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Sunday, November 25, 2007 8:51 PM CST

Great news on Friday…Ben still remains in good health! Needless to say, we are thrilled. Although there will always be some underlying worries about him, we’re finding that time truly is finally beginning to reduce the intensity of those worries. We couldn’t have asked for a better way to end the year. As a result of having a great report, he has graduated to checkups every four months for the next year. Another step forward.

Ben wanted to visit the hospital’s Pediatric unit before we left, so we made a quick stop there. That was a strange feeling. So many memories – bad, as well as good – flood back just by walking down those hallways. We had a three hour gap between our last two appointments, so we took the time to go and see a movie.

Ben joined Cub Scouts this year and absolutely loves it. He did a great job selling popcorn for the annual fundraiser. School is going well for both of the kids. We’re still working on getting the addition onto our home completed, but so much progress has been made. My pregnancy has been free of complications and the babies are in good health. I’m definitely feeling my age with this pregnancy though!

Wishing you all a wonderful holiday season...

Love,
Michelle

Friday, September 21, 2007 8:32 AM CDT

Hello,

School has arrived and both of the kids are off to a good start. Ben is now in third grade and Hannah has moved up to the big world of Middle School, where she is a sixth grader - wow!

We had an ultrasound done yesterday and now know who will be joining our family in late January/early February. Hannah and Ben are getting a baby brother and a baby sister. They're both happy about that. I've posted some new photos and included one of the ultrasound. We're all so excited for their arrival!

My dad and brother are putting a small addition onto our home to make room for the new little people headed our way, so our house is in a bit of disarray right now. We're so fortunate to have them doing this for us.

Ben's next appointment is scheduled for the day after Thanksgiving - I'll be back after that!

Love,
Michelle

Thursday, August 16, 2007 5:42 PM CDT

I'm happy to report that all tests today were normal! We celebrated with ice cream at our favorite little spot on the way home. Nothing says cancer-free like a scoop of Rocky Road. We will take him back in November for another check up. After that appointment he will graduate to more time in between check ups...maybe every four months, but possibly even every six.

Ben just returned from visiting my parents. As some of you know, they live near a campground and have access to lots of activities. He went horseback riding, swimming, boating, played tennis and miniature golf, caught his first fish, went tubing and even tried out skiing for the first time. Yesterday he returned home a very happy and very tired young man. I'm guessing my parents were just as tired!

Hannah is at a week long horse camp (same campground where Ben was) and will be coming home tomorrow...probably very happy, very smelly, and very tired. She had a busy and exciting schedule ahead of her and we're excited to hear all about her adventures tomorrow evening. It will be good to get everyone back under one roof again.

Today was a great day. Looking forward to many more...

Love,
Michelle

Thursday, August 9, 2007 7:05 AM CDT

So sorry about the delay...the appointment has been rescheduled for the 16th. Keep those good thoughts and prayers coming please! I'll be back after the appointment.

Michelle

Friday, July 13, 2007 10:50 PM CDT

Happy summer!

I hope you are all enjoying the warmer temperatures and longer days. Our summer has been great so far, however the phrase “lazy days of summer” hasn’t exactly applied. Ben and Hannah recently finished up with their baseball and softball seasons. It was fun watching the kids play and seeing how much they have improved since their first year. Hannah’s team lost only one game, so she was especially delighted. Dave and I had the pleasure of coaching Ben’s team this year. They were an energetic group of 10 boys and 3 girls. They were all eager to learn and much fun to hang out with. It’s refreshing that coaching was even an option for us this year. Last summer was too chaotic to commit to anything other than a very basic daily routine, chemotherapy, unexpected hospital stays, Cryptosporidium and an outbreak of Shingles. Ugh! The rest of this summer has consisted of playing with friends & cousins, sleepovers, birthday parties, late bedtimes, camping with Uncle Nick, swimming, riding bikes and lots of other fun things that come with warm weather. They also have a brand new cousin - my sister and her husband just had a little baby boy on July 11th. We can’t wait to meet him!


As some of you already know, we have exciting news. We are expecting! A few weeks after we found out, we were given surprising news…we are expecting twins! Dave and I are still trying to absorb the latter, but we are thrilled. Hannah and Ben are excited as well. Hannah is hoping for two girls and Ben is hoping for two boys. They are likely fraternal twins, so there’s a third possibility of having one of each. Ben’s excitement has been mixed with some apprehension. He has been excellent at communicating his feelings and concerns to us so far though, and I think we’ve been able to ease his mind a bit. It seems his main concern is that we won’t have any more time for him.


Ben’s next round of appointments are scheduled for August 6th. We’re staying as positive as we can and hoping that he remains in the “no evidence of disease” category. We’ve had a nice run of 8 months without cancer and we’d like to keep it that way. He’s been feeling great, growing like crazy, and has a LOT of energy.

I’ll be back after the August 6th appointments…hopefully with nothing but good news!

Love to everyone,
Michelle

Friday, April 27, 2007 4:42 PM CDT

Happy Spring!

Ben had his three month check up today. All good news!! He had the usual...labs, ultrasound, chest x-ray and exam. All of those test results were perfectly normal. We also met with the kidney specialist to follow up on his kidney function and all is fantastic with that as well. We have been given the luxury of three more months of completely normal living. A good day was had!

Thanks for checking in on him...

Love,
Michelle

Tuesday, January 30, 2007 8:29 AM CST

"Stable postoperative examination without indentification of progression or recurrence of disease."

Another sigh of relief, thanks to those words given to us yesterday after Ben's ultrasound was done. Everything went well. All appointments were either on time or early, so I was even able to get him to school by 1:00 p.m.

His next check up will be in three months. :)

Forging ahead...

Love,
Michelle

Sunday, January 7, 2007 10:09 PM CST

It's Ben's 8th birthday...

It's been a great couple of days for Ben - and us too! Yesterday he had a bunch of his little buddies come over for a Lego party. I think the sole purpose of a birthday party for second graders is to run. Run upstairs, run back down. Run into the living room. Run back out. Run outside, run back in. There's also a lot of screaming and squealing that comes with all of that running. They did stop for cake and presents, during which running was replaced with a lot of wiggling and squirming in effort to resist any form of stillness. These kids are great to hang out with. They have enthusiasm oozing from them. They are so happy and carefree and perfectly content. Everything to them is funny. If you ever want an ego boost, tell a couple of knock knock jokes to a group of 8 year olds. They'll laugh right down to their toes - even if they don't get it. They are fine examples of living life fully and I enjoyed soaking up their enthusiasm and happiness. I also enjoyed seeing them go home after a few hours of their enthusiasm and happiness. :)

Today we took the kids to see a movie and then over to Grandma Julie's for Ben's birthday dinner and a few more presents. Any guesses as to what he wanted for his birthday dinner? Anyone? Nachos, of course! :)

It was a good two days of celebrating 8 amazing, wonderful, crazy years of Ben's life. I'm looking forward to celebrating many, many more birthdays!

Love,
Michelle

**new photos**

Friday, December 29, 2006 7:14 PM CST

As Dave previously wrote, it's all done! Ben's port was removed today without incident. That was his last "official" thing left on our To-Do list. We can now enter 2007 without chemotherapy, anti-nausea medications, way-too-frequent visits to the clinic and hospital, tumors, lab draws, low counts, missing school...the list could go on, but I'll leave it at that. Milestones are good. The light at the end of the tunnel really does exist, despite my doubts over the past nine months.

We will now only go in for follow up exams. So far, that has been every two months, with the next one scheduled for late January. Depending on January's results, the frequency of the exams should get further apart.

Now it's time to breathe again. Time to find my smile again. Time to heal. Time to find what's been lost. Time to fix what's been broken.

Regardless of its outcome, cancer and the treatment of it, barges into your world, turns it completely upside down and leaves you with a big mess to clean up. Much like a tornado - one day life is normal, the next day normal has disappeared. The disaster left behind seems almost impossible to clean up. The mark it has left behind is difficult to erase, and part of it will always remain. But with some time and a lot of work, it will get done.

Please be patient with me – the end of cancer treatment does not always mean life just picks right up where it had left off. Having watched Ben go through this for the fourth time, transitioning back into a life without actively battling the disease is getting more and more challenging with every diagnosis. With over six years of having cancer dominating our life, it’s been exhausting. I believe I will climb back out of the pit that cancer has tossed me into; it may not happen overnight, but it will happen. I’m not speaking for anyone else in the family; these are my own personal thoughts. I know we all have our own scars. The one thing I’m certain of is that we will stick it out together and make it right again.

Thank you to each of you for sticking it out with us for all of these years. Your support has come to us in so many forms. We know we can’t possibly repay each of you, but we’ll do our best to pay it forward.

Hoping and praying we’ve seen the last of this…

Michelle

Friday, December 29, 2006 11:37 AM CST

Good news from Dad:
Ben's port is out with no problem!
They called me from the Chinese restaurant in Marshfield, so apparently a little anesthesia has not hurt his appetite any! I am sure Michelle will update later, but just wanted to let you know. Have a super day!
Dave

Wednesday, December 20, 2006 12:09 AM CST

Hello once again,

Ben's back on track with his health, so we are good to go ahead with getting the port removed. He's now scheduled to have it done early in the morning of Friday, 12/29. Should be an exciting day!

It's going to be nice to have everything related to this last round of disease to be wrapped up before 2007 hits. Maybe it's a sign of good things to come in 2007! Yeah, we'll stick with that theory. :)

Everything else is good. I have a little story that shows the true spirit of a cancer child. His class is making pinatas in school. Everyone is choosing things like, a kitty, a bunny, an egg...typical stuff. Ben decided that he wanted to make a cancer cell pinata. His theory was brilliant. We're going to be beating these pinatas, so why not "kill" a cancer cell, with treats falling out in the end to celebrate the death of the cancer cell? I find this plan ingenious, sad, and so wrong that he can even effectively put together such a plan at the age of 7. Despite all of that, I have so much pride in him. I would have to guess that the school has never seen, and will never see another pinata cancer cell displayed in the school again. :)

I'll be back after his surgery, but in the meantime, continue to enjoy the holiday season and have a very Merry Chrismas!!

Love,
Michelle

Tuesday, December 12, 2006 4:55 PM CST

Hello,

Ben's surgery to remove his port is going to be postponed since he's developed some cold symptoms recently. He's been feeling fine, but with a scratchy throat and a bit of congestion, it's not worth putting him under anesthesia for something that can wait. We'll see what next week brings and hopefully we'll be able to get him back on the schedule.

Love,
Michelle

Tuesday, December 5, 2006 1:50 PM CST

Yesterday's appointment went well and Ben's scheduled to have his port removed next week Thursday. He's a little nervous, but excited at the same time. Pretty much how I feel too. :) Putting your child in someone else's hands to do any kind of surgical procedure, small or big, is kind of scary. Thankfully we have great doctors that we have a lot of trust in!

Looking forward to the final step...

Love,
Michelle

Monday, November 27, 2006 4:31 PM CST

Another step forward...Ben's tests all came back negative today. :) Next week he'll go to the hospital for a quick pre-op exam so they can confirm he's well enough to get his port removed. Hopefully that procedure can then be done in a week or two. After those two appointments, he'll be back to see his doctor at the end of January for the same tests that he had today.

Ben had an interesting comment when we asked him if he'd like his port removed. He said with a big grin, "Yes! Now I won't have to go back to the hospital until I'm in third grade." It turns out that he had concluded he was going to have cancer during each of his school years. Since he is now finished during his second grade year, he figured he had until third grade before he would have cancer again. So far, that's been the trend with all three grades, so it was only logical to him that he was just taking another break and would be back at it in the next school year. It really took me aback. It's difficult to know how much thought he puts into his health care history, or what he even comprehends; to hear some of those thoughts come out of his mouth can be an eye opener for me. The thing that hit me the hardest was the manner in which he said it; very casually, as if there was nothing unusual or frightening about his conclusion - in his mind, that was just the way it was going to be and he was completely okay with that. It makes me sad, and angry as well, that a 7 year old should have to process such a complex thought.

Moving on...he's really excited to get his port removed. I'm excited for him! Another day to celebrate. Today we celebrated his good news with ice cream on the way home. :) Good news can be really yummy.

That's all for now. Take care, everyone! :)

Love,
Michelle

Tuesday, November 21, 2006 11:49 AM CST

It's me again. After 8 days of missed school, he went back this morning. He was really excited and squirrely this morning. I have to admit, I'm going to miss having him around, even though sometimes we weren't always in agreement. :) I'll miss the snuggling and reading, but I won't miss that our only "outings" were to the clinic and any businesses that offered drive thru services. I'm happy for him that he's so happy to get on with life as it should be.

Like I mentioned before, on Monday we'll head back to Marshfield for a post-treatment exam. I'd like to think that will be his last missed day of school. He's currently at 31 days of missed school. Yikes!

So, he's feeling great, looking great, acting great...all good stuff. It seems almost surreal that we've moved this far ahead when it seemed like this phase would never end. I can actually count the procedures that he has left to go. There's that light at the end of the tunnel that everyone talks about. :)

Happy Thanksgiving!

Love,
Michelle

Thursday, November 16, 2006 6:42 PM CST

Well, there's not much new here. Just thought I'd give a quick update. Ben's counts have remained very low, so he's still hanging out around the house with me. He's feeling really well though, and there have been no infections to require a hospitalization. I'm very thankful for that! We fill our days with homework, walks, reading, writing letters, and playing until Hannah gets home. Most days go well, however today was a day we both agreed that going to school is much more fun. :)

On the bright side...he's missing an outbreak of lice in the classroom. Darn! :)

I would expect that he will remain at home until after Thanksgiving break. By then, we will head back to the clinic on November 27th for his first post-treatment exam, ultrasound and chest xray. Hopefully by the time all of that is over with, we can forge ahead into a normal schedule, whatever that may be.

Happy Thanksgiving everyone!

Love, Michelle

Wednesday, November 8, 2006 7:54 PM CST

Hello,

Not much to update, other than Ben's counts have taken a pretty good dive. We expect that to happen after treatments, so it's not a surprise to us. Despite how low they are, you would not be able to tell by watching him (as usual). He has a ton of energy and feels great. His lab results may drop some more still, but he doesn't have much to work with to begin with, so that's a little worrisome.

I've pulled him from school until we see the results coming back much, much higher. Last time it took two weeks, so I'm really hoping that it's a shorter recovery period this time. This should be the last time for this to happen and then we can leave these days behind us. Looking forward to that!

Our trip to Appleton was a lot of fun. Ben had received a very generous gift to spend on whatever he wanted (thank you Herb!). He decided to share it with Hannah and also asked if he could send some of it to an African AIDS orphanage that my brother had worked at. He said he wanted them to have the medicine they needed. Of course, that made me the proudest mommy ever!

I'm sure I'll write again when he's fully recovered and ready to jump back into the world with full force. In the meantime, take care of yourselves and your loved ones.

Love, Michelle

Friday, November 3, 2006 7:56 PM CST

Five days down, zero to go. Wow, seven months later and here we are - again. Another milestone has passed. What lies ahead? Regular blood draws for the next few weeks to see when his counts drop; waiting for his bone marrow to recover (while missing more school) after that drop happens; an appointment at the end of the month for an ultrasound, chest x-ray and follow up exam; and we'll see what the plan is thereafter.

Ben's doing very well. Outside of the clinic he thrives. Inside of the clinic is another story. His body rejects anything clinic related. The odor of the tapes and bandaides used, the odor of the hand soaps, the sight of the rooms, the sight of any kind of food, the idea of being offered Gatorade or juice...all very bad stuff in his eyes. We were lucky to be close to a garbage can on the way out of the clinic today - all week we've been able to make it to the car without incident, but today was a no-go. His belly had had enough!

Everything was running right on time in the clinic today, but we (I mean, I) managed to spend a bit more time in Marshfield by locking the keys in the car at a gas station. Grrr. Thankfully we found an incredibly nice gentleman who bailed us out on a timely basis.

Tomorrow we are headed to Appleton, WI for a family celebration of Ben's treatment completion. He is very excited, and so are we!

Thanks for checking in on him and all of the encouraging and fun notes in the guestbook!

Love,
Michelle

Monday, October 30, 2006 5:50 PM CST

We're finally here! One day down, four more to go...and then he's finished his treatment protocol!! There are so many levels of emotions connected to this particular milestone, but I won't get into it all. It's much more complex than I can even understand myself.

Trick-or-treating was a lot of fun for the kids. They collected a LOT of candy. Afterwards, we hung out at Grandma's and the kids handed out candy to the other trick-or-treaters.

Today was an okay day for Ben. He was in a cheerful mood when we left the house, but once we settled into the clinic room, he became somber and complained of not feeling well. I think the clinic environment and "smells" bring back such powerful negative thoughts that he begins to feel sick even before the medicine is given. After watching a short movie, he decided to sleep the rest of the time. He once told me that he likes to fall asleep because he doesn't like getting his medicine, so when he wakes up, it's all over with. He has some good coping strategies for a young boy. Another tactic he uses is taking a shower as soon as he gets home to "wash the hospital smells off". He did ask for some anti-nausea medication this evening, but on the positive side, he ate some dinner. I think tonight will be an early one for him.

Tomorrow his class is having a Halloween breakfast party that he wants to go to. We scheduled his treatment for the afternoon, in hopes that he'd feel well enough to make it to the party. Mornings are usually pretty good for him, so I'm crossing my fingers that he'll hang in there for that.

Hannah and a good friend made Ben cards cheering him on for his last week. She has a giant heart - she makes me so proud.

I'll be back sometime this week. Until then, have a great week!

Love,
Michelle

Thursday, October 19, 2006 6:06 PM CDT

Hello!

Ben is finally back to school!! After a mixup with the lab results, we found out that he was good to go and he made it in by 12:30 p.m. Didn't even miss milk break or second recess - now that's a good day for a second grader. He was so excited to get back. When he got home he had so many stories to tell me, he could hardly contain himself. It was delightful to see his eyes just shine. Today was the same - he came home full of excitement.

We're going to skip next week's treatment and change it to the following week. I'm glad he won't miss next week, just when he finally got back in the classroom.

Take care everyone!

Love,
Michelle

Monday, October 16, 2006 12:29 AM CDT

Things are still pretty much the same since I last wrote. Thursday's labs were worse than the previous labs, so he continued to stay home from school for the rest of last week. Today we went to recheck them and they are starting to climb, but are still pretty low. He'll stay home with me until the next time we go in, which will probably be Wednesday or Thursday.

He's feeling normal in every way, so this has been like an extended vacation for him. He still has to do his school work though! So far, keeping him close to home has been working to his advantage - no infections of any kind! :) He's supposed to have his last treatment next week, but I'm wondering if that will be postponed because of how long it's taking for his counts to rebound. I guess time will tell.

So not much new in our world. Looking forward to being able to go out into the world with him and do something fun.

Thanks for checking in...

Love,
Michelle

Oh, and to answer your question Alisa, Ben's going to be a robber and Hannah's going to be a cow for Halloween. :)

Tuesday, October 10, 2006 1:19 PM CDT

Hello!

There hasn't been much to write about since I last updated. Ben was going to school almost all of last week, until his counts began to drop. He was out of school on Friday and I will continue to keep him home until we know what his lab results are on Thursday. I'm not taking any chances while his immune system is compromised.

So far, he hasn't been affected by his counts being low. He seems to be feeling perfectly fine, with just a slight bit of fatigue. I hope that our efforts to keep him away from public places will prove to be effective in keeping him out of the hospital with some kind of infection. I have a feeling that he'll do just fine.

A few events had to be canceled or postponed this weekend, which was kind of a bummer, but he handled it well. One thing he and Dave had to miss out on was going to a Packer game together. That's the second time that's happened to them.

Other than that, things are going fine here. I don't think that I'll have anything new to update until his next (and LAST!) treatment starts on October 23rd. Until then, take care. :)

Love, Michelle

Friday, September 29, 2006 7:30 PM CDT

Great news!

Just as Ben's doctor had anticipated, the CT scan today showed nothing of concern. Ben's 5th round of chemotherapy is completed as of today. One more round to go! That's currently scheduled to begin on October 23rd.

He's handling everything very well. Other than some nausea and some fatigue, he sailed right through this week. He feels the most sick in the clinic - anticipatory anxiety probably compounds the nausea he already feels.

We were able to get to the Coldstone Creamery event for Make-A-Wish. Ben and Hannah fixed and served up some ice cream to customers. After some initial hesitation, they were up to their elbows in ice cream. They even had a chance to use the cash register while checking out Dave and myself. I'll post some photos later.

Take care everyone!

Love,
Michelle

Tuesday, September 26, 2006 1:54 PM CDT

We’re back in business. Ben started his 5th round of chemotherapy yesterday and he did wonderfully. He decided to take a nap during the time it took to infuse the medication - he said that if he did that, it would make it seem like it went faster since he didn’t like getting the medicine. He did not get sick all night or this morning. He did feel nauseated yesterday evening and again when he first got up this morning, but the anti-nausea medication took care of that right away. Today Grandma Julie brought him to Marshfield. He always loves that.

Yesterday he also had an ultrasound and chest x-ray done. The ultrasound looked good, but the x-ray showed a questionable spot sitting on his left lung. Our doctor doesn’t seem overly concerned about it, because it presents itself like it could be something residual from the cold he had recently. He does want to further investigate it though, so a CT scan is scheduled for this Friday to confirm that the Wilms is not spreading. One of the first places Wilms typically will spread is to the lungs, so it’s not something to take lightly. I’m going to stick with his theory for now though and try not to worry myself over it all week.

Last weekend we had the pleasure of going to a Milwaukee Brewers game. We were on our way down in that area to attend a wonderful benefit event for two families dealing with childhood cancer; an annual event put on by my aunt. Dave spontaneously decided to drop by Miller Park and pick up some tickets for the game later that evening. If anyone knows us well, spontaneous is not something we do often. :) The kids had an awesome time - it was their first professional baseball game, so it was a big deal for both of them. Ben had received a gift from Hannah’s softball coaches and team this past summer - a bat autographed by Brewers pitcher, Chris Capuano. It was Ben’s lucky night because he was pitching the night we went. It was a magical night for the kids. I’ll post photos.

Please keep Ben in your thoughts and prayers for continued good health during this round of chemotherapy and for the test results on Friday to be nothing of concern. Have a great rest of the week and I’ll probably be back on Friday or next week.

Love, Michelle

Friday, September 15, 2006 7:54 PM CDT

Yes Aunt Mereva, no news is good news! :)

Ben is doing really well. He had a great first week of school and has two birthday parties to attend this weekend. How much more normal can we ask for? He just told me that he had better get to bed early tonight because he has a big day ahead of him tomorrow. :)

He did end the week with a stuffy nose and some sneezing, so my guard is up a bit - okay, more than a bit, but I'll manage. But his counts are normal, so he should be able to fight that off on his own.

More great news...he doesn't have to go back in to see the doctor until September 25th. They're giving his body plenty of time to rest and heal before giving him any more chemotherapy. So he gets all of next week to go back to school before we head back to Marshfield.

Here's a plug for Make-A-Wish...they are teaming up with Coldstone Creamery for "The World's Largest Ice Cream Social" benefit. They'll be doing an event in Stevens Point on September 28th (Thursday) from 5-8 p.m. We were asked if Ben would come as a "wish kid", but that's during his chemo week, so we can't commit. We will absolutely be there if he's feeling up to it, but if not, we'll have to wait until next year. If anyone in the Stevens Point area is going to be around on Thursday evening and has a craving for ice cream...head to Coldstone! Check out the website for more information on how the money is raised and where other locations are if you aren't from the Stevens Point area...

http://www.wish.org/news/news_releases/cold_stone_creamery_ice_cream_social_2006.

Okay, off my soapbox now. Take care everyone and I'll be back after our vacation from doctors. :)

Love,
Michelle

Monday, September 11, 2006 10:35 AM CDT

Great news!

Ben is finally able to go to school as of today. I took him in to see a local pediatrician this morning to confirm that the shingles have cleared up enough. He was given the thumbs up to go, so we headed there straight from the appointment. He made his way to "the red table" that he shares with two of his buddies and was put to work right away. He was pretty bashful at first; he was worried that someone might laugh at the spots that the shingles left behind. But based on their warm welcome when he walked in, I don't think that's going to be an issue at all. He has a great group of kids in his class.

