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Sunday, February 12, 2012 6:07 PM CST

Wow! Long time since I've updated. I don't know if anyone ever reads this site anymore but I want to continue to update when Kevin has appointments, etc.

He had his annual MRIs and check up with Dr. Bendel last week on Feb. 7th. Thankfully, the results were all good! NED!!!! Kevin is doing just fine and this visit was really quite routine for him. He didn't even get angry or show frustration over having to go. He is really growing up and for this I am so very thankful. Kevin is now 17 years old! He is half way through his junior year and very soon will be figuring out post-secondary education. He is looking at a 2 year technical program type situation right now and that seems to be very appropriate for him. School is challenging but he works hard at it and I think he can do very well in that type of setting if it's something he is really interested in. So, this summer and next fall some decisions will have to be made. Time will fly. I really can't believe we are here. Again, very thankful but also a little anxious too.

Anyway, if anyone reads this, thank you!! Please keep Kevin in your prayers for his future and for continued good health! I am participating in Relay for Life again this year at Oxbow Creek. Anyone wanting to support my fundraising efforts, please go here: http://main.acsevents.org/site/TR/RelayForLife/RFLFY12MW?px=20970629&pg=personal&fr_id=38850

Love to all,
Deb

Sunday, August 14, 2011 3:52 PM CDT

It has been a long time since an update which is always a good thing now. But, since Kevin had some recent dr appts I thought it was time for an entry. He had an ENT appt in July and his ear condition and hearing all checked out good. The next appt was on August 4th with endocrine. This was a follow-up from February. Kevin stopped growth hormone injections in March so this check up was to check on that and also his thyroid as usual. I brought him to Children's the week before to get labs drawn hoping all the results would be in by the appt with Dr. A the following week. All labs were in except GH levels. His thyroid was fine and all other results fine also. We were told the GH results would be in any day and she would send us a letter or call us with the results. She wasn't concerned. Kevin had grown another 1/8-1/4 inch since February. The big concern she did have was his weight. Kev lost 6 lbs since February and this is not good. We knew he had lost but didn't know it was that much. So we are on a mission to help him put weight back on. He is cooperating and getting to eat lots of ice cream, yogurt, bacon, peanut butter...pretty much whatever he wants. We're trying to include nutritious things and lots of protein. I think he's doing good. A few days after the appointment we got a letter in the mail from Dr. A that GROWTH HORMONE LEVELS ARE NORMAL AND THERE IS NO NEED FOR FURTHER TESTING OR TREATMENT!!! I'm so happy to get this result and I know Kevin is too. He did NOT want to go back on the shots again. Another chapter done and behind us!

School starts on September 6th. Kevin got his schedule and of course it's all screwed up. He has an extremely light load 1st trimester and 2nd and 3rd are heavy and this will not work for Kevin. So we will need to get that all adjusted. Kevin will be a JUNIOR this year! Only 2 more years of high school. This is just hard to believe sometimes. I really hope this year is a good one for him. School can be such a challenge sometimes. He always works hard and is a very good student but the challenges come and go and sometimes they are cause for some stress. It's always hard to see him with any stress.

I was co-captain for Relay for Life this year. The school I work at formed a team this year. We did awesome and raised over $4400! Unfortunately, the week of the Relay I came down with a nasty bug and I was unable to participate the night of the actual event. I was so bummed. But there is always next year and our team is pumped to do even better next time. Relay For Life is a great and fun way to raise lots of money for American Cancer Society and the fight to wipe out cancer.

That is the latest here. I will likely continue to make an entry now and then when Kevin has medical appts to keep this journal going. Thanks to whoever reads this anymore. Please keep Kevin in your prayers for continued good health and to remain cancer free.

Love to all,
Deb

Tuesday, February 1, 2011 9:24 PM CST

Today was MRI day and I'm happy to report ALL CLEAR! Kevin is great and his oncology dr. said he was "perfect" after his check up with her. Over the years things have become so much easier but MRI day is still scarey and a cause for anxiety. So grateful to God that Kevin is doing so good. Looking ahead, we know he'll have 5 more yearly MRIs of the brain and spine. We talked about it only being brain scans after this but because we've participated in a study since the beginning, Kevin is required to have both brain and spine scans. On another positive note, it looks very likely that he will be done with growth hormone injections very soon. We are waiting for the blood tests and bone age xray results to know for certain. But Kevin has not grown very much at all in the last 5 months so that is a good indicator that he is close to the end of needing the supplemental growth hormone. We will know soon, and if he does stop taking gh we will test in the summer to see if he needs an adult dose. Chances are he will not and that would be so nice. That would mean no more daily shots. But there is a chance he may need an adult dose to maintain the right levels. Please pray that he won't need this. Kevin would be so happy to stop giving himself shots every night.

It is a good day and we are so thankful. Thank you for following Kevin's health and please keep praying for him.

Love to all,
Deb

Sunday, January 23, 2011 10:24 PM CST

Hello,
I'm posting tonight because it's almost time for Kevin's annual MRI. It is scheduled for the morning of February 1st. He'll also see Dr. Bendel that afternoon. So a day off for both of us. Kevin has an appointment on January 25th with his endocrine doctor. This one is overdue because I had a hard time getting him in earlier. He also has an appointment on February 3rd with the ENT to follow up on his hearing and ear condition. I'll post a report after the appointments.

Kevin had his 16th birthday on December 21st! He had fun with some friends over for lots of food and lots of video games. Kevin is really into PS3 online along with his friends. It's fine as long as he gets his school work done first! : )

We had a nice holiday season. It was busy but nice to see family and nice to have some time off work and school. Can't believe it's 2011. Kevin's high school graduation year is 2013! Blows me away to think about it.

We just passed the 6 year mark (January 19th) of when we entered the world of childhood cancer. Tuesday, January 25th is 6 years since that first surgery. 6 years!

Thanks for staying with us and please keep praying for Kevin.

Love to all,
Deb

Tuesday, November 9, 2010 5:53 PM CST

Wow has it been a long time since I've posted here. Of course that is a good thing. No real news on Kevin's health other than he is doing great! I wanted to make an entry though because it's the time of year where we have to re-apply for assistance to pay for the growth hormone Kevin is still needing every day. I'm happy to say that we just got approval for another year. Last year he had to switch to a new brand of hormone and the company we are dealing with now is very helpful and their approval for assistance is a much easier process. It is clearly too expensive for the average person to pay for unless you happen to be lucky enough to have an insurance plan that pays more than 80 percent. Our co-pay is over $500 per month and Dan's income has changed significantly since losing his job last year. Fortunately, he has been back to work since March of this year but at about 30 percent less salary. We are grateful for the assistance as Kevin will be on growth hormone at this dosage for another year at least.

Kevin is doing so good and we are so thankful. He is having a good school year so far. Kev is looking forward to his 16th birthday next month. He hopes to get his driver's license very soon after his birthday. I'm not as excited as he is. He will be fine but it will take some getting used to for me to see him drive off by himself when the time comes.

I can't believe the year is almost over. The year just flew. Thanks to whoever still reads this. Please keep praying for Kevin!

Love to all,
Deb

Friday, June 18, 2010 9:06 PM CDT

***UPDATE July 1st: Went to see Dr. Levinson today. He was on the right track. Kevin's hearing has improved! The test shows it is back to where it was before. Very relieved and thankful. Dr. Levinson says there is no need to do an MRI. He would have ordered that if Kev's hearing had not improved. For now we just wait and see. He said he doesn't know if whatever happened will reoccur. We will go back for another check up after school starts on Sept. 9th. Hoping and praying there is no hearing loss again. Thanks to everyone who said some prayers for Kevin. Please keep doing so. Thank you!!! We plan to enjoy the rest of summer now.
End of UPDATE***


Kevin has been having some problems with his hearing. 2 weekends ago he told me one of his ears was ringing louder than usual. His ears have been ringing steadily for a couple years now since treatment. This is a typical effect of his cancer treatment and something he has learned to live with. But the louder ringing was concerning so I made an appointment to have him seen by his regular pediatrician on June 8th. She said his ear drum looked perfect and we should get in to the ENT asap. We saw Dr. Levinson on June 10th. He did an exam and then a very thorough hearing test. Kevin has lost some hearing in one of his ears (I can't recall which one right now). So, the course of action is a regimen of a very high dose of steroid and then go back for another hearing check on July 1st. It is not uncommon for sudden inflammation in the inner ear to develop after the chemo treatments Kevin endured 5 years ago. This may be what is going on and the high dose of steroid is the treatment for this. I remember being reminded of this possibility at Kevin's last check up in oncology earlier this year. So for now, we are treating for this. He will be done with the steroid regimen in a few days. This treatment can stop the hearing loss and actually reverse it if this is what is going on. That is all I have for now. I'll update after July 1st.

Anyone reading this, please keep Kevin in your prayers. Pray his hearing loss ends and hearing is restored back to where it was. Thank you for praying.

Love to all,
Deb

P.S. If anyone has experienced something similar to this with their child, please let me know.

Saturday, May 22, 2010 1:58 PM CDT

Kevin had 2 doctor appts last week. Endocrine and Ear, Nose, Throat. Both were follow-up appts. We had to see a different Endocrine doctor because I procrastinated on making his appt and the next one available for his regular doctor wasn't until August. They didn't want us to wait that long so they called when there was a cancellation for a different doctor. We had to go to a different clinic too. It was fine. She was nice and very thorough. She was a little concerned over Kev's weight. He isn't gaining much if at all these days so she suggested he do the opposite of what you usually hear...eat more fat and more calories. We'll work on that. He grew a little more and he's now 5' 8 1/2" tall. The doctor said his growth appears to have slowed down and it may be due to his not gaining any more weight. She wants him to get as much growth as he can while on the growth hormone so starting to gain more may help. Blood work was done too and I will talk to his regular doctor next week about that and this last checkup.

The ENT check up went really well. Not much wax build up at all this time. The doctor wants to try waiting a whole year before his next check up with him. He felt Kevin was doing that good so we were happy about that. If Kevin starts feeling like his ears are getting plugged or any hearing loss at all we'll go in right away. Kevin also had his hearing tested and that was good too. No change! So all is well with his ears and hearing.

Kevin is camping this weekend with Venture Crew. He joined Crew last winter. This weekend a lot of scout troops and crews will be camping. They are celebrating 100 years of scouting. I hope Kevin is having a great time.

Baseball is going good. His coach is very nice so that is good. I think Kevin will gain more confidence with each practice and game and I think by the end of the season he will be glad he was a part of it.

School is almost over. Kevin has had a good year his first year of high school. I'm so thankful for that. He is also driving a lot these days since getting his permit. He is growing up so fast. I can't believe how fast sometimes. Very thankful for all of it!

Thanks for checking on Kevin. Keep him in your prayers always.

