8. We will return home that day so she can attend
the graduation ceremony. It is so exciting. She will
only graduate from "K" once, so if she wants to go we absolutely will attend. It will still be nice going
away for a few days.

Mike purchased a new bike so now we have to get out there
and ride. We have been lazy lately. We need some
motivation. Maybe this will be the week we start riding.
I hope it is.

We opened our pool this past week. yes, it is cold. We
just took the cover off, filled it with water and through
the solar cover on it in hopes that the water will start
to get warm (eventually that is).

Well, have to go to work soon. This is my weekend to work
Have a great week and thanks for stopping by.

Connie

Monday, May 9, 2005 5:11 AM CDT

I hope everyone had a great Mother's Day.
I know I did.
We went to Lancaster for the Make A Wish truck convoy. When we left our intent was for Jared and Kirsten to ride in a truck in the convoy.
Jared loved the many trucks that were parked there. His favorite was the fire trucks. Kirsten loved the Big Foot truck.
After we were there and spoke to a couple people it became obvious that there was no guarantee that Kirsten could ride in a truck or that one of us could ride with him.
The more we thought about it the more we dicided to not do it.
If Jared was in and Kirsten was out then she would be upset. Mike did not feel like sitting there for 3 hours waiting for Jared to get done. And Jared would never go in a truck without Mike or I.
So, we enjoyed the music, games and trucks and then left and came home.
It was still a fun day. Next year if we decide to go it will just be Jared and myself.
Instead I came home and then took a nap. Sounds good doesn't it? That was my lazy day yesterday.

Thanks for stopping by.

Connie

Sunday, May 8, 2005 6:00 AM CDT

HAPPY MOTHER'S DAY to all you mom's out there.

We are heading to Lancaster today for the Annual
Mother's Convoy sponsered by Make A Wish.

Hope you all have a great day.

Connie

Tuesday, May 3, 2005 4:35 AM CDT

Saturday night I had the chance to attend Brandon Loose's Basket bingo.
It was so great to see Brandon and his mom, Jamie again. It was so great to
remeet you in person. You are amazing. It's hard to believe you
have that many kiddos. You look so young too. We met approximately 1 year ago in clinic at Hershey, which seems like a long time ago. Brandon looks TERRIFIC. He is such a cute little guy. So nice to see you all again. Now, we need to keep it up and get the boys together.

There were 7 of us that traveled to Lancaster to play bingo. We did not
win any baskets but we did have a blast. The food was great too. On
the way home we had the oppurtunity to tour a few parking lots (long joke).

I also had a chance to see Kim Mease again. I have not seen her since
Michaela's funeral last July. We converse often but it has not been in
person. You look terrific Kim. I love you and I am so glad we had the chance
to get together.

The kids are finally over the GI bug they had. Thank goodness.

Jared had his first round of immunizations yesterday. Three shots
in the arms. His poor little arms were so sore last evening. He was
just feeling terrible.

Then at bedtime his temp. went up to 103.6 and with Motrin and Tylenol it
did start coming down. He was feeling pretty crappy. I'm sure the
temperature elevation is just a normal expected reaction to immunizations.

I did call the pediatrician just to be sure of how high before we become
concerned (when is it out of the norm for post shots). I was thinking it was
104 and was shocked when she told me 107. Let me tell you, I will get
excited if it is above 104 and if it would be 107, I would be freaking
out. Hope it is better for him today.

We are going to the Mother's Day Convey of trucks in Lancaster on
Sunday. The kids get to ride in a truck. The day is sponsed by Make a
Wish. We have never done this before so I am looking forward to it. So are
the kids.

More update later.

Connie

Friday, April 29, 2005 6 AM

We did do the CBC and all Jared's labs were normal. Hooray for him. I do
realize I get paranoid at times but that is alright. I just hope the
longer we go NED the less episodes we will have.

Right now the kids have a GI "bug". Pretty nasty too. Kirsten started
Wednesday and Jared started yesterday. I hope they feel better
soon. Kirsten had the vomiting. Jared has it from both ends. Poor
kids. Hopefully today things turn around for him and we see an
improvement. I think Kirsten is over it now.

Tuesday April 26, 2005

Hello everyone,

Well, here goes the paranoid parent thing again. Mike and I have been
concerned because Jared seems to bruise very easily. Now these bruises
are not big. Just many small ones. It does concern us.

I did call the pediatrician yesterday to see if they would order a CBC to
verify his platelet count. Of course they put a message back for the doctor
and when I called back after work to inquire about my request they told me
they were short on doctors today but reassured me the doctor would call me
back when he was done seeing patients. Well, he never called.

I think this morning I will just call Hershey to see if they will order it.

Are we being overly precautious? Probably. But better to be a little
paranoid then overlook something significant.

Jared's mood has been "grumpy" lately. He can still be my sweet
little angel. But he becomes angry so quickly and especially with his
sister. He will reach out and grab her for the littlist thing. The "time
out" rug has been in great use this past weekend.

I do wonder if his mood has to do with an ear infection. Has had one since
the middle of March. Has been on 2 antibiotics and has a follow up
appointment this coming Monday.