After a long several weeks of chemotherapy, cryptosporidium and shingles, I feel like I can finally breathe again. The next chemotherapy treatment will likely be next week. He'll have to miss more school, but this time it shouldn't turn into a 5 week long saga! (I just knocked on wood) Only two more rounds to go and he will complete his treatment plan. :) :)

Thanks for the prayers, notes, thoughts, mail, phone calls...everything! With the help of you all, we got over this bump in the road - and hopefully grew a bit stronger too.

Love,
Michelle

Wednesday, September 6, 2006 5:52 PM CDT

Home again!

Ben's doing great. We were sent home this morning. He still has a variety of medications that he'll need to take over the course of the next week or two, but everything can be done at home. I'm really hoping that the shingles will have cleared up enough for him to get to school by Monday. Tomorrow we are heading back to Marshfield for an OUTPATIENT visit, following up with the eye specialist. Packing will not be invovled in this visit! :) I'm not certain when his next round of chemotherapy will be since things have been so crazy. He's now two weeks behind the original schedule.

More fantastic news...Ben is officially free and clear of Cryptosporidium!! It's about time!

Hannah had a great first and second day of school. It was so fun to see her enthusiasm and excitement. She bounded off of the bus with a huge smile.

Ben's first day was not the typical, but we made sure he had some kind of experience. Yesterday, he wore his "first day of school shirt" that he had picked out before we knew he wasn't going. I was able to, thanks to the wonderful cafeteria crew at Almond-Bancroft, deliver Ben his very own Beefy Cheesy Nachos from school since he wasn't able to be there. The look on his face was priceless when I showed up with that. And to top off his first day of school, Hannah brought home his school work and he was able to complete his first assignment. He worked while sitting in bed, wearing sweat pants and eating nachos. Can't get more cushy than that!

Hopefully the rest of September (and the rest of the year) will be much less eventful than the last several weeks!

Love,
Michelle

Wednesday, September 6, 2006 0:24 AM CDT

Real quick message...already tried twice and just when I was finishing up, was booted out, leaving NOTHING behind. Ugh!

Summary...

Saw the eye specialist - no damage has been done - whew; prescribed antibiotic eye drops and an ointment as well to double up with the IV antibiotics he's on already. Will take those for about 2 weeks. See the specialist in the clinc on Thursday (outpatient) for follow up.

Shingles lesions not spreading, seem to be opening and crusting (no pretty way of saying that), so all is good there. Looks like the antibiotic is doing it's job.

Spending the night tonight for observation on the eye drops. If his eye tolerates them well and things appear to be improving, he can go home tomorrow on oral antibiotics to replace his current IV, as well as the eye drops and ointment.

Crypto stuff...four samples have been tested since we've been here (two I had brought in from the weekend). The first three tested positive, but the last one tested negative. Crossing my fingers that tonight's sample collection will come back as negative tomorrow. At least we could walk out of here with one less ailment to deal with! :)

Have no clue when Ben will be cleared to go to school.

Kid stuff...will explain first day of school in a later entry that I won't lose to the computer!

Thanks for hanging in there with us - your encouragment keeps our heads above water!!

Love to you all,
Michelle

Sunday, September 3, 2006 1:35 PM CDT

10:00 p.m.
So, he's settled in, sleeping, the antibiotic is running, and we're going to wait and watch closely to see if this is the right approach. The biggest concern right now is that it's involving his right eye and if it gets much further involved, it could cause damage to the eye. Hopefully this is the right med for him and things will start to clear up. He looks like he's been in a boxing match, with his eye all swollen like it is. It's surprising how quickly it seems to have spread. That's all I know for now. Good night!




Just a real quick FYI...

Ben is getting admitted into the hospital for what they think may be chicken pox or shingles (that's what the rash turned out to be). He's going to be getting IV antibiotics for a couple of days and then we'll see where it all stands at that point. If okay, he may be able to go home with oral antibiotics. Unfortunately the drug used to treat it is not great on the kidney, so they'll be doing a balancing act with it.

Until later...
Michelle

Saturday, September 2, 2006 9:14 PM CDT

Hello on this Labor Day weekend,

I hope that you are all enjoying the long weekend, whatever you are doing.

I wish that I were here to say that Ben has had two negative test results, and is all set to head for the land of learning. We did get close on Thursday, when we received word that his sample was negative. But Friday’s test came back and bit us with a positive result. This brings us back to looking for two consecutive negatives so we can finally consider him to be clear of this. Frustrating indeed.

On Tuesday, he started to get a couple of little bumps on the right side of the bridge of his nose, and a bloodshot eye on the same side. As the week progressed, the bumps got bigger and multiplied. I took him in on Friday after he was in for his lab work. The doctor isn’t certain if it’s a bacterial or viral infection, so he has put him on an antibacterial ointment to see if we can clear it up. If it doesn’t get better, we’re to take him back and get further testing done on it. By the looks of it, he’s probably going to need to go back in, but we’ll give it another day and see if it turns around for him.

Between the crypto and now this mysterious rash, school is out until further notice. I wasn’t sure how he’d feel about it. When I told him the news, this is how he processed it: He stomped his foot first and said, “Oh man!” Then he went into a brief and quiet “deep thought” moment. He then looked up with a smile on his face and cheerfully said, “Hey, that’s no problem! We can just make nachos at home! ‘Cause that wouldn’t be fair if I had to miss out on nachos. Besides, the only bad thing about nachos at school is that they don’t give you enough.” Apparently the main thing he was looking forward to about the first day of school was having the Beefy Cheesy Nachos (he and Hannah’s absolute fav) that they were serving at lunch that day. I was intrigued and impressed by how quickly he went from frustrated to solving the problem and moving right along. Much better than the average adult. I think I'll make a lunchtime trip in and surprise him with a take out order of school's famous Beefy Cheesy Nachos. :)

Hannah is very much looking forward to school. She has a wonderful teacher and she is so excited to get into the classroom to dig in. It’s great to see her enthusiasm. On Thursday, she got to go and check out the classroom and see where her desk and locker are. I think it is going to be a good year for her. She’s been through a lot due to Ben’s ups and downs, and she could use some stability in her life.

As always, thanks for stopping by to check in on Ben. Hopefully by the time I write again, the infection on his nose will be resolved, the crypto will be long gone, and Ben will be in school thinking about things other than nachos. Until then...have a great rest of the weekend!! :)

Love,
Michelle

Wednesday, August 30, 2006 8:19 AM CDT

Good morning!

Not a lot to write about here concerning Ben's status as Captain Cryptosporidium. After four samples and four positive results, he's still stuck with it. Grrrrr. The likelihood of him being able to make it to his first day of school is getting dimmer by the day. I need to accept that, and I'm having a hard time with it. Probably a harder time than Ben. :) Ben was right on the mark when he told me Cryptosporidium was really stupid. On the positive side, his labs have all been really good and his electrolytes have remained very stable.

So all I can do is continue to drop off samples and hope that one of them will come back negative eventually. Then two. Then we're DONE. Until then...no school, no public restrooms, and my favorite thing of all things in the whole world - waiting some more with no knowledge of how long this will take. It could take days, it could take weeks. It all depends on what Ben's body does and when the crypto works it's way out of his system. It usually takes longer for someone whos immune system is compromised.

Fortunately, he can go to public places (as long as there is no need to use the restroom) and be a normal kid again. It makes it a little tricky to time our outings at times, but so far it's been fine - and it's better than being confined to home. His activity level is pretty much normal. Although he seems to tire more easily than he did before when he's active, it doesn't stop him from much. He and Hannah are back to their normal routine of verbally assaulting each other, with an occassional murder attempt tossed into the mix.

So we will wait - hopefully not long, but there's nothing we can do to control that part. If he has to do school at home for awhile, then that's what we will do. I'm just glad he's not in 5th grade like Hannah - I'd have to call in the tutors to get through Math! :) It's pretty amazing how much more further along they are now than we were when I was in 5th grade!

One final note...we are slowly plugging away at thank you notes, so please don't think of us as being rude if you haven't heard from us yet. We appreciate all of your generosity and don't want it to go unnoticed. Ben takes a little longer than Hannah does, so it's a slower process.

Take care and I hope to be back very soon reporting TWO NEGATIVE RESULTS!!

Love,
Michelle

Saturday, August 26, 2006 4:42 PM CDT

WE ARE HOME !!! :)

As soon as Ben got home, he went straight to the couch and proclaimed, "This is the most comfy couch in the world!". After all of that laying and sitting down in the hospital, I would have expected him to have chosen some other kind of first-time-home activity, but if he's as tired as I am, I completely understand his admiration for couch cushiness. :) He stayed there while he opened his mail, and then moved on to Legos.

I cannot believe that this adventure lasted for 2 weeks - it's crazy! And still, the crypto lingers on. His first culture came back positive, showing the crypto is still alive and well. What a persistant pest it is! They've sent a second sample, and we are to continue sending in samples until we get two negatives. I'm am hoping, hoping, hoping that we will get those two negatives BEFORE September 5th, the first day of school.

Regardless of the fact that we haven't completely given it the boot, Ben is feeling well enough to be back where he belongs - in his own house. The infection is to a point where it would be extremely difficult for him to spread the joy of cryptosporidium to others, but we are still taking precautions like crazy until we know it's gone. We'll also be back in for labs (in Stevens Point this time) on Monday, Wednesday and Friday to keep a close check on him.

When we were finally discharged, he wanted to go and check out all of the things he doesn't normally get to see, because he's stuck upstairs in his room. He wanted to take the stairs down, rather than the elevator. When we took the stairs he said his legs were wobbly, so maybe we better take the elevator back up. We made a must-stop at the "big" vending machine area, where he wanted to spend one of his dollar bills that was sent to him. He had a hard time deciding among all of those tempting vending varieties :), but went with a bag of cheese popcorn. We then hit the cafeteria for an early lunch. On our way out we made a stop at the gift shop. After some careful thought, he decided on a pen with a magnifying glass attached to the top. He also helped pick something out for Hannah. We finally left the building around 11 a.m.

Thanks to Dave, the house looks great - clean and in order - just the way I like it. :) He even had a beautiful card and some gifts waiting for me when I walked in. Made me cry. There aren't enough words to describe how good he is to us.

So, that is my long way of saying...we are home, we are happy and we will all sleep soundly under the same roof tonight.

Love,
Michelle

Friday, August 25, 2006 12:13 AM CDT

Just a quick one since I have to get back to the room...we're going home tomorrow instead. They want to hang on to him for one more day to have a full 48 hours of observation and to also see what his culture looks like later this evening. They're also hoping to get another sample collected before we leave. So, he's still doing great - just need to wrap up a few things to be certain. They'd rather do this than release him and have him have to return within a day or two because he wasn't actually ready. That's fine with me, as I'd rather not make the return trip either!

Gotta run!
Michelle

Thursday, August 24, 2006 9:48 PM CDT

Another great day was had! It looks more than promising that we will be given the boot tomorrow, for more than one reason. First, the most important, is that Ben is doing awesome and is ready to go (the ONLY thing that could stop him is if he had a bad night, which would be very odd and unexpected). And second, they are so full back here that they are having to send kids up to the adult unit until beds become free. I would guess that they are eyeing up room 357 as I type. :) Hopefully that will motivate the discharge process to move a little quicker than normal tomorrow.

He's sleeping so soundly right now - sprawled out on his stomach surrounded by his stuffed animals. We had a busy day, so I can understand why he'd be wiped out. Well, busy for being in the hospital anyway. He got out of the room twice today for quite awhile. We played a fishing game and put together a puzzle for part of the time. He also tested out the video games in the play room. We did some reading, watched a movie, and he put together a new lego set he got from winning in Hospital Bingo. Hospital Bingo can be played over the phone for kids who can't leave their room, but still want to play - he'd never done that before, so even though he could physically go to the room where they play, he decided to try it out over the phone. He really liked it and was more chatty with the group than if he were actually there.

Hopefully we won't have a whole lot of follow up care once we get home. They've already collected one stool sample from him to be cultured (we're hoping that will be the first of two to come back negative) and if he's here in the afternoon tomorrow, they'll collect that one too...I wasn't looking forward to being the "collector" on that one, so I'm pushing for it to happen before we leave. :) It's funny, because now that we need a sample, he's slowed down so much that we have to sit around and wait for him all day! He has to have two tests come back negative to be cleared of Cryptosporidium, and he can't go to school until then. School is on September 5th, so please cross your fingers that they are both negative results.

Hoping that I will be writing tomorrow from home...

Love,
Michelle

Wednesday, August 23, 2006 8:14 PM CDT

Hello!

Today was a very good day. :) :) :)

Ben is now off of his TPN, lipids, two anti-diarrhea meds, Neupogen injections and free of the IV that was placed in his arm. He's only left with one IV through his port, for IV fluids only, and one oral antibiotic. Lots of progress from where we were 11 days ago!

Tomorrow and Friday will be days of watching him closely now that he is "on his own". I'm very encouraged by how well he looks and feels today. I'm anxious to see what his lab work will look like tomorrow. Crossing my fingers for stability at the very least. I have a good feeling that things will be okay. Friday is looking more and more like it will be the big day to head home.

Ben's the poster child for being a patient in the hospital - always cooperative and friendly with the medical staff. It makes me proud to see how well he manages the crazy stuff that's thrown at him. I don't recall a time where he's been uncooperative or mad at the staff during this visit, regardless of what procedures had to be done. The only time I really heard him say anything angry was when he told me, "Mama, Cryptosporidium is really stupid!". (Why should a 7 year old have to know how to perfectly pronounce Cryptosporidium?) I'm not saying that he didn't have a few times of sadness or frustration from being away from home, but overall, he's just been keeping occupied and rolling with the punches.

The hospital has been wonderful in providing fun things for him to be involved in and keeping his days busy. Yesterday he had bedside Music Therapy in the morning, and in the afternoon, Pet Therapy (2 visiting dogs to toss balls to and have a photo taken next to). Today was Music Therapy again and she had Ben on the bongos, Grandma Julie on the xylophone (sp??), me on the keyboard and the therapist on guitar. We all compiled a song named after Ben's stuffed animal penguin named Mr. Fluffy. She taped it for us, so we have proof that Grandma was jammin' on the 'phones. :) It was a fun time that made for lots of laughter.

Ben's enjoying all of the mail he's been getting - thank you to all that have sent cards to him. That's another fun part of the day - mail call! And all of the emails and guestbook entries make him feel well loved. There are so many people who have reached out to help this extended visit go better - in many different ways. I can't thank you enough (you know who you are!) :) We are going to try to make a dent in thank you notes once we get home, so please be patient if you don't hear from us on a timely basis. We are grateful and want to be sure each of you know that.

We are so blessed to have a huge support system and that, rather than getting completely burnt out by trying to do it all alone, we are able to take breaks and be better parents and advocates for Ben's health care, as a result of getting these breaks to regroup. I feel bad for anyone who might not have the luxury to be able to get away for short times and come back refreshed and a much better person for it. I hope that there aren't too many situations like that - it's a rare person that can effectively be the sole provider for their child in the hospital, and not get burnt out. I'm happy to live in a world that shows the good in people when they pull together to help someone who's struggling. I only hope that I can be that person to someone else again.

So, tomorrow and Friday will tell us more stories and hopefully they will be happily-ever-afters.

Thanks for hanging in there right along with us. You are our amazing support system and we embrace each and every one of you.

Love,
Michelle

Wednesday, August 23, 2006 0:12 AM CDT

Sorry for the lack of updates.

First of all, I just got done typing out a long entry and when I was almost done, the computer decided to shut down on me. Ugh! So, I'm going to keep this second version less detailed. Probably like it should have been in the first place. :)

He's showing great signs of improvement: eating and drinking very well, interactive and happy, stronger, less frequent "cha cha cha's" (I know...immature on my part, but I spent time with my brother today, so I blame him), labs staying stable. Still battling the bug, but it seems to be slowing down.

Sunday through Tuesday, they decided to start weaning him off of the TPN and lipids he's been on. Today he will be completely off of everything, except one antibiotic and IV fluids. They will be watching his electrolytes very carefully to see how his body will handle everything without nutritional aid.

Current "plan": If his electrolytes will stay stable on their own, and if he continues to eat and drink well, and if his stool output is at an appropriate level, he could possibly be released on Friday afternoon/evening. I'm not sure what to think. As much as I'm ready to be home (and that's A LOT), I don't want him to be discharged prematurely. I don't want to get home, have things go haywire, and then have to come right back. We'll see.

Even after we get home, we'll still have to watch him closely, as this parasite will still be working it's way out of his system - no one knows how long that will take.

So that's that. Still waiting, but things are on the upswing and Ben's comfort is much improved. I'll try to write again tomorrow when I see how his labs are looking and possibly know more.

Thank you ALL for continuing to pray, check in on Ben, leave him messages, and help out!

Lots and lots of Lansing Love! :)
Michelle

Saturday, August 19, 2006 2:20 PM CDT

Still here. Status same. Will update if anything changes.

Friday, August 18, 2006 9:46 PM CDT

Another day has passed. I think things are getting better. It can be hard to tell when you put it all together though. He continues to look good, although I'd say he wasn't as active as yesterday. He seems to be having some pain in his legs - especially the knees. He's now put on 4 pounds overnight from all of the calories and fluids being pumped into him. Guess I can check "weight loss" off of my list of concerns! His labs show that the numbers are all on target, or at least very close to being on target. He had been fever free all day again, up until about 4 p.m. The big issue is still haunting him. He lost (are you ready for this one??)...9000 mls of fluid yesterday ALONE. He's averaging every hour, around the clock. Ugh! Needless to say, that is one issue that has not been resolved and there's really not a whole lot that anyone can do about it. The Crypto has to work its way out and then it will stop. No one knows what this Crypto has on its mind for a departure time, but it seems to find Ben's body to be a nice little time share.

He tried to eat some more today and drank quite a bit. He did end up throwing up, but at least some of it had to have been absorbed!

Ben's spirits are getting low. He's cried three times today because he just wants to go home and he wants to stop all of this bathroom stuff. He said he wants to go home and never leave again. It's hard to see him so sad.

Hannah has been busy and having a good time. She's a little torn between having such a good time and wanting to be with us. Being with us gets to be boring after awhile, and having a great time away from us sometimes makes her worry about how Ben is doing when she's gone. Tomorrow she is going to meet LeRoy Butler and participate in a football camp that he is leading. She's bringing Ben's puppy to have it autographed along with the other autographs that are on it. Afterward, she has a sleepover birthday party with her girlfriend and is excited about doing that too. Then on Sunday, she is headed up north to stay put for awhile with my brother and his family. Cousins to play with, horses to take care of, a lake to swim in (hopefully cryptosporidium-free) :) and much more. She will stay put until we can come and get her. I'm glad that she will finally get some stability and stay put in one place. She's a great kid and has just rolled with the punches so gracefully. I've had many one on one talks with her about how she's feeling about all of this moving around while we're away and she was completely open with me. She's awesome!

Having both Dave and I here has made a world of difference. It's so much more managable now. I'm glad it's working out so far and hopefully we won't have to make too many more special arrangements. We'll just have to get through the weekend and reassess on Monday what the next plan of action will be.

We had a few visitors today - new faces! :) We love visitors. Thanks for coming Jen, Carol and Judi (and baby Cali)!!!

So, not much has changed. No idea when we're going to be released. Baby steps are still being made. Things are not going downhill. Good stuff.

Until tomorrow...

Love,
Michelle

Thursday, August 17, 2006 9:53 PM CDT

Back again,

Things are still up and down, but more up than down. The positive changes are very gradual, but we are making headway, rather than losing ground. You have to love that! Outwardly, Ben is beginning to perk up much more now. He is looking better, becoming more alert and even asked to play PS2 today - that's a huge step considering he had been sleeping or just laying and staring when awake for the last few days. He EVEN asked to eat some Cherrios and string cheese today...and it all stayed down. That was also a great stride.

Last night was a tough one. He was in the bathroom at least every hour, had muscle pains, was so tired and just wanted to sleep but his body wouldn't allow him to rest. He asked for pain medication because he was so uncomfortable. That was a first for a long stretch of time. Yesterday alone, he lost 4900 ml of fluids after having to use the bathroom 21 times during the day and night. The day before he lost 4000 mls. However, the good news from last night is that his fever seems to have broken. He didn't have one all night long or most of the day today. Around 6:00 p.m. though, he did get a 100.6 temp., but we're hoping that was just a fluke.

His platelets are low, so he was given a transfusion for that. His lab work showed that the numbers that were concerning the doctor are slowly creeping their way back to normal - two things have yet to get there, but it'll just take time. His white count is coming up, thanks to the Neupogen injections, and his ANC is up to 200 from 100 yesterday. Still quite low, but progress is progress. We just have to keep in mind that this is going to be a slow process. I know I keep mentioning that - it's probably because I'm trying to accept that fact.

At this point, some of the stipulations for him being released are that he needs to be eating and drinking, without any IV nutritional support, and still be able to maintain normal electrolyte levels ON HIS OWN (they are currently being controlled by infusing him with what he is lacking). His bowel movements need to be under control. Ideally, his counts should look better and the fevers should be at least reduced. The fevers are the only thing we have on our side right now, and it's anyone's guess when the rest will follow. Right now, based on the large amount of fluids being lost, he's not ready to be off of the IV supplements. When he is ready, they'll slowly take IV bags away and see how his body can handle it on its own. He can eat and drink anytime, so hopefully today's "meal" will trigger more hunger. So, again, it's anyone's guess when he will be ready to go home.

When we do get home, there will still be work to be done. He will still have some issues that will need to be dealt with while the parasite works its way out of his system. This is one nasty bug! Topping it off with chemotherapy and a compromised immune system and you've got yourself one big mess.

Dave arrived tonight and will be here through the weekend, so both of us will be able to get rest when needed and help care for Ben together. We'll see where Ben's at on Sunday and start planning from there. We're taking turns doing nights at the hospital - it's my turn at the Hope Lodge tonight. :) After last night (30 minutes of rest, after a labor intensive day of caring for him), I'm more than ready to enjoy some good sleep!

I think that about covers everything for the most part. Overall, he's getting and looking better. It's just not so easy to tell sometimes.

Thanks for checking in on Ben. Love you all!!!

Michelle

Wednesday, August 16, 2006 9:29 PM CDT

I have a window of about five minutes here, so I'm going to type fast. Things are improving very gradually. Positive things...he sat in a chair for a little while today, ate a few bites of pear (so what if he then later threw them up - he still gets credit for eating them!), only needed Morphine once today, and a few other little things that show he's starting to feel slightly better. He even was semi-awake for most of the day. I'm sure being Morphine-free contributed to that! :)

Still having the same main issues as before, but hopefully the labwork numbers tomorrow will come up even more than it did this morning. Still have no clue how long we'll be here. He had to have the IV in his hand replaced because he was having a lot of pain with it. He wasn't real happy, but he is such a patient and cooperative little boy.

Caring for him with this parasite in him has been such a physically demanding and constant thing - much more so than chemotherapy. I'm not used to this intense, around-the-clock care. It can be exhausting, and Dave is a great person to tag team with. Ben's not too thrilled to have many others care for him - so many personal things that a seven year old boy shouldn't have to share with someone other than his parents - well, even with his parents for that matter!

Okay, my time is more than up...I really better go!

Love,
Michelle

Wednesday, August 16, 2006 11:46 AM CDT

Hi again,

According to Dave, Ben had a rough night - up about every hour having to use the bathroom, which means lots of fluid loss continues.

The doctor's report this morning was more positive though. Although we can't tell by just looking at him (he still looks like he's just as miserable as he has been), his labs are showing very small improvements. It's not much, but it's something, and he said it just could be a very slow process to get him back to normal. Another positive thing is that he's not asking for Morphine as often. Even when they ask him if he'd like some, he knows when he does or doesn't, and he's saying no more often. Yesterday he wasn't even waiting to be asked - he was making the requests frequently. I'm so impressed with how well he can communicate with the medical staff about his personal needs. It's a change of pace for us from when he was little, and we always had to guess and make decisions for him, based on how we thought he might be feeling. It's refreshing to let him make some of the decisions...both for him and for us.

It's still going to be a long haul, and he's still quite sick, but it's relieving to know that we are making some progress instead losing ground.