Love to all,
Deb

Friday, April 2, 2010 11:40 AM CDT

Thought it was time for an update. I guess I will continue to update here when there is news about Kevin. The big news today is Kevin got his learner's permit last week! He is very happy about this. Dan has had him out driving quite a bit already. I think Dan is almost as excited as Kevin about this. That's good because I don't feel comfortable with driver's training at all. So, Dan can get all the credit for Kevin's success there. : )

Other recent news is Kevin will be playing baseball this spring for the first time since 4th grade Little League. That year was very tough at the beginning of treatment and his last year playing because the following year he was still in treatment too. After that Kevin did not want to play so he took a long break. Dan and I just didn't have the heart to push him either. Kevin wants to do it now but his confidence is down because he's out of practice. I'm hoping he can gain some of that back and just have fun with it again. He'll be in summer rec league which is not as competitive as other leagues so I think it's a good place to start out.

We are on spring break from school right now and the weather has been unseasonably warm. I hope it stays. We usually still have snow on the ground but with all this warm weather it melted so fast. I suppose we will still have some much cooler days yet this spring but the worst of the cold winter is long gone. No complaints here.

Next month we'll start going up to the lake again. Kevin can't wait to do the driving. He's also ready to go fishing. I suppose he'll be busy with baseball some weekends but when he's not I'm sure he'll be on the lake. We think this might be our last summer up there unless Dan can find employment soon. He has been off for 5 months now. It is getting discouraging for sure. But, he'll keep trying and we pray for something to happen soon.

Didn't mean to end on such a gloomy note but that's our reality right now. But, we never stop thanking God for Kevin's health and that always lifts our spirits. We will be okay and we keep praying for Kevin to be okay. Thank you all for your prayers too.

Today is Good Friday and we wish everyone reading a blessed Easter.

Love to all,
Deb

Tuesday, February 2, 2010 6:25 PM CST

MRI today. Clean and Clear!!! Praise God. Kevin is really becoming a grown up. He went in to the MRI by himself today. He was calm and only showed a little anger about all of it this time. I know he hates going back for anything to do with cancer. But, he really handled it in a mature way today.

Kevin also saw endocrine today. He is doing great in that department too. He is now 5' 8" tall. He didn't gain any weight in the past 3 months but he's still fine there too.

I'm so thankful!!!! Thank you to all who continue to check on Kevin and pray for him.

Love to all,
Deb

Kevin January 2010

Thursday, January 21, 2010 9:50 PM CST

It has been 5 years now since we entered the world of childhood cancer. I am so, so thankful that Kevin is a survivor. He is healthy and strong. Some days it still hits all of us hard that Kevin went through all he did. Just tonight Dan and I talked about the post traumatic stress that we still experience, all of us Kevin, Kate, Dan and I. It will probably always have some affect on us. But, more than that we are so happy and thankful that Kevin is here and most days are good and normal now. 5 years is a long time and reason for more good days ahead. I am truly grateful but I am also beginning to feel anxious because Kevin's next MRI is coming up soon on February 2nd. It has been a whole year since his last one. I will be very glad to get this one over with. Whoever is reading this, please keep Kevin in your prayers, especially on February 2nd. We thank you.

Love to all,
Deb

Wednesday, December 23, 2009 12:01 AM CST

Kevin celebrated his 15th birthday on December 21st! Here are some recent pictures.


Kev & Kate Dec. 2009


Kev & Kate Dec. 2009


Kev Dec. 2009


Confirmation Sunday, Oct. 25, 2009


Confirmation Sunday, Oct. 25, 2009

Saturday, December 19, 2009 12:23 AM CST

Thought it was time for an update. Not much new to report. Kevin received his mid-term grades for term 2. He is doing great. He has English, Science, Small Gas Engines I, and Intro to CAD. Kevin seems to really enjoy CAD. The class went on a field trip to Northwest Technical Institute last week. It is a small private college in Eagan, MN. Kevin said he might think about it in the future. He has some time yet to explore all of this but I know the years will go fast. So far high school is going okay for Kevin. He likes having only 4 classes each day now. This will change to 5 next year but I don't think that will be too much of a change. We had conferences this week and all his teachers tell us Kevin is a good student and does good work in school. I've communicated with all of them about Kevin's health history and how all of that has affected him for school. So far Kevin is getting the support and understanding from his teachers he needs to do his best. Every once in awhile I see him struggle but he is learning how to cope and ask for help on his own. If he needs me too, I step in, but so far this quarter he has not needed too much from me. It's hard to accept that things really are much harder for Kevin now than before cancer. I sometimes wonder how he would be doing if it hadn't happened. I know school was much easier for him and he enjoyed much more. He had a lot more friends and wanted to do more. He has changed so much. He is more serious, more reserved. It is hard not too worry about this. We do what we can to help him. Like when he gets an opportunity to be with friends, we do all we can to make it happen. The field trip in school meant missing other classes and he worried about what he would miss but we worked it out to help him get caught up. He gets invited to something and we have plans, we cancel and work it out because it is rare he gets invited. I know he could have more friends if he was more outgoing, but he isn't so we do what we can to help him feel okay. He doesn't complain about any of this so there isn't any one thing we can say is wrong. We just want him to enjoy life more. Today Dan and Kevin are out snowmobiling with uncle Bob and cousin Sam. Kevin loves that.

Kevin's birthday is in 2 days. He will be 15! We are coming up on 5 years since diagnosis. I can't believe it has been that long. I am so thankful for how good Kevin is doing. When I remember that, the other struggles are not so big. Every day is a gift.

Dan is still unemployed. We are hopeful for good things to come in 2010. The holidays are here and we look forward to being with family.

Thanks for stopping by to check on Kevin. Keep him in your prayers. Merry Christmas!

Love to all,
Deb

P.S. I will post a picture of Kev on here soon.

Friday, November 6, 2009 12:16 AM CST

Today is the last day of 1st quarter. Kevin’s has been doing fine in school. Some classes are harder than others but he’s doing okay. I miss his smaller school and knowing he was getting all the attention he needed every day. There were only about 15 students in his classes and now he has around 30. The high school he goes to is huge. It has definitely been an adjustment for Kevin and me.

Kevin had an appointment on October 27th with his endocrine doc. Since his last check up with her in July he has gained 6 pounds and grew another half inch. He is right where he should be, 50th percentile for height and weight. That is all great! There is a concern now, however, with Kevin’s reproductive system. We were told way back in the beginning of treatment that there may be long term effects in this area and with his last check in July and again this time it appears he is showing signs of problems with this. The doctor is going to contact some of her urologist colleagues to determine if it is appropriate to look into this at his age or if it can wait until he’s older. I’m hoping we can wait as I know Kevin is so young to have to think about all this right now. I’m sad that he has to face yet another problem but it will be something we can deal with if we have to. We are just thankful for Kevin’s good health overall.

Unrelated to Kevin, we have had a very difficult week. Dan found out Monday that he was being let go from his job. It was unexpected and we are still processing that this has happened. Dan worked at this company for many years, but I guess in this economy this is becoming all too common. We are going to be okay but the unknown is always a little scary. Your prayers for Dan to find some work would be greatly appreciated. Please continue to pray for Kevin also.

Love to all,
Deb

Friday, October 16, 2009 12:31 AM CDT

Update today is to ask everyone who reads here to keep Kevin in your prayers. He is just fine. But, I try to never take that for granted. I try to thank God every day for his good health and how great he looks and how good it is to have things plugging along as normal as can be. When I get caught up in whining about the bills or the house in disarray (and I do this a lot) something reminds me of how very hard life can really be if someone is really seriously ill. This week the reminder has come several times. A young boy died and left his family behind to go on. And then a few days ago another fellow cancer survivor, another young man, is faced with some devastating long term affects of cancer and it's treatments. Stark reminders of how quickly life can be turned upside down. So I ask all of you to never stop praying for Kevin and your own loved ones and the many other families who are suffering with deadly illnesses. Let's be thankful for what we have and for a loving God who is always a prayer away to help us through whatever struggle life throws at us.

Love to all,
Deb

Saturday, October 10, 2009 2:03 PM CDT

This entry is to let you know our dear friend Kyle Pierson passed away last night. He fought the good fight for a long 5 years. He left us and went home to His heavenly Father and he is now at peace, free from pain and suffering. Now his mom, sister and the rest of his family need to learn how to remain here without him. I have been in tears for them. But for Kyle I am trying to rejoice because my faith tells me he is happy and healthy with Jesus now. The angels are celebrating with Kyle today. We will miss you, SuperKyle.

Love to all,
Deb

Monday, September 21, 2009 10:43 PM CDT

***Update September 23: There is a birthday party planned for our friend SuperKyle on Saturday at his school Morris Bye (same elementary school Kev went to). I'm sure everyone that knows Kyle already knows about the party. You can get all the details on his caringbridge site: caringbridge.org/visit/superkyle

Kyle has a fund for donations listed on his page. End of Update.***

Wow! Long time since I've posted. The summer went by so fast. Kevin is back to school and I've been back to work for over a month after a 6 week break. We had a nice relaxing summer. We spent a lot of time at the lake. Kevin enjoyed fishing and 4 wheeling. Kevin is in high school! He doesn't tell me much at all these days, but I think he is liking it. As usual he is working hard on his homework and he hasn't had any complaints so I will take that as things are going good for him.

Kevin had 2 routine check ups in July with endocrine and ENT. Nothing to report really, he's doing fine. He'll have those check ups again in October/November. Next big check up with oncology and MRI will come around in February/March a full year since the last.

We are always thankful for Kevin's return to good health and never forget all he went through.

I am very sad to say our dear friend SuperKyle is not doing well and his journey with cancer will soon be over. It is so heartbreaking. Kyle has been fighting for so long. Please pray for him and his mom Teresa and sister Kiana. I don't even have words to express how sad I am about this.

Thank you for checking in on Kevin here. Here is a picture of him from this summer at our lake place.



Love to all,
Deb

p.s. I'm on Facebook so if you are too, add me as your friend. : )

Saturday, May 30, 2009 2:12 PM CDT

***UPDATE: Adding a picture of Kevin from our last trip to the lake...



END OF UPDATE***

Kevin has one more week of middle school. I can't believe how fast 3 years went by. The beginning of 6th grade was just a few months after his last chemo treatment. He was still feeling the effects of treatments that entire school year. Wow, has he come a long way since then. 7th grade brought the beginning of growth hormone treatments and we saw lots of improvement in strength and stamina that year. 8th grade went by in a flash. Kevin is biking in phy-ed this quarter and some days they ride around 15 miles. He is having no problems keeping up with that so that tells me he is doing great! Kevin has passed me and Kate up in height now and his voice is trying really hard to change to a lower octave. Academically, Kevin has kept an A average all through middle school making the A honor roll every quarter! Not that it has been easy, but he is the type of kid that perseveres. Oh, he gets tired of it and lets some things go, especially at the end of the year, but he is a very determined student most of the time. Next it is high school and a move to an almost 3000 student school population...quite a contrast to only 120. I think I'm more worried about that than him. My prayer is that he gets reacquainted with old friends and makes some good new ones. That will make things fun and the rest will fall into place. No doctor appointments until the end of July and that will be with endocrine and ENT, so nothing major at all this summer. We plan to take it easy enjoying our lake place and having nothing to do for awhile. I will have 6 weeks off starting on June 19th. After a week at home getting a little done around here, I plan to head up to the lake for at least 3 weeks straight. Can't wait...