We started sticker charts for the kids. They have 4 things they are
rated on and if they complete them then they get a sticker at the end of
the day. If they get all 4 stickers for 2 days for Jared and 3 days for
Kirsen then they get a special surprize.

This has been great and easy for Kirsten. Now Jared is another story.
In the past 2 weeks he has only met all 4 of his goals for 2 days. We
want him to succeed but can only overlook so much.

The tasks are not that hard either. They are listen to mom and dad,
getting along with others (for Jared means no beating up your sister),
putting your shoes away, and no temper tantrums. Maybe he will succeed
someday. We hope.

Kirsten lost another tooth. Now she is missing her 2 top front teeth. She
loves her "toothless" smile. She walks around smiling to show off her
missing teeth. It is adorable looking. With kids it is like a
status thing. "How many teeth have you lost?" "I've lost 6."

Kirsten is also learning how to ride a 2 wheeled bike. She is trying but
scared to death. She will not even let us let go of the bike or she
starts crying. We have a long way to go with this. Eventually it will come.

Well, as I said before Mike is definitely on a 90 day voluntary lay
off starting 5/2/05. Lucky for him to have the summer off. Not me. Nope I
will be getting up every morning and going to work Monday - Friday.
Meanwhile, Mike and the kids can sleep in and do whatever they want.

Am I alittle jealous? Absolutely. I'd love to stay home all summer and
lay by the pool. But this is not in my future (darn it).

But don't worry the rules for this game have been set.

1. Hosework and laundry will be performed during the week in the
daytime hours.

2. Dinner will be completed by the "stay at home" person with help by
me to do the dishes. (I thought it would be only fair if I helped out a little).

3. Since dinner will be perfomed by Mike the grocery shopping will also be
his task. If you are going to cook you may as well do the shopping so you
know what to buy and what we have to make. (thank you Kim for this great idea).

These are the rules set forth as of now. If I am overlooking something
please e mail me and I will be glad to add more.

Really though I do think Mike and the kids will have a great summer. The
kids will enjoy being home. This week is their last week of daycare then no
more till August when dad goes back to work. And Mike will enjoy the hot
summer at home vs. in a hot factory.

My only fear was him not going back to work. He assures me this would only
happen if the plant closes. So he better be right. We shall see.

Well I have blabbered enough. Bye.

Connie

Wednesday, April 20, 2005

Just a quick update.
Well it is official, Mike will be on layoff for 3 months starting
May2, 2005. He is actually happy because he can spend the summer
(May-July) home with the kids vs. in a hot factory.
Longer update later.

Sunday April 17,2005

First off I want to say thank you to Colleen
for all your technical support on the changes
to Jared's caring bridge page. Colleen was
the one who made me the "welcome" piece at the
beginning. Thank you again. If you want to
visit Colleen dtr's site (Kaitlyn) you may do
so at www.caringbridge.org/ne/kaitlyn. Her
site is wonderful and beautiful.

I added some new pictures on the home page and
in the photo album.

The picture I added to the home page is from
a hike we went on yesterday. It is called
"flat rock". It is at Colonel Dennings
State Park near Newville, PA.

It was so awesome. It is a 5 mile round
trip hike and I wasn't sure if the little
ones could handle it. Well, it ended up
being the other way around (kind of).

It is a steep hike and takes alot of energy.
It is not a no effort hike in the least.

It took us over 4 hours to complete. Kirsten
was amazing. She literally "skipped" on the
way up and on the way down when we were on
terrane that she could.

Jared did great on the way up but on the
way back he was tired and a little grumpy.
Which was not surprizing. He did a terrific
job though.

Now, Mike and I, well keep in mind we are
thirty something and well, out of shape
alittle.........No, actually it wasn't that
bad for us either. I am not sore today
but I was tired afterwards yesterday.

We took a back pack and lunch up with us.
So when we reached the top we relaxed and
ate a nutrious lunch before starting the
trek back down.

You can tell from the picture it is an
AWESOME view from the top. Well worth
the hike and time. I always loved this
place.

Hope you enjoy the pictures.

Now, everyone is doing good. Jared and
Kirsen are having a lot of fun playing
outside, riding bike, riding the gator or
whatever, as long as it is outside.

Mike has a work issue going on and he is
not sure what to do. They asked for people
to take a 90 day voluntary lay off. He
is thinking about it. He has to make
a decision this week. I'm not sure which
way he will go on it. There are advantages
and disadvantages to both ways. So, we
will have to see.

Thank you for stopping by. Take care.

Connie

Monday, April 11,2005

Well, it is official. Kirsten lost that darned
old loose tooth. Last night at dinner everytime she
took a bite it kept going sideways and she kept wiggling
it back into place until finally she had enough and
asked me to pull it out. Which of course, I complied
with her request and did so. Now she is once again
missing a tooth in the front of her mouth. She is
absolutely thrilled about the idea. The tooth fairy
is quite generous though too. Another $5.00 for Kirsten
and not for mom and dad. Soon she is going to have
more money then us. Of course now Jared is excited
about losing his teeth also. Which we told him he will
have to wait a few years for that. Not what he
wanted to hear but it will work for now.