I better get back to the room. I had a great night of rest and am refreshed and ready to jump back in. I'm sure Dave's feeling quite the opposite at the moment.

Thanks for continuing to check in on Ben and for all of the prayers and encouragement. That is the biggest thing that keeps us afloat!

Lots of love to everyone,

Michelle

Tuesday, August 15, 2006 6:16 PM CDT

Hello,

I'm at the Hope Lodge right now, so I actually have the time to type. Unfortunately, my head is swimming with thoughts and I'm having a hard time concentrating on typing, so this may short again. It also may be very scattered and confusing to read, because that's how I'm feeling right now.

Dave arrived with Hannah this morning and I am now getting a break and sleeping here for the night. Yea! :) Grandma Julie is taking Hannah home tonight and they are going to spend some girl time for a couple of days. We really have no idea how long Ben will be hospitalized, so we aren't planning too far ahead.

His day was one of very minor improvement, I guess. I'd say that he is basically in the same shape as yesterday, except for the fact that his ANC is now 100 (thanks to the white cell boosting injection yesterday), and his potassium and sodium levels are back to normal (thanks to three infusions). His phosphorus level is now very low though, so he is getting a 6 hour phosphate infusion to hopefully help that. If it doesn't boost his number up enough, then they'll just infuse him again. What it boils down to is that his electrolytes are getting all messed up from the frequent and large diarrhea episodes. They are unable to keep up with how much he is losing. Not to say they aren't making an incredible effort - as of 5:00 p.m., he had 5 different IV bags going through his port, was getting 4 different oral medications for a variety of symptoms, and is getting one injection of Neupogen each day in effort to boost his white cells. He continues to have fevers around the clock. They do go down, but they spike back up after the Tylenol has worn off. He continues to have a lot of discomfort and is on Morphin frequently to ward that off. He's very weak, still doesn't want to eat, but he is very thirsty. He did start receiving his antibiotic this morning, so I'm hoping to see some kind of improvement in the next few days. Typically, the response time for symptoms to settle down is typically 3 days, but since he's been on chemo, it could be 7 or more days. Ugh! I have no clue whatsoever how long it is going to take for all of this to clear up or when we might be able to leave the hospital. So much needs to happen - he's just so sick right now. It's awful to watch him be so weak. I feel very helpless and quite frankly, scared. This is the last thing that he needs after a week of chemotherapy. I don't know if I mentioned it in a prior entry, but we think that he likely picked this up from swimming in a lake recently. I feel terribly guilty, even though swimming in a lake is not off limits, or even unreasonable for Ben to do.

Alright, this was long afterall. But I was right about the scattered part!

Please remember Ben in your thoughts and prayers because he is one sick little boy that could use some serious extra help! I am going to go now and get a bunch of sleep...and hope that tomorrow, when I go back to the hospital, there has been some kind of significant improvement in his condition.

Good night!

Michelle

Monday, August 14, 2006 10:51 PM CDT

Even more limited time, so I'll write more tomorrow. We did find out that he has an infection called Cryptosporidium (say that 10 times). Having some troubles with sodium and potassium levels, still struggling with discomfort, nauseau, some serious diarrhea, started vomiting again...and yet there's much more I could write. I have to get back to him - he can't be left alone for long. This has been a really long and miserable day for him (and myself, for that matter). So much more to this than I have time for. Until tomorrow...
Michelle

Monday, August 14, 2006 11:27 AM CDT

Quick update as I have limited time to get to the computer. Ben's needs are a little more pressing than when we've been in the hospital in the past.

We still don't know the source of the problem, but he has such bad diahrrea that they are putting him on TPN so that he can get some kind of nutrition. He hasn't eaten since Wednesday, but he is finally drinking fairly well. Not like he should be, but it's progress. They are also planning to start the Neupogen injections today (these are the injections we used to give him when his counts were very low). The injections will boost his white blood cells and hopefully rev up his system a little. His lab results came back with an ANC that couldn't even be calculated, it was so low. Ugh!

He continues to need Morphine periodically to ease his discomfort, and also continues to have fevers around the clock. So Tylenol is given regularily, as well as his anti-nausea medication and an antibiotic is continuing to run every eight hours. Adding the TPN and Neupogen injections to the mix, he's on a lot of stuff. Hopefully the combination of it all will give him some strength to kick this thing.

Strength and energy are non-existent right now. He just lays in bed and sleeps or just stares. The only movement we get from him is a quick dash to the bathroom every couple of hours. He doesn't even want to watch movies. I hope this all turns around sooner than later.

Hoping for some answers through the cultures before the end of the day. Gotta run!

Love,
Michelle

Sunday, August 13, 2006 10:37 PM CDT

Things have not gotten any better. Ben got progressively worse, so we took him into the ER. Long story as to why he wasn't just brought into the hospital right away - not getting into it any further than I already have because I'm still working on calming myself down about the series of ridiculous events that should not have been.

Moving along...spent 4 1/2 hours in Stevens Point's ER to rehydrate Ben as he had become dehydrated - no big mystery there. They also drew his labs and found them to be VERY low. His ANC is 64. It should be a minimum of 500 - ideally 1000. So he is very suseptible to anything that's thrown his way. They decided to admit him (in Marshfield) and just as we were ready to go, they did one last vital check and found his temperature (which was normal when we arrived) to have spiked to 103. Geez. They gave him Tylenol, put a mask on him, and he and I sped off to Marshfield.

Here in Marshfield, his temperature has been bouncing around, but not leaving. He's been anywhere from 101 to 104. They have him on an IV drip for some fluids, an antibiotic drip, anti-nauseau meds, Morphine and Tylenol. He's in quite a bit of discomfort and doesn't move because he says it hurts. I can't even touch his head because it hurts too much. He has diarreah (I know, I spelled that wrong), and still won't eat. They are culturing his blood, urine and stools. He has now lost 5 pounds this week (8 1/2 since last month). He's one sick kid.

It's been a pretty miserable week for Ben. I'm still in disbelief that he has gone from handling his chemotherapy so well, to dissolving altogether. I've been quite scared, to say the least. I will be interested when our regular Oncologist comes back from vacation tomorrow to hear what he has to say. I will just be so glad that he's back in the first place! He will be a sight for sore eyes!!!

So, all I can ask for is if you could please say an extra prayer or put in a good thought for Ben over the next few days. He could use all the help he can get. And he's got that Packer game to get to with Dave on Saturday, so he HAS to get better. :)

Love to everyone,
Michelle

Saturday, August 12, 2006 1:01 PM CDT

Good afternoon!
It's a quiet Saturday afternoon here. Hannah just left to go camping with her friend Abby for a few days and Michelle is running all the errands that a crummy chemo week don't give her any time to do. She deserves the time, and the freedom to get her things done! She and Ben had a heck of a week, and any and all breaks are well earned. They have been through the wringer.
Ben slept very well last night - no throwing up and no fevers! Yahoo! He did manage to throw up (is it still called that if there is NOTHING to throw up? I think that's a heave - ouch!) five times this morning. He is now in the tub and has been for over an hour. I just added some more hot water - he can stay in as long as he wants, he's earned it. He is pretty wiped out, but at least there is no chemo today so he can start to strengthen up now. Still waiting for the first food request, but he has been drinking enough water to get by. It's now to the point where I am very curious to see what his first request will be; I only hope we have it in the house! If we don't, we will go get it for sure.
So, that's a quick summary. I better go check on the human prune in the tub to see if he has grown gills yet!
Thanks for checking in on him.
Love,
Dave

Friday, August 11, 2006 3:19 PM CDT

Thanks to the extra efforts made by Peg, Ben's nurse today, we were able to get in and out of the office in three hours. Not bad! Better than yesterday's 4 1/2 hours!

Ben's still feeling pretty awful. Although, he has perked up a little and isn't so lethargic. But he's incredibly nauseated and isn't eating anything; will only drink sips of things every now and then. He's continuing to throw up frequently - he's up to four times today already. So hard on his muscles! Unfortunately for him, he has nothing in his stomach to offer. He walked into the clinic this morning, but asked for a wheelchair to get out this afternoon. He's still very tired and weak and doesn't want to do much moving around. To and from the car or to and from the couch is about all he's up for with his current strength and energy. He does have a pretty good handle on the remote control though, so his fingers are still in good shape. :)

The fevers seem to be staying under control. They come and go and don't spike too high. We're able to keep them at bay. He's still sleeping with us, but he's a rather aggressive and bossy sleeper. He seems to think that we are to teeter along the edge of the bed while he spreads himself over a large portion of the middle. Once he feels better, he's outta there! :)

Since he's not eating, he's lost a little more weight - he's down 5 1/4 lbs since July 10th. Thankfully he's always had that extra "reserve" to rely on.

In the clinic he told me, "We both are going to need to take showers when we get home! We need to get this clinic stink off of us!". He's so funny.

I have no idea what the weekend is going to bring. I'm hoping that his energy will begin to return quickly and soon things will be back to normal. I guess it will all depend on how long the drugs linger in his system. It's been an especially difficult week for him, so he may need more time to recouperate. Who knows?? We didn't have a clue that this week was going to turn out like this, so we certainly can't predict what a weekend will be like. Whatever happens, we can ALL agree that we are ecstatic about being done with this round.

Thanks for all of the extra encouragment during this week. It's easy to lose your mind, faith and confidence in this process, but with friends and family in your cheering section, it makes it bearable. We love you all for that!!

Hoping to not have anything to write about for awhile now. We'll be back in for labs in Stevens Point on Monday and Thursday next week - curious to see what in the world those labs results are going to be like. Could be interesting.

I'll write later when there's more to write. Thanks for listening...

Love,
Michelle

Thursday, August 10, 2006 6:22 PM CDT

One more day down, one more to go. Sigh. It's been another long one, filled with ups and downs; some questions answered and some guesses made.

Ben is doing better in some ways - fevers have stayed away today and he's only thrown up once so far. Labs were drawn to see if there was anything odd going on, and everything looked perfectly normal. His examination looked perfectly normal. He’s not getting dehydrated.

But he’s gotten worse in other ways - lethargic, still not eating, drinking very little, has a lot of nausea and discomfort, and is much weaker than he's ever been with this chemotherapy. If he’s not sleeping, he’s resting on a couch or chair, groaning from his discomfort. Everything from his hair to his toes aches. And he's lost almost 5 lbs. since last month.

They gave him some Tylenol with codeine this afternoon, to help curb the discomfort, and since then, the groaning has subsided. I’m happy to see that was able to be addressed. He won’t let anyone snuggle with or even touch him for two reasons: one, it’s too uncomfortable; and two, he is incredibly sensitive to smells and he thinks that everyone stinks! Not good for the ego, I’ll tell you! :) He even thinks that he smells and asked to take a shower last night to "get the stink off".

Today, he actually asked me for a wheelchair to get him from the hospital doors to the clinic area because he said he didn’t think he could make it walking. He doesn’t care for wheelchairs, as they make him feel self conscience, so it was an odd request from him.

So, the conclusion (assumption, guess) is that all of this is a reaction to the chemo. It’s thrown us for a loop because he’s never had such a severe reaction. Up until this time, it was pretty hard to tell that he was getting chemotherapy by just looking at him. The drugs must be really getting into his system and wreaking havoc now.

Thanks for keeping him in your thoughts and prayers. We really appreciate them all during this extra trying week.

Lots of love from our stinky family to yours! :)

Michelle

Wednesday, August 9, 2006 10:01 PM CDT

Bad day again. Ben is really getting it socked to him and none of us are liking it - especially him. This time the chemotherapy seems to be either finally catching up with him, or giving him an adverse reaction that he hasn't had in the past. He's been vomiting (four times today alone), has fevers, has lots of aches and pains - neck, legs, feet..., no energy, no appetite, fluids? Forget fluids! It makes it difficult to throw up on an empty stomach. How horrible. He's just miserable and so am I watching it all happen with limited resources to make it go away. He's been sleeping with us so that we can keep a close eye on him all night. The fevers are pretty consistant during the afternoon and into the night, but by morning, they are back to normal.

Tomorrow we are to head back to the clinic and he will have a full examination done by the doctor. She will also order extra labs to be sure he's not getting dehydrated and his counts aren't doing something funky. And they will likely give him more fluids than normal through his pump to boost him up a bit.

The only other part of the plan that could alter is that if he gets a fever tonight over 102, we may have to admit him into the hospital. That's a blast from the past!

So that's that and it stinks, but it's what it is and we just have to keep plugging away until this thing all passes. When things settle down again, then I will take a long nap. :) For now...I pray and worry and then pray some more.

Love you all,
Michelle

Tuesday, August 8, 2006 9:11 PM CDT

Hello,

Another rough day for Ben. Started off the same way as yesterday - sluggish, not too hungry, achey. We made it to the clinic without incident, but ended up losing what little breakfast he did choke down, in the clinic treatment room. Better spot than a moving vehicle. He had a fever last night, but nothing this morning. When we got home from his treatment, he was looking sickly. He took a nap in the car, and then another nap when we got back. When he woke up from his second nap, he had a fever of 101.9 - normally needs to be hospitalized with anything over 101.0. But since he's coming in tomorrow for another treatment, they told us to just keep giving Tylenol and come back in tomorrow as usual. Cultures will be taken tomorrow to rule out any kind of bacterial infections that may be causing the fevers. Until about 1/2 hour ago, he's been laying down and looking very weak. He just now is perking up. We gave him a dose of his anti-nausea meds to cover him overnight, as well as Tylenol to curb the fever and discomfort.

He typically sleeps 9-10 hours each night. Last night he slept for 12 1/2 hours, and we still had a hard time waking him up this morning. He must be completely tapped of his energy. The big question...is it the chemotherapy causing this chaos to his body, or the possible virus he may have had, or a combination of the two???? One thing we can be pretty sure of, is that the chemotherapy is building up in his system and the side effects are coming more readily than when he first began his treatments.

Not sure what is to come - maybe this is the peak of it all. Only time will tell, so I will go to bed now and see what tomorrow will bring us. Good night all!

Love,
Michelle

Monday, August 7, 2006 8:15 PM CDT

Not a great few days for Ben. He got a hold of a virus (nothing too nasty) and started feeling sick on Saturday. Low grade fever, GI stuff, not much energy, decreased appetite, nausea...
By Sunday the fever left, but the other stuff hung on.

Still sluggish this morning, but decided to eat breakfast. That backfired later in the car on the way to the appointment. Thank goodness for the container that remains in the back seat at all times. Got to his appointment; after discussing the viral issue, there was no medical reason he couldn’t get the treatment (no fever, counts good...). If delayed a couple of days, we’d end up spending the weekend doing it in the hospital vs. the clinic (his comfort zone). It would still be outpatient, but Ben is highly opposed to going into the hospital environment - it makes him nauseous and he’s actually vomited in the past, by simply walking in there. Treatment shouldn’t really be delayed more than a few days(unless really necessary) - need to keep on course with his treatment plan.

We all decided to forge ahead, so today he got his first treatment, of five, for the week. After a good dose of anti-nausea medication was pumped into his port, he was feeling much better, but still tired. He laid down on the cot the whole time - not like him. Upon leaving, he decided he was hungry and insisted on eating. He ate, then slept almost the whole way home. As soon as the car stopped in the driveway, he jumped out, container in hand, and lost his lunch too. Poor kid! More anti-nausea meds were given and he has been better. He’s now eating watermelon and has low grade fever - not high enough to report to the doctor though. I have no idea where that’s going to end up (the watermelon OR the fever!). We’ll have to see what tomorrow brings...

Love, Michelle

Friday, August 4, 2006 9:21 PM CDT

Hello,

Looks like Ben's going to be good to go by Monday. We almost had a little glitch in the plan when we got his lab results back yesterday - they had actually gone down a little, instead of up like I had expected. He wasn't at a good enough number to get his treatment next week. It had me a little concerned that his treatment could be delayed, so we went in again today, just to see if they made any progress, and his counts jumped back up - well beyond what we needed. :) So that is great and we will begin round four with a bang.

Yesterday we went to see a movie in the theater and afterwards the kids had friends come over for a few hours to play. After their friends left, they went on an overnight camping trip with their cousins. Hannah tried her hand at water skiing and got up on her first try!! Go Hannah!!!! Ben was content with hanging out in the areas where he could still be in the water, but also leave two feet planted in the sand. They had a blast and were both verrrrry tired when I got them back. Unfortunately for them, as soon as I picked them up, we had to drive back into town to get Ben’s labs done, so they were shot by the time we actually got home. Tomorrow we’re going to Portage to celebrate Dave’s grandmother’s 96th birthday. She’s an amazing woman. Happy Birthday, Grandma Bernie! We love you!! :)

Next week will be full of trips to Marshfield. It’s so exciting...only three more rounds to go!! Luckily for Hannah, another one of her cousins is going to be visiting the area and they’ll be getting together sometime during the week. They don’t often get to see each other, so she’s excited about it. On top of that, she gets to end her week by going camping for the whole weekend with one of her friends from school. Miss Outdoor is in her glory with all of these wonderful camping and swimming opportunities she’s had this summer. I’m so glad that she’s had a great summer. We all really have - especially considering what we were anticipating.

A very kind gentleman who we met at the Car Cruise earlier this summer, has given us two tickets to go and see a Packers vs. Falcons game on the 19th. The seats are on the 50 yard line and only six rows up! Dave and Ben will have a blast with that one! Thanks Gerry!! On that same day, Hannah and I are helping out at a local campground that will host LeRoy Butler from the Packers. He’s visiting and putting together a mini football camp for the kids. He’s going to be spending the night at the campground and the event is a fund raising effort for breast cancer research. Both events should be much fun for the kids (and Dave!). :) We’re also excited about an upcoming short trip that we planned. We are hoping to go to Chicago to check out the Shedd Aquarium on August 21st. Since Ben's done so well these past months, it's getting a little easier to feel comofortable going a little further away from home. Hopefully it will work out - just have to see where Ben's at when the time comes. Crossing fingers!! :)

I will be back next week sometime with another update - have a fabulous weekend! :) :)

Love,
Michelle

Monday, July 31, 2006 2:51 PM CDT

Hello!

I hope you all had a good weekend. Today is yet another very hot day out, so we are indoors again. For summer, we sure have been spending a lot of time inside!

We did manage to spice things up and go in for more labs this morning. Ooo la la! :) Everything is looking great! Numbers are climbing and it looks like he'll manage to keep on his chemotherapy schedule. To date, we haven't even needed to give him shots to boost his white cells! I don't miss those days. He'll be in for labs one more time this week, and then he'll start the next round of chemotherapy next week Monday, August 7th.

His hair has started to come out again, only quite a bit more easily and in larger amounts than it had a few weeks ago. He got sick of having hair falling on his face so he asked for us to shave it off. He told me, with one hand thrown up in the air, "I'm not walkin' around here with my hair falling out all over this place!" He was happy to have it gone and he looks pretty darn cute with a buzz cut. Don't know how long the short hair will take to come out. Who knows, maybe it won't...he always has defied statistics. Either way, he's more comfortable now.

That about wraps it up. Thanks for checking in on Ben again. We appreciate you all!! :)

Love,
Michelle

Thursday, July 27, 2006 10:00 AM CDT

Good morning!

We went into Stevens Point again this morning for yet another lab draw. He's teetering right around the same numbers since Monday. Some of them are going up slightly and some of them are down slightly. Examples: white blood cells went up to 2.2 from 1.8 - normal is 5.5 and up; hemoglobin is down at 10.4 from 10.5 - normal is 11.5 and up; platelets are up to 115,000 from 64,000 - normal is 150,000 and up; and ANC is back down a bit to 220 from 288 - normal is 1000 and up. Of course there are other variables that make up the ANC, but I won't go any further than I already have. I'm glad his platelets are getting back up there - he should stop bruising up so easily and those dark circles under his eyes look much better than before.

So we should ideally not be doing much in public, so as not to expose him to any more germs than necessary. We should also avoid being around people who aren't feeling well. It's kind of counterproductive when we go into the hospital, full of sick people, to get labs drawn, but I suppose that's unavoidable. I'll stick with not having to draw his labs at home. :) For someone not having any desire to be in the health care industry, we've already had to learn more in-home care than we'd ever care to.

Despite his numbers being low, he is, of course, doing perfectly fine. No signs of slowing down, still able to rev up his sister by torturing her with bugginess, still has the appetite of a horse, still as stubborn as a mule - same Ben that we all know and love.

Hannah had a good time visiting Grandma and Grandpa, as well as her cousins. She was SO tired when she got home that she, herself, suggested she go to bed early. I'm certain she grew again while she was gone, and she's got a tan to envy. I'm glad that she's had opportunities this summer to get out more often than Ben can be out. He doesn't seem to notice that he's been missing out on stuff more recently, which is great too.

Oh, and not-cancer-related-news for Ben...he lost another tooth. He was funny to watch when he went to bed. He carefully placed it under his pillow and when he layed his head down, he barely moved, so that it wouldn't budge. His eyeballs tracked me as I left the room, when normally he'd be squirming around trying to get situated. :)

Well, that's that. Just waiting it out while his body works on recouperating from the latest dose of chemotherapy. We'll be back in for labs on Monday again. If I had to guess, I'd say he's going to be showing much more improvement by then.

Have a great weekend everyone!!

Love, Michelle

Monday, July 24, 2006 2:29 PM CDT

Hello!

Back to the lab this morning. Things are slowly creeping back up - slowly! His ANC went from 144 to 288. His platelets are continuing to decline though, so he's bruising more easily, his eyes look darker and more sunken than when he's healthy, and when he bleeds he doesn't clot up as quickly as he should be. The platelet count is still high enough to avoid having to give him a transfusion though, so that's great news. I'm just going to have to keep him relatively quiet so he doesn't keep adding to his bruise collection! He's still got lots of energy, which makes it hard to avoid those little injuries that come with activiy. I've also been avoiding exposing him to public places and having friends over since his white counts are still sitting low.

Hannah is gone for a few days, so he's had Dave and I to himself. He is loving being an "only child". He's a much different person when it's just the three of us - more cooperative and helpful. Of course, he's spent a large portion of his life having that alone time with us and now that he's kept himself out of the hospital, he has to share us more often. We miss Hannah though, and when things aren't real happenin' with the old folks, he does too. :)

We head back in for another lab draw on Thursday. Here's to hoping for more improvement and that those platelets don't decline any further!! Have a good rest of the week!

Love, Michelle

Thursday, July 20, 2006 1:56 PM CDT

Hello on this fine hot and muggy day in Wisconsin!

Things around here have been good. We've been spending a lot of time indoor because of the hot, hot weather. I'm extra cautious with Ben overdoing it.

Today Hannah, Ben and I went into Stevens Point to get his labs drawn. He is getting pretty low. His white blood cell count is 1.6 (normal is 5.0 - 14.5). His Absolute Neutrophil Count (ANC) is 144. (The ANC is a calculation of his overall lab results and should ideally be 1000 or higher. Even 500 or higher is still reasonable). This is the lowest he's gotten with this treatment plan so far. He's been as low as 0 with other drugs in the past, but has had good luck (until today) with this particular drug. I'm sure this is the result of it accumulating in his system, slowing his body's cell production down. Other than the big dark circles under his eyes and his skin being a little more pale than usual, you wouldn't be able to tell his counts are so low.

Despite not looking or acting ill, we have to be extra careful with him right now, as he can get sick pretty easily. We're crossing our fingers that his white blood cells start to rebuild quickly and he doesn't get a fever or infection before they are ready to fight it off. If he gets a fever, he will very likely be the "lucky" winner of a stay in a luxurious suite at St. Joseph's Children's Hospital. Each room features no restrictions on length of stay, daily maid service at 7 a.m. sharp, fine dining brought directly to your bed every day, a spare sleeping area for your special overnight guests, complimentary lab draws done right at your bedside at 5 a.m. every day, around the clock attention to your every need - including midnight snacks, freshly bleached and starched linens accompanied by scratchy blankets, and the soothing sounds of an IV pump to lure you to the most unrestful sleep you could possibly experience in your life.

So that's where we sit - on eggshells for the moment, but in our own home. And this will pass in time and he will be back on track again. Hopefully I won't have anything to update until his next lab draw, which is due on Monday. It's very likely that by then his body will be showing recovery from this dip, as this should be his "bottoming out" point.