Have a wonderful summer everyone who stops here to read this! Please keep Kevin in your prayers for continued good health.

Love to all,
Deb

Monday, April 20, 2009 9:10 PM CDT

Kevin went to an ENT specialist last Thursday (4/16). He was referred there by the audiologist after a visit there the week before. He was referred because his left eardrum was not responding well to the tympanogram. This has been the case pretty much ever since radiation treatments ended way back when. However it has not affected his hearing until this last visit so off to the ENT we went. The ENT did a thorough wax removal. The left ear had an extreme amount of wax built up inside. So much that skin was surrounding it. It took some doing to get it all out. It was pretty uncomfortable for Kevin but like always he endured it gracefully. Watching this procedure very quickly brought back some memories of all Kevin went through not all that long ago. Sometimes it feels like so long ago but in one minute it all comes back. So now we have another specialist to add to the list. Kevin will go back to this dr. in 3 months to make sure the wax doesn't build up again. It will be every 3 months until the dr. feels it can be spread out to 6 months. Kevin was not happy about all this but he will do what he has to do. The good news is right after they did the wax removal, he had a hearing test and it showed that his hearing improved. Thank God for that!

Kevin also had neuro-psych testing a few weeks ago. I will meet with the psychologist on Friday to go over the test results. I will take this information with me to school for updating Kevin's 504 plan for next year.

Other than that we are starting to think about summer and the end of the school year. I think it will be here before we know it. We have had some nice and warm sunny days but then we get a cold front like today. The warm days make it hard to take the cold and gray ones.

That's all for now. I'll journal again when there is news.

Keep Kevin in your prayers.

Love to all,
Deb

Thursday, April 9, 2009 1:04 PM CDT

Kevin had appointments this week on Tuesday 4/7 with Dr. Abuzzahab (endocrine) and audiology. He needs to see endocrine every 3-4 months. That appointment went very well. He had labs drawn back in February for his thyroid and growth hormones. All of those results came back excellent! Kev had not seen Dr. A for 5 months (we were overdue) and since then he has grown 1 1/2 inches. He is now 5' 5 1/2". He also gained 5 pounds. So that was all good. Then he had hearing tests in audiology. It has been over a year since he has been seen there. The good news is that his high frequency hearing loss has not changed. But, it was determined he has some fluid or congestion in his left ear that did show up as affecting his hearing right now. This audiologist has wanted Kevin to be seen by a ENT specialist for awhile now because of the way his left ear drum tests. She said now would be a good time to follow through with seeing the ENT. So I will get that appointment set up now. Kevin was a little irritated with the thought of seeing another doctor because he thought he would be all done for awhile. I'll journal more about what happens with this visit after it is done.

We got Kevin's 3rd quarter report card this week and once again he is doing great. The only class proving to be a real challenge is English/Literature but his teacher has been working with him to help him stay on track.

Dan and Kate celebrated their birthdays this week, Kevin and I have a 4 day weekend, and it is Easter Sunday in a few days. We are all ready for spring to really get here. It seems to be bound and determined to stay cold. I am so looking forward to summer this year.

That is about all for now. If anyone reads this I hope you will sign the guestbook. Thanks for checking on Kevin and please keep him in your prayers.

Love to all,
Deb

Wednesday, March 25, 2009 1:29 PM CDT

I'm sitting here in the Family Resource Center at Children's. Kevin is fine. He is doing neuro-psychological testing across the street today. This was originally scheduled for April 30th but we got a call last week that they had an opening today so we took it. It will be nice to get it done earlier so we get the results and report well before the end of the school year. This report will help in updating his 504 Plan for high school next year. This is the third time he has had this testing. It is something he needs to do since he had radiation and chemotherapy treatments for brain cancer. All of that has affected his learning in numerous ways. We were told today that he will benefit from another set of tests when it comes time for him to do college testing (SAT, ACT, etc.) where an updated report at that time will determine what types of accomodations he will need. It will be likely that Kevin will benefit from being allowed extra time on these types of tests. Typically these tests are timed tests and scores are based on the amount of correct answers given so if he needs more time to be able to do this we will make sure he gets it. Kevin does very well in school in almost all subjects if he's is given enough time to process all the information and tasks set before him. So far he has been able to succeed in school very well since his illness. He is moving on to high school next year and very likely to a new and much larger school so it is very important we get the tools we need now to get him the help and support he needs to keep succeeding in school. It is a lot of work for Kevin and for me and Dan but we will do what we have to do. I feel pretty good about him moving on the Coon Rapids high school since Kate was just there and I know the people we will be working with in the guidance office. The people I know from Kate's high school days were all very nice and supportive, that helps!

This testing takes most of the day. He has already been testing for almost 4 hours and has about 2 more to go. They gave him a break for lunch so we went to McDonald's. Kevin seems to be in an okay mood today for this. He's not overjoyed by any means but he is pleasant and cooperative enough. It seems to be easier for him to come back to Children's these days. I'm glad he is not so anxious about these visits anymore.

It is nice that winter is pretty much over now. It was a long winter but the school year is going fast. I am so looking forward to spring and summer. I have been daydreaming about the lake a lot lately. It won't be long until we are up there getting things ready for the season. We all can't wait for that!

Thanks to whoever still checks on Kevin here. Please continue to pray for his health and happiness. We really appreciate that.

Love to all,
Deb

Thursday, February 26, 2009 5:00 PM CST

Kevin had MRIs on his brain and spine today. Result: ALL CLEAR!!!! Praise God!! He also had a check up with Dr. Anne Bendel, Oncologist. Kevin measured in at 5'5" tall and weighs 111 pounds. Both those measurements put him very close to the 50th percentile. Dr. Anne was happy with all of that. Kevin will not need another MRI until Feb. 2010. Kevin was happy with that! Next appt. is with endocrinology on April 7th. After that he will have neuropsych testing on April 30th. Those tests will be helpful in updating his 504 Plan for high school.

That's the latest. We are very thankful for another MRI to be done with good results. Thank you everyone who continues to pray for Kevin. Thank you Jesus!!!

Love to all,
Deb

Saturday, February 7, 2009 12:44 AM CST

Thought I'd post an update that it's time for another MRI and check up on February 26th. After this one Kevin won't have another MRI for 12 months. He will be glad about that. It will be nice to not have to go again in 6 months but I know after 12 months it will be very nerve wracking knowing it has been that long since we have had a look at everything. But, if I've learned anything through living with cancer, it is best not to look that far ahead. It doesn't help anything and only keeps you from enjoying the healthy here and now.

Kevin is fighting a cold but it isn't too bad. He and Dan have been snowmobiling as much as possible because on Feb. 17th Dan is having surgery on his shoulder. Dan won't be able to do much of anything for awhile since he will only have use of one arm while he's recovering. He will be in physical therapy for a long time. Please keep him in your prayers.

Kate is in her 2nd semester at Anoka Ramsey Community College and working part time for Community Ed. I know she wishes she were out on her own, but it is so convenient to have a college so close that she can live at home.

I have been busy at work always but I love my job and the people I work with have made me a part of the team. I am so lucky and blessed to be there.

Dan's job is going really well. We are so thankful for this in this uncertain economy. There was a time not too long ago we thought he would be laid off but God answered our prayers and has kept Dan employed. I KNOW this was a God thing the way things happened.

Whoever is reading this, please keep Kevin in your prayers for a clean and clear MRI on the 26th. As always it will be a anxious time until we know for sure.

Thanks for checking on Kevin!! Looking forward to spring...

Love to all,
Deb

Friday, January 16, 2009 1:40 PM CST

It is freezing!! But by Monday it will be about 50 degrees warmer with temperatures in the 30's. It was -23 this morning. I can't help but think about how thankful I am for my truck with 4 wheel drive and the furnace in my house. Looking forward to summer already....

Kevin is fine. He went on a 4 day school trip last week for school called Youth In Government. It was fun and he learned something. It was strange for me to have him gone that many days knowing he was on his own. There were a lot of adults supervising but you know what I mean.

Monday marks 4 years since we detrmined that Kevin had a brain tumor. This time of year brings back many memories of those dark days. Again, I can't help but be thankful to God for how He has taken care of everything for Kevin and all of us.

Hug your kids and be thankful for them.

Love to all,
Deb

Thursday, January 1, 2009 12:01 AM CST

Just wanted to say HAPPY NEW YEAR!!

Kevin had a sleepover party last night to celebrate his 14th birthday. Just a few friends from school. Kevin, Sam and Dan are leaving for the lake today to get some snowmobiling in. We are getting lots of snow this year so far so they are very happy.

Here are a couple pictures from last night's party.







Picture I took for our very late Christmas card.


We had a very nice holiday with friends and family. I'm enjoying some time off. It will be hard to go back to work on Monday. Thanks for stopping by.

Love to all,
Deb

Sunday, December 21, 2008 11:12 AM CST

Happy 14th Birthday Kevin!!!!

God bless you always!

Wednesday, December 10, 2008 10:37 AM CST

Good news!! We have been approved for assistance with the copay for Kevin's growth hormone medication. We are getting the same grant amount as last year which is so helpful!! I am so thankful and relieved to get the help. We are trying hard to pay off all our medical debt so with this help we can keep moving forward with this goal. Thanks to everyone who was praying for us!

Some not very good news to share is my brother-in-law Rick is in the hospital. Rick is having problems with his heart. He blacked out on Monday while driving. Thank God his car bumped into an empty parked vehicle and people were nearby to administer CPR and call an ambulance. He did not have a heart attack but his heart stopped and he needed reviving. Rick is doing better but many more tests are being done to find answers. He wasn't hurt from the accident. God was definitely looking out for him on Monday. Please keep Rick and Annette in your prayers.

Thanks for stopping by to check on Kevin. Please continue to pray for Kevin's good health.

Love to all,
Deb

Wednesday, November 26, 2008 8:20 AM CST

***Update Dec. 3rd: I applied for copay assistance on Dec. 1st and I was told we qualify for another year. The foundation faxed me the application forms, we filled them out, got Kevin's oncologists signature, and faxed them back last night. We are now waiting to hear if we are approved and for how much. I'm glad we qualify but until I get the final word on approval and what the amount will be, I am still a little nervous. Keep praying!! I'll update again when I know. Thank you!
End of Update***


Happy Thanksgiving!!