Saturday, April 9, 2005

The weather has been fantastic this past week.
Jared and Kirsten enjoyed it so much. We
were able to go outside almost every evening
this week. We've been walking to the park or
just playing in the yard.

Kirsten and Jared's favorite game this week
has cost me a fortune. (not really) Our
TV died the other week and we had to buy a
new one. Well we kept the huge box it came in.

The kids have the box in the yard and they
both get in it and throw their weight the
same way until the box flips on it's side
then they throw their weight another way
and will do this repeatedly. Laughing
hystericly the entire time.

If I had known they would have been so
cheaply and easily entertained I would
have given them a big box a long time ago
and saved all the money we spent on toys.
To late now. Boy are they lucky.

I also love it now that it gets dark later
too. Before the time change I felt like
when I arrived home from work it was time
to make supper and by the time we were
done it was dark. So, this is a nice change.

Jared was back to the pediatrician's Friday
for an ear infection follow-up and to start
his immunizations. Well, his ears are still
infected so back on another antibiotic and
we have to wait to start the immunizations
too. They did not want us starting them with
the infection. That is ok, we will try again
in 3 weeks.

I am not looking forward to the immunizations.
I want them because they will help improve
his immunity but it's like 6 injections the
first time. I told Mike we may have to split
it up into 2 visits and not do it all at once.
He said, well then we have to pay $15.00 twice
because it will be two office visits. This
made me laugh. I was like "yes, and ........."
It's funny. I would not want 6 shots on one
day, that is plain mean. Although, even after
3 shots I 'm sure next time he will be wondering
if he has to get more. It's better if we can
surprize him with it last minute vs. him
anticipating it for half an hour. So, we will
have to see how things go......

Kirsten is about ready to lose her 5th tooth.
It is literally hanging by a thread tonight.
Anytime she bites into things it literally
will turn sideways and it's kinda uncomfortable
too. We told her to keep "wiggling" it and it will
come out. She doesn't want to do this and she
will not let us wiggle it either. It will fall
out soon with or without interventions that is for sure.

Two weeks ago Kirsten had me worried. To begin
for about 2 weeks she would barely eat supper.
Was constantly complaining of a belly ache when
it was time for supper or after eating a few
bites. This was not her. After about 2 weeks
of this I the paranoid mom that I am took her
to the doctors. They think it is acid and order
her medication for acid. The pharmacy couldn't
get the medication in for 2 days. I picked it
up but have never given it to her.

From the day we went to the doctors, NOT a single complaint and is eating. I don't know if it
was real, stress or attention seeking behavior.
But regardless I wasn't going to play that
game and second guess myself later, so we saw
the doctor. It is just so wierd that not a
complaint since. Don't get me wrong I am glad
she is doing great but I wonder what was going
on? Guess I won't find out either. But if it
means my kiddo is healthy I'm all game for that.

My pediatrician probably thinks "here comes
that psycho mom agian" but oh well, that is
me and they will have to humor me and see us
for all my concerns. They are very understanding actually.

The kids did go to Gettysburg last weekend and
make Boyd's bears. You actually pick your bear
and then stuff it's belly with beads. Each bead
stands for something like...love, honesty and etc.
Then they pick out the clothes to put on the bear.
They loved it. Kirsten picked a white bear with
light green satin pajamas on. Jared chose a black
bear with a fireman's outfit on. They were so
excited when they came home.

Time to go now. Thanks for stopping in.

Sunday, April 3, 2005 11:02 AM CDT

Rain rain go away and come again another day.
I want to sing this song to see if it really
works. If we need rain it is ok. Right now
I think we all need some warm sunny days.

You'll have to go to the photos and see the
new updates. I put a picture of the kids in
there ready to start ther egg hunt and Kirsten
displaying all the beaded jewelrey we made.

Yesterday we had to stay indoors all day since
it was so yucky, wet and cold. We had fun though
painting sun catchers. It is so fun to do and
I enjoy it about as much as the kids if not more.
We painted all kinds of cool things. A unicorn,
fire truck, turtle and oh so many more.

Kirsten paints hers realistic looking. Jared
paints his multiple colors with a tye dye look.
My windows in my dining room are full of sun
catchers. Now all we need is some sun to catch.

I took a picture of them and once I get it developed I will post it here so you may view their art work.

We also did those felt pictures that you color
with marker. I have to get one for myself next
time. When the kids were off playing taking a break
I found myself drawn to them. I would color a little
bit and hope Jared wouldn't realize I did it when
he came back. Of course, he always did. "Who colored
my feathers?" I had to admit it was me. He was ok
with it though. He's a good sport.

Last night we went to see the movie "Robots" It was
a cool movie. The kids liked it but I think Mike
and I actually enjoyed it more than them. There
were some funny parts that we picked up on and
they did not. It was Kirsten's choice.

Today Kirsten and Jared went to Boyd's Bear Country
in Gettysburg with my dad and his wife to adopt a
bear. I have never been there. I hear it is neat.
I can't wait till they get home and tell me all
about it.

Boy I tell you losing that hour of sleep last night was not a good thing. I missed it. But I love the fact
that now it will be light so long in the evening.
Hooray Spring is here and summer is coming.