Have a wonderful weekend and I WON'T be back until Monday!! :)

Love, Michelle

Saturday, July 15, 2006 6:11 PM CDT

Hello!

It’s hard to believe, but I can now say that Ben has reached the halfway point in his treatment plan. Yesterday he completed his last day (of five), of his third round of treatments. He’ll be headed back in for his fourth round in mid August. Some days it feels like the time and summer are just flying by. Other days it seems as if they were creeping along at a snail’s pace. Either way, we’ve reached another milestone - only three more rounds to go! That should put us at mid October for a completion date. I’m still (pleasantly) surprised that he hasn’t had ANY unexpected hospital stays due to low counts, fevers, illnesses, etc. Considering we were told to anticipate that could happen frequently, I’m a little baffled at this mysterious boy, who never ceases to amaze me.

Yesterday he had an unexpected wave of nausea when we arrived at the clinic. He was looking pretty pale, but once he rid himself of his breakfast shortly after arriving (thankfully we made it to the room!!) and had anti-nausea meds pumped into his port, he was like a new man. Hannah was with us and they watched a movie, which kept his mind off of his churning tummy. The treatment and the rest of the day were in his favor. He told me, “It’s a good thing I threw up this morning. I got that out of the way and now I don’t have to worry about it for the rest of the day!”

Yesterday was also a bonus day for the kids to be in Marshfield...three Green Bay Packer players came in for a brief “meet and greet” luncheon and to tour of the Pediatrics floor in the hospital. Ben’s appointment got done just in time for us to make it, so they got to meet Bubba Franks, Donald Driver, and Rob Davis. Ben brought his Build-A-Bear puppy dressed up in a Packer uniform and they autographed the helmet. Hannah wore a Packer hat for autographs. They had a good time. We also got to see some of our friends from the hospital, which is always nice to do – especially when we can head to our car, instead of back to a hospital room, after visiting. :)

We were supposed to go to a couple of outdoor events this weekend for oncology families, but decided to stick close to home since it was going to possibly hit 100 degrees today and 97 degrees tomorrow. Yikes! I don’t think it would’ve been a good idea to have Ben out in that kind of heat after a week’s worth of chemotherapy. Instead we are taking it easy in the house.

Thanks for checking in on Ben. Until another time...

Love,
Michelle

Wednesday, July 12, 2006 1:45 PM CDT

So, I just reread my last journal entry. I am embarrassed at my ranting like a spoiled child, and my harsh words toward the hospital staff (especially the appointment coordinators!). I should have taken my own advice and waited until the next day to write an entry. I know I can’t take back my unnecessary and tactless words. It was a rash response to what was simply a bad day and was inappropriate to drag anyone else into it. I’m asking for anyone who I may have offended to please accept my apology.

On that note, back to Ben...the whole point of this page in the first place. He’s doing great. The first afternoon/evening he wasn’t feeling too great, but still hung in there. He began day two feeling sluggish and nauseous, but the afternoon brought a surge of energy and strength that was almost beyond belief. He awoke this morning with the same amount of energy that he went to bed with. Hannah even mentioned that he must be feeling better because he’s just as annoying as he usually is (to her). Dave is taking him to his appointment today, so he was super excited to get a jump on the day to have Dad all to himself. Tomorrow Hannah will join Ben and I, and then Friday is his last day of round three.

Other than keeping busy with summer activities, that’s about it for now. Take care...

Love,
Michelle

Monday, July 10, 2006 9:25 PM CDT

We are now officially beginning Ben’s third round of his 5 day treatments. After this week we are at the halfway point – only 3 more rounds to go. Time sure flies when you’re having fun! (That was sarcasm for those of you who may not know me.)

I should probably just wait until tomorrow to post a journal entry, as I’m very cranky at this moment. But then you wouldn’t get the true sense of where and why this particular day has put my mood. (Ben is fine, by the way – this is just an impatience issue on my part). It’s your lucky day – release time for me! More sarcasm. ;)

I won’t get into every single detail of this frustrating day, but it certainly tested my patience. Did I mention that I have very little of that to begin with?

We started off the day in a good mood, ready for what I thought was a realistic view of how long things could take - even factoring in unexpected extra time. After all, we’ve done this enough times to be realistic, right? Apparently there was a revised and much longer day ahead of us, and I wasn’t mentally prepared for it.

Departure time from our home: 8:30 a.m. Armed with Legos and snacks, we arrived right on time. That in itself is quite an accomplishment, so I figured it had to be a great day. When we got there, Ben was the fourth oncology patient to arrive...all for the same exact time to receive their treatments. I’m not exactly sure who the genius was that decided this scheduling tactic would be a good idea...on a MONDAY! In addition to scheduling four treatments for the same time, they did this on a day that the regular oncology nurses were on vacation, leaving ONE nurse, with the least experience, to try to juggle all four patients and battle two IV pumps that wouldn’t cooperate with her. I felt so bad for her. She was working incredibly hard to keep things afloat and considering what was thrown at her, I commend her for the job she did. I certainly don’t blame her, but did all I could do to contain my frustration with the length of the waiting time in a small box of a room (which should really be a padded room outfitted with at least one straightjacket, in my opinion). Quite frankly, I think I did a heck of a job not completely freaking out. Small spaces plus no control plus long periods of time = crazy mommy. I’ll skip the details and just fast forward to our arrival time back to our home: 4:00 p.m. Enough said.

Despite how long of a day it was, Ben did not even question it. He was so patient. His example was probably what kept me in line. He was pretty tired when all was said and done, and slept for about 45 minutes in the car on the way home. But he didn’t get cranky even once all day. When we got home, he was feeling icky, but after some anti-nausea medication, he was back to his old spunky self. He just asked me for 5 strawberries. Not sure how the number 5 came about, but 5 is what he wanted.

Since the last time I wrote, he’s continued to tolerate his medication well. His counts remain a little on the low side, but very stable with no huge dips. Considering that low counts are the primary side effect of this drug, Ben is again doing the opposite of what anyone or any studies would expect him to do. This time, for once, the opposite is actually working in his favor. We’ll take it! He has begun to shed some of his hair, but it seems to be just thinning more than anything. If he pulls on it, some will come out, and I find it in his baseball caps and on pillow cases; but it’s not coming out as quickly as it has in the past. Lucky for him, it’s thinning very evenly too. Again, we’ll take it! His energy level is usually a little slower the first couple of days after treatments and he does get some nausea, but then after that he acts like he’s smuggled Mountain Dew on the sly and hides it in his veins for the rest of the time. Amazing little man! I just asked him if he was tired and he said, “Of course not! I’ve been sitting all day!” How is it that I feel like my energy has been completely sucked dry and he’s ready to run a marathon? And he’s the one with poison sitting in his little body! I’m just the chauffeur and entertainment coordinator. I don’t know...he’s admirable, that’s about all I can take from it.

I guess that sums up what’s new here. I know, it’s a long one, but I guess I needed to write it all out so that I could settle down a little, perhaps sleep better and begin tomorrow with a better attitude and perspective.

Life is an amazingly unruly ride. If you don’t just grab on and go with it, you’re going to struggle. Most days I struggle. Today was not an exception. I’m hoping that I can learn the ‘grab on and go with it’ concept and call that most of my days.

Thank you all for your amazing patience, love, care and just listening when I let off some steam. This certainly isn’t as bad of a situation as I am making it, but it’s what it is sitting in my heart at the moment, and that can’t be discredited if I’m going to move forward in this process some call a journey.

Being the quote queen that I am, I will end with a quote (and our Green Bay Packer fans will appreciate this too)...

“It's not whether you get knocked down; it's whether you get up.”
~Vince Lombardi

Please pray for a “get up” kind of day tomorrow!!

Love to all of our friends and family,

Michelle

Thursday, June 29, 2006 2:01 PM CDT

Hello everyone!

Hannah and I took Ben into labs again this morning and things are still looking about the same as last time, just a bit lower. Nothing dramatic, but something to keep an eye on. Still looking at July 10-14th as his next trip to chemoland. That week will be three treatments down, and then only three more rounds to go! So far we've had such great luck with him tolerating this new drug that I'm starting to feel a little more at ease that this summer will not be as tied down as I had expected. Horray! (I just knocked on wood)

Nothing else here other than the usual summer stuff. Keeping busy doing fun things, getting out much more often that I anticipated, spending time outside. Yesterday they were running around in the sprinkler - remember those wonderful days? A yard, swim suits, a sprinkler and freezing cold water...what else could a kid need? Oh, pink lemonade too of course. :)

I'll be back...in the meantime, enjoy summer!

Love,
Michelle

**new pictures**

Monday, June 26, 2006 2:24 PM CDT

Good afternoon on this gloomy, but nice day in Wisconsin!

I took Ben in for his bi-weekly lab draw in Stevens Point and he's still hanging in there. His counts have dropped again. He's lower than what the average person should be at, but still hasn't really taken a huge dive that would require any transfusions or hospital stays. Whew - we got away with it again! Looks like this summer is going to be a breeze if he keeps up this trend. :) We'll see what he looks like by Friday and hopefully he'll be on the upward trend.

Not much new has changed since I last wrote. The kids are at a friend's house playing right now. They were so excited to go to another person's house for a change. Having friends over here is fun, but it's even more cool to go over to a friend's house. New toys, new environment, new Mom in charge (I think that's the key!) :)

Hope you all are enjoying getting outside in the summer weather. Thanks for popping in!

Love,
Michelle

Thursday, June 22, 2006 4:00 PM CDT

All is still well here. I was concerned that Ben was going to have a rougher week than he did. But I was once again taught the lesson to try not to predict ahead of time what his body is going to do; which I have yet to learn after 6 years! Geez, you'd think I could just let my guard down once in awhile and chill out!

He had his labs drawn again this morning and they are still holding their own. A little on the lower side than the average person, but really, he's in very good shape. Since we were already out and about we decided to go and see the movie "Cars". The kids really enjoyed that. Actually, I did too. :)

He's continued to play tee ball and most often has tons of energy. Sometimes you can tell when he's slowing down, but it's not that often. Tomorrow is another game. Hannah's team has been doing awesome! They are playing so well as a team and have great coaches who stress the importance of team work, good sportsmanship, learning the rules and really working on their individual skills. Of course, the big lesson is that it's about having fun, not winning...BUT, the proud mom in me can't resist bragging that they are winning a lot. :) Thankfully they have a very short season and will be done by the 4th of July. We enjoy it a lot, but it's so nice to have some summer left to do other things.

As always, thanks for stopping by to check in on Ben. He's doing great - actually pretty darn amazing when you really think about what's being put into his body. I find myself shaking my head in amazement (and confusion) on a daily basis just watching him.

Enjoy the weekend!!

Love, Michelle

Monday, June 19, 2006 10:07 PM CDT

Hi!

Happy belated Father's Day to all of you great dads out there! We had a mellow and relaxing day - it was realllllly nice after a long week of running around from activity to activity.

Well, from Friday to today, Ben's counts are beginning to show us a bit of a dip already. I have a gut feeling that this could be a rougher week for him (concerning his counts), but hopefully I'm wrong on that prediction. He's certainly fooled me in the past! He's been quite active and busy and seems to have more energy than he usually has. It's almost as if this drug they are giving him is an energy drink - just put straight into his port. I did notice some slowing down this afternoon, but he perked right back up after a long nap. Appetite is still good, very little nausea, if anything at all at this point, and good spirits (sometimes more on the spunky, a.k.a. naughty, side). :) He even asked Hannah if they could be friends for the day.

Speaking of Hannah, she had an awesome time at camp and spent a good deal of time with the horses. I'm sure she grew again while she was gone, because she looks so old! I haven't officially measured myself up to her (denial on my part), but I think that she may have caught up to or maybe even surpassed me in height! I even bought "us" a pair of sandals today...she's wearing my size shoe and she's only 10 years old! What's up with that??

Since Ben's counts are beginning their decline already, I took them on an outing today of little fun things. They had a good time and most of it was outside, so we didn't have to be overly concerned with the whole germ thing. But we used up a good portion of our hand sanitizer - I'm not THAT relaxed. We are scheduled to have his labs done locally again on Thursday. We are hoping that he doesn't get sick in the meantime. I'll be keeping a closer eye on him and getting more paranoid as each day passes, so just bear with me! I was going to take them on a quick overnight trip to see my parents this week, but I decided that was a little past my comfort zone to be almost four hours away from Marshfield this week.

Ben's such a funny character. He and Hannah were arguing over a specific lego piece, as if the gazillion pieces they had sitting next to them wouldn't be good enough. Hannah told him that he wasn't doing a very good job "solving the conflict". His retort was, "I'll take the lego. There...conflict solved!". This wasn't a solution that sat well with Hannah, so of course a fight ensued. Oh my, this could be a long summer. :)

That's really all that I know until Thursday (and hopefully not sooner). I think we'll taper off public contact in the next couple of days until we know which direction his counts are going to head. On the selfish side, Dave and I have a nice overnight alone scheduled over the weekend, so I'm really hoping that he can hang in there. Of course his health always comes first, so please don't misinterpret that comment.

Love to all out there and thanks for keeping in touch. If you haven't signed in...let us know you have been here!

Michelle

Thursday, June 15, 2006 8:22 PM CDT

Hello!

So far, so good, and almost 2 rounds done. Only one episode of throwing up and a few smaller signs of side effects (easily fatigued, dark circles under his eyes, some brief nausea and appetite loss, and some achey joints), but overall, it looks (outwardly) that he's tolerating everyting fine. I can see a difference in him - but not much that others can detect by just looking at him.

This week hasn't been the most fun for summer days, but I will admit it does beat going into the hospital for inpatient stays. Hannah's been gone all week at camp, so we haven't had to juggle what to do with her during this chemo week. That's been nice. She's having a blast and I'm not feeling guilty about sending her to camp because she doesn't want to come with us to Ben's appointments.

So, after this week, he'll be getting his labs locally (Stevens Point) twice a week. If he seems to be okay after 2 weeks off, then the doctor will consider doing another round then. But he's assuming, based on how Ben reacted last time, that he'll be on one week of chemotherapy, and then off three weeks instead. Only time will tell. Ben's never really fit the bill of predicitablitiy.

This week he has done so well - still plugging away at tee ball and being a kid. I'm proud to see that he doesn't let much get in his way. He still has a good head full of hair...and it may just stay that way. Every day he pulls on it to check and see if it's coming out, but nothing
comes out. I think after being bald so often in his lifetime, that he'd prefer to just be bald and not have to deal with that silly hair stuff. :) I realize that it's only week 2, but I've heard that hair loss is not a common issue with this particular medication. The primary side effect is more of a problem with making his immune system compromised. Which leads us to the daily mind battle of trying to determine if certain activities that we'd like to participate it are appropriate for him.

I realize that some day this will end, again, but for now, I have to admit that I could use more energy for this. I also am keenly aware that things could be much worse. To be honest, I really don't need to hear that, as I'm so aware of it already. Hopefully this won't be taken in offense, but please don't remind me that this could be worse than it is. Unfortunately that's not a helpful thing at the moment. Sorry to be so forward, but it is what it is at the moment.

So, I guess I should sign off as, he's doing pretty good with this new regimen, but we'll know more as the next couple of weeks go by since immediate reactions aren't always common.

Thanks for your care and concerns.

Love,
Michelle

Monday, June 12, 2006 8:05 PM CDT

Hi!

Well, we made it in for Ben’s second round of chemotherapy finally. It was kind of a close call with his counts. They certainly aren’t terrible, but they were low enough for us to have to hold our breath for a short bit to get word on whether or not he’d be able to get it done. But we weren't sent home, we have one day down, and four more to go! They increased his dose from 50% to 75% of what was originally recommended. Gradually they’ll increase it to the 100%. Rather than hit him hard, they wanted to ease him into it. Based on how he reacted to his first dose, it appears that Ben’s bone marrow is sluggish to recuperate from his treatments (probably from all of the past chemotherapy he’s had), so he’ll more likely be on a monthly schedule, rather than the original 3 week plan. It seemed to take him longer for his counts to go down, and longer for them to get back up to a normal range. And even his normal range isn’t that normal.

We left the house around 8:30 a.m., arrived in the second place we call home, Marshfield, around 9:45 a.m. We left the clinic around 2:30 p.m. and went for a visit to our friend who lives there, until 4:30. So we didn’t actually make it home until just before 6 p.m. It was a pretty long day and I know that I’m tired. I can only imagine how he must feel with having all of that poison inside of his body to top it off. When we got in the car to head for home, he complained that his stomach hurt and he felt like he was going to throw up. But shortly thereafter, he fell asleep and continued to sleep until we arrived at our doorstep.

Since then he seems to be okay. If I were to guess, we’ll start seeing some fatigue and slowing down tomorrow, but who in the world knows, when it comes to Ben?! He’s definitely one of a kind – keeps us on our toes guessing what will come next. I think that’s the trickiest and hardest part for me personally sometimes...just not knowing when and where I can take him places, or let him participate in activities, since he so often appears to be doing well; when sometimes on the inside he’s not doing so well.

There were at least 3 other Oncology patients there at the same time, so things were running slower than usual today. We were there for an extra 1 ½ hours than normal. Not a big deal – he did great up until the last half hour, when the “I’m bored”s started to flood the room. Thankfully he got to utilize the “big room”...that’s an extra big and cozy room for patients that have longer stays – has a television/vcr, video games, books, a comfy chair, music, toys, etc. to keep the patients occupied. And it’s like a mansion in comparison to the tiny and sterile looking exam rooms. He almost had to arm wrestle a 16 year old boy for it, but Ben’s cuteness got him the room. It pays to have a big dimple on your cheek. :)

So it looks like we will continue to forge on for the rest of the week travelling to and from Marshfield. Then we'll follow up in Stevens Point with lab work twice a week, to keep tabs on what’s going on inside, what appears to be, our sturdy 7 year old boy. If he is feeling well, he has two tee ball games this week (if he decides he’s up for them). We’re planning to try more chemotherapy from July 10-14, but if he’s ready to go earlier, we’ll push it up a week. It seems like there are a lot of “ifs”. I don’t like “ifs”. But I am glad to be on an outpatient basis; not having to pack and being able to sleep in the comfort our own home.

Hannah’s at camp this whole week. I dropped her off on Saturday. I actually cried a little. Being the not-often-a-crier, it was odd for me. But she’s having a BLAST. I’m able to view pics on the camp’s website and she’s got a beautiful smile in them. Brad, my brother, coordinates the retreats and campers (among the many other duties he has!), so he’s able to give me the inside scoop on how she’s doing. Let’s just say she’s having no problems fitting in and probably hasn’t stopped talking since the minute I left. She must have gotten her love for chatter from her father. HA! :)

So that’s that! Not much, but apparently enough for me to write this lengthy entry. Okay, so it IS me that Hannah got her love for chatter from...I’ll admit it! Not only will I admit it, I will embrace it! :) My teachers in school never really embraced it (right, Mom?), but I will.

As always, we hope everything is well in your worlds. We always love to hear from you, so please leave a message if you drop in. As our friend Chris would often say, stop lurking and write a note! :)

Thanks for checking in on Ben!

Love you all very much,
Michelle

Monday, June 5, 2006 7:27 PM CDT

Good evening,

Well, today didn't quite go as planned, but I'm not really sure when that actually does anymore. Let me start off with an apology for a fairly rotten attitude in this entry. I'm just tired and a bit frustrated.

We burned 5 hours today (with travel time) to find out that Ben's counts were too low for him to receive his treatment. It's now delayed until next week Monday-Friday. I felt so bad for the kids, considering this was their first official day of summer vacation. Bummer.

He's fine. Just really tired. He actually fell asleep in the clinic while we were waiting for the results of his labwork to come back.

He's supposed to be able to continue with all normal activity, including tee ball, as long as he's got the energy. We just have to keep a close eye on him and be ready for a possible hospitalization if he develops a fever or infection. Basically, even though the doctor says we can go anywhere without being too concerned, I will still be in worry mode and will probably not be out and about with him much. I'm hoping that he's on the rebound, rather than continuing to crash. I think he's rebounding though.

Next Monday, if his counts are back at an appropriate level, he'll get his next five day course and it will be increased from the 50% dose he had last time to 75%. We should expect to see more symptoms as the dosage increases. I'm going to have to let go of the idea that we are going to have many planned adventures this summer and try to learn how to be more spontaneous and flexible. This is not in my nature. You would think that after all of these years, I would have adjusted better, but I always have been pretty stubborn in my ways (stop nodding your head, Dad!). :)

Thanks for keeping tabs on Ben. Things are fine.

Love, Michelle

Tuesday, May 30, 2006 1:46 PM CDT

Hello!

It’s been awhile since I’ve updated because there really hasn’t been much to update concerning Ben’s health. Yea for that!!

He has been tolerating his first dose of chemotherapy very well. He’s had days where he’s been very tired, his joints have ached and he’s been a little nauseated, but overall, one wouldn’t notice much of a change in him. In fact, the last day of his first round of chemo, he still wanted to go to tee ball practice. He wasn’t as ambitious, but he gave it his best.

His counts have stayed fairly stable, although they did go down just a bit. Not enough for him to need to be hospitalized or require a blood transfusion; and he never developed a fever either. So we’ve managed to remain out of the hospital since his first round. He’s one tough kid and we’re one lucky family! He got to go on his school field trip and even managed to squeeze in a couple of days in the “Northwoods” visiting family.

He and I have been going to the hospital in Stevens Point to have his labs drawn. We started out going 3 days the first week after chemotherapy, but this week will only be two days. It’s unfortunate that they aren’t able to administer his chemotherapy there, as it would be an hour less of driving all five days, but we’re grateful that they are willing to draw his labs from his port there, even though they are an adult Oncology department. They do seem to love seeing him when we do have labs done.

His next round is scheduled to be given via IV on an outpatient basis, from June 5 – June 9th. The doctor started him off on half of the recommended dose to be sure he could tolerate this new medication; so it will be increased during this upcoming round. We may see more side effects due to this, but who knows. He continues to baffle me and I just never know what his amazing little body will do next.

Other than that, life has been crazy and interesting with fun tossed into the mix. We’ve been doing so many school related end-of-the-year things (field trips, class projects, etc.), started softball for Hannah and coach pitch/tee ball for Ben, have had Mike and a friend back for a visit, our friends put on a wonderful benefit for Ben and our family which will help us out significantly to get some of our hospital bills cleared up (THANK YOU EVERY ONE!!!!), I was able to run a 5K with a friend benefiting the American Cancer Society, my mom had a full knee replacement done, and list goes on. Ahhh, the end of the school year always brings chaos, but it’s a good kind of chaos. Today brings an “End of the Year First Grade Picnic”, which Dave is joining Ben in. Throw in a couple of ball games and then the last day of school is this Friday!

I suppose that about covers everything in our world. We hope that this entry finds you all well and enjoying the change of seasons.

Love,
Michelle

Thursday, May 18, 2006 9:27 PM CDT

Hello!

Things here are going very good. Ben's first outpatient appointment today went great. He seems to tolerate this medicine like it's a glass of water. Maybe he's a little more tired than usual, but with anti-nausea meds, his appetite isn't changing dramatically. He was able to go to school until 1:30 p.m. and then we headed off for his appointment. The appointment took a little over two hours when all was said and done.

Tomorrow he will have some lab work done before his chemo treatment, so that will make it a three hour appointment. Grandma Lansing has offered to take him...and I'm taking her up on that offer! I don't think I've ever done that before - maybe Dave took him a handful of times, but I'm feeling a little withdrawl and guilt for making that decision. Don't get me wrong...I totally trust Grandma! Who better to send along than an R.N.? :) But overall, I think it will be a good decision for both of us - we've been spending WAY too much extra time together. :) I'm sure the doctor won't miss the gazillion questions I always have for him.

Hannah had softball practice tonight and we got back just in time to see the last half hour or so of it. That was the first one I've been able to watch, so it was great. I think she did terrific. Ben has his first practice tomorrow night. He missed his team's first one since he was in the hospital, and we'll only be able to catch the last half hour of tomorrow's, but at least he'll be able to join his buddies for a bit. He's really looking forward to the season. I hope that he can make it to most of the games.

That's about all I have I guess. He's well, Hannah's well, Dave's well, and I'm...well, hangin' in there. :)

Crossing my fingers that those counts don't drop dramatically, causing him to lose out on going on his upcoming field trip next week. I have to constantly remind myself to stop thinking that far ahead...baby steps!