Kevin's endocrine appointment yesterday went great. He weighs 106 lbs. and he is 5 ft. 4 1/2 in. tall! To put this in some perspective, Kevin gained 11 pounds and grew 2 inches in the last 7 months. All his labs checked out very good. He growth hormone levels and thyroid levels are right where they should be so no changes on his meds.

December 1st is the day I reapply for assistance with the $525 per month copay we will be faced with in January for Kevin's growth hormone. Without the help, it will certainly be a hardship for us. Please pray for us to receive some help. Thank you.

I hope all who read this will have a wonderful Thanksgiving with friends and family. Thank you for stopping here to check on Kevin. Thank you for your prayers!!

Love to all,
Deb

Sunday, November 9, 2008 2:45 PM CST

A few recent pictures from the grouse hunting trip Oct. 17-20:


Taking a break at Kawishiway Lake


Searching for birds...


Another stop at Palisade Head (Lake Superior)

Here is Kate before a Halloween Party:



It is hard to believe that it is over a month since my last entry. My days seem to really fly with my new job. It is very busy every day.

Kevin is doing great. He has been very healthy this fall. He had a little cold but got over it quickly (good vitamins). 1st quarter just ended and he has straight A's on his report card. Way to go Kev! Perfect attendance too. 8th grade is off to a good start. Kevin is participating in Youth In Government with about 15 students from his school. Other schools around the state participate in grades 8-12. The students involved will be preparing for an event in January where they spend 3 days in a hotel in Minneapolis modeling the government. One of the days is spent at the state capitol. It is a serious learning experience in Civics but also a lot of fun. They plan a lot of fun activities during the event like parties and dances. It should be a very good experience.

Kevin has a doctor appointment with his endocrine specialist coming up on November 25th. His next MRI will be in February. It sure is nice to have visits few and far between now.

It's hard to believe it but the holidays will be here before we know it. I think we're in for some snow soon too. It was coming down yesterday but nothing stayed on the ground yet. It's cold today and it feels like winter. Kevin's birthday is next month. I can't help but thank God for how blessed we are when I think of Kevin turning 14. Thinking of that make life's disappointments fade somehow.

Thanks for stopping here to check on Kevin. Please keep him in your prayers to stay healthy and strong. Please pray for other kids who are still battling cancer and other diseases. Thank God for taking care of their families too. And of course, pray for those who have lost their loved ones.

Love to all,
Deb

Saturday, October 4, 2008 12:36 AM CDT

It has been awhile since I've posted an entry. I think this is the longest time that I've not written. It is good that I don't have anything to report anymore. Kevin has been doing very well. He is healthy and strong. We had to buy all new school uniform pants this fall. I had just bought many new pairs in the spring but they were all too short. The growth hormone he receives every day is doing it's job. Unfortunately, the assistance we were receiving to pay for this ran out last month and we now have to come up with the $525 co-pay. I can re-apply for assistance in December and I will definitely do so. We'd like him to continue to benefit from this medication.

The school year has started out great for Kevin. He is in 8th grade and it is already mid-quarter. His mid-quarter grade report is excellent. I have not heard any complaints about school at all. I really hope this can continue. It was tough at the end of the year last year so I'm hoping this good start can continue all year.

I started a new job in August. My previous position was cut. Fortunately, I was able to be placed in a new position right away. I am back in an elementary school office. This school is 3 times the size of Hamilton and the workload and pace is quite different. There are 3 full time secretaries in the office and there is never a dull moment. The staff is great and everyone has made me feel very welcome from the first day. I'm very grateful for a very good job.

Kate is attending classes at Anoka Ramsey Community College and she seems to be really enjoying it. She has classes every day except Thursday. Some days she has 3 classes and some she only has 2. The classes range from 1 to 3 hours each session so it is quite different than the regular high school schedule. She seems to have adjusted to it well. She will start working a few hours a week for Community Ed again next week.

We closed up our lake place last week. The summer went so fast it seems we just opened it up! I spent close to 4 weeks up there during my time off in July. I hope we can continue to enjoy it next summer. Dan and Kevin are planning a trip up to the trailer before the snow flies to check it out and enjoy the 4 wheelers one more time. That probably will happen in November.

Before I close, I want to ask whoever is reading this to please say some prayers for our good friend Kyle, aka SuperKyle. It was just determined that the cancer has returned in numerous places. The doctors have said this is still treatable, thank the good Lord! His family will have to take him to Ohio for treatment though. I know our prayers will help them all through the hard days ahead.

Maybe no one is checking this site anymore, but if you are, thanks for stopping by to check on Kevin. Thanks for thinking about him and please keep praying for him to be healthy and strong. Here is a picture of Kevin from the last time he was up at the lake...



Love to all,
Deb

Tuesday, August 12, 2008 8:04 AM CDT

***Update Tuesday night: The MRI shows everything is stable! No evidence of recurrence anywhere! It was a long day. The MRI took a long time as usual. We were on time for our 1:00 clinic appointment, on time to sit and wait. Everyone was behind schedule there. We saw our first specialist at 1:40 and then waited until almost 3:00 before we saw anyone else. The rest of them sort of all came in at once after that. We got out of there just before 4:30. Kevin checked out great with everyone. He doesn't have to go back for another MRI for 6 months. After that he will go to once a year MRI's. He will continue to see his endocrine doctor every 3-4 months. Kevin is now 5'4" and weighed 100 pounds!! I think he was happy with that information today. He is at the 50th percentile now which means he is now growing at the average rate for his age. As usual there were a few moments of fear for me after the MRI, especially when we had to wait so long in the clinic. It made me wonder if they weren't coming in because there was something wrong they needed to tell us. The first doctor we saw only asked about sleep problems and had no news about the MRI. The next 2 people were a nurse from neurosurgery and the oncologist, Dr. Bendel. They came in together and wasted no time to tell us the MRI looked great. The fear instantly left. Kevin handled today pretty well. He still had some complaints about doing this again but not a lot. I know he was sad last night but he didn't carry on like he has in the past. I think he did really well this time. I'm glad to have another MRI behind us. Thanks for checking on Kevin and for your thoughts and prayers. We are very thankful to God.

End of update***


Please keep Kevin in your prayers today for continued good health and good test results. Today Kevin has an MRI of his brain and spine. Then we meet this afternoon with all his specialists for a thorough review of how Kevin is doing. This routine follow-up. I'll update later. Thank you all!

Love to all,
Deb

Friday, July 18, 2008 11:37 AM CDT

***Update Friday night: The doctor thinks Kevin's cough is due to seasonal type allergies. He gave us some samples of xyzal (much like claritin only better) and a prescription for an inhaler with allerbuterol (sp?). He told us not to fill the prescription until we've tried the zyzar first. Kevin had to use an inhaler last fall around Thanksgiving when he was having trouble with a cough. Kev hasn't coughed much at all today so I'm hoping he has a better night. Last night he had a hard time getting to sleep until after I tried several remedies including cough syrup, a room humidifier, and finally I put him in the bathroom and ran the shower hot for about 10 minutes and gave him another dose of cough syrup. He slept after that and hasn't really coughed much since. It has been a strange cough/cold for sure. Hopefully, we're onto the right path now to get rid of it.
End of update***

Thought it was time to post an update. We are having a very quiet summer. Kevin and I were at the lake for 2 weeks from June 27th to July 7th. It was very relaxing. Sam came on July 3rd and stayed with us. Kevin and Sam did lots of fishing and 4 wheeling. They had a good time. Dan was there for the first week and I know he's ready to get back up there as I am. I have 2 more weeks off work so I'm trying to enjoy it as much as I can. We're not doing much of anything but it has been nice to slow down.

We had Kate's graduation party on June 21st and it was so much fun. We had all worked hard on getting things ready and it was all worth it. We had lots of family, friends and neighbors come to celebrate Kate's high school graduation and to wish her well for her future plans. Kate went to a 2 week youth camp right after the party with her good friend Mica. Since then she has just been hanging out at home, sleeping late and getting together with friends. She has orientation at the community college on Monday. It will be time for classes soon.

Here are some pictures from the party...


Kevin trying not to smile.


Kate with her cake.


Some of the many friends who came.


Lots of cousins!


Kevin has been fighting a cold for 3 weeks so we are going to the doctor this afternoon. It seemed to be going away but yesterday he started coughing again so it's time to get in to get checked. We had him seen at the clinic in Big Fork while we were up north 2 weeks ago and at that time they felt it was just a summer cold. But, since it is not letting up and even seemed to be worse yesterday, I need to see what's going on.

Kevin is kind of bored this summer. He had fun with Sam but he isn't doing much at home. We need to find something for him to do for the rest of the summer.

Kevin has his next MRI scheduled for August 12th. We'll also have comprehensive clinic that day where all the specialists see Kevin over 4 hours. It is a thorough review of how Kevin is doing. I'm hopeful for all good news because Kevin has been doing fine (other than this cold). I'll update all we find out.

I hope everyone checking on Kevin is having a nice summer. Let us know you stopped by.

Love to all,
Deb

Friday, June 6, 2008 3:28 PM CDT

***Update Sunday 6/8/08: Pictures from Kate's Graduation Day June 4, 2008


Happy Graduates Kate and Jacy


Congratulations Class of 2008!!!


Kate & Kev on Graduation Sunday 6/8/08

End of Update***


Friday 6/6/08:
Kevin is moving on to 8th grade! Yesterday was the last day of school at Kevin's school. He had a fun week. Monday, Tuesday and Wednesday were spent at Audubon Nature Center. Most of the school attended and they had a good time even with the rain. Kevin was disappointed that he didn't get to go canoeing but the climbing wall was really fun he said. He surprised himself with how much he liked climbing so high. The last time he did something like that was when he was pretty weak and it was not so fun, but he really did well this time. He felt pretty good about putting the memory of struggling with it behind and now has a good memory of mastering it. He said the food was good too. He has had a huge appetite lately that we wonder where he puts all the food he is eating some nights. He's growing taller but not wider and he wishes he would fill out more. We remind him how slim his dad always was as a teen and how he is still not such a big guy. Kevin's best friend is very big for his age so it's hard for Kevin not to compare himself to him but he really can't since his friend has always been bigger than average.

Kevin ended his school year with very good grades once again and all the homework and hours he put in paid off. It will be very nice for the summer break. He really had a tough 4th quarter.

Kate is a high school GRADUATE!! The graduation ceremony was Wednesday night. It was nice and orderly. It only took 1 1/2 hours to hand out over 700 diplomas. I shed a few tears but mostly we were just happy to see Kate so happy and excited. I will put some pictures from her special day on here soon.