I know I get so obsessed about the weather. I
really do have the winter blues and need warm weather
soon. I feel like a caged animal. Even thinking about
chewing on my dogs rawhide to pass the time (just
kidding, it's not that bad).

Remember basket bingo for Brandon Loose is coming up
April 30th. If you are interested in going see
information on Michaela's web page. The link is below.

Thanks for stopping by. Not a lot of important info.
to pass along this time, just blabbering. Take care

Connie

Tuesday, March 29, 2005 8:04pm CST

Today was beautiful. Spring is here. Hooray.

When I got home from work we took a walk down to the park. The creek
was flooded from all the rain last night. Normally there is a huge
area where the kids can run and play. But, not today. Today it was solid
water. It was neat to look at though.

The kids played on the slide and swang. Jared, oh what a crazy boy.
The little guy was on the slide and was going to slide down until he saw
a "little" bug on the slide. Instead of going down the slide he decided to go back down the steps. He went down
one step and fell down the rest.
Thank goodness he was alright. He is lucky he did not hurt himself or brake a bone. Only ended up with an abrasion
on his back. Yes, all this over a "little" bug. He scared the crap
out of me. He complained of his butt hurting a fussed about a minute then
walked home with us without another complaint. I bet he will be sore though tomorrow.

Kirsten was excited because on the way home we walked past one of her classmates house and they were outside playing. So we stopped and she played a while. Which she really enjoyed.

Kirsten also learned how to tie her shoes yesterday. How exciting
for her. Mike and her have been working on this and now she has
it down pat.

Mike and Kirsten have also been working on how to count money
(coins). She is getting pretty good. It is amazing how quick they pick
up on things.

OOOOOHHHH, my little girl is growing up fast.

Stop by and sign the guest book so we know you stopped in to check on us.

Connie

Wednesday, March 23, 2005 8:45 PM CST

The kids are getting anxious for Easter to come. We are having a big egg hunt at my mom's house on Saturday.

Today I went to Kirsten's school for their egg hunt and spring celebratioin. It was fun. Had to play indoors though with all the rain. Boy, what a noisey classroom but boy did they all have fun.

Yesterday Kirsten had the GI bug with projective vomiting. Not a good thing.

Jared has had the GI bug too. He has had the water stools. Had them Friday and Saturday then again Monday thru today. I'm not sure actually if it is the GI thing still or related to the antibiotics he is on for the ear infection. Hard to tell.

I'm ready for all to feel well and contain their body secretions appropriately. We said boy did the babysitter earn her money yesterday with our kids. "poor Linda".

Hope everyone has a nice Easter and gets lots of candy.

God bless and take care.

Connie

Sunday, March 20, 2005 7:16 PM CST

When is Spring coming? Is it coming soon? I can not wait for it.

Jared has been alittle under the weather this week. Started with respitory symptoms and a fever when we were in Philadelphia Tuesday. Then Friday and Saturday had the GI bug. Now today c/o ear pain and still has a nasty cough.

We were at the doctor's today and he now has an ear infection and is on antibiotics AGAIN.

I am ready for the "old immune system" to return to normal. When will that be? Who knows. We were going to start immunizations this week but now the doctor told me today to wait a week or two before doing so.

I want to share with everyone about a basket bingo for Brandon Loose on April 30th. To find out more information or purchase tickets you can check out Michaela Mease's web page at http://www.caringbridge.org/pa/michaelaann (see link on this page below) It is a fund raiser for Brandon who is being treated at Hershey Med Center for NB. There is also a link below to take you to Brandon's page.

Let's all pray real hard for warm weather to come. God bless and take care. Sign the guestbook while you are here so we know you were visiting.

Wednesday, March 16, 2005 5:49 PM CST

I have terrific news. JARED IS STILL NED!!!!!!!!!!Hip Hip Hooray.

Jared had his CT scan, labs and VMA urine test done yesterday. When we met with Dr.Grupp yesterday afternoon he told us the CT was "NORMAL". Today he had his MIBG scan it was "CLEAR and NORMAL" too.

I worry so much about having scans done. I want them but I fear the results. So, I am so relieved to hear this. Dr.Grupp has been very thoughtful and considerate too. The last 2 times we had MIBG scans done he has nuclear med. call him immediately after our test is completed. He then immediately calls us and informs us of the results. This is wonderful because it immediately satisfies our curiousity and puts us in a good place. I really do love not having to wait for results. For this I sincerely thank him and love his committment to us.

Now comes the scary thing. Dr.Grupp wants us to go to every 6 month scans now vs. every 3 months. But he said he will talk to me later in the week and we can discuss it and it is negotiable. This scares me and I did not want to do it. As much anxiety as scans cause they also give reassurance when they are complete.

After Mike and I discussed it I think we are going to go ahead and plan 6 months from now. The positive things are: we can relax longer before having to think about scans again and we know that if any thing comes up Dr.Grupp will move them up if needed. So, I'm sure I will shock the heck out of him by agreeing to his request. This is not my norm.

While we were in Philadelphia Jared and I ended up going to the Please Touch Museum. He loved it. They had an Alice in Wonderland display, a bus, airplanes, a barnyard and other interactive displays.