Love,
Michelle

Wednesday, May 17, 2006 2:42 PM CDT

Hi everyone,

Everything's still going great here. Plan is to still leave today after chemo is given - should be out of the hospital and driving home by 5 p.m. Tomorrow and Friday will bring us outpatient treatments, back here in Marshfield - last two treatments for this round. Then we wait it out for a couple of weeks and see what his body has to say about the invasion. Hopefully the white cells and chemo will kick some serious cancer cells' butts.

More later...want to get back to the room.

Love,
Michelle

Tuesday, May 16, 2006 10:38 AM CDT

Things are going great here. In fact, since he's not really having too much of a reaction, especially an allergic reaction to the drug, they are going to let us come home TOMORROW and then just drive here for outpatient therapy on Thursday and Friday! Ben's very happy about that.

He woke this morning with a good appetite, but was sensative to strong smells, like bacon and eggs. He ate a bunch of Rice Crispies and isn't feeling sick at all. He slept the whole night through and we're now sitting in the Teen Lounge while he writes more thank you notes as I type. We tried to do an art project, but were not successful - a little too advanced I think.

The doctor has decided to start out with just 50% of the recommended doseage of chemotherapy to see how Ben tolerates it. It filters right through the kidney, so he doesn't want to hit it too hard. Once we see how Ben's bone marrow reacts, he'll be able to decide if the dosage needs adjusting.

I'm so happy that he's reacting so well to this therapy. He's such a trooper. And, as a bonus, I will be able to see Hannah's next softball practice on Thursday (providing it's not raining!!).

After this week, we'll go into Stevens Point 2 times a week for labs to see how his counts react. We expect for them to drop 7-10 days after his first day of chemotherapy dose given. He should "bottom out" and then we'll see how quickly his body is able to rebound from that. Everything is up in the air during this first round because of how much chemotherapy he's gotten in the past.

So, all in all, everything is going terrific!

Thanks for keeping us in your thoughts!

Love,
Michelle

Tuesday, May 16, 2006 12:22 AM CDT

Hello!

We had a pretty busy day. Ben was ready to dive into everything he could get his hands on - group time activities, volunteer time, playing games with me, building a rockin' race track out of blocks with me, writing thank you notes (okay, not his idea, but we had to make a dent somehow!), etc. He ate a great lunch and dinner. Chemo was given around 4:00 p.m. Things gradually went downhill from there. Nothing too dramatic...just complaints about aching, his tummy hurting, maybe needing to vomit, no longer hungry, having a headache, and slowing down significantly. I'm assuming that would be the chemo kicking in, but I don't know how fast that affects you. I'll be very interested in seeing how he feels when he wakes up in the morning.

He was really tired by the end of the day. And very snuggly. Asking me to snuggle is one of his ways of telling me he's not feeling too great. I wish I had his bed - it's much nicer than my version of what is supposed to be a sleeping space for an adult sized person. But he's gotten too big for us to share it comfortably anymore. I had to get out because I was taking up way too much of his sleeping space. :(

I'm going to go back to the room now and stretch out in my giant "bed" (imagine being a flat board, lying on its side). A nap is definitely in the works for tomorrow - I'll just let Ben have at it with his Game Boy and let me steal his bed for a bit.

Good night (morning) everyone!

Love, Michelle

Oh, and a reminder...or hint...or whatever you'd like to call it. Any and all visitors are welcome. :) Or emails, or guestbook entries, or phone calls...what's going on outside of room 357??

Monday, May 15, 2006 12:40 AM CDT

Hi!
We've arrived, just gotten into the room (357) and I'm just quick stopping at a kiosk on my way back in from getting the rest of the luggage. Better go and get back to Ben.
More later... Michelle

Tuesday, May 9, 2006 8:04 PM CDT

Wednesday, May 10...quick addition FYI: I FINALLY figured out how to play around with my Sole Burner web page. If you want to take a peek, click on http://www.active.com/donate/soleburner/Mlansin2

*******************************

Hello again!!

It was a great day to spend in Marshfield – very rainy and icky out. We didn’t feel like we were missing out on yet another beautiful day.

So, after today’s appointment, here’s what we know...sort of anyway:

Ben’s stent will be removed on this upcoming Friday. A simple outpatient procedure. Much to his dismay, he still has limited restrictions until then. I often catch him trying to kick a ball (hard soccer style), run, and jump and do other things he’s not supposed to be doing, so his restrictions are basically mute anyway. He’s a seven year old boy...what can I do?! His feet just take off on him and all he can do is follow them. :)

After his stent is gone on Friday, his restrictions are lifted. Yes! He will then begin his first round of chemotherapy the next Monday (May 15th). That will be one day before his six year “anniversary” of first finding out he had cancer. It’s hard to believe that six years have passed already. He was just a little 16 month old baby then! The ages/stages he has been through during these four trials have been very interesting to watch – what an amazing amount of growth, courage and acceptance on his part. As for me, I can’t really say I’m with him there.

On Monday, he will be treated on an inpatient basis for five days, so that they can evaluate him and see how he does on this particular drug. It’s normally done on an outpatient basis, because it’s just infused over a 30 minute period of time through an IV in his port, and then he’s done with the treatment for that day. But for that first round, they are going to keep him close by. I’m more comfortable with that anyway. If all goes well after that, we’ll have to drive back and forth to Marshfield for five days, every 2-4 weeks to get his treatments. I’m so grateful that summer is almost here and that he will not be missing any more school! If he’s able to stay on course (the original every two week plan), he could possibly be finished just before school starts. Okay, that was a VERY optimistic statement on my part, but it’s possible.

So...after his first treatment, we will attempt to try another treatment again after two weeks. Everything will depend on how well his bone marrow can handle things – his blood counts are likely to take a pretty good dive because of all that he’s already had in the past. We can’t continue with any chemotherapy until his blood counts are at appropriate levels. During the low level times, we will have to be careful about where we are able to take him and what we can expose him to. During the waiting period between treatments, we’ll have his blood drawn at our local hospital twice a week to keep an eye on his numbers. Despite the circumstances, I would guess that the Stevens Point Oncology Department will enjoy seeing him again – they always treated him so well, considering they normally only treat adults; so to do lab draws on a pediatric patient is like having a puppy in the house!

Our Oncologist is thinking it’s likely that he will have to wait 3-4 weeks in between treatments if he doesn’t tolerate it well and his counts become a problem. In between treatments, if he develops a fever, he will immediately be admitted into the hospital for blood and urine cultures until they can rule out any infections. Those visits can vary from 2-7 days (or more, but not usually), depending on what’s going on with his body. Of course, these visits will all be spontaneous (usually around midnight on a Saturday night) :), so we will have to brace ourselves for another spontaneous summer. There could be no extra hospital visits at all, or there could be numerous – it’s all up in the air, but it’s also all doable- nothing we haven’t managed before.

The initial goal would be to see if Ben’s body is capable of receiving six, five-day treatments altogether, but we are going to listen to his body and stop when it says it’s done.

So...I think that covers everything I know right now. Stent out on Friday (outpatient), chemo starts on Monday (inpatient for one round) and the rest of the summer/early fall is like a giant free-for-all. I was checking out our calendar, and thankfully, we only have two things on the scheduled for the WHOLE summer. I’ve been saying no to a lot of things. That’s how it’s going to have to be. We’ll certainly do our best to have some awesome adventures, but planning events ahead of time would be foolish. I hope our good family and friends are up for some last minute visits. :)

Overall, things aren’t looking too bleak. His kidney is still acting as if it’s Mr. Incredible. He, of course and as usual, doesn’t appear to be ill in any way, shape, or form. His lung has fully recovered from its scare tactic to test us just a bit further. He’s just an amazing and strong kid. Sturdy as a rock – just like Dad. I don’t how else to describe him – even though he has enough spunk and sass to make me crazy, he’s my little hero.

I have decided to give the Sole Burner 5K run (an event supporting the American Cancer Society) a shot this Saturday, even though I haven’t been doing the best at taking care of myself and training often enough. I had been considering dropping out of it after his diagnosis started draining on me, but I really want to do it. If you want more info about the event, go to http://www.soleburner.org/about.html or to go to the team donation page I joined, go to http://www.active.com/donate/soleburner/MHoran. I’m running with a team called ‘ClownPhish’, in memory of our dear friend Chris and her friend. I’m of course, also running in honor of Ben, Grandma Julie and in memory of our close friend, Dick, along with all of our other little friends who have had or are fighting against this icky disease. Last year, during and despite her painful illness, our determined friend, Chris, walked the entire 5K – I think I can push my healthy(ish) body for 3.2 miles after what she did last year. Her mom just sent me a nice article about the event – if you are interested in reading it, go to http://www.postcrescent.com/apps/pbcs.dll/article?AID=/20060509/APC04/605090590/1890

A HUGE thank you goes out to each and every one of you who has reached out to help us out in one way or another. We can’t possibly tell you how much it means to us to have the amazing support that we do. We love you all, and hope that in some way, shape or form, we can be there for you when you need it, or pay if forward to someone else in some way!

Enough from me. It’s been a long day and I’m ready for bed.

Lots of love to all,

Michelle

Wednesday, May 3, 2006 6:23 PM CDT

Hooray, Horrah! We are once again in the comfort of our own home.

We were released today around 2:30 p.m., but Ben wasn't ready to go home - Hospital Bingo hadn't started yet. I'm sorry if it makes me a bad mom by not hanging around waiting for that grand event, but I figured he's going to have plenty more Hospital Bingo days ahead of him, so I made the administrative decision to GO HOME. He still managed to score big time with the volunteer clown that just happened to be there right before they were getting our release forms ready, so that helped. She's awesome - performs magic and hands out all sorts of fun and cheerful toys. Today he got "farting putty" (this was the favorite - imagine that!), a happy face cup, a plastic snake, a magic wand and two small games. Way more than Hospital Bingo would have produced. We need a bigger house.

As for what he had...no one is really sure, but it appears it was just a simple viral infection. The blood and urine cultures both came back negative, without any bacterial growth (they were surprised at that). He also had an ultra sound this morning and it showed a little bit of fluid build up, but it was exactly what they would expect after a surgical procedure, so there was nothing out of the ordinary there. The stent also was well placed and looked fine too. So the only thing they could really guess was that this was a viral infection. They took him off antibiotics and sent us along our merry way. Pretty expensive virus!

The doctor did assure me that this wasn't a "wasted" trip. Since Ben only has a partial kidney remaining and his fever was so close to his surgery, they could not let him go until they were absolutely certain all of his bases were covered, or he could have wound up very sick. Then we would have been in a much more difficult situation. It's such a hard call to make - it has to be treated as a serious illness until that can be ruled out. It makes it so taxing on us, because all we can do is worry until we know what's going on...and that doesn't usually happen until 2-3 days of tests. When it turns out to be just a simple virus that would have likely cured itself at home, and saved us 3 days from the hospital, it's frustrating (not that I want him sick!). But we have to really focus on the fact that we are not in the position of determining what can be life threatening vs. just a day off of school.

He was having a great time playing a video game with another patient just before we left. He's been more aware of the different types of illnesses that are surrounding him. It's interesting to watch him absorb it all and periodically ask questions.

I suppose this was a good experience in the sense that it gave us a chance to give our unexpected hospital visits a trial run. We're getting much better at packing lighter and quicker. With his upcoming chemotherapy treatments, we're expected to anticipate these unexpected visits on a regular basis, assuming he reacts in typical fashion to this particular drug, which causes low blood counts and fevers - requiring inpatient care.

Anyway, I guess we'll just have to see what happens and take it day to day. Not an easy task for a planner like myself, but hopefully I can adjust.

Thanks for checking in on Ben. His next appointment is a follow up with the surgeon on May 9th, as well as getting his chemotherapy schedule coordinated, and having some labs done. Hopefully I won't have to make any more entries until then!! :)

Love,
Michelle

Tuesday, May 2, 2006 8:43 PM CDT

Another day in Marshfield, another day with not many new answers, another day of waiting for some kind of direction. We've seen many different doctors, nurses, residents, students...all with a variety of opinions. The primary opinion seems to be that it's just a urinary tract infection or just a simple virus. He's still being treated with an antibiotic in case it is bacterial, but they've changed the type of antibiotic. He has been without fever since midnight last night, so if we can get through tonight without a fever, that would be one hurdle we've gotten over to be allowed to be released. The other is waiting for urine and blood cultures to come back, which will likely be tomorrow morning. That should give us our answer and hopefully send us on our way. If the urine culture comes back with bacterial growth, then they may consider giving an IV antibiotic here at the hospital for awhile first to see if it solves the problem, then release us with oral meds. I've gotten answers about when we are going home ranging from tomorrow to Friday, so I really am not sure what to say about when we're coming home. Tomorrow morning he's going to be having an ultrasound done so they can see if there are any pockets of infection showing on the kidney, and also to check out the stent. Hoping that might give us even more insight, but it's kind of a shot in the dark.

Ben is completely and totally his normal self now. We've spent the day wandering about the hospital, playing games, doing homework, reading, watching a little telelvision. The only time he spent in bed was when we watched a movie together, otherwise he was ready to hit the hospital pavement as soon as that was done. By just looking at him and how completely healthy and vibrant he looks, it seems really stupid to be sitting here. But I have to remember that his outward appearance doesn't mean something's not acting up inside and the doctors know what's best for him. That's always been the odd thing with him - he almost never looks sickly. Only a small handful of times, when the chemotherapy took a toll on him, has he looked like a child with a serious illness. It's so deceptive.

Dad and Hannah came for a brief visit tonight. Hannah treated me to dinner in the cafeteria (with a little "help" from Grandma) :), so that was sweet. Ben says he doesn't want to leave until at least tomorrow because it's Hospital Bingo day and he's got his eye on a specific prize.

That's it for news. I'm pretty skilled at making no news rather wordy. :)

Love to you all!
Michelle

Tuesday, May 2, 2006 0:57 AM CDT

And so the journey continues. Just a little sooner than I had anticipated, but maybe this is a warm up for what's to come.

If you can't tell by my beginning, Ben's back in the slammer. He came home from his first day of being back at school on Monday complaining of a headache and his legs hurting. I took his temp - 102.1. Uh oh. A call into his doctor had us driving to the Marshfield ER at 6:00 p.m. After spending four hours in the ER getting labs and repeating his history to countless doctors, they decided to admit him. His U/A indicated that he may have a urinary tract infection (ignore poor spelling). They've also taken blood for cultures, so we'll see if any other kind of bacteria is lurking around inside his body. For now he's on a general antibiotic and fluids. They're pretty certain it's not just a virus that he caught. He's completely out right now - it's been a long day for him.

His fever has been pretty persistent, running anywhere from 100 to over 103. We can't leave the hospital until he's free from fever for 24 hours, so I have no clue how long we'll be here. Hopefully not too long. And hopefully we'll find the source of this infection quickly and be able to treat it even quicker.

In the meantime, he's in room 360, so feel free to call if you'd like. I'll post the number on his main page.

I'll update later after I try to get some sleep and find some more answers.

Love,
Michelle

Sunday, April 30, 2006 9:08 AM CDT

Good Morning!

It's a very rainy and gloomy day today - good to see rain again after it being so dry for so long. It feels so good to be able to look out MY window to check the weather.

Things have been going well with Ben's recovery. He's having a bit of a problem with his restricition to low key activities. He's just itching to run and sometimes those feet of his just take off on him before he can stop them. :) He's pretty good at limiting himself based on how his tummy feels, but if he could have it his way, he'd be playing tag, shooting baskets and playing baseball. Sneezing and coughing are not fun things for him at the moment, nor is getting up from sitting on the floor. But once he's up, he seems good to go.

He's due to go back in about two weeks for a check up with his doctor who did the surgery and to get those restrictions lifted so he can have at it. At that point we'll also be meeting with his Oncologist to set up a chemotherapy schedule. Still trying to sort that out a little. We have a basic idea of the plan...5 days of outpatient (yes!) chemotherapy on, two weeks off; then repeated. How many times it'll be repeated is one of the things we don't know yet. If I would have to guess, I'd say they'll set a goal as to how many doses he should get and then we'll just watch Ben's reaction and ultimately leave it up to his body, like we did last time. Hopefully he can tolerate more of this stuff, but who knows! He's certainly had enough so no one is really sure how he'll react to introducing more into his little body. Time will tell.

The main side effect of this particular drug is to cause his blood counts to drop and to compromise his immune system, so it's likely we will spend some additional time in the hospital for low counts, which may make it difficult to stick with the plan of being on for five days and off for 2 weeks. Should be an interesting summer. Those counts can drop on him so quickly and it seems like they often do it when we decide to get brave and venture away from home to try to have some fun. I'm still determined to have some summer adventures though, so hoping that he doesn't have that particular side effect often.

Hannah's doing great. She's happy to have everyone back and things back to normal again. They've even had one fight already, so things are falling right back into place. :)

Dave and I are doing fine adjusting back into a routine. It's just good to be back home and to sleep in our own bed. Sleeping has been a regular part of my daily agenda. Making up for lost time I guess!

Okay, better go...Ben wants to get on the computer to play some games on Hotwheels.com.

Until later...

Love, Michelle

Thursday, April 27, 2006 8:45 AM CDT

GOING HOME TODAY!!!

I'm just waiting on one more doctor to stop in, need to sign some release forms and get our things packed into the truck. In the meantime, Ben's eating breakfast and visiting with Grandma. I was packing our things up around midnight last night. Think I'm ready to hit the road? :)

Hopefully we'll be leaving in an hour or so. Yea!!

The first thing he said when he got out of bed this morning was "Today is the big day, Mom!".

I plan to take a giant nap when we get home. He plans to play with all of his toys. I would venture to say Grandma plans a nap as well. :)

Thanks for ALL of the support, encouragement, emails, cards, gifts, prayers, thoughts...the list goes on and on. We appreciate what each and every one of you have done to keep us going.

Love,
Michelle

Wednesday, April 26, 2006 1:32 PM CDT

Hi again!

Ben's surgery went well and quickly this morning. He only has one IV tube left - hooray! They are going to observe him today and will probably be released tomorrow morning. He's antsy to get home...as am I! :)

Later!
Michelle

Wednesday, April 26, 2006 3:13 AM CDT

Good (very early) morning!

Another good day of progress had been had. Ben's making great strides and getting more and more tubes and bells and whistles and contraptions removed from his IV pole.

In about 4 hours they'll be taking him back to the operating room for his quick little procedure and he will also then be free of one more significant item...the dreaded Foley cath. He keeps saying how excited he is about ditching that. There's a possibility that if he does well tomorrow morning and has no adverse reactions, we could be released as early as tomorrow afternoon!!!! Otherwise Thursday will be the magical day. I've commanded all of his organs to behave themselves.

He's now completely off of Morphine and only on Tylenol 3 tablets as needed. He hasn't really needed many of those so far. He seems reasonably comfortable, aside from when he has to get himself out of his bed. I can only imagine how painful that huge incision must feel - ugh!

The best news is that his pathology report indicated that his tumor was of favorable histology, meaning it has the least tendency to spread. We were a little concerned it could come back as unfavorable since this was the fourth time, but so far we've been lucky to have had all times be rated as favorable. They also said they were able to remove the whole tumor. Considering we've heard that same statement three other times, I'm not sure that's really something I find giving me the urge to jump up and down, but we'll chalk it up as good too.

Chemotherapy schedules are beginning to take form - we just have to make some decisions on how to handle them. More on that another time. Nothing major.

Since Ben seemed to be so comfortable finally, I was expecting to have a relatively quiet evening (and PERHAPS some sleep...hahahahahahahahahahahahaha - I just kill myself sometimes). But then Ben felt that midnight would be a good time to fall asleep. No big deal - midnight's pretty normal for me anyway, so that wasn't out of my routine. But then his bowels decided to wake up from their week-long nap and start to work their magic around 1 a.m. Don't worry, I won't get into the details on the latter, however, be glad you weren't here for that one! They are contining to work on a regular basis. I'm in between hospital gown/bedding changes and thought while he slept for a bit I'd jump on the computer.

Don't get me wrong...I'm not complaining. Bowel movements are a big deal around here. Parties are practically thrown when that first one happens and it also means we're that much closer to meeting the hospital requirements to go home.

I better get back to the room and make sure he's still asleep and okay. I really have to be on my toes now - thank goodness the bathroom is very close to his bed. I think they may have given him a few too many doses of "medicine" to get his bowels moving.

Until later...

Michelle

Monday, April 24, 2006 10:41 PM CDT

Hey, what do you know...more changes in the "schedule". Nothing bad, so no big deal. I'll take what they've proposed. We should be out of here Thursday or Friday.

He's now only on one new antibiotic, as opposed to the two different ones they had him on before. He's had the IVs taken out of BOTH of his hands, so he's now just having the port cath being used for IVs. He's potentially completed his BiPAP breathing treatments (they're taking him off as a trial, but it's looking good he won't go back on). They've reduced his Morphine even more and he's MUCH more active and alert. They won't need to do another x-ray until Wednesday to verify that the lung is in good shape still. He's able to cough with much less pain. All very good stuff.

He will have to have a small tube replaced on Wednesday (no surgery involved, but will still need to be under anethesia) because it has shifted into a position that isn't the most desirable, so they will hopefully be able to take his Foley catheter out at the same time, and also a drainage bag that they have in is side that was put in to keep track of potential leakage and bleeding - which there is very minimal of. To lose the Foley cath alone would be pure heaven for Ben. He HATES it...anyone who's had one (especially a male) completely understands.

My mom and I have been taking shifts - I love that I can get a few hours of sleep during the day so that I can get through these unrestful evenings. Between her and Sarah, I don't know what I would have done. Well, yes, I do...I would have been even more of a basketcase than I already am and the nurses would have taken me straight to 4th floor in a straightjacket. :) My Dad's at our house with Dave and Hannah so that Hanah can have most of her life back.

Thanks to Judi for coming to visit a couple of times already...and double thanks for the Cafe Mocha from Starbucks - you rock!

We had visitors last night - thanks for taking me out for a 12 year anniversary dinner Angie, Donna and Erin! :) Dave, that wasn't a dig on you...I know you had to get back and spending our wedding anniversary with three girlfriends at Hudson's just adds to my many new life experiences. :) Love you honey!!

We also had our neighbors (and very good friends), the Yonkes, come for a visit this evening. It's so great to see familiar faces. Thanks for visiting guys! As you can tell, we love visitors. :)

Ben's completely sacked out right now, so I thought I'd quick sneak away from the room. He's not having nearly as many spasms anymore, so I'm really hoping that he gets a good restful night of sleep. I think he will. He shouldn't have to be bothered by all of the extra treatments all night long either, so that will be of great help.

Things change so often, I'm not really even sure when or if I should update or leave it alone until we get home. Basically, all is well. He's getting well quickly. I'm well due to much needed rest. Hannah's well due to having half of her family back and Dave is well getting back to work (he may not quite agree with that statement actually). One more step toward recovery. More chemo plans will be discussed tomorrow and hopefully a review of the pathology report will be included somewhere in the day.

I think that about covers it! Thanks for being there for us. Love to everyone,

Michelle

Monday, April 24, 2006 10:36 AM CDT

Good morning!

Progress is the word of the day. :) Things have been improving pretty steadily. The x-ray indicated that his lung is basically back to normal again. Just a little more work to do and we can call it healed. He's still on his BiPAP mask every six hours (actually he's sleeping with it on right now), but it sounds like they may even be considering taking him off of that after this treatment to see how he does on his own. We'll continue to keep him moving around today to keep that lung strong. His tummy is very sore, but they have been slowly weaning him off of his pain meds too, so with the combination of so much more activity and the reduction in meds, he's starting to feel more of the incision - ouch!

Still not sure when he'll be released, but possibly Wednesday or Thursday...maybe even tomorrow (wishful thinking on my part maybe, but hey, it could happen!).

He's getting a little cranky, not that I blame him; so that's making it a bit more of a challenge to keep him content and comfortable.

We still haven't gotten his pathology report back from the surgery, so I'm hopeful that will be today. I'm anxious to find out if there's anything new to know.

Chemotherapy discussion has been put on hold for a bit until we have him all better. We're still not sure of what the schedule will be and if it will be inpatient or outpatient treatments.