I have 3 more weeks of work and then I will have a month off! I'm very ready for the break. It has been adjustment working 8 hours a day. I'm grateful for the time off and I plan to spend 2 weeks straight at the lake. We went up on Memorial Day and I was reminded how good having the place is for us. It really helps to get away and put all our troubles behind for a little while. I hope we can keep our little place at the lake. It is getting to be a little pricey with the gas going up so much and everything but we will do our best to hang on to it.

That is the latest here. Kevin is doing good and even better now that he made it through another year of hard work at school. Thanks for checking on us. If you could please leave a message we still love to see them.

Love to all,
Deb

Saturday, May 17, 2008 0:07 AM CDT

School is almost over! Kate is about to graduate (what?!!) and Kevin is about to finish 7th grade!! Graduation date is June 4th!!!! Kate has switched gears and will be attending Anoka Ramsey Community Colllege this fall. MCAD is still on the horizon but postponed for a year. Kevin is getting tall which I think has made him feel pretty good...YES!!! School has been a challenge lately and Kev's trying to get through the rest of the year. Dan and I are grateful for the support he receives at Cygnus. It will be nice to have the year over.

IMPORTANT--Read on.....

Please support Relay for Life!! I have joined the Superkids team and I'm already receiving help from my friends. Please go to this website and join our team or make a donation. Any amount will help! Thank you!

Please click here to support the Superkids team!

Wednesday, May 7, 2008 1:43 PM CDT

Please support Relay for Life!! I have joined the Superkids team and I'm already receiving help from my friends. Please go to this website and join our team or make a donation. Any amount will help! Thank you!

Please click here to support the Superkids team!

Tuesday, April 8, 2008 9:17 AM CDT

***Update Tuesday afternoon: Kevin has grown 1 1/4 inches (which makes him 5' 2") and he gained 8 lbs. in 4 months!! Lab work came out really good so no changes in his meds. Kevin has no need to go to Children's until August now. He's happy (me too)!
End of update***


HAPPY 18TH BIRTHDAY KATE (TODAY)!!! HAPPY BIRTHDAY DAN (APRIL 7TH)!!!

Nothing much to report except that Kevin has an appointment with his endocrine doctor today. He needs to see her about every 3-4 months to monitor his growth and thyroid issues. He is not happy about it as usual but it will be a quick check up, no pokes or scans. It is just a hassle to miss school and work, but what can we do? He had all his labs done when he was there last month so we'll hear the results of all that. Hopefully there is no change so he can stay on his current levels of medication.

Otherwise, 3rd quarter just ended. Kevin got his report card and it looks great. A honor roll again! He works so hard so it's nice to see it pay off. We haven't received Kate's report card yet but it should be here soon. She is getting anxious to graduate. This last couple months will be so busy that she will be done before we know it.

Minnesota has been having the strangest weather this spring so far. It is still snowing in places but we have been getting some rain now. I'm ready for lots of sun and green grass and budding trees...it's almost here.

Thanks for checking on Kevin. He is doing great!

Love to all,
Deb

Friday, March 14, 2008 8:37 AM CDT

***Update Tues. March 18: Just wanted to post that Kate just had a short hospital stay from Sunday night late until last night. We got home from Duluth and very suddenly Kate was in severe abdominal pain. With her history of obstruction this looked all to familiar so off to the ER we went. After an xray it was found she did not have an obstruction but was full of air all over her abdomen which caused all the pain...Ouch! They helped her get relief and admitted her for observation and after an IV and a shot of morphine she felt much better. She was discharged around 5:00 last night. The cause is a mystery which is often the case with Kate's situation. We are just thankful she got better as fast as she did. Now we're home enjoying our break. Kevin has 4 friends over right now. We went bowling and now they are just hanging out. That is the latest.
End of Update***


From Friday March 14:
We have school spring break next week. Kevin, Kate and I are so ready for it. The weather around here has actually warmed up quite a lot this past week. The snow is quickly melting. I know we could get more but the worst is over.

Kevin has been healthy and he's growing. He is definitely a 13 year old and can show some moodiness. The hard part of becoming a teen is here. Now that I've seen Kate go through it I know it will get better for him (and me).

We got great news a couple weeks ago. Kate has been accepted to Minneapolis College of Art & Design. She is so happy! Now we are taking care of all the business that needs to be done to get her all set for college. The rest of the school year is going to fly.

Not much else to say for now. We are looking forward to our week off and also to celebrating Easter.

Think spring!

Love to all,
Deb

Wednesday, March 5, 2008 9:46 AM CST

Just a quick update. Kevin is great! He is fighting a little cold but it seems to be going away already...good vitamins and Airborne are the key. We just had a meeting yesterday at his school to update his 504 Plan. It went really well. The team we put together was so willing to help Kevin succeed. Dan and I left the meeting feeling really good about this. Kevin has been getting very good grades but he works very hard to accomplish this. He is very capable but he works at a much slower pace so when the workload increases sometimes he gets very overwhelmed. He needs someone at school to help him manage this and there are things they can do to help if they know how Kevin is feeling. We also need his teachers to be aware of things that cause Kevin stress. They need to know what things are more difficult for Kevin. All of these things have been addressed and everyone should be able to help Kevin when he needs it. Kevin can do most everything like everyone else, he just needs a little help here and there. As he gets older it is important we keep his 504 Plan up to date and appropriate. We feel we accomplished that yesterday.

We are getting snow today. Winter in Minnesota stetches on... Dreaming of spring.

Thanks for checking on Kevin.

Love to all,
Deb

Friday, February 8, 2008 3:23 PM CST

***UPDATE Wednesday 2/13/08: I went to Kev's school this morning for an "Honors Assembly". It was great for everyone. All the A and B Honor Roll students for 2nd quarter were acknowledged and received pins. Also perfect attendance awards were given. There were a lot of kids who have not missed one day all year! Each teacher gave out medallions for "Good Attitude" and "Reaching for the Stars", for things like improving, being helpful, working hard every day, respect, reaching goals. Kevin made the A Honor Roll and got a medallion from his Literature teacher (for the 2nd time). The award from Literature is meaningful because I see Kevin work extra hard in that class. Kev also won the Pizza Party award for having the best football picks in his phy-ed class. It was great to see all the kids get honored today. We missed this last quarter because Kevin was sick that day. Anyway, way to go Kev!!
End of Update***


From Friday 2/8:
MRI results are in and EVERYTHING IS NORMAL!! It is so nice to have another scan done and to know all is well. Kevin got through the labs and IV placement without too much drama but boy did his blood flow fast. The nurse had quite a mess to deal with. She did a great job keeping Kevin from being worried about it and kept him looking elsewhere.

Kevin checked out really well with his doctor visit. He is up a pound and his height is 5' 1", he is just below the 50th percentile for height. Dr. Bendel checked his chart and said he was just above the 50th percentile when she met him 3 years ago. So, he is just about back to where he started. The next visit in 6 months will be a thorough, all day comprehensive clinic visit and will include staff from Neuro Surgery, Endocrinology, PT & OT, and Audiology. This will take place in August before school starts.

Kevin got all his questions answered about what happens down the road. He didn't understand it all but he got the gist of it. He has 2 more 6 month MRIs (August 2008, February 2009), then he'll have yearly MRIs for 3 years. After that he will have an MRI every 2 years until 10 years off treatment. Dr. Bendel explained that is the thinking at this point in time but she wanted us to know as time goes on this plan could change. She said after 5 years and beyond it is more unlikely that medulloblastoma will come back but in very rare cases she has seen relapse between 5 and 10 years. After 10 years recurrence of medulloblastoma is not an issue. However, after 10 years scans are still recommended about every 3 years to detect other long term affects of radiation. She mentioned things like vessel changes and other types of tumors on the surface of the brain. We also talked about hearing loss risks. Even after 5 years there is a risk of sudden hearing loss, another long term effect of radiation. This hearing loss is caused by inflammation of the nerves in the ear. There are treatments to resolve this and bring back hearing if caught in time. Kevin was told to be sure to let us know if he suddenly cannot hear out of one of his ears. I think Kevin still gets overwhelmed at hearing all of this but I think he is glad to hear the check ups will get further and further apart. It is hard for him to think so far ahead and think he still has to go back for all these scans and check ups. We were also told to have him seen by an optometrist to get a base line for how his eyes are doing. There are risks of cataracts and other problems. Again, from radiation.

Even hearing all of this, I am so thankful with the results today. I feel all of these possible risks can be dealt with if we are faced with them. Hearing Kevin continues to be cancer free is the main thing. We thank everyone who said some prayers for Kevin. God has heard and answered them!!

Love to all,
Deb

Sunday, January 27, 2008 4:44 PM CST

It has been awhile...

Kevin has been doing just fine. 2nd quarter just ended on Friday and we will soon see his latest report card. I've checked on his grades online and he is doing very well. He is having a very good 7th grade year so far. This makes me very happy since last year there was lots of anxiety and when he's worried, I'm worried. I have rarely had to go to his teachers for help this year. Kevin still worries and wants to do his best always, but the difference is he is handling things on his own much more this year. The new administration at the school has something to do with a calmer atmosphere for everyone. I think the teachers are much happier this year too. I'm glad we returned to Cygnus. It is nice to know that next year things will be good too.

The main reason I'm here writing is to let everyone know that Kevin's next MRI and check up is scheduled for Friday, February 8th. Kevin saw this on the calendar already, I usually don't tell him about it too soon. He's not saying much yet, but it's on his mind. He always dreads MRI's and anything to do with the hospital. Please keep Kevin in your prayers for clear and clean scans and continued good health. Thank you!!!!!

Otherwise, we are all just getting through winter. We had a very cold stretch that seems to be over for now. It was -0 a lot the last 2 weeks and that is just too darn cold! Now that it hit 20 degrees it feels warm. Are we crazy to live here?

Thanks to whoever still reads here. I know it is getting to be less and less often that I write. I know that is a good thing. I will still make a note once in awhile though, especially around MRI's and doctor visits. Your thoughts and prayers for Kevin continue to be needed and appreciated very much.

Love to all,
Deb

P.S. We have passed the 3 year mark since official diagnosis, January 26, 2005. Kevin is surviving and going strong...Praise God!!

Wednesday, December 26, 2007 1:09 PM CST

***Update: 12/30/07 Pictures from Kevin's birthday party on 12/28:





The party was a lot of fun. Kevin is officially a teenager! We have had a great time this Christmas...so thankful!!!

Happy New Year!!

End of Update***



Wishing everyone who stops by a Merry Christmas and Happy New Year!


Kevin happily showing his new IPOD


Kate showing one of her gifts that looks just like her cat


All of us on Christmas Day 2007

Love to all,
Deb

Monday, December 10, 2007 10:30 AM CST

Kevin will be 13 in 11 days! His birthday falls on the last day of school before Christmas vacation. They don’t call it Christmas vacation at school anymore but I still do. We will have a party for Kev during the week after Christmas. He is inviting his cousin and a couple friends from school for a sleepover and bowling or something like that. Should be fun!