Also had a great time at the Ronald McDonald house. Met alot of new people. Met 2 more kids with NB. One (Emily, from an island off of Massachusetts) who just found out she is relapsed for the second time. They came to CHOP for scans and to remove her port and ended up in an entirely differant ballgame. And one little boy (Kolton) we met at CHOP who is just starting Accutane and doing well.

Take care and thanks for visiting us. Please sign the gueat book so we know you stopped by. Thank you.

Thursday, March 17,2005

the little boy we met at CHOP who is starting the Accutane, his name is Kolton he has a caring bridge page also. I think his mom would love to hear from some other parents of kids with NB. I gave her Kelly's Beebo site but if you want to stop by and drop her a message his page is http://www.caringbridge.org/pa/koltonappleby. I'm sure they would appreciate some hellos and to meet other parents. Please stop by and see them.

Friday March 18, 2005

Spoke to Dr.Grupp today and VMA was negative. Another Hooray!!!!!!! His labs are normal except immune studies are low. This is probably why Jared catches everything that comes down the block and then some. We are starting immunizations this coming week. Jared is running a temperature, one bout of diarrhea and also has respitory symptoms. I am so so ready for Spring. Ready to see Winter go bye byes.

Connie

Sunday, March 13, 2005 5:16 PM CST

Well our big scan day is fastly approaching. We have to be at CHOP early Tuesday morning. Jared and I are actually going to leave tomorrow when I get off work and go to the Ronald McDonald house for the night so we don't have to get up so early on Tuesday. CT scan on Tuesday and MIBG on Wednesday. Can't wait to have them done and get the results back.
Mike and Kirsten have the GI bug thing. Not a pleasant thing. Hopefully Jared and I can keep from catching it.
Wish us luck. Stop by the guestbook so we know you were here visiting and checking in on us even if you just say hello. Take care.

Thursday, March 3, 2005 2:44 PM CST

Jared is going to CHOP for his scans (MIBG and CT) on March 15th and 16th. We will spend the night at the Ronald McDonald house on the 15th. It will be nice to get them done and hear continued NED status. Wish us luck.

Last night we went to the Giant Center in Hershey to see Disney on Ice Toy Story 2. It was fun. We all loved it.

Jared especially enjoyed it becuase one of his favorite characters is Buzz. Also, he loves the song "You got a friend in me." When it was playing he was stnading up dancing and throwing himself all around. He was cute and funny to watch.

Whenever Jared was going through radiation the nurse, Judy, use to sing this song to him everyday through the microphone while he was getting his radiation. It was a tradition. So, he now loves this song.

Speaking of Judy, we went to Hershey today for a hearing test and all is great. YIPPY. Then we went to visit Judy. It was nice especially since we were just visiting. Jared loved the fact that they still have a picture hanging on the wall of him on his John Deer gator we gave them last year. He kept saying, "that is me mommy."

Kirsten loved Disney on Ice too. Her favorite song was when the toys were in Al's Toy Barn and all the Barbies were singing. They sang the Dixie Chix song, "Let em rip, Let em fly" Kirsten loves this song. Last summer she use to have us play this song over and over and over again. She knew every word by heart.

After we got home from Hershey we went to Carlisle Hospital for me to have some things done. I still have laryngitis. My voice is better but still not 100%. I had a sinus x-ray done and a CBC because I have still been so tired most of the time. So, hopefully this shows something or things just get better.

When we came out and went to go home my car died. Every time I started it, it would just stall for no reason. I need a new compressor. Hopefully they can get it fixed today or tomorrow. I miss my car already. Thank goodness for AAA (free towing). At least it is a blessing it did not break down in Hershey earlier today and waited till we got back to Carlisle.

Well thanks for stopping in. Visit the guest book even if it is just to say hello. That way we know you were here checking on us. Thank you.

Connie

Thursday, February 24, 2005 8:30 PM CST

What a beautiful night. It is snowing like crazy and it is so pretty. Tonight after supper we took the kids out to play in the snow.

Then we went for a walk and ended up at the park. The kids had a blast. They went down the twisty slide and would shoot off the end like a rocket and fly to the groud.

Nylon snow suits and sliding boards are a fast and great experience. Not that I was willing to try it but the kids absolutely loved it. When they would get to the bottom they would fly off and land on their backs in the snow, laughing like crazy the entire time and then climb up and do it agian. Mike and I had a terrific time just watching them enjoy themselves so much.

This may or may not be the last big snow of the winter. Kirsten did not have school today since they had an early dismissal.

Jared went to day care today and they went to a puppet show at the adult day care next door and he said it was alot of fun.

Today via e-mail I recieved some pictures of the kids at thon from Katie. I put the picture of Katie, Ian, Kirsten and Jared in the photo album so everyone could enjoy it. Katie and Ian were the terrific people who danced for Jared. They made Kirsten and Jared's experience at thon fun and terrific. We sincerely thank you for all you have done. At THON they ended up raising 4.1 million dollars. That is AWESOME. We thank you all. The money they raise is for four diamonds who helps out families with meals, gas, financial assistance and so much more while the parents have an ill child. It is great and very much appreciated. Thank you.