I guess that's all I've got - good stuff!

I'll update with any changes, but in the meantime we're just hanging out with Grandma Ellis. Hey, maybe I'll even update from my own computer at home tomorrow! :)

Have a great day!

Love, Michelle

Sunday, April 23, 2006 9:42 AM CDT

Good morning!

It looks like we are finally seeing some improvement in Ben's lung. They aren't going to do another chest x-ray today because they are hearing enough air moving around at the moment. They are continuing with his prior treatments and he'll be getting more "workouts" from Mom and Dad, but I think we may have gotten over the hump. All of his hard work seems to have paid off. GO BEN!! Kidney still doing great. I swear that thing is made of steel.

He was up walking three times yesterday. He even made it from the bed to the touching the door handle, so that was a big accomplishment for him. He's eaten a few Cherrios and is now drinking apple juice - another good sign that he's feeling better. He asked for a Pop Tart, but his diet restrictions are saying that's a no-go. He's also watching TV and not sleeping all of the time, and even tried playing some PS2 yesterday. He hadn't wanted to do anything with these things before. He certainly looks A LOT better than he has in the last couple of days. Overall, we're very happy with his improvement, which makes us all relax more. Whew...deep breath. :)

My mom and dad are back from FL, so they are coming today and poor Sarah can go home and get some real sleep. Thank you Sarah for all of your help!!!!!! Dave's going to go back after rounds are done so that he can catch up on some work before he returns tomorrow. Hannah will have Dad, Grandma or Grandpa to hang with and will be able to get back to a normal home routine...sleeping in her own bed, getting on the bus at her own house, doing her animal "chores" (which she enjoys) and just having all of her familiar stuff surrounding her. And with Dave being around in the evenings will be an added bonus. My mom or dad will be hanging out here with me until we are released, so I will still be able to keep on taking care of myself too. Thanks guys!! It's kind of a two person job at the moment, getting Ben to move around and encourage him to continue to work on his breathing, which is still very painful for him. But we do see his pain subsiding little by little with each passing day.

They may even take him off of his oxygen today. He will be VERY pleased to get those darn tubes out of his nostrils.

Yea for progress! We still don't have any idea when we'll be coming home, but obviously not today. I have a feeling his improvement from here on is going to skyrocket and we may even get out early in the week. I'd be surprised if that were tomorrow, but who knows...anything's possible.

As always, we thank you all for your encouragement with cards, emails, guestbook entries, phone calls and tons of prayers. And by the way...visitors are more than welcome, so feel free to pop in if you'd like.

Love,
Michelle

Saturday, April 22, 2006 1:37 PM CDT

Good morning again,

Michelle here this time. We have the pleasure of having a healthy Hannah here with us right now - she's a sight for sore eyes!! I think she feels better being able to see us and Ben again.

Ben's x-ray from this morning doesn't show any changes. No improvment, but no decline either, so I guess that would be good?? The doctor was hoping to see some kind of improvement, even if just slight, but he's happy there's no negative changes. The lower part of the left lung is what is giving him the hardest time right now. The top seems to be getting plenty of air, but not much is moving around in the bottom yet. Although, they ARE hearing slight sounds, so we HOPE that we can get him to make it work right on his own without having to intibate him (I have no idea how to spell some of these words, so just ignore the spelling errors!!). The point of that would be to try to suction the gunk out of there that's causing his air flow constriction. If the doctor sees any signs of decline, he will intibate right away, but he will ONLY do that if things get worse. Otherwise, we'll continue doing the regular nebulizer (again, bad spelling) treatments, the BiPAP mask treatments and a vibrating device that loosens things up by shaking things up a bit.

We've been working him over pretty hard last night and today to get things moving with additional things. The more he coughs, talks, walks, moves around...the faster he will heal and the more likely that lung will open up for him. So he's not too happy with us right now. We did get him to sit in a chair this morning and this afternoon we plan to talk a walk...if you can call a walk of about 5 feet a walk. :)

So, I guess things are going okay. No improvements that the doctors can see, but we are seeing much more activity on his part and lots more coughing. Hoping that tomorrow's x-ray will reflect all of his hard work!

I can't believe how many really sick kids there are up here right now. They're moving patients all around trying to make room for everyone.

Our friend, Jack, has been admitted too for an infection, so we've had the pleasure of having a friend up here. Well, pleasure may not be the most appropriate word, but I think you know what I mean.

I think that's all for now. Things are stable, not much changing. We're getting pretty good rest and have been able to take care of ourselves too, so that's been helpful in helping with his care.

Thanks for checking in on us and all of your amazing support. We love you ALL!

Love,
Michelle

Saturday, April 22, 2006 6:19 AM CDT

Good morning!
Just dad updating this morning. We had another move during the night - we moved out of PICU and into room 356 back in the oncology area at about 9:00. He was the most stable kid in the PICU and they needed the beds; in fact were sending kids to the CCU and other areas so apparently there are lots of kids with troubles right now, yeesh!
He is continuing to improve, lots of good coughs moving junk around. Just had a chest Xray so we will see what his lungs look like. Aunt Sarah came and took the overnight shift - Thanks Sarah!!!!
I better scurry, he has his BiPAP mask on for two hours and I hope he hasn't awakened and ripped it off!
Dad

Friday, April 21, 2006 6:00 PM CDT

I'm not sure when I'll get back to a computer, so I thought I'd throw out a last update for today.

Things have gotten progressively better throughout the day. The mask that they have been using made a difference in his lung capacity after they did his repeat x-ray. Nothing's a "for sure" around here, but it looks very positive that we will not be pursuing plans A or B. YEA! That had me feeling rather sick to my stomach. The top portion of his lung is coming around, and the lower is slower going, but seems to be making some progress. The main focus right now is to stay on top of treating his lung so that we don't have to deal with any major ordeals.

He's got the toughest kidney on the face of the earth. It's still functioning as it should and there doesn't seem to be any concerns in that area. Weird to be in here for taking part of his kidney, yet not really doing much to treat it.

He continues to have a lot of pain, however, it does seem that the Morphine has been helping better since they have increased his dose this morning. He's also continuing to have spasms, so that, of course, causes more pain and awakens him when he's managed to fall into a nice sleep.

We've been complimented countless times on how amazing of a patient he is - cooperative, polite, good at communicating. We're really proud of him.

Hannah came home from school with a stomach ache. I have a feeling it's nerves, but she doesn't really want to talk about it. She spent some time with our good friend and will be doing more "Grandma time" tonight. Unfortunately she will not be able to join us for the weekend. Big bummer.

They think we'll be in the ICU for "awhile"...whatever that means. So I doubt we'll be heading for home around Sunday or Monday as we were hoping. I suppose that was a big "duh" of a statement! :)

We're all doing better, due to getting some sleep and settling into this latest change of events. This was not in the plan, you know! I don't see it anywhere on my itinerary that I had printed out prior to the visit. I drive myself crazy. :)

Better run - until tomorrow...

Love,
Michelle

Friday, April 21, 2006 7:39 AM CDT

Calling all prayers.

Last night was not a good one for Ben. He's continued to have fevers and that should have ended at this point. His Urologist was concerned about him and after several phone calls to the nurses getting updates on him, Dr. Thomalla decided to come in around midnight and has been keeping a very close eye on him since. He's transferred Ben back to the ICU, as his breathing has become an issue - very quick and shallow.

Based on the latest x-ray, it appears his left lung is having some kind of problem. Whether it be pnemonia, or something called Ateleclasis (be warned, my explanation of that one will be very shotty!), they're not sure. From what I understand, and that's not saying much, Ateleclasis is when the lung's not allowing the air to flow through the way it should, whether that be due to inflamation or fluid buildup; not sure. I'm sure any medical professional out there is just rolling their eyes at my attempt to describe this.

For now, they have him on a device called a BiPAP ventilation mask and he will likely have that on all day. As many of you know, he has had a strong fear of masks since he was little when they've had to mask him before surgeries. But he's doing wonderful and cooperating much better than I ever expected him to in this particular area. He has tried to pull on it a little, but I think he's starting to breath better now and hopefully realizes that taking it off will not benefit him.

A repeat x-ray will be done around 1 p.m. to see if his lung is opening up. If it's not, plan B would be to do something called a Bronchoscopy (spelling????) where they would intibate him and try to "vaccum" up the gunk that might be sitting around.

If that doesn't work, plan C is to leave him intibated and watch for improvement from there. We have no time estimate on how long any of this will take.

He's been in a great deal of pain. Didn't sleep much last night because he would startle himself awake and that would cause a lot of pain around his hip to hip incision. They've raised his pain meds quite a bit, so he seems more comfortable, but is still having a lot of spasms.

If they do end up doing the Bronchoscopy, they will put him under anesthesia again and would reinsert an epidural, since that seems to control his pain better than the Morphine he's currently on. They had to remove the epidural yesterday because it got kinked and caused a small leak.

Postives: kidney still seems to be hanging in there and no serious bleeding issues with that; he has an amazing and caring medical staff; there are still options; Dave and I have each other for support...I'm sure there's more than that, but I'm too tired to try to make my brain think that much.

It was a very long night last night - neither Ben nor I really did much sleeping - maybe a couple of hours, split up over the course of the night. It was also a scary one and has now become even more scary. Not sure where my personal breaking point is, but I think it's lurking around the corner.

Please, please, just send tons of prayers and good vibes his way. He's very scared (as are we), but he's also trying hard to be very brave. This is not the hospital stay that we anticipated, but I suppose the past six years aren't exactly what we anticipated either. We'll get through, but really, really need to reach out and get help with this one.

There are also a LOT of sick kids here that are keeping the hospital staff running like crazy, so please include them and their families in your thoughts and prayers. The PICU is having to use overflow rooms and the Oncology unit was full as well.

Signing off, very tired and scared...
Michelle

Thursday, April 20, 2006 2:50 PM CDT

A very quick note...

Ben had a good night in the ICU and has now been transferred to a regular room. He's in room 357 (number's at the bottom of home page). He's very sleepy and continues to have low grade fevers, but all in all, he seems comfortable. His protien is a little low so he may just be needing some extra nutrition. His creatinine level (measures his kidney function) is rising, which isn't the best thing, but they don't seem overly concerned about it. I'm sure that's expected as they did say he would lose some kidney function. Just hoping it doesn't rise any more.

Need to get going - I haven't been here at the hospital long at all because I took the second ICU "shift" and didn't get to go to sleep until 5:30 this morning. I did sleep very well all morning though, so now it'll be Dave's turn to rest.

Have a great day everyone and I'm sure I'll update once again this evening. Thanks for all of your encouragement!!

Love to all of our family and friends - from all over the place,

Michelle

Wednesday, April 19, 2006 8:42 PM CDT

Hello!

Wow, what a long day! But as good of a day as we could have asked for. I feel like I'm announcing the birth of a baby, but WE HAVE A KIDNEY!! (and a new port cath - is that like having twins?) :)

He did so well going into the surgery - he was SOOOOOO brave and was complimented about how great of a kid he was by anyone who met him.

Surgery was a complicated one and took about 6 1/2 hours to complete. Had us on the edge of our seats, but we managed to keep ourselves pretty occupied. He got done around 7 p.m. and is sleeping very comfortably in the ICU as I type. Dave is hanging out with him, but snoring is about the only response he's getting at the moment. I was lucky and got to talk with him a little, but it was short lived before he zonked right out on me. He took a good look at his new port cath and the bandages on his incision, but didn't seem too upset by them like he has been in the past. The only pain he's complained about so far is his port, but that should subside.

Providing there are no complications that come up overnight, he'll be able to be moved into the oncology area tomorrow. They're keeping a close eye on his blood pressure, heart rate, urine output and any signs of bleeding. There was some difficulty stopping the bleeding after they were done, but after about 1/2 hour, they seemed to solve the problem. The doctor said his surrounding organs all look perfectly normal and healthy. :)

The doctor only ended up having to remove about 10% of the kidney, vs. the original 30% he was anticipating, so he was pleased. The tumor was solid and there was a lot of tough tissue surrounding it, so he felt like it would have been difficult for it to spread to his other organs.

Assuming all goes well, he will begin chemotherapy in 2-3 weeks. In the meantime the focus is to heal his little body up. Looks like we'll be here until Sunday or Monday.

He'll lose about 10% function of his kidney, but it's not enough to warrent removing it at this point, so we've been granted more time for him to grow bigger. Yea! That's what we were all hoping for. It seems odd to be happy to be able to do chemotherapy. But between that and dialysis, I suppose chemotherapy is the better option at the moment. Ahhhh, the lovely decisions we get to make. :)

Please keep those prayers coming - I'm sure the coming days will become very uncomfortable for him and he's going to need lots of strength and will to deal with that. I know he doesn't get that quality from me, so hopefully he's inherited his pain tolerance from the Lansing side. Also pray that if there are any challanges presented to us all, that we can make the right decisions on how to handle them.

I will post his room number on the bottom of the page tomorrow (if I remember!) if anyone would like to call or visit. Otherwise you can just call the main number listed and just ask for his room.

I already lost one entry earlier, so I'm going to quickly sign off now in hopes that his one doesn't get erased too!!!

Lots of love to you all and thank you for the wonderful email and guestbook entry support...we really need that. :)

Michelle

Tuesday, April 18, 2006 9:43 PM CDT

Hello!

I don't really have much to write actually - a pretty uneventful day that somehow kept us very busy. Between doctors and nurses and volunteers and interns stopping by, we seemed to have much to do without getting much accomplished.

Much to his dismay, he had to have an IV put in his hand, but he was amazing about it. He just sat there patiently after two tries and never once complained. They've been giving him medication to empty his bowels, so he's got some stomach cramping, but he's been fairly energetic and content for the bulk of the day. Even took a nap, although he would never admit that.

Tomorrow is going to be a trying one for all of us. I am personally getting more nervous, but I'd like to think that's a pretty normal reaction. He will be going down for pre-op around 10:30 a.m. and the surgery is anticipated to begin around 11:30 a.m. We are REALLY hoping that his kidney will hang in there and keep on functioning for him. Going into a day where you have no idea what is going to happen is very unnerving.

He's appearing to be doing quite well with everything. I don't know just how much is being bottled up, if anything, but he's much more relaxed about it than I am.

Dave is spending the night with him while I spend the night at a beautiful place called The Hope Lodge, for people with cancer and their support system. We'll switch every other night and tag team it. In the event Ben will be in the ICU for a night or two, we do fortunately have two very DEAR people :) to be a third party to help us out...you can't sleep in the ICU, so for Dave and I to tag team that is exhausting and unproductive for caring for Ben. Fortunately one parent can stay and sleep in the regular rooms, so it makes it much easier in that situation.

I will definately update tomorrow evening when all has settled after the surgery and he is back in his room. Please pray that he isn't fearful while being taken into surgery and that he finds lots of strength within himself for his recovery. He's a pretty darn amazing 7 year old and I'm a very proud to be his mom. I just want lots and lots more time with this little boy. Out of the blue the other day he asked me if he was going to grow up to be an old man. It didn't come after a conversation about cancer and didn't seem to be stemming from anything cancer related...just a question that a 7 year old sometimes blurts out. If I had the choice, he will grow to be a very old and very wise man. I very much hope that my wish is granted.

Love to you all,
Michelle

Monday, April 10, 2006 10:32 PM CDT

Hi. It’s been a long day of education and decisions.

Where to start. Hmmm...with so much information riddling my brain, I’m still trying to sort it all out myself. I’m not sure how well this will come out without sounding more confusing than informational, but I’ll do my best. Please have patience with me!

Dave and I began the day with Ben’s Oncologist and Urologist in a joint meeting. Fortunately, Ben didn’t need to be there, so he was able to attend school. It was nice to be able to have an open dialog without having to edit some of it to a child’s level. Although, we felt like our understanding of the information was at a child’s level for the bulk of the time anyway!

During this first meeting, we discussed his two primary options and ultimately we all agreed on one. It wasn’t actually as difficult of a decision to make as expected; our instinct sort of led the way. Thankfully the doctors had the same feeling, so that reinforced that we are hopefully heading in the right direction. We have decided that the best route to take right now is to do a partial nephrectomy (removing about 1/3 of the upper pole of Ben’s kidney). This is the portion that the tumor is located. Rather than taking the entire kidney out, we are hoping to salvage the remaining good tissue since it still has very good function. We’d follow up with yet one more type of chemotherapy (as soon as he heals from surgery), and hope for the best. Basically what it boils down to is that we are buying more time before the kidney needs to be removed completely. Not sure how long the chemotherapy rounds will last, but we think each round will be given in the hospital for 5 days at a time, with approximately two weeks between each round. Yikes!

The other option was to just remove the kidney, follow up with radiation, and put him on dialysis right away. He’d be on dialysis for at least a year, maybe longer. Many of you have wondered why we haven’t done this already, but there are many more complications involved with this solution than appear. I won’t even get into everything or I will never get this entry completed. I’ll just leave it as this; taking out the kidney does NOT solve the problem of another recurrence or getting rid of the cancer altogether. It could possibly even cause further harm. Unfortunately, our decision to have the partial nephrectomy done could cause further harm as well, but it appears to be the lesser of the two evils.

It was a very interesting meeting, as no one seems to have any real answers. Between seven specialists, there is no one who has a definite solution. There are really no studies on this situation. Ben is apparently now in a class of about 6 children nationwide with a problem similar to his. Our Oncologist has been absolutely wonderful about researching and picking the brains of the other specialists. Reading their email responses to his questions about Ben’s case is almost humorous; in a twisted sort of way. One begins with, “Difficult problem. You’ve been to the well too many times.” Another begins with, “Obviously a difficult situation” and answers with, “I don’t think there is a right answer here – but I would be tempted to...” Comforting, huh?

Anyway, the surgery has been scheduled for Wednesday, April 19th. (We will have the pleasure of spending our wedding anniversary on the 23rd...for the second year in a row in good old Marshfield, WI) He will be admitted on the 18th to get prepped for everything. They will also be putting in a port catheter during surgery so that he can receive his chemo and have his labs accessed through it. Much easier and less painless than IVs and lab pokes. It’s kind of like the Hickmans that he’s had in the past, but it will be placed entirely under his skin, so it will be much less maintenance for us and he will have fewer limitations. We read a children’s book about it to Hannah and Ben, so he seems to be somewhat comfortable with it. It’s also good for Hannah to have a good understanding of what the device is that will be sitting under his skin, as you’ll be able to see a bit of a bulge where it is.

After our first meeting, we met with the Nephrologist (Kidney Specialist) to discuss dialysis and kidney transplant issues. There’s a possibility that during Ben’s surgery, the kidney could just stop functioning, therefore it would have to be removed right away anyway. The kidney has had some kind of work on it, whether it was biopsies or surgeries, four times already. So messing with it for a fifth time might just make it decide to call it quits. Only time will tell. Going into this surgery will be unpredictable, so we wanted to know more about the process of dialysis and kidney transplant before it was thrown on us. More detail that I care to get into right now, so I’ll save that for another post.

I think Ben’s getting a better understanding of the reality of things. He’s not outwardly upset, but did express some annoyance with starting the process over. Hannah’s being a great sister. I know that she’s worried, but she and Ben seem to be going about their lives in normal fashion – physical and verbal abuse toward each other one minute; pure love the next. Very normal, thank goodness.

It’s good to get today behind us and know that there is a plan set in place. I don’t like the waiting and wondering. Ben’s pre-op exam will be done at his regular pediatrician’s office this Thursday, so we get to avoid having to make another trip to Marshfield. There are going to be many, many visits there, so the more we can eliminate the better!

I guess that sums up the day’s events. I realize this is very lengthy – thanks for hanging in there to the end!

We’ll be back…

Love,
Michelle

Friday, April 7, 2006 8:35 PM CDT

Hi!

Today didn't bring a lot of new information, but some relief regarding his scans. His brain MRI looks perfectly normal. We haven't gotten the official report from the Radiologist on his bone scan, but it appears to be normal. The ultrasound just reinforced that there is definately something new going on. The last ultrasound in January showed nothing. This latest ultrasound shows a clear new growth. The growth is presenting itself in a typical tumor form, rather than what scar tissue would look like, so it's very likely that this is not an error. At one point this week, I had convinced myself that this was an error - that it was simply scar tissue from his last surgery and the cancer has not returned. There is still a very remote chance that this could be the case, but it's about as remote as remote can get. Of course I have hope, but I also have to be realistic.

Ben did AWESOME with all of his tests. He was so amazingly cooperative with everyone. I can't believe how well he layed still for the scans. I was feeling anxious and claustrophobic just watching him stuck in those machines! He is so brave.

We got lucky and now have our next appointments rescheduled for Monday. We will be meeting with Ben's Oncologist, Urologist and Nephrologist. We are hoping to get some more direction from there. We did find out for certain that he has to have an open biopsy (surgery) vs. a needle biopsy. His ribs are in the way for a needle biopsy to be done safely. His Oncologist is hoping to have the surgery done by next week. The biopsy will confirm that this new growth is Wilms and we can then start to form a plan of action. They cannot medically confirm that the cancer has returned until a pathology report has been done on a biopsy.

Ben will not have to go with us on Monday, so thankfully he will not be missing another day of school. He only attended one day this week, between being sick from the flu and going to appointments. Not good.

This weekend, Hannah, her girlfriend and I have a Girls' Night Out planned. I'm so excited to do something fun! We'll be going out for dinner and girly talk, and then taking in a dance performance at the University of WI, Stevens Point. She'll be spending the night, so Hannah will have some positive attention sent her way. Ben is looking forward to some Dad time too.

I guess that's about all I have for news. Longer than I expected, but I have a knack for that, don't I? :)

Please keep us in your thoughts and prayers that Monday will bring us more perspective on what's going on and what to do about it. And that we can get through the weekend without going crazy!

Love,
Michelle

Thursday, April 6, 2006 8:59 PM CDT

Okay, those of you that know me well, know that it's virtually impossible for me to keep things brief.

I, of course, have one more thing to add. I have decided to run a 5K in honor of Ben and his Grandma Julie, as well as in memory of our two dear angel friends, Chris Schauf and Dick Pendergast. Of course there are many others who I have in my heart, but sadly, there are too many to mention. The event will be taking place on Saturday, May 13th, in Appleton, WI. See soleburner.org for more information.

I realize that many of you have been very generous and contributed to St. Baldrick's Day, so I am not expecting donations for this to roll in as well. I am, however, asking for emotional support, as I haven't been able to run on a regular basis due to having persistant issues with shin splints. I feel a strong urge to do this regardless of the limitations that I get from running on a regular basis. This event will benefit the American Cancer Society - obviously an important association for our family. We've been given so much, I feel like I need to give back something, even if it is a small contribution.

If you would like to view my page, please go to http://www.active.com/donate/soleburner/MHoran (I am participating in the ClownPhish team, set up in memory of Chris and her friend), then click on View Team Fundraising Pages: Lansing, Michelle

I'm a terrible fundraiser - I will be the first to admit that...but I could use your support, either emotional support or funding. Please be patient with me - I feel like there is so much I need to give back and I am drawn to events such as this. I could primarily use encouragement and advice on how to overcome this issue I continue to have with shin splints. I've researched it thoroughly, tried numerous "treatments" and nothing seems to help. But of course, this event is not about shin splints...it's about raising funding for the American Cancer Society.

Thanks for taking time to listen...

Love, Michelle

Thursday, April 6, 2006 5:20 PM CDT

Hi again,

Another quickie. Again, not much news, but just wanted to let you all know that Ben is feeling MUCH better and even went to school today. His fever went away yesterday and all of his pent up energy is coming out today - wow!

Tomorrow will be a very long day. His first appointment will begin at 8 a.m. (remember, the hospital is almost 1 1/2 hours away from our home), and the last appointment will probably end around 4 p.m. Yikes! I don't think that we will be meeting with any of the doctors though, so I probably won't have anything to write until next week. Should make for a long weekend of waiting and wondering.

We are now scheduled to meet with the doctors on Tuesday next week after they've reviewed the ultrasound and scans. We are hoping that there is some sort of plan in order at that point. I'm personally not enjoying this waiting game, but we're keeping occupied.

I'll update tomorrow if I have anything of interest to write. Otherwise, I'll be back on Tuesday. Thanks for checking in on us!!