We had some good news last week. I have been making phone calls and writing letters to all sorts of organizations since October to try to find some help with the high cost of the co-pay for Kevin’s growth hormone ($512) and, finally, I found an organization who can help us out. I had to wait on hold for over 4 hours last Monday. It was worth it because on Thursday after receiving my application we were approved for co-pay assistance! I got a phone call Thursday and I am supposed to receive an award letter and a phone call soon to set up the payments. I guess until these last 2 things happen, I won’t really believe it. I really hope this all comes to be because I don’t know how we can keep up with this co-pay. Kevin had a check-up last Tuesday with Dr. Abuzzahab, his endocrine doctor, and Kevin has grown 3 inches since April. He is happy to be over 5 feet tall now at 5’ 1”. Dr. A. said he is doing great. So, we will be very grateful to be able to continue with this medication that is helping Kevin grow taller and stronger. Thanks to all who said a prayer for help with this!

I am very aware of how blessed we are with every day we are given. I try not to ever take an ordinary day (bills and all) for granted. Recent news about a young friend makes this all the more clear. Just last week our little friend Kyle a.k.a. “SuperKyle” found out the cancer is back. Kyle lives in Coon Rapids and attends the same elementary school that Kevin did. Kyle and Kevin were sick at the same time when Kevin was still at Morris Bye. Kyle’s mom Teresa and I became friends and we used to email each other almost every day to help each other get through. Please pray for Kyle and his family.

Looks like we are in for a snowy winter. Kevin is pretty happy about this. Dan and Kate are too. I like how pretty it is right now but we’ll see how I feel in a couple months. It sure is starting to feel like Christmas. Enjoy the season everyone, especially remembering the reason for the season…Jesus!

Love to all,
Deb

Monday, November 19, 2007 1:15 PM CST

I didn't think I'd be back so soon but wanted to get it down that Kevin's cold took a turn for the worse. He ended up feeling pretty lousy Saturday night with a fever and lots of congestion. He laid around all day yesterday and we did all we could with over the counter meds to make him feel better. It was without question that he stay home from school today and we have already been to see his pediatrician. He is now armed with antibiotics and an inhaler. Kevin has never had to have an inhaler before. The doctor could hear wheezing in his lungs so he will use it for at least a week or 2. Once his cough is gone he can quit the inhaler. He will stay home from school again tomorrow. It is a short week and there is no school Wed, Thurs or Fri so that is good. I hope he is feeling much better by Thursday so he can enjoy Thanksgiving day and all the good food! I guess if this was a year ago I'd be really worried but I feel like Kevin is so much stronger now that he will get through this okay. One thing though is that he does not like to be alone when he's sick. He really doesn't want me to go to work today. I wouldn't go today anyway because he is pretty down and out. But, I'm hoping that he starts feeling a lot better by tomorrow with the meds and inhaler so he is okay with me going to work tomorrow. If he's not a lot better one of us will be here with him.

That's the scoop for now. I think Kevin will weather this one okay. I'll post again if anything happens otherwise. A little prayer for Kevin is always appreciated!! Thank you!

Love to all,
Deb

Sunday, November 11, 2007 2:02 PM CST

I hope you never have to hear the words,

"Your child has cancer."

I hope you never have to hear,

"the prognosis is not good".

I hope you never have to prepare to undergo radiation or chemotherapy,

have a port surgically inserted into their chest,

be connected to IV poles.

Look at you with fear in their eyes and say,

"Don't worry Mommy, everything will be okay."

I hope you never have to hold your child as they vomit green bile,

I hope you never have to feed them ice chips for lunch,

I hope you never have to watch the "cure" you pray for slowly take away their identity, as they,

lose their hair,

become skeletal,

swell up from steroids,

develop sever acne,

become barely or unable to walk or move,

and look at you with hope in their eyes and say,

"It's going to be okay, Mommy."

I hope you never have to stay in the hospital for weeks, months or years at a time,

where there is no privacy, sleeping on a slab, with your face to the wall,

where you cry in muffled silence.

I hope you never have to see a Mother, alone, huddled, in a dark hospital corridor...crying quietly,

after just being told, "there is nothing more we can do."

I hope you never have to watch a family wandering aimlessly,

minutes after their child's body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child's head bolted to a table as they receive radiation.

I hope you never have to take your child home

(grateful but so afraid)

in a wheelchair because the chemo and radiation has damaged their muscles,

35 pounds lighter,

pale, bald, and scarred.

And they look at you with faith in their eyes and say,

"It's going to be okay Mommy."

I hope you never have to face the few friends that have stuck by you and hear them say,

"Thank God, that is over with,"

...because you know it never will be.

Your life becomes a whirl of doctors, blood test and MRI's and you try to get your life back to "normal".

While living in mind-numbing fear that anyone of these tests could result in hearing the dreaded words...

"The cancer has returned" or "the tumour is growing".

And your friends become even fewer.

I hope you never have to experience any of these things,...Because...only then...

Will you understand....

Written by: Carol Baan


Found this on someone else's site today. She found it on someone else's, etc., etc. Even after months being done with treatment it is not really "over". This piece explains that. Sometimes I want to explain it to someone so this is why I am posting it.

Kevin is fine, just fighting a cold right now. I'm making sure he takes his vitamins and Dan is giving him Airborne. Kevin's report card came in the mail yesterday and he is doing great. 6 A's and 3 B's. 1st quarter of 7th grade is done! Kate will get her report soon. She is doing well too.

That is all for now. Hope everyone reading this is in good health.

Love to all,
Deb

Thursday, November 1, 2007 8:33 PM CDT

Thought it was time for a journal entry. The last couple of entries are not the happiest so I wanted to get something new up and try to move on. I'll just say there is no change in the situation for now so we are just accepting it and we will do our best to make things work. We have so much to be thankful for. Remembering that has given me a lot of peace and helps to see things in the right perspective. I really believe I can only get to that place with the help of God and His answering so many prayers.

Moving on.... Another Halloween has come and gone. I couldn't help but think of how grown up Kate and Kevin are this year. Kate realized it was probably her last year to dress up and go out "trick or treating". Yes, she dressed up and went out with one of her friends last night. Kevin almost didn't go out at all. He recently decided he was too old this year. But at the last minute he decided to go. It wasn't for long though and the amount of candy he took home was way less than usual. I was trying to remember all their different costumes but I found I could only remember a few.

Kevin has been doing great. He feels good and has a pretty big appetite almost every day. Dan and I have been talking about how much his looks are changing these days. He is really starting to look like a teenager and no longer a little boy. I've noticed some emotional changes lately too. He is pretty sensitive sometimes and it seems to be pretty puzzling and frustrating to him dealing with these new feelings. I remember Kate entering these years of all the changes and it was so hard for me. It doesn't seem as hard this time around. Maybe because he's a boy and it's different. I'm feeling more ready to help him through the ups and downs ahead. I hope it's easier for boys.

Kate is enjoying her part time work with Community Ed and her Thursday night class at MCAD. Only 2 more classes left after this week. She has really enjoyed this class and the other students there. She had a really good mid-term report a couple weeks ago. Kevin did too. I'm so glad they are not struggling in school. That is always so hard.

I love my new job! It has some stress at times but for the most part it seems to be the perfect place for me to be. I really like everyone I work with. I do miss Hamilton a lot too. I get visits from Hamilton staff now and then and that always makes my day.

Dan is doing good too. He and Kevin went grouse hunting a couple weeks ago. No birds but they had a nice time anyway. Dan got a lot of work done in our basement recently. It is nice for the kids to have a place to hang with their friends and Dan and I can watch a tv program once in awhile now without asking someone to turn off SpongeBob or some other show we are not that interested in. : )

So life is moving along and all is pretty darn good.

Thanks for checking on us. Let me know you are out there whoever you are, okay.

Love to all,
Deb

P.S. Please keep my sister Diane in your prayers. She has some big challenges right now. Thanks!

Wednesday, October 17, 2007 1:02 PM CDT

..."Do not fear, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers; they shall not overwhelm you... For I am the Lord your God, the Holy One of Israel, your Savior." Isaiah 43:1-2,3

The bad news is God never says we will not need to walk through the waters. The good news is that God promises the rivers will not overwhelm us. And He promises that we are not alone. He will always be with us. God is trustworthy and God's promises are true. Claim them in difficult times...


The above message is small part from today's devotional that I receive from the organization HopeKids. HopeKids is an awesome group who is there to help many families in the Twin Cities who need to have some fun once in awhile on this journey of cancer survival.

God's word is amazing and always so relevant. Although the hard time isn't about Kevin being sick (thank GOD!!), it is definitely a time of anxiety so I will claim this promise. I'm working hard on finding help with the co-pay. Haven't found any answers yet. Keep us in your prayers. Thanks!

Love to all,
Deb

Thursday, October 11, 2007 10:57 PM CDT

First off Kevin is fine, but I'm sorry to say today's journal is about my really bad day. I need to go back a bit and explain what occurred before that made this day so disappointing. I heard from the pharmaceutical company, Pfizer Bridge, that supplies Kevin's growth hormone a couple weeks ago that the medication was approved by my new insurance and that my co-pay would be $25 a month. I was so happy that day and even shouted out loud in my office. We didn't need to order any of the hormone until today. I called Walgreen's specialty pharmacy where I was told to go through and placed the first order using my new insurance. They had all the information on Kevin and all was set to order until she told me the co-pay, $512!! I could not believe it. I was sure she was wrong. After several calls with each one dashing all hopes of this being a mistake, we are sitting here facing a $512 per month co-pay to have Kevin continue with the growth hormone. It really, really hit me hard. I guess I have some deep hurts buried and they all came pouring out this afternoon. Amazingly, Dan and I have not let on any of this to Kevin or Kate. There is no reason for them to worry about this. I don't know how, but we are going to figure a way out to do this. Pfizer Bridge can no longer provide the drug free to us now that I have an approval through my new insurance. The new insurance accepts this is medically necessary and approved but because of the price of this, our co-pay is $512 a month. So once again, our out of pocket is huge. I am so disappointed and I have lost my optimism today. I don't know what the answer is. I just know that when you really need insurance to pay out for serious problems, you are out in the cold for many things. There are so many limits to what is paid for with cancer. It doesn't matter that I have been paying and Dan has been paying thousands of dollars for premiums for many years, it just doesn't come out in the end when you have cancer. So discouraged today.

Yet, I'm praying tonight and I do have faith. It is just being really tested again and today I was caught with my guard down. I really thought we were on our way out the hole of medical debt. I know God is next to me so please pray to help me give Him this burden. Thank you once again for your support and prayers.