I am also excited because I received my Neuroblastoma awareness car magnets in the mail today. They are beautiful. They are purple and gold with lettering and a picture of 3 kids at the top with the center one's body being a heart. Misty Whorley had them made. Her son Trey gained his angel wings in December 2004. Misty you did a great job. Thank you.

Please go visit our pictures to see our new friends from thon. See ya later.

Connie

Monday, February 21, 2005 5:58 PM CST

Hello, boy what a weekend.

We went to State College for the dance a thon. It was nice but boy was it cold out and the place was crowded. We went up to State College on Friday night and spent the evening in the hotel.

On Saturday morning we headed over to the college campus. The kids had a blast. We immediately met the student's from Life House and the kids proceeded to soak them with squirt guns. And when I say soak I mean soak. By lunch time we needed a break. We went back to the hotel and the kids watched tv and relaxed and Mike and I relaxed and took a snooze.

After lunch we went back to the college and met up with Katie and Ian (our dancers). the kids again had a blast. The place was getting so crowded.

I couldn't talk to anyone because they could not hear me anyways (the laryngitis thing still happening). Kirsten was coughing. She had been at the doctors on Friday and was on an antibiotic for an ear infection. Jared was doing well.

When we left thon on Saturday evening we decided to just head on home. We were all tired and a little under the weather. We ended up getting home around 8 pm.

Jared had been peeing or trying to pee every 15 minutes on Thursday and Friday. This has subsided. He still goes frequently but it is better then it was. He was at the doctors on Friday and he does not have a urinary tract infection. I personally think it is a side effect of the radiation. The doctor doesn't really think so but I do.

We go for our scans (MIBG, CT, blood work and immune studies) in about a month. I am getting anxious to do them. Just to hear everything is alright and feel relieved again for a while.

Yesterday we took the kids to see Racing Stripes. It was a cool movie. The kids loved it too.

I went back to work today. After talking or I should say trying to talk all day I am tired and stressed. This was my first day back since 2/11.

We never met up with Brandon Loose and his family at thon. Sorry guys, maybe another time. I did get to see Eric Brady and his family and that was nice. I have not seen them since around April last year. Eric looked great. Hope to see you guys again some time. Take care.

Take care and god bless you all. Thanks for checking in on us. Visit the guest book so we know you were here. Bye for now.

Connie

Tuesday, February 15, 2005 7:15 AM CST

Hello everyone it sure has been a busy week. A lot to update you on.

Sunday February 13th Kirsten turned 6. She had a beautiful Princess and the Pauper birthday party. She invited about 10 girl friends and 2 boys (counting her brother). The kids had a blast. We rented a cabin from Carlisle Parks and Recreation and it was great. All those little girls and boys running around screaming and laughing, priceless. What more could we ask for? Nothing.

She had a picture cake. The picture she chose was one of her and Belle from when we were at Disney. It was beautiful.

Mike and I did enjoy seeing her with all her friends. Little kids are great to watch play and have fun.

Mike's sister, Linda, helped out a great deal and we thank you. You are always there when we need you. We love you Linda.

Jared is doing good. Was off antibiotics for 5 days and doing ok then developed a nasty cough again. He was in last friday and had a chest x-ray done which was negative for pneumonia. Thank god. He is now on Zithromax. Some improvement noted.

Jared has been randomly c/o leg pain. Not that it interferes with him playing or anything but I cringe everytime he says it. I have sent an e-mail to Dr.Grupp to update him but I have not heard back yet. I want to move his end of March scans up a bit. Just for reassurance. I will have to wait and see what he says.

I have been under the weather myself lately. Last Tuesday or Wednesday I started with this sore throat, sinus cold and chest congestion. I have had laryngitis since last Thursday. I still can not talk above a whisper. It is great for the kids. No yelling for mom. Boy is it ever quiet at our house. When I get my voice back I will have to make up for lost time. If it is not important then I don't say it. Jared keeps saying, "Mommy I want your old voice back." I say in my loud whisper, "yes me too."

Mike is doing well. Yesterday I was suppose to help out with Kirsten's Valentine's Day party at school but instead he did. It was great. I think Kirsten really enjoyed her dad's participatiion in her class. I think dad enjoyed it too. He was talking about her friends and referring to them by name.

Today is Kirsten's birhtday celebration at school. We are in charge of snack. Last night we made 30 cupcakes and frosted them with blue, pink, green and yellow frosting. Actually the kids frosted them with me being the "germ police". If any hands touched the mouth, nose or face they had to stop and go rewash hands. 10 handwashes later we had the cupcakes frosted and ready for school. What a challenge but boy did they have fun.

This weekend is thon. It is a dance a thon to raise money. It is held at State College at the Penn State Campus. We are leaving Friday and returing on Sunday. Usually only the families in active treatment get free hotel rooms. This year they had extra rooms and so they raffled them out and we won one. We are so excited. We have a group of Penn State students, Life House, who is our dancers. They have been great. They have called and e-mailed us and even sent the kids a great care package. We are anxious to go and meet them this weekend.

I am also excited to meet Brandon Loose and his mom Jamie who I have been conversing with via computer. I know they are also anxious to meet us. See you guys then.