Love,
Michelle

Tuesday, April 4, 2006 10:51 PM CDT

Hi again,

There's really not a whole lot to add, so this will be short.

We found out today that Ben's scans and ultrasound will be scheduled for all day this upcoming Friday. Other than that, I don't know what else, if anything, this week will bring. I believe that the doctors are making contact with one another this week and coming up with a plan that they feel is best for his situation, since this is not a normal pattern that this disease takes. Then we can all make some decisions about what route to take.

The only other thing that's going on is that Ben has come down with a nasty case of the flu again. Last night he woke with a 104 degree temp and has since remained in the 102-104 range. He slept the day away and is again sound asleep. I'm hoping that his fevers break and he has a much better day tomorrow. Today was not a comfortable one for him. This is completely unrelated to the other things that are going on.

That's about all I have for the moment. I will add more as I know more. In the meantime, thank you all for the wonderful and encouraging email and guestbook messages, as well as the phone calls. We love and appreciate having the amazing support system that we have been blessed with and hope you each understand how much you mean to us. Hearing from you and knowing your support is with us is what keeps us going.

Our love to everyone,

Michelle

Monday, April 3, 2006 8:35 PM CDT

Today was Ben’s 2 month checkup and CT scan. Isn’t there a saying - something about “third time’s a charm”? Apparently this is not a phrase that applies to Ben - we found out today that he is now beginning his fourth dance with cancer.

I’ll just begin with the positive. It appears that his latest tumor is contained to his remaining kidney. The lungs appear to be clear, as do the surrounding organs. The doctor continues to be surprised that the cancer has not made its rounds to any other organs after so many recurrences. To be certain that it hasn’t hidden itself in other areas; they will be doing an MRI of his brain, a bone scan and another ultrasound of his abdomen to see if there is any new growth since the last ultrasound that was done in January. He’s never had a brain or bone scan done, so at the very least, it will reassure me that we don’t have that unanswered question just hanging out there, and we can focus on one organ and one tumor. Another positive is that we still have several treatment options available. The options are getting less desirable, as well as more complicated, but they are there. There are too many questions that need to be answered before I can get into all of it, so I won’t even try right now. It hurts my head.

Ben appears to be in denial. His doctor and I sat down and talked with him and his primary response was a nonchalant “Okay”, followed by, “Hey, they have a Game boy here just like mine, Mom!” His only question so far…is this a bad tumor? Other than that, he’s been complaining of feeling sick all evening – I don’t know if he thinks he needs to be feeling sick because of this news, so he’s just saying that; if he’s worrying and that’s making him feel sick; or if he really is sick. I do know that he is very tired, so Dave is snuggling with him right now in bed. I’m so thoroughly confused myself, so I would imagine he’s trying to sort through his own things in his head.

Hannah has had a few responses. Surprise. Anger. Sadness and crying. More anger. I think that she’s going to need to do a lot of talking openly to get through this one. I hope that she doesn’t internalize it. She deserves a break too. She’s been exposed to way more than a 10 year old should have to be. Maybe that’s why she’s so sensitive to others who are hurting or need a friend.

As for Dave and I, well…I’m not really sure how to answer that one. I can say I have a headache right now. There will be a lot of big decisions that we will have to be making this week and quite frankly, I want out. I want to be the carefree 19 year old young woman who’s only major decisions were what time I had to get up in order to get to work on time and what on earth shall I wear - jeans or khakis? But reality sets in and I’m a grown up mom of two beautiful children. One that has an illness, and needs someone to stand by his side to fight it off with him. The other that needs to be loved, nurtured and feel needed.

Please keep Ben (and all of us!) in your thoughts and prayers as we go through the week trying to make the best decisions for Ben’s health. Our options are not the most appealing, but we’ve managed to forge through almost six years of tough decisions and I have confidence that we can somehow find more strength to do it again.

More to follow as we learn more…

Love, Michelle (for everyone)

Wednesday, March 29, 2006 10:03 AM CST

Hello!

We've been having problems with our computer so I'm using Dave's mom's for now. Ben's appointment has been delayed so I don't have any new news. He ended up getting quite a cold/cough and we didn't want to risk having a false test result stemming from his virus. He's rescheduled to go in on Monday, April 3rd. I'll be back after that appointment. Until then...

Michelle

Sunday, March 5, 2006 9:02 PM CST

Hello once again,

Just a quick update to post some photos of our St. Baldrick's Day adventure. We had a great time, a great turn out and made LOTS of money for childhood cancer research. The totals aren't in yet, but if you want to keep an eye on our final total (probably won't be accurate for a couple of weeks still), visit http://stbaldricks.org/location_detail.asp?citycode=UWSP06. Our goal was $50,000, but I would guess that we exceeded that.

I'm in the process of posting before and after photos on the website, as well as some candid shots. I'm not even close to having that done, so the site isn't quite finished yet. Considering we had approximately 135 people shave their heads for the cause, it may take some time.

We are very happy that things went so well. A huge thank you to all of you that were able to come out and join us; were able to donate time, money, in-kind donations; or just simply rooted us on! An event like this cannot happen without your many different ways of support.

Ben's next appointment is scheduled for March 24th. He will be getting a CT scan done, as well as his usual chest x-ray, labwork and exam. I will not likely be updating until then, hoping to report only good news.

Take care and thanks again for all of your support with St. Baldrick's Day!

Love,
Michelle

Friday, February 24, 2006 10:23 AM CST

Greetings all!

We hope that you have been having a great several weeks - we have continued to be doing well. February has come and almost gone without us even realizing it.

I can't resist plugging St. Baldrick's yet one more time before the big event on March 3rd. This event is raising money for childhood cancer research that over 200 hospitals nationwide have access to, including Marshfield Clinic where Ben goes. We've made great progress in the last few weeks - we're up to 86 people volunteering to shave their heads...and counting! We will be honoring 8 local children for their battles with their diseases. Three of them will be personally speaking to us that evening - a very touching gesture on their part as I'm sure it's not an easy thing to talk about. Come out and join us!! If you can't, visit the website at www.stbaldricks.org or go directly to our location's event at http://stbaldricks.org/location_detail.asp?citycode=UWSP06. You'll be able to see photos of the kids we're honoring as well as all of our 'shavees'.

Hannah has decided to shave her head and form her own team called Hannah's Hairem, so be sure to check that out. She has four people on her team, including our very own little Mr. Lansing. You'd think that child would be sick of being bald, but maybe it feels more natural to be without hair than with it! :) Dave and I have chosen to hang on to our hair this year, but we are involved in planning the event with a great group of volunteers on the planning committee.

Hannah and Ben would greatly appreciate any donations put under their names, so if you are able to make one, it can be done right online, or you can send it in as well. They're starting off a little sluggish, so they could use a boost!

Other than St. Baldrick's Day occupying a good portion of our time, we've had a busy February. Dave and Hannah celebrated birthdays on the 11th and the 22nd. Hannah is now 10!! Double digits! I'm too young (at least I thought I was) to have a ten year old. Tomorrow, at her request, we are heading to Build-A-Bear with one of her girlfriends for her birthday party. She's always wanted to go there, so she's very excited. The child in me is also excited. :)

Take good care everyone and keep in touch. I've been very bad about visiting other websites and signing in, but please don't think that I'm not thinking of you all daily. I am a much better corresponder via email.

Love to all,
Michelle

Friday, February 24, 2006 10:23 AM CST

Greetings all!

We hope that you have been having a great several weeks - we have continued to be doing well. February has come and almost gone without us even realizing it.

I can't resist plugging St. Baldrick's yet one more time before the big event on March 3rd. This event is raising money for childhood cancer research that over 200 hospitals nationwide have access to, include Marshfield Clinic where Ben goes. We've made great progress in the last few weeks - we're up to 86 people volunteering to shave their heads...and counting! We will be honoring 8 local children for their personal battles with their diseases. Three of them will be personally speaking to us that evening - a very touching gesture on their part as I'm sure it's not an easy thing to talk about. Come out and join us!! If you can't, visit the website at www.stbaldricks.org or go directly to our location's event at http://stbaldricks.org/location_detail.asp?citycode=UWSP06. You'll be able to see photos of the kids we're honoring as well as all of our 'shavees'.

Hannah has decided to shave her head and form her own team called Hannah's Hairem, so be sure to check that out. She has four people on her team, including our very own little Mr. Lansing. You'd think that child would be sick of being bald, but maybe it feels more natural to be without hair than with it! :) Dave and I have chosen to hang on to our hair this year, but we are involved in planning the event with a great group of volunteers on the planning committee.

Hannah and Ben would greatly appreciate any donations put under their names, so if you are able to make one, it can be done right online, or you can send it in as well. They're starting off a little sluggish, so they could use a boost!

Other than St. Baldrick's Day occupying a good portion of our time, we've had a busy February. Dave and Hannah celebrated birthdays on the 11th and the 22nd. Hannah is now 10!! Double digits! I'm too young (at least I thought I was) to have a ten year old. Tomorrow, at her request, we are heading to Build-A-Bear with one of her girlfriends for her birthday party. She's always wanted to go there, so she's very excited. The child in me is also excited. :)

Take good care everyone and keep in touch. I've been very bad about visiting other websites and signing in, but please don't think that I'm not thinking of you all daily. I am a much better corresponder via email.

Love to all,
Michelle

Wednesday, January 25, 2006 11:31 AM CST

Hello all!

It’s that time again for me to get on my soap box for one of our past favorite causes. I know that it’s quite early, but I wanted to be sure that anyone who would like to attend can get their calendars marked. Any guesses as to what I’m referring to? St. Baldrick’s Day, of course! It’s back in the area for its fourth go around. Fortunately a friend has taken on the role of organizer, so I am simply part of the planning committee. I have the fabulous job of organizing the kids we are going to be honoring. What a fun role to play! To date, the past three events that have been organized in our area have been able to raise almost $50,000!! We are so proud to have been a part of this particular fund raiser. So...here are the details:

Date: Friday, March 3, 2006
Time: 6-10 p.m.
Place: Wisconsin Rapids, WI at The Ridges
More Information: visit www.stbaldricks.org, click on Find An Event and then click on our location as listed above (we’re the second from the bottom). Donations can also be made on this page if you would care to donate on behalf of someone shaving their head.

Of course we are always looking for people who would be interested in shaving their head in solidarity with kids who don’t have the option of being bald, but coming to the event doesn’t mean you are going to walk out bald!! :) It’s a fun-filled and family friendly event that includes free food and beverages for children and adults; a shaving frenzy of course; some speakers, including one teenage cancer survivor and one teen currently in treatment; children’s activities; dancing and live music; and more. This event has been close to our hearts and we would encourage anyone and everyone to come out and join us for a fun evening for a great cause. Even if you can’t come, please help us to spread the word. We’ve even been asked if Ben’s story can be profiled for the St. Baldrick’s Foundation. I’m not exactly sure where that will lead, but they are hoping to use it as part of their media marketing to help spread the word about childhood cancer research.

Off my soap box, things are going well here in the Lansing household. Nothing really new to report, thankfully. A dear cousin of mine passed away unexpectedly recently, so that’s been tough on his family. Please say a prayer for their healing.

Thanks for listening to my annual pitch for St. Baldrick’s Day. I’m sure I’ll be pestering you more with it as it gets closer. :) In the meantime, hope everything is well with everyone and know that we love and appreciate you all!

Love,
Michelle

Friday, January 20, 2006 9:55 PM CST

Okay, now we can breathe for another couple of months.

Ben's appointment today went perfect. Nothing showed up on the ultra sound, chest x-ray, labwork, u/a. Kidney function continues to plug away like it should. He's a healthy, thriving 7 year old in the 90th percentile for height, 70th for weight and 101th percentile for spunk. Obviously the chemotherapy hasn't stunted his growth.

His Oncologist is a Patriots fan, so the very first thing that Ben told him as he walked into the room was, "You know the Patriots lost". Fortunately his oncologist is good natured, has a sense of humor and finds Ben to have character.

I was really proud of how incredibly well he did and acted toward everyone he encountered. He's so brave about everything - nothing seems to phase him anymore. He calmly watches them draw his blood - not that he enjoys it, but he never complains or resists. He practically takes his own blood pressure and weighs himself. He was helping the x-ray tech to clean up after his x-ray was taken. He was great.

We went to the cafeteria while waiting in between appointments and he made himself a big salad. A salad. That's what he chose from the whole cafeteria. Of course, dessert was a chocolate doughnut with chocolate icing and sprinkles, but hey - the boy enthusiastically ate a salad.

We're now six months out from his last chemo treatment. Next stop will be a CT scan and all of the other stuff he had today in two more months (no ultra sound though). For the time being, he's scheduled for March 24th, assumming they don't reschedule on us like they typically do. So two more months to continue to focus on good stuff and keep letting the fear of cancer dissolve each day. Two more months to push out more bad memories in order to make room for great ones.

To top the day off, tonight we went to watch the Almond-Bancroft basketball game and our "thoughtful" neighbor (thanks a lot Jeff!) gave him a gigantic pixie stick so he could end his day on a good sugar high. We love you Jeff. There's a lot of sarcasm in this paragraph if you hadn't picked up on that. :) Our team won though, so it was a lucky day.

Thanks for keeping Ben in your thoughts and prayers. After some last minute freaking out on my part this morning, I'm very grateful to be going to bed with peace of mind instead of on a cot next to Ben in the hospital.

Love to all,
Michelle

Saturday, January 14, 2006 7:26 PM CST

Hi everyone!

We are back from our trip to FL and are completely exhausted and revived at the same time...does that even make sense? We had so much fun. Everything was exciting for the kids – their first limo ride and plane ride; playing in and seeing the ocean for the first time; the Magic Kingdom, Animal Kingdom, MGM, Sea World, Give Kids The World; feeding/touching dolphins and stingrays…the list goes on and on (and on and on). From the moment we were picked up at our house to the moment we landed back on our doorstep, we were treated so kindly. Make-A-Wish and Give Kids The World are such amazing organizations. My hope is to go back to Give Kids The World to volunteer some day. I would love to be on the other end of this organization for a different perspective. A huge thanks to Kristin and Judi for all of your hard work with Make-A-Wish to make it all happen. You both were wonderful to us.

I’ll work on getting some photos posted soon. I took 15 rolls of film (got a little carried away) and about 5 hours of video. Anyone up for a home movie marathon? :) Just kidding – my taping was so awful; it’s torture for even me to watch it. If I could change anything, I would’ve ditched the video camera and looked at the world without a lens.

Regardless, it was an amazing week and will never be forgotten. I believe that the more wonderful memories that are being created will dissolve the bad memories, one by one, that have been thrown at us for so many years. 2006 will be about replacing the bad memories with the good memories until the bad are so distant that it will not be in the forefront any longer. We don’t want to ever forget the lessons that we’ve learned from all of this craziness, but we would like to be able to, once again, let our guards down and let life be about anything but the fear of cancer hanging over our heads. This trip has given us the boost to start 2006 feeling renewed. Being the quote maniac that I am, I ran across something that I love and think would be so fitting to describe what Give Kids The World is about.

“Wake up with a smile and go after life...live it, enjoy it, taste it, smell it, feel it.” ~Joe Knapp

It’s time for Ben’s next check up. He’ll be getting “the usual”; ultrasound, chest x-ray, lab work and examination on Friday the 20th. I am not feeling as anxious as I usually do when these check ups get closer. Of course I hope that all of the tests come back clear, but I know that even if they didn’t, I have no control over that.

Thanks for checking in on us! Check back again for photos sometime soon.

Love,
Michelle

Friday, December 30, 2005 12:51 AM CST

Well, the countdown is on for Ben's Make-A-Wish trip to Disney in FL! We leave on the 6th at 4:15 a.m. via an escort service...oo-la-la. To say the kids are excited would be a huge understatment. They just cannot wait for everything - the plane ride, Give Kids The World (where we'll be staying), Magic Kingdom, Sea World, MGM, Animal Kingdom, Epcot - oh my gosh...how will we fit all of that in?? Our MAW granters (thanks Kristin and Judi!) came by to give us all of our information for the trip: tickets, expense check, Disney Dollars, a bunch of presents for the kids, balloons, and a huge cake for the kids. That got them even more excited - it's becoming real! The thing they are most impressed by is that they will get to go to the front of the line for every ride - no waiting. Sweet! Ben even got a post card from the big mouse himself telling him that he couldn't wait to meet him. :) This Foundation is amazing - a worthy cause that we will be focusing our energies on in 2006, as well as Give Kids The World. Not only is this a trip that we would never be able to take on our current budget, but the perks that come along with it are mind boggling. We'll have breakfast with Mickey and his pals one day. Ben and Hannah have been given their own spending money. Ben's planning to hit the Lego store and clean them out. :) So, this is a very exiting time for the Lansings - what an awesome way to start out a fresh new year. I hope that this is a sign of a great 2006 to come.
Thanks to all of our family and friends for always being there this past year when we were losing our minds while Ben took on his third battle with this disease. It was a long 12 months of craziness and we couldn't have gotten through it without all of your support. Many good things have come from this nightmare, but we do hope NOT to go for a fourth round. I think he's done his job of fighting it off well enough to warrent being cancer free forever, wouldn't you agree? A fighter he is and always will be.
Happy New Year to everyone!
Love,
Michelle

Friday, December 23, 2005 7:37 PM CST

The following is a copy of our Christmas letter, written by Dave. Merry Christmas to all!! :)


2005 was an awesome year for the Lansings! We have been blessed with many things to be thankful for, and I will try to quickly summarize them here. I am always torn in trying to fit in all the important things vs. trying to not make you feel like you have been invited over for a surprise slide show starring our family and there is no escape! I will juggle as best I can without sending you on to someone else's Christmas letter in the hope of finding a little less detail.

Hannah continues to impress us with her kind heart and happy manner. As much a bookworm as ever, she continues to devour most any book put in her path. She is now a fourth grader and seems to be having little problem with the coursework. She also still loves it at the farm, where she accompanies me to most every milking (except the ones on school mornings!). She has developed an interest in cooking for herself, so if you ever need a chef who specializes in grilled cheese, fried eggs, or peanut butter sandwiches and have cholesterol to burn she's your girl! She played softball for the first time this summer, with the team made up of girls from third to fifth grade. They were a good team together and always cheered for each other, no matter the score. She was pleasantly surprised that a drawing she submitted three years ago to the National Childhood Cancer Society was chosen to be used on some holiday cards this year. The cards are a fund raising tool for childhood cancer research. Visit curesearch.org and check out her holiday card, with her picture and quote on the back of the card. Remember, she was six years old when she did this, so she looks much different than the grown up young lady that she is now.

Ben has had a well documented year to add to his medical file, but for now we are thankful for four words: NO EVIDENCE OF DISEASE! That is a good way to close the year, but we are always mindful of the unpredictable nature of this beast and for better or worse keep our guard more up than down. He is a big first grader and has settled in quite well. He is now reading his own books with less and less help from any of us, which is cool and sad at the same time. He would play video games all day if you let him, but does enjoy boy stuff like building things, getting dirty, and tackling things. Also, another summer of tee ball coached by dad and only missing a couple games due to chemo commitments. He can be shy one minute and not shy enough the next. He has become OK at chores but can still be an accomplished staller, whiner, and pity seeker at the drop of a hat. In January we will be going on his Make-A-Wish trip to Disneyworld in Florida! Sweet wish buddy! We will celebrate his golden birthday while there on the 7th. We had always resisted the Make-A-Wish trip mainly because we viewed it as something that a terminal child did, but we were encouraged to do so by the staff in Marshfield. So, the Lansings find themselves on the verge of a family vacation; how about that! Now, who can board a dog, five bunnies, one cat, and 14 chickens for a week?

The parents of these kids have had another year of managing crazy schedules and crazy kids and still finding time for the occasional kiss and hug. :) Large events in our lives this year reminded us of all the wonderful people around us that we have to be thankful for.
In March our St. Baldrick's Day event shaved 94 heads and raised $34,000 for cancer research thanks to the help of our good friends who helped plan, who shaved their heads, and who helped make it a very successful night despite the winter's worst storm.
In July a chicken barbeque was held at Vista Royalle campground in Bancroft with the proceeds going to our family, organized by our friends the Wierzbas and the Yonkes, with lots of helpers in between. This was a stunningly successful happening and we were again humbled by the generosity of others. With the proceeds we were able to settle some medical bills and purchase a wood stove (along with some help from our family) to take the bite out of the winter heating bills.
Also in July Michelle's family organized a rummage sale with the proceeds again going to our family. Hosted by David & Sarah Hayakawa, it was a great event due to the hard work put in by wonderful people.
In September we again did the American Cancer Society Walk/Run, with the harrier Michelle doing the 5K run for the first time. I was so proud to see her achieve a goal like that, plus we were able to raise more money in the fight against cancer.
In December we were again fortunate to be able to participate in the Smokey Express Christmas Gospel Show. This event has made donations to many charities over the years, and the Ronald McDonald House of Marshfield, our "home away from home" often this year, is one of the organizations that receives part of the proceeds. This year Hannah and I were joined by Ben in the choir. He came along with us to a few practices and I noticed he knew most of the words and a lot of the hand signals and sign language, so we just kind of stuck him in there. He even got to come out front when the organizer, Janet, promoted St. Baldrick's Day 2006. One of the choir members, one of the family band members, and a friend are going to shave their heads. Mark your calendars - March 3, 2006. You don't have to shave your head to attend, but we'll take as many willing victims that come forward! Visit www.stbaldricks.org for more info (the event this year is being held in Wisconsin Rapids at the Ridges).

So I can't say it enough...thank you to all the wonderful people who have helped us have a great year. At times we found ourselves speechless in light of all the help we have received, but we want all of you to know that we are so grateful for your friendship and love. Without you, this would have been a bear of a year to grind through.

Oh, sorry for the scarce humor in the letter this year. I needed the space for the thanks! What a wonderful problem to have!

Love,
Dave, Michelle, Hannah and Ben

Friday, December 16, 2005 10:56 AM CST

Hello,

A bit of a milestone in the Lansing household...Ben got his first haircut last night since it grew back in. He kept saying, "It's like ten inches and getting too close to my eyes!" (as you can see in his recent photos, he must've been so used to being bald that any amount of hair felt close to his eyes). His last haircut was nine months ago; that was when he decided to shave it off for St. Baldrick's Day, just as it started to fall out again from chemotherapy. We were both surprised at how much I ended up taking off - it looked like a little toupee. Funny how a haircut can give you a reality check.

Love,
Michelle

Friday, December 9, 2005 10:50 AM CST

Merry Christmas to all!

If anyone is interested in seeing a real cool Christmas concert this weekend, Hannah, Ben, and I will be singing in the choir for the Smokey Express Christmas Show at St. Bronislava Church in Plover. Performances are this Friday and Saturday at 7:00 and Sunday at 6:00. Come if you can, the proceeds go to several different charities - one of which is The Ronald McDonald House in Marshfield which has been our home away from home while spending long days in Marshfield.

Have a great day!
Dad

Monday, November 28, 2005 5:31 PM CST

Hi! Just a quick update to correct an error!!

When I was told that Hannah's drawing was picked to be part of this years National Childhood Cancer Foundation Holiday season sales, I was told that her artwork would be featured on the Holiday cards AS WELL AS on the 2006 calendar. Well...someone has ordered a calendar and just received it in the mail today. Hannah's picture is NOT featured on the calendar as I was told it would be. I'm so sorry if anyone ordered a calendar specifically because of Hannah's artwork - I had no idea that it was not on there. I feel bad for Hannah because she was so excited to be a part of the calendar and I'm frustrated at the wrong information having been given to us, but hope that you all understand. Regardless if you did order a calendar, it's still for a great cause!

Please accept our sincere apologies for the error. At least we know for sure that her artwork is on the cards!

Love,
Michelle

Friday, November 18, 2005 9:58 PM CST

Hi again,

I know I'm back early, but I have some fun news that I wanted to get the word out on. I know that some of you have already received an email on the info, so you can just stop reading here if you'd like. :)

Three years ago when Hannah was six, she had submitted some artwork to a program designed for children with cancer or siblings of children with cancer. Pieces of work are selected and then made into a variety of items to be sold. The money raised from sales is used to help fund CureSearch National Childhood Cancer Foundation (NCCF). NCCF supports the Children's Oncology Group (COG), which conducts research and studies to conquer this disease. We have personally benefited from COG's work because Marshfield Clinic, along with over 200 other hospitals nationwide, has access to their network of research information. Ben's treatment protocol has been mostly dictated by COG's research. Have I got you confused yet? My own head is spinning, but hang in there with me.