Love to all,
Deb

Saturday, September 22, 2007 8:37 AM CDT

Thought it was time for an update. Kevin is settling in to 7th grade. He is having fun with an after school bowling class on Wednesdays and Chess club on Tuesdays. The school offers several extended day activities and these are 2 that Kev chose to participate in. Kevin is taking the bus home each day since I work longer hours now. The bus ride home is going good which is a relief. Kate is doing well too. She is taking a class at the Minneapolis College of Art & Design (MCAD) on Thursday nights for 10 weeks. This is the college she really wants to attend next fall. She loves the class and it is reinforcing her desire to go to this school. Kate has her driver's license test coming up soon in October. She has been practicing with Dan. The test is on October 18th so please say a little prayer for Kate that day. : )

My new job is going great. I really like it. It is very different from working at a school but I'm getting used to the changes quickly. I am very busy with a variety of duties every day. I love the work space. My new manager is very nice. I'm getting to know my co-workers and I'm starting to feel like a part of the group already. Everyone is very helpful and kind to me as I learn my way. I'm already use to the longer day, it goes fast because I'm very busy. I like that it's close to home. The last time I worked full-time I commuted to downtown Minneapolis which added almost 2 hours to my day. This is much easier with a 10 minute drive between work and home. Several of my friends from Hamilton have stopped in to see me. That has been fun. My office is in the same building where Staff Development training and meetings take place so my old friends will be coming in every now and then.

My sister Diane has suffered a setback with her health these past 2 weeks. Fortunately, she is on the mend now. She has some new challenges to deal with now which is bringing her to see a specialist at the University of Minnesota Hospital. The good news is that she remains cancer free. She is dealing with long term effects of her treatment now so we are all hoping she receives the best course of treatment for these things with the specialist she will see in a couple weeks.

With my new full-time position, I am now eligible for insurance benefits through the school district. I enrolled in the plan right away and I've already started the process of seeing if the new insurance will cover Kevin's growth hormone. The old insurance repeatedly denied the claims so I hope the new insurance will be able to cover it. Kevin is definitely growing now. He is really starting to look taller now. Not only is this good for him physically but his sense of well-being is definitely helped. Hormone deficiency affects more than height, it also puts a person at risk for other problems such as depression and heart problems to name a couple. I hope the new insurance works out to Kevin's advantage.

Fall is almost here and the leaves are already starting to change. We are going up to the lake next weekend to close everything up. I think it will be peak colors up there then. I'll have to take some pictures. The kids won't be coming with us though. They both have plans that will keep them home. It is always sad to pack up the trailer for the winter, but it is nice to have the place to look forward to coming back to when we are tired of the long winter.

Thanks for stopping by to check on us. I hope everyone is enjoying the start of autumn. The holidays will be here before we know it.

Love to all,
Deb

Tuesday, August 21, 2007 7:29 PM CDT

***Update Tuesday Sept. 4: 1st day of school today. It was strange because everything we did this morning made me say to Kate "This is the last first day of school, or this is the last this or that..." It is very strange knowing she is a senior for me. She was excited today to get back to school and start this big year. Kevin was doing just fine today too, not very nervous and I think he was pretty happy to get back in there. He was a little down when he came home and said none of his best friends were in any of his classes. He wasn't too sad though. I think it was a good day. Here is a picture of them this morning:



Some news to share. I am starting a new job next week! I will still be in the school district but in a different department (not a school). It is full time so this will be an adjustment for me since I have not worked full time since 1998. But, it is still a school year schedule so I will work 10 months. The full time and benefits will greatly help our situation so this is all a good thing! I am very excited to learn new things and work with new people and all that. However, I will really miss all my friends at Hamilton and I will never forget this wonderful group of people who helped us so much during some very hard times. It will be very hard to say goodbye. So, I don't think we should say goodbye since I will not be all that far away and I still work with them in some ways.

That is the latest for this little update. Thanks for stopping in to read.
End of Update***


From August 21st:
MRI RESULTS ARE IN AND ALL IS GOOD!! NO SIGN OF TUMOR OR DISEASE IN THE BRAIN AND SPINE!!!!! Dan and I are praising God tonight. I know I was very anxious today and I believe Dan was too. We both needed to hear that Kevin was okay after the MRI today. Will we always be this way with these scans? I guess so. We seem to be doing just fine until this day when we have to face the unknown after no scans for 6 months. Kevin was not a happy camper most of today having to go back to the halls and examination rooms of Children's Hospital after this longest stretch between visits. He was close to tears a number of times today but once the MRI and pokes and needles were done he got better as the afternoon wore on. He was asked if he was worried about the results of the MRI and he said "no" and he explained that he just doesn't enjoy any of this stuff. The doc said that totally made sense.

More good news is that Kevin has grown 1 1/2 inches in 4 months and he gained 2 1/2 pounds. He went from the 25th percentile up to the 50th percentile for height. He is still on the light side for his weight at the 10th or 15th percentile. The doc said this is fine and typical for medulloblastoma survivors to be more lighter than heavier. His bone age xray shows he is just the right size for a 12 year old. He is a healthy normal 12 year old boy!

The growth hormone is working and we're told he will likely be using it for about 4 years. Now we need to get the insurance to get on board with this. I have received letters this week that they deny our appeal and we now have to file a grievance...we have been given more hoops to jump through. So, I am to write a letter and the doctor will write another letter (she has already sent several forms of documentation and a letter already).

Kevin doesn't need to see oncology for 6 months now. He will see endocrinology in 3 or 4 months. Next oncology visit will include a hearing test. Endocrincology will include some blood testing to make sure he is on the right dosage of growth hormone.

It was a hard day but ended very happy!! Thanks to whoever sent up good thoughts and prayers for Kevin today!! Kev and Kate have 2 more weeks of vacation then it's back to school. This summer sure went fast, but I guess they always do. It has been a good summer and it's going to be a good fall too. I'm really counting my blessings tonight.

Love to all,
Deb

P.S. Go Coon Rapids National Little League Midwest Champions in the Little League World Series!!! (Kevin played ball with over half of these talented young men when he used to play, very exciting!)

Friday, July 27, 2007 9:02 AM CDT

***UPDATE Monday August 20: MRI tomorrow (Tuesday) at 12:30. Please keep Kevin in your prayers for good and clear results on this MRI. It has been 6 months, the longest time frame between MRIs. I'm expecting that the MRI will be fine, but we are still anxious to know for sure. Prayers are always welcome and very much appreciated. Thank you!!!!

I'll post as soon as I have the results, hopefully tomorrow afternoon.
END of UPDATE****



A whole month has gone by since I've posted. This is really a good thing. It means there is really "nothing to report". For a long time I didn't think I would get to this point of not journaling every week but here I am. I guess it means we are really getting back to normal. It is really strange but good to look back to just one year ago and think of how much better Kevin is doing now. For this I am truly thankful and I continue to thank Him every day.

I am officially on summer break from my school job today. Yesterday was the last day of summer school. It went really well and I hope to have the opportunity to work summer school again next year. At first I really didn't want to do it, I wanted the long break with Kate and Kevin. But we needed the money, it was a nice schedule, and as they say..."easy money". So I am now off until August 22nd! Dan has a week off coming up soon so we are heading to the lake at the end of next week for a nice long stay up there. Can't wait. I have been going up to the lake almost every weekend this summer for 3 day stays, but the longer stretches are always the best and most relaxing. The fishing hasn't been that great lately so I hope that improves during our vacation so Kevin can catch some good ones. He has really come to love fishing.

Kevin has been feeling great all summer. He has been just hanging out at home when I'm at work in the mornings. Lots of sleeping in for him and Kate too. Kate and Kevin have been getting along great which really helps a working mom. I never once got a phone call from them because of an argument. That was a really good thing. Kevin has hung out with Sam a few times and also with his friend Zach. Zach went up to the lake with Kevin and Dan last weekend. Zach is becoming a really good friend to Kevin. He is a very nice kid and we really enjoy him. They met at school last year. Speaking of school, Kevin is returning to Cygnus Academy. We pulled him from the school last February when they were having some problems but it appears all of those troubles are over and a new administrator is on board with lots of positive plans and changes for the future. Kevin went on a visit there at the end of the school year and he decided he would really like to return next year. He had made some great friends there and really missed them. He never made any friends at the other school and that was hard. We hope this year at Cygnus goes better, I am really hopeful that it will.

Kate has been having a good summer too. Right now she is in Savannah, Georgia with her friend Jacy visiting Jacy's grandma. She has been gone since Saturday and will be coming home tomorrow. I've talked to her once and she is having a nice time. Can't wait to hear all about her trip and see the pictures she took. We still can't believe Kate is a senior this year. I think she is nervous about it. She had such a good year last year so I really hope the good momentum keeps going for her and she has the best year ever. She will be back at her high school full time this year which is what she really wanted. We got her senior portraits taken last week and we get her proofs next week. I can't wait to see them. The photographer spent a lot of time with her and took many different types of pictures and with lots of different backgrounds inside and out. Kate looked beautiful and so grown up. We have an appointment in a couple weeks with the admissions counselor at the college she wants to attend. There is so much coming up for Kate.

Dan has been working hard all summer so he is looking forward to his vacation. Things are hectic where he works and changes are in the wind. It is a very stressful time for Dan. Please say a prayer for him to get through this hard time. We don't know what the future holds right now so we need to trust and lean on God once again.

Speaking of trusting in God... Kevin's next MRI is on August 21st. He will also have a check-up with the oncologist and the endocrine doctor. Kevin has been feeling and looking good so I don't anticipate any problems with his test and check-ups but as always, the wait for the results will be stressful for Dan and I. Kevin will be sure to go through anxiety over the whole process too. It is a few weeks away and I am not going to worry about it now but I wanted to post the date for those who are reading and continue to pray for Kevin. Kevin has been growing since starting on the growth hormone. I think he has grown almost 2 inches since we started in April! Still no word on insurance paying for this, but we are still receiving it at no charge for now.

That is the latest around here. Thank you to those of you who continue to check on us. We still look for guestbook entries so please let us know you were here! Thank you for continuing to pray for Kevin's health and happiness. God has blessed us greatly.

Love to all,
Deb

Tuesday, June 26, 2007 7:46 AM CDT

Happy Summer!

It has been awhile since I've journaled. There has not been much to write, all is well. Kevin has been doing fine. He looks taller and he's gained a few more pounds. We try not to obsess on his height and resist the desire to measure him. We know he has grown at least an inch since April. Kevin still has trouble with hot weather. It seems to be much better and we almost forget about it, but then when he gets overheated it all comes back when it's obvious he doesn't feel good. He gets that wiped out look and it doesn't go away until he's cooled off. Another thing that happens is he loses his appetite for long stretches when it's hot. He's learning to stay hydrated with water and Gatorade. I wonder if this will always be a problem for him.

We have been up to the lake 3 times since Memorial Day. Last weekend Dan took Friday off so we had a 3 day stay. The weather was perfect. Kate took her friend Karly with and they all had fun tubing, running the Wet Jet, and going on 4 Wheeler rides. Kevin caught some nice fish on Saturday. I even caught a couple. I forgot my camera this time so no pictures. I'll be sure to remember it next time. We still love our place at the lake and plan to go up as often as possible this summer.