Lastly, It is with great sorrow I say that yesterday I found out another little boy, Joshua Young, lost his battle with Neuroblastoma. Mike and Jared met Joshua and his family in Philadelphia in December. Joshua was such a brave and wonderful child. He earned his angel wings yesterday morning at 5:15am as he lay sleeping in bed between his mom and dad (Christine and Jamie). Please keep Joshua's family in your prayers that they will have strength and courage to make it through one day at a time. His web page is http://www.caringbridge.org/sc/joshua.

thank you for checking in and take care of yourselves and each other. Be thankful every day for all you have and tell the ones you love how much they mean to you. Bye for now.

Connie

Friday, February 4, 2005 5:46 AM CST

Last night I worked on changing the picture and the decorations on Jared's home page. This is dad and Jared in the snow we had recently. Don't they both look happy. I am planning to update the pictures in the photo album this weekend.

One week of daycare about down and all is well. Just wishing for a full time slot. Jared making lots of friends. He LOVES it. And no new germ symptoms. YES.

Kirsten and I went to a skating party for school last night. It's scarey getting on skates after it's been so long but I managed to stay on my skates and not my butt. That's one for mom.

It was Kirsten's 3rd time ever skating and she did so well. Started out holding my hand then about 1/2 hour in told me "go skate by yourself mom I'm fine". I was impressed. There were 2 of her friends from class there and the 3 of them would skate around holding hands. This was great for them for moral support but if one fell it was domino's. Sometimes if one fell they would all go down almost on purpose. Like to provide support to one another. She did the limbo (mom did not). We did the hokey (spelling ?) pokey and shaked it all about. We had a fun evening.

Sometimes I think she needs that one on one time more then we know.

Jared is yelling for me now. The usual, MMMOOOMMMMMMMYYYY, MMMOOOMMMMMMY. Time to go.

Connie

Tuesday, February 1, 2005 9:53 PM CST

Jared started day care yesterday and all went well. He had a great day. YIPPY. The teacher said all went well but he really caught me off guard at lunch. They had cheeseburgers and french fries and he asked for ketchup. She was already putting ketchup on for the kids and he said, "I told you, if you do not give me ketchup then I'm not eating that thing." (referring to the cheeseburger). She said he really surprised me. I said "yes, I should have told you he's very strong willed and knows what he wants and when he wants it. And if that isn't done he will let you know." He really did love it.

Some of the kids are the same ones that were there when he went back in 2003. He remembered 2 of them but also we have seen them on occasion. I'm so glad he loved it. My only concern is a 2 hour nap. Not a good thing for him. To long a nap and difficulty putting to bed at night but all did go well. But I did tell them from now on only 1 hour for nap time. He only will go to day care/preschool 3 days a week (Monday, Thursday and Friday) until a full time opening comes up. My sister watched him today and will tomorrow too. Thank god for great sisters. She really has been wonderful to us. Couldn't do it without here.

Kirsten is getting excited about her 6th birthday party on 2/13/05. We have planned it and sent the invitations out. Her theme is princess and the pauper. She is very excited and anxiuos. This will be neat since she is in kindergarten she is inviting some girl friends from school. How exciting for her.

That is it for now. All is going well.

Connie

Sunday, January 30, 2005 9:33 AM CST

Hello everyone,

Things are still improving. The kids are so much better. Still have the cough but greatly improved.

Kirsten is so excited. Yesterday she lost her 4th baby tooth. The tooth fairy came last night and left her $5.00. By the time her baby teeth are gone the tooth fairy will be broke and poor. Just kidding. She has 2 more teeth that are loose. She is now actively working at them so she can get MORE money. It is cute to look at her with her missing teeth.

Jared officially starts daycare tomorrow morning. He has not been in daycare since prior ot diagnosis. We put him in daycare in August 2004 for one week and then he was out the entire next week with temps and an infection so we kept him out. Now we have no choice but to put him back in. My mother-in-law was watching him and she is planning a 2 month trip so now we have to put him back in. I think it will be good for him to be around other kids besides his sister. But worried about all the exposer to "new germs". I hope things go well. We will see. One nice thing is the daycare is at my work so I can check on him and it is very convenient for drop off and pick up.

Thanks for checking in. See ya all later

Connie

Friday, January 28, 2005 5:21 AM CST

Hello everyone,

I think things are getting better. Kirsten still has a low grade fever. Jared has no temp but a terrible cough. Looks like we are improving slowly. This has been a week to remember. It's been crazy. Mike has been off since Tuesday with the kids. Work has been nuts. We are having our annual department of health survey and thank goodness today is the last day for it. I can't wait for the weekend. R-E-L-A-X-A-T-I-O-N. And house work and laundry of course. Anxious for 4:00pm today to get here.