Moving along...when Ben had relapsed and was in his second battle with his disease, Hannah really wanted to do something to help. She decided one way was to submit some artwork to this program. Discouraged that she wasn't chosen the first year, she decided that it wasn't meant to be. But we received a phone call today that one of her art pieces from three years ago was chosen for this year's Holiday Card selection and the 2006 calendar! She was SO excited. She was dancing and twirling and saying, "Yes! Yes! Yes!". It was sweet to see the light in her eyes, knowing that she was the one able to really make a difference for her brother. Needless to say, we are just as excited for her as she is for herself.

If you would like to view the artwork that they chose for her card and the calendar, please go to curesearch.org. Click on Support CureSearch. Click on Gift Shop. Click on 2005 Holiday Cards. Hannah's card is 'Christmas Tree'. If you click on her card, you will also see what the back will look like, which includes a photo of her and a quote from her from when she was SIX!

We have obvious gratitude for this particular organization, so we would like to do our part to get the word out and invite anyone who may be in the market for Christmas cards, note cards, calendars, or a variety of other gift items, to visit the website and consider making a purchase to help support childhood cancer research. Anyone who knows me, knows that I do not like to solicit anything, but this is important to me, so I'm willing to put my passive personality aside and risk annoying some of you. :)

We all continue to do well here - all healthy and no big issues to fight. If there was any fighting going on, it would be between my little artist and my little cancer survivor - sibling rivalry is at its peak...at least I hope this is its peak!! I remember fighting like that with my siblings, but it wasn't so appalling then. Retaliation seemed rightfully deserved most of the time. But seeing it on the other side as the parent is an eye opener. :0 Are these just my children or are there any other parents out there to vouch for me that siblings would possibly kill (or at least seriously injure) each other if given the chance? Please tell me this is normal! :)

So that’s our “exciting” news here. As always, we hope that everything in your lives are going well. Take good care!

Love,
Michelle

Friday, November 4, 2005 8:23 PM CST

Hello!

It's been some time since I've entered anything because it's been uneventful - always a good thing.

Today was Ben's second checkup since he's been off of his chemotherapy treatments. I have to admit, I woke up feeling very nervous and had myself conviced that life was about to turn back into a nightmare before we even left. I know it was needless worry, but it felt impossible to avoid.

All of his tests turned out to be perfectly normal. Ahhh...perfectly normal. Deep breath and sigh of relief! Even though this may still take some time to absorb, it's good to know that we have two more months of getting our lives pieced back together.

He will be checked again in January. We chose to make his next appointment for after we return from his Make A Wish trip to Disney World. We are looking forward to that trip and don't want anything to steal the joy of that away. We will be leaving on January 6th...just in time to celebrate his golden birthday on the 7th at Give Kids The World. What better way to celebrate a golden birthday and another year of life!

That's the latest news in our world. The kids continue to love school and to do well. I will get some photos posted of Halloween as soon as I get them developed.

Hope all is well in your world too, and if not, we send you our love to help you through a tough time. Thanks for checking in on us.

Love,
Michelle

Wednesday, October 19, 2005

Just a quick note...

Please, hold our little friend Jack and his family in your thoughts and prayers as he encounters more complications during his stem cell transplant. They're a strong group, but sure could use a hand with extra prayers and support. Thanks!!
Love,
Michelle




Monday, October 10, 2005
Hi! It's been awhile since I've added any entries simply because there's nothing new to add. I don't know why I'm even here, other than it's become a habit. We check up on all of our Caringbridge friends every day and continue to check Ben's guestbook, so thank you for continuing to check up on him.

Life here has been as normal as can be. It has been an easier adjustment than we expected. We struggled getting back into a routine so much after he ended treatment for his second diagnosis, so I just expected the same this time around too. Not really the case, thankfully!

Both he and Hannah are doing great in school and only have a few more swimming lessons to go. I've been able to get into Ben's classroom to help out a couple of times and find it to be so enjoyable to watch him interact with the group - he just blends right in and isn't a "cancer kid" anymore. I'm very proud of both of them.

What more can I say? Life is good. We are very lucky, as well as grateful, to be where we are at.

Please keep our friend, Jack, in your thoughts and prayers as he and his family are continuing to deal with his stem cell transplant. He's such a little guy and it hurts to see him, or any other child for that matter, have to endure the kind of pain he is having to go through. There is a link to his page at the bottom of Ben's home page. Feel free to leave his family a message of encouragement. I know from personal experience that it means so much to know that there are people out there thinking of you while you are trapped in such an isolated world.

Again, thanks for stopping in. I will be certain to update again after Ben's next check up. It has been moved to November, so I likely won't be back until then. In the meantime, enjoy the amazing Autumn season - my personal favorite season! :)

Love to all,
Michelle

Saturday, September 17, 2005 12:56 AM CDT

Hi Everyone! This is Ben. Just stopping in to say hello today and hope you're doing fine. I'm doing very good. I hope you guys are doing very, very good.
School's great and I have swimming lessons and that's fun. The only thing I don't like is having to get ready really, really, really fast - it's hard! My favorite class is gym. It's a nice thing to get exercise for your arms and legs.
I went to Great America. My favorite ride was the Octopus. I went on it with my dad, mom and sister. I loved it - it was, like, my favorite ride.
I'm going to Florida to Disney World for my birthday. I will be seven years old in January. That's for my Make-A-Wish, wish. I LOVE legos, so I'm excited about Lego Land!
Thank you for all of your messages and fun pictures. I like them when Mom reads them to me.

Love,
Ben

Monday, September 12, 2005 6:11 PM CDT

Hello!

Well, school has gotten off to a good start. Both of the kids continue to love their teachers and classrooms, even now that they are down to business. :) Hannah has already been sick one day and we played the role of really bad Mom and Dad and pulled them out of school one day last week for a some fun at Six Flags Great America in Gurnee, IL. It was a special event day that allowed us reduced priced tickets, as well as virtually no lines because of how few people were there, so we couldn't pass up on such an opportunity! We learned very quickly that the kids follow in Dave's footsteps and don't care for roller coasters, so I had to tackle those with other family members. :) I will give Dave some extra credit though - he did go on a couple big ones with me and managed to maintain his normal flesh color. He's a good sport. The kids did, however, LOVE the kiddie versions of roller coaster riding and found plenty of other rides to enjoy. It was a very fun, and very long day!

This past weekend, we were able to meet some new friends face to face, who we had met online through Caringbridge awhile ago. They were at a camp for children with cancer and their families, called Hozhoni. Since the camp is located nearby our home, we stopped out there to finally meet them in person. It was great to meet you, Olsens!!! Kate and her family seemed to be having a wonderful time. Thanks for taking up your free time to spend it with us, Grace!

The Finish Line 5K Walk/Run in Stevens Point is coming up on the 25th. We've walked it since 2000, when Ben was first diagnosed (it benefits the American Cancer Society), but this year I have decided to attempt to run it. To some, this may seem very trivial at only 3.2 miles, but for someone who hasn't really run since high school (no need to fill you in on how many years that is), it's going to be a bit of a challenge for me. I've been working on it for a few months and am confident I can do it...just not sure I want to view my time at the end. :) Regardless of my finishing time, it will be a going for a great cause, so it's well worth the shin splints. Anyone who'd like to join us (walking, running or just watching), PLEASE COME!! I can get you further info, so send me an email if you'd like it.

Ben has continued to feel good, other than some mild complaints of his joints aching - could be growing pains, could be from residual chemo...who knows! His hair is finally growing in around the mohawk he had going on. I'll have to get a picture on here when he gets a bit more.

It's been a luxury to jump back into life without such frequent medical visits. I was able to get up to the hospital one day last week when three of our little friends were all there at the same time (nice to see you Jack, Alec, Mady...and their mommies!). It felt very odd to walk in there with balloons in tow, rather than Ben and heavy luggage. It felt even more odd to walk out - almost like leaving our safety net of so many years. Mixed emotions were had and tears just about made their way out - I'm such a girl! :)

Thanks for checking up on Ben and continuing to pray for and keep him in your thoughts. We do appreciate you all!

Lots of love,
Michelle

Thursday, September 1, 2005 5:06 PM CDT

Hello!

A fabulous day was had by both Hannah and Ben on their first day of school. They both came home beaming and telling stories about their wonderful classrooms, teachers, friends. They also came back very hungry. And very tired. I don't think bedtime is going to be a tough one tonight. It makes me feel good to see them both so happy.

At the moment, each of them are planted in front of the television to watch a show, due to extreme fatigue! :) Hope to keep them awake long enough to eat dinner and shower.

Check out the new pics from this morning's off-to-school adventures.

Love to everyone!
Michelle

Tuesday, August 30, 2005 9:45 PM CDT

It's been awhile since I've updated because there's simply nothing to update! Ben has been doing terrific, is growing some more fuzz (still seems to be in a mohawk fashion though) and is ready to start school on Thursday. It seems like years ago that he was always going to the doctor, had a catheter that had to be cared for, and had us constantly worried about every little germ. It's been an easier adjustment this time around for us than I expected. I think after the third time, we are just realistic about the uncertaintly of the future, so why not move along with things and enjoy all of the normal things we can now do. Even having Ben take showers and baths are simple again.

Uncle Nick (known for his humorous guestbook entries) got married this past weekend, so Ben and Hannah spent a fair amount of time in a hotel pool whenever given the chance. He was like a fish and LOVED it. It was so great to be able to just let him go. He even gets to participate in swimming lessons this fall. Last fall he had only one lesson before we found out about his relapse on Sept. 20th. I can't believe 11 months have gone by! It's good to breathe again.

Thanks for stopping by and checking in on Ben! Love to you all...

Love,
Michelle

Friday, August 19, 2005 4:31 PM CDT

*****Sunday, August 21, 2005*****
Just a quick note...please keep our friend, Jack, in your thoughts and prayers as he is to be having surgery to remove his tumor tomorrow morning. His link is on the bottom of Ben's home page, so feel free to visit his page and leave he and his family a note. Thanks!
Michelle



FRIDAY.....

Things to do:

Stop chemotherapy. Check.
Get over the hump of low counts, transfusions, and hosptial stays due to chemotherapy. Check.
Have a clear ultrasound and exam. Check.
Hmmmmmmm...let's see, there was something else that we needed to do to get this cancer gig moving away from us - oh yeah...
Remove Hickman. CHECK! :)

All went well with Ben's procedure today. He was very brave about everything - too brave for a six year old. He was a little upset that the doctor wouldn't let him take the catheter home. That's good show-and-tell material and school's just around the corner! But, alas, things were smoothed over by getting to choose a new Beanie Baby to take home.

We are to go back in for another checkup at the end of October. Until then, our only job is to get back to normal.

Normal. According to Webster's Dictionary, normal is defined as "ordinary, average, usual, standard". In our world today, this is not what people typically strive for as a goal in life. In fact, normal may be considered insulting to some when being used to describe one's life. To be honest, I'm not sure what normal is anymore, so believe it or not, this transition is easier said than done. I know all of you cancer parents reading this know exactly what I mean by this. This is a wonderful stage to be at; a relief that we've reached that light at the end of the tunnel that everyone talked about and that Ben is happy, healthy and spunky. But, as many families who have been affected by cancer, this stage can also stir up a lot of confusing and conflicting feelings. Being that this is the third time we've had to readapt to being normal, this transition should come easier than in the past, but please understand if you see us struggle or seem to be appearing lost. Going from knowing that your child is "okay and healing" every week with blood tests and exams and hospital/clinic visits, to "See you in two months!" causes a bit of anxiety. I think they need to have some kind of weaning program - let us go in for labs once a week for awhile just to assure us that all is still okay, but that's not how it works. :)

So this is where we sit after the last 11 more months of craziness added on to Ben's journey - in a very good place, in a happy place, in a normal place, in a confusing place. We are celebrating "normal" with Ben's choice of dinner (Chinese food - yum! Love that boy!) and family movie night - of course with Ben's choice of movie.

To all out there who consider normal to be trifle, reconsider your goals - and to all who embrace and appreciate their normalcy - kudos to you! I will personally be looking up to you for lessons in the coming months.

Love to you all and thank you, everyone, for all of the prayers, thoughts, support, kind gestures and words. We feel we are so fortunate to have the amazing support system that we do.

To honor our beautiful friend and now angel, Chris, I will end with a quote (she was more of a quote freak than I am)...
"If you want to feel rich, just count all the things that you have that money can't buy." ~unknown source

As Chris would always say...Until there is a cure...PEACE~LOVE~HOPE.
L-I-V-E-S-T-R-O-N-G!

Love,
Michelle

Thursday, August 18, 2005 12:24 PM CDT

Hello!
Just got word from Michelle that Ben's ultrasound was all clear. No sign of recurrence! Now they are awaiting two more appointments, one of which will set the schedule for removing his Hickman cath. That will be awesome to have that gone. Anyway, just thought I would give you a quick update. Have a great afternoon!
Dad

3:45 p.m.
We're back from our appointments with great news that Ben's Hickman is HISTORY tomorrow. Yea!! Everything went well with all of his tests, but we weren't really expecting anything to rear its ugly head this early. I don't know who's more excited about tomorrow - Ben or us. No more dressing changes! No more fear of infection! No more medical supplies sitting in the corner of our dining room! No more wetsuit for Ben if he wants to swim. The list could go on, but I'll stop there. Doing the happy dance...
Michelle

Friday, August 12, 2005 6:09 PM CDT

Hello!
Ben’s been doing well so there’s really not much to write about. I took him into Stevens Point on Thursday for labs and all looked like it was continuing to get back to normal. He was supposed to go to Marshfield for his first re-evaluation to establish a baseline for us to follow from now on, but our friend, Chris, was being honored with a celebration of her life memorial service and we decided that it was more important for us to be there. For once, Ben’s health issues could safely be put on hold for something more important. Her family did a beautiful job putting everything together. As was very evident by the number of people that came to show their respects, she touched more lives than I think she could have ever understood. She is sorely missed, but wow, what an amazing testament on how to live life to the fullest and with the most determination. We are lucky to have crossed paths with her in our lifetime. She was a unique 26 year old who had a mission to provide people with happiness, despite her own suffering. She was especially fond of children with cancer and took good care to keep them upbeat with her silly guest book entries and animations on their CaringBridge pages. That was how we met her and her amazing family.
Ben’s re-evaluation will be next week Thursday instead now. He’ll have the basics done...ultra sound, chest x-ray, lab work, exam and a follow up with his Oncologist and also his Urologist. We should be there for most of the day, but it won’t be a nerve wracking appointment day- just a lot of sitting and waiting and moving on to the next appointment. Since we are so close from him being done with his chemotherapy, there shouldn’t be much of a change in his status. Hoping to find out when his Hickman cath can be history - last step to “normalcy”. His hair is beginning to grow in, but seems to only want to grow down the middle like a mohawk. I hope the rest of his nogin catches up! He said he wants to dye his hair green when it comes back in. Hmmmmmmmmmmm...a green mohawk on our six year old boy - why not?
Thanks for checking in and keeping our friends in your thoughts and prayers. Until next week...
Love,
Michelle

Sunday, August 7, 2005 2:08 PM CDT

Many of you know or have visited the web page of our good buddy Chris. It is with a heavy heart that we must tell you that she earned her wings last night. She was the most inspirational person we have encountered in our battle with cancer, serving it seemed as the Ambassador of a Cure. If you have time, visit her page. You will be in awe of the number of visits and entries in the guestbook. We feel honored to have known her and as you will see, she knew many people who felt the same way. Livestrong.
The Lansings

Friday, August 5, 2005 6:14 PM CDT

**Please keep our friend, Chris, and her family in your thoughts and prayers!**

Also, one of our smallest friends, Jack, along with his family, could use a boost and some better luck too!

Both links are at the bottom of Ben's home page.


Love,
Michelle

Thursday, August 4, 2005 11:08 AM CDT

Hello!
I certainly don't want to jinx myself, but I do believe that we may be on an uphill swing for once! Ben's labs came back looking great today, compared to the past several. Granted, he is getting injections to boost those cells, but still, he has normal levels. I feel like this past week could possibly have been the last hurdle (just knocked on wood to cover my bases). Now we just go in for his reevaluation next week, get that Hickman cath pulled, and we're on our way...again. Trying hard to think optimistic that this is "the end", but that's a tricky one for me after fighting off this ugly disease three times over. I'll keep working on it! :)
Ben and Hannah are going to be spending the night at a friend's house tonight so Dave and I can be a couple again. Looking forward to spending that alone time with him!
That's all that's new in our world right now. Hoping that all is well in yours. Thanks for checking in!
Love,
Michelle

Monday, August 1, 2005 10:01 PM CDT

Hello again,
Guess what? Not only did we have the luxury of one transfusion yesterday, but we got to turn right back around today and make an extra trip for a bonus transfusion. After lab results (in Stevens Point) came back this morning showing that his hemoglobin dropped even more (DUH!), they decided to have us return for a red blood cell transfusion...something that really could/should have been done yesterday considering he was borderline then and the likelihood of them rising by themselves was pretty slim. Don’t know if you’ve picked up on the vibe that, even though I had a feeling it was going to be this way, spending the entire day in hospital settings and a car wasn’t what I was looking to do for the second day in a row.
We did get to see our friends, Jack, Krishna and Mady (and of course their mommies too ) and since no one was susceptible to infection, we had a little play date for awhile in Ben’s room while they got his transfusion started. ( It was good to talk with you, Kerri I am hoping you guys get out of there tomorrow! Nice to see you too, Yasna - it’s so good to see that Mady is doing so well and you are well on your way to completing this course )
Both Hannah and Ben were extremely buggy and stir crazy when we first got there - a couple of wild animals. But after a “discussion”, that was put to an end and the rest of the time went better. The Benadryl that they gave Ben certainly altered his activity level :) and popping in a movie was the other key factor in sedating them enough to keep us from getting booted out, or at least making it on the list of Top Ten Most Annoying Families. Hannah made it to Group Time with Krishna and Ben fell asleep. That was pretty much our day. Doesn’t sound like much, but it managed to eat up the entire day.
On the bright side, this should be the last time that this will happen - hopefully forever, but at least for a very long time. Ben’s next appointment is scheduled for the 11th, which is a reevaluation to see where he’s at. They will be doing a chest x-ray, ultrasound, labs, and exam. After that, he will be checked every two months for awhile, then every three months, and gradually graduating to longer periods of time in between evaluations. This is where we sit and wait. Yes, it’s a good place to be, but it also can be unnerving as it feels like we’re no longer being proactive in keeping the nasty cells at bay. Not sure when the Hickman cath is coming out, but should be shortly after school begins - possibly before school starts. Yea!
Better go, I’m getting sleepy. Here’s to NO MORE HOSPITAL STAYS...we’d like to think anyway. Better days are ahead!
Love,
Michelle

Sunday, July 31, 2005 9:41 PM CDT

We almost made it to Monday without that transfusion! Yesterday Ben seemed to do pretty well. I kept him as low key as I could keep a six year old boy. Today he appeared to be getting more and more bruises, and a bump that he had gotten several days ago on his lip didn't seem to be healing. I was tucking him in for a nap this afternoon and noticed that he had patches of little red spots, called petechiae, on his legs, ankles and the palms of his hands caused by small blood vessels that have broken close to the skin...a good sign that his platelets weren't getting any better. Sure enough, his platelets had dropped from 13,000 to 4,000 since just Friday. We spent 6 1/2 hours (2 1/2 driving time) going into Marshfield for labs and a platelet transfusion. His hemoglobin has also dropped quite a bit too, so we are to go back in for labs tomorrow morning to see if a transfusion for that will be in order as well, or if they will just go up on their own. The good news is that his white counts are starting to get better, and his ANC is climbing, so it appears that he has hit his rock bottom and is beginning to recover from the last dose of chemotherapy.
Silver linings...silver linings...let's see........
1. We got to see our little man, Jack, because he was still there for treatment. It was nice to visit with Jack and his mom, Kerri. He is quite a little character. 2. Ben's other counts are beginning to climb. 3. This will (hopefully) be the last, if not, second to last, impromptu hospital trip we make for a transfusion or any other type of cancer treatment. 4. We got to watch "He's Your Dog, Charlie Brown!", which brought back childhood memories - that crazy Snoopy :) ....I think that's all I've got for now - still a little tired and cranky from worrying and wondering about him the last couple of days.
One day, much sooner than it feels at this very moment, this will all be a blur and we will be caught up in the whirlwind of school activities, choosing what we will be for Halloween and looking forward the first snowflake to fall - wait...forget that last one. No snowflakes necessary to make a happy ending! :)
Have a good night everyone!
Love,
Michelle

Friday, July 29, 2005 12:00 PM CDT

Good news...I think. Ben's labs came back very low still, but are showing signs of inching their way back up in some areas. His platelets dropped even more, as well as his hemoglobin, but they opted to hold off on the transfusion today and see what Monday labs will bring. His ANC is a "whopping" 48 now. I guess compared to yesterday's 18, that's good, but that's still getting down there. I'm glad we don't have to make an extra day trip to Marshfield, but I can't help but worry myself about him - especially over a weekend. I'm sure he'll be fine. He certainly looks/acts fine, other than some continued complaints of aches and pains in his joints. We'll just take it easy this weekend and hope that his body is beginning the process of recovery.
Have a great weekend everyone! It's so beautiful out here today - I'm glad we won't be spending it in the car and hospital.
Love,
Michelle

Thursday, July 28, 2005 2:12 PM CDT

Hello!
I took Ben in for his labs today and it turns out that they are continuing to decline. The transfusions did help a little, but they are only temporary. I'm going to have to take him back in tomorrow to recheck them and HOPE that they are on the rise - even slightly. If his platelets continue to go down, he may need to go back to Marshfield for another quick transfusion tomorrow too. Thankfully he's continued to ward off any fevers or illnesses that would put him in the slammer, despite his low ANC of 18. He is complaining of his body aching in different places and woke last night crying because he said he had a mouth sore that was bothering him, but again, no fevers, so we stay home. :)
Needless to say, this puts a damper on our weekend plans of visitors and Dave's grandma's 95th birthday bash in Portage, WI. He'll still get to see his cousins when they are in town, but he and I will need to stay behind and miss out on her celebration. Sorry Great Grandma Bernie!! We are bummed! Anyone who knows Bernadine, knows that this is not a celebration to be missed - she's one spunky woman and has been planning this party for a long time. This is one of the many things about cancer that I will not miss...missing out on special occassions.
Other than that news, things seems to be okay. You would not be able to tell his counts were so low by just looking at him - it's very deceiving. He's still happy, tries to be as active as he can (which is still a lot), and eats like there's no tomorrow. I may seem overreactive to some, but I've gotten to know his subtle signals pretty well over the years and one thing I found is that he does not listen to his body and slow down when it needs to rest. He used to be good about that, but this time around, he'll run himself into the ground before he has to stop. If he does slow down, then we know we're in trouble!
So, I guess that's about it. Hoping for better results on his labwork tomorrow...
Love,
Michelle

Tuesday, July 26, 2005 11:12 AM CDT

Hi,
Just a quick entry asking for a favor...could you all please help to fulfill a request for "storming prayers and a miracle" for our friend, Chris? Her link is on Ben's home page if you'd like to drop her a line in her guestbook. She's been a rock and inspiration for our family and the least I feel we can do for her is to get as many people rooting her and her family on. We love you Chris!
Love,
Michelle

Monday, July 25, 2005 2:25 PM CDT

9:15 p.m.........
We're now home, Ben's tank is full, and we'll just wait see how far it takes him. In the meantime, lots of taking it easy and staying away from groups and crowds.



We're back in Marshfield...but HOPEFULLY for just the afternoon and part of the evening. Ben's labs that were drawn in Stevens Point this morning came back very low so he needed to come into the hospital for two transfusions - one for his platelets and one for his hemoglobin. As usual, he looks and acts almost perfectly normal. As long as he does not have a fever, they do not have to hold him here, but if he spikes one from now until the transfusions are completed, they'll lock us up without parole. His sentencing will be determined at a later time.
He and Hannah