This weekend Dan and Kevin are going up to Cook Lake with uncle Bob and cousin Sam. They will be there for 4 days and 3 nights. Kevin is really looking forward to some really good fishing. Dan is too. I hope they have good weather, not too hot. I know they will all have a good time.

I am going up to the lake with 2 of my best friends Denise and Lisa. We will have a little girlfriend time relaxing and catching up. I'm really looking forward to it. Kate will be staying home one day by herself (a first) between my trip and Dan's. She's ready for the independence.

I have been working my summer school job for over a week now and it is going well. It started out kind of hectic the first week but it has already settled into a routine.

It is so nice that Kevin is healthy and strong this summer with no doctor visits. He will be having appointments at the end of August to check on his growth and for the next MRI and check up but that is a ways off so we will enjoy the lazy days of summer until then. I hope everyone is having a good summer. Thanks for stopping by to check on us.

Love to all,
Deb

Sunday, May 20, 2007 4:06 PM CDT

***Update Thursday, May 31: Kate showcased her work in an art show at her school last night. Here are a couple pictures I took of her at her display. She did an excellent job. Lots of people stopped by her table and she really enjoyed telling about her work. It was fun to watch her. All is well otherwise. School is almost over...5 more school days left!

Kate's work:


Poster Kate made for her portfolio:


End of Update***


From May 20:
It has been over 2 weeks since I've written. Not too much really going on at all. Kevin has been feeling fine and eating like a teenage boy. His appetite is very good these days. He is so ready for school to be over this year and so am I. Kevin has done really good work all year but he has had challenges along the way. It will be nice to have 6th grade done and summer vacation start for Kev.

We just got home from a weekend in Duluth. It was a nice relaxing trip. We stayed at The Suites on Waterfront Plaza and were very blessed to have a nice 2 bedroom suite at a really, really reasonable rate. We lucked out for a change with that one. We visited Dan's mom and dad and Delores is doing better. We hope and pray all the setbacks are over and she can finish the therapy on her knee. It was good to see them. We also saw my sister Annette and family, my mom and brother Tom. The down side was it was COLD and WINDY in Duluth. We could hear the wind blowing all night last night. We didn't feel like walking around outside much at all. Too bad because there are so many things to see in Canal Park. It's cold here at home today too.

Everyone said Kevin looked taller. He is definitely filling out and his feet have grown, not sure how much taller yet but maybe some. I measured him a week ago and he was maybe a quarter or half inch taller than when I measured in January.

Kate has been good too. She is getting a little anxious about senior year already. I told her it will be fun and exciting but she says she doesn't want to talk about it right now. She has had a really good year this year. I know she is ready for summer vacation too.

That is the latest around here. Pretty quiet. This is good. Thanks for checking on us.

Love to all,
Deb

I found the following article on another caringbridge site and had to share it. It is written for moms who have experienced illness and heartache with their kids. I think it is very good and hope it gets passed along to someone else who would appreciate it.


Some Mothers Get Babies With Something More
written by: Lori Borgman
Columnist and Speaker

My friend is expecting her first child. People keep
asking what she wants. She smiles demurely, shakes
her head and gives the answer mothers have given
throughout the pages of time. She says it doesn't
matter whether it's a boy or a girl. She just wants
it to have ten fingers and ten toes. Of course,
that's what she says. That's what mothers have
always said. Mothers lie.

Truth be told, every mother wants a whole lot more.
Every mother wants a perfectly healthy baby with a
round head, rosebud lips, button nose, beautiful
eyes and satin skin. Every mother wants a baby so
gorgeous that people will pity the Gerber baby for
being flat-out ugly.

Every mother wants a baby that will roll over, sit
up and take those firststeps right on schedule
(according to the baby development chart on page
57, column two). Every mother wants a baby that can
see, hear, run, jump and fire neurons by the
billions. She wants a kid that can smack the ball
out of the park and do toe points that are the envy
of the entire ballet class. Call it greed if you
want, but we mothers want what we want.

Some mothers get babies with something more.

Some mothers get babies with conditions they can't
pronounce, a spine that didn't fuse, a missing
chromosome or a palette that didn't close. Most
of those mothers can remember the time, the place,
the shoes they were wearing and the color of the
walls in the small, suffocating room where the doctor
uttered the words that took their breath away. It
felt like recess in the fourth grade when you didn't
see the kick ball coming and it knocked the wind
clean out of you.

Some mothers leave the hospital with a healthy
bundle, then, months, even years later, take him in
for a routine visit, or schedule her for a well
check, and crash head first into a brick wall as
they bear the brunt of devastating news. It can't be
possible! That doesn't run in our family. Can
this really be happening in our lifetime?

I am a woman who watches the Olympics for the sheer
thrill of seeing finely sculpted bodies. It's not a
lust thing; it's a wondrous thing. The athletes
appear as specimens without flaw - rippling muscles
with nary an ounce of flab or fat, virtual
powerhouses of strength with lungs and limbs working
in perfect harmony. Then the athlete walks over to a
tote bag, rustles through the contents and pulls out
an inhaler. As I've told my own kids, be it on the
way to physical therapy after a third knee surgery,
or on a trip home from an echo cardiogram, there's
no such thing as a perfect body. Everybody will
bear something at some time or another. Maybe the
affliction will be apparent to curious eyes, or
maybe it will be unseen, quietly treated with trips
to the doctor, medication or surgery.

The health problems our children have experienced
have been minimal and manageable, so I watch with
keen interest and great admiration the mothers of
children with serious disabilities, and wonder how
they do it.

Frankly, sometimes you mothers scare me. How you
lift that child in and out of a wheelchair 20 times
a day. How you monitor tests, track medications,
regulate diet and serve as the gatekeeper to a
hundred specialists yammering in your ear. I wonder
how you endure the cliches and the platitudes, well-
intentioned souls explaining how God is at work when
you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy pieces like
this one -- saluting you, painting you as hero
and saint, when you know you're ordinary.

You snap, you bark, you bite. You didn't volunteer
for this. You didn't jump up and down in the
motherhood line yelling, "Choose me, God! Choose
me! I've got what it takes." You're a woman who
doesn't have time to step back and put things in
perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack.
You've developed the strength of a draft horse while
holding onto the delicacy of a daffodil. You have a
heart that melts like chocolate in a glove box in
July, carefully counter-balanced against the
stubbornness of an Ozark mule.

You can be warm and tender one minute, and when
circumstances require intense and aggressive the
next. You are the mother, advocate and protector of
a child with a disability. You're a neighbor, a
friend, a stranger I pass at the mall. You're the
woman I sit next to at church, my cousin and my
sister-in-law. You're a woman who wanted ten fingers
and ten toes, and got something more.

You're a wonder.

Friday, May 4, 2007 7:31 AM CDT

TGIF!! Actually this week really flew. I'm very busy at work and have put in a lot of extra hours this past month. I am starting to get used to it and the extra $$ on the paycheck has been nice. But, I will be back to my normal part-time hours because the big job of state testing is done now. Yay!

Dan's mom is doing better. She actually got home last night and she is very happy to be there. We pray for returned strength and healing.

Kevin has had a good week. We went to his school on Wednesday night for his PPL (Public Presentation of Learning). He had to do a presentation to show what he has been learning. He chose to present a project from his extended day Zoology class. He reasearched the Striped Skunk, made a poster and also a Power Point presentation. He did a great job! We watched a couple of other presentations and a spelling bee. It was nice to be in his school. It has been strange for us being in a new school that is not close by. I have not felt a part of it. Kevin still doesn't feel like he really fits in there either. His grades are very good though so he's still working hard. We are still up in the air about next year but we are starting to talk about having him go to our local middle school. It is huge but Kevin will know a lot of kids there from elementary school. I know he will do fine academically. He has some middle school experience now so the adjustment of many classes won't be hard. He has experience with kids who don't behave the greatest too so it is just a matter of him adjusting to close to 2000 kids opposed to less than 200 and a large building to navigate. I would have to adjust to competing with lot of other parents to keep up good communication with teachers. I have liked the charter school experience mainly for the time and attention that teachers can give to students and parents. It is not so easy in a large school setting. We're still thinking...

Dan and I are heading up to the trailer tonight. Kate is spending the weekend with Jacy. Kevin is going to cousin Sam's. Dan and I hope to get the trailer cleaned and aired out and all the storage bins unpacked. There is a chance the water won't be on yet so that will be a little challenging. There is still frost in the ground up there. Dan said I will be surprised at how sparse the leaves and green grass is up there. It sure has become green here. It will be nice to get up there regardless. I'm looking forward to it.

Kevin has been doing well with the daily growth hormone shots. He is almost ready to try to give it to himself. I spoke with the drug company and there is no word on whether or not insurance has approved to pay for this yet. Fortunately, the drug company is able to provide it for free in the interim. I will be receiving a new shipment of it next week, enough for 3 months! We should be hearing well before then if insurance will pay or not. I'm still not worrying about it...something will come through one way or the other. Kevin is hoping to get a growth spurt soon. We don't have a check up until August so it will be interesting to see how he's doing then. Kevin continues to feel really good and have good energy. He seems to just feel better all around and I can't help but wonder if the hormone is helping with his sense of well-being also.

That is the latest around here. I continue to journal for a record of how Kevin is faring. From time to time I go back and read how he was doing in months past and it is very interesting to see the changes and progress. So for now I will keep writing. Have a great weekend!!

Love to all,
Deb

Monday, April 30, 2007 7:25 AM CDT

Where did April go?

Kevin's Grandma had knee replacement surgery last Tuesday and all went well but she had some complications and had to go back to the hospital yesterday. There was some infection and another surgery was needed. She should be moved back to the rehab center today. She'll be there for a little while to recover and get strong enough using her knee. She asks for prayer for strength.

Kevin and Dan went up to the trailer over the weekend. It was a beautiful weekend. Dan did some work for the resort and also got a few things done in the trailer to get things ready for the year. We plan to go up again this weekend to unpack and clean. I hope the weather is as nice next weekend as it was this. Kevin threw his line in the water a few times but no luck this time. Kevin did some work around the resort too helping clean up the yards. Dan said he was watching Kevin run around and he looked really good. His running is improving.

Here are a couple pictures from the weekend:
Kevin getting ready to throw a line in...

Peaceful time...


Kate and I stayed home. We got online and registered Kate for the upcoming ACT test. We have switched gears and Kate will be exploring college options for after high school. Kate has been greatly encouraged by her art technology teacher to pursue her dreams and go to art school. We are excited for this possibility for Kate. We have a lot to do to make this a reality. The ACT test is a first step.

Hope you all had a good weekend and have a good week!

Love to all,
Deb

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