Connie

Wednesday, January 26, 2005 6:03 AM CST

Let the games begin. Well it is official, Kirsten has definitely caught the same bug Jared has. Jared still running temp around 102 and now Kirsen is the same. With all the barking (coughing) going on here I'm starting to feel like I'm back at Sea world visiting the seals. Just kidding. Jared goes back to the doctor's today since his temp is still up. Yesterday they said if he still has a temp this morning to call and come in and then we will do a chest x-ray. So that is the plan for him. I also told Mike when he takes him in, have them do a throat swab to test for influenza. He has a high temp, respitory symptoms and malaise. No achiness though. And while he is there and since he will have Kirsten with him he may as well get her looked at too. (Fun day for dad). I was thinking if the kids only could share toys like we do infections that would greatly reduce the number of fights in our household. I wonder how I can accomplish this goal. Actually they do share pretty good most of the time. I am just humoring myself. Last night we it was like a revolving door. Up with one then up with the other. This person sleeping in this bed then that one. When we went to bed we were all in our own. When we got up (or I should say when I got up) Jared and Mike are in the race car bed and Kirsten and I were in our bed. I don't know who went where then where they went next. Gotta get ready for work. Update later.

Connie

Tuesday, January 25, 2005 7:15 AM CST

Another day at home with the kids. I wonder if today is the turn around day? Jared has had 3 doses of antibiotics. Still coughing and with congestion but not as much coughing during the night. Last evening his temperature was up to 103.8 (axillary). this morning at 5:45 am it was 102. Now we will just have to wait and see what happens with it today. I guess if he is still running a temp at 12pm then I will give the doctor a call per his instructions. Kirsten is starting to cough alittle now too. No fever......yet. You know how it is, when we get things we love to share. Oh well, could be worse.
My computer is driving me nuts. Added a new virus scan and now it is ssssssllllllooooooowwwwwwwwww and being a pain in the butt. I have to figure it out. Eventually I will. Trial and errror.
See you later.
Connie

Monday, January 24, 2005 9:54 AM CST

Hello everyone,

Jared is still running a temperature today (102.6 axillary) Is pretty croupy and not feeling well. Stayed home with him today. He is just lying around watching movies and resting which is the best thing for him right now. I just keep the fluids going and the Motrin going in every 6 hours. I can tell when the 6 hours are about up because he starts c/o being cold, chills, pulling his blanket around him tighter and feeling HOT. Hopefully since he just had his second dose of antibiotic things will start to turn around. Going to call MD and see if I can get him some Albuteral (he has used this in the past with respitory infections and it seems like he is getting there again). Kirsten is doing great. Because Jared is sick she now says she is too (no symptoms YET). She wants to stay home from school today. She goes to afternoon kindergarten and leaves at 1:15pm today because of the 2 hour delay. She told me if I send her she is going to the nurse and coming home. I told her if she is sick she should go to the nurse and then we can go from there. Well that is it for now.

Connie

Sunday, January 23, 2005 5:20 PM CST

So this morning I write and say how much fun we had in the snow yesterday. Now I'm saying Jared has pneumonia. This morning when we woke up he had a temperature and a cough. Took him the the doctors and he heard some crackles in his lungs. He was going to send us for a chest x-ray but with his history and to save us time (from spending our afternoon in the hospital waiting for a chest x-ray) he decided to just put him on a broad spectrum antibiotic and told me if his temperature is not resolved in 2 days to call and he will order a chest x-ray. As the day goes on his cough is getting worse. WINTER IS HERE, YAHOO. Jared had a cold at the end of December that lasted about 2 weeks then a cough that lingered another 2 weeks and finally resolved last week. So now it is time to start again. All part of being a parent with young children. He will get better though. I'm not complaining just commenting.
I did e-mail Dr.Grupp today also. Informed him of our requests for what scans/tests we want done next. He agreed to the MIBG, CT (but only this time as a baseline), VMA, and labs. He will not do a bone marrow bx. Said he only does them as follow up if the labs are abnormal. Not sure what I think of this. Our bone marrow biopsies were always negative. Only ever had 2. One at dx time (7/03) and one pretransplant (Nov/Dec 2003). Mike and I wanted to do one now just because we haven't for a while. We don't want to be paranoid just precautious.
Our scan in December 2004 made us a little more worried now then we use to be. Even with that positive MIBG (12/01/04) then a negative CT and negative repeat MIBG (12/30/04) it makes me more than alittle concerned about future scans. I am not constantly dwelling on this but I am alittle more precautious now.
For now I will just be happy and content with life as it is. Our next scans are not until the end of March so I will try to forget about it until then. That should be fairly easy with just normal life activities.
Here I am rambling on. See ya later.
Connie

Sunday, January 23, 2005 6:27 AM CST

Hello everyone,
Yesterday we had our first "real" snow storm of the winter. The weather man was calling for 6-12 inches but we only received 3 inches. No complaints here. We took the kids sledding at the park in our housing development. It was so much more fun this year for mom and dad. The kids are older and Jared has much more strength and endurance and can now actually pull their own sleds up the hill walking vs us pulling them up in the sleds. Mom and dad like this. Now we the parents need to continue this and not divert back to pulling them up. We had a blast. I don't think we will be doing that today it is so windy and cold. Well it is time for me to go and make the kiddos breakfast so see ya later.
Connie

Tuesday January 18, 2005 8:20pm

Since I joined the NB list I have enoyed going to families/children's web pages to read updates and see pictures of these beautiful and handsome kids. It makes me feel as if I now know who they are even though I have never met them in person. This has inspired me to create a web page for Jared so I to may share pictures with friends. I hope you enjoy it.
Thank you for checking in.

Click here to go back to the main page.

----End of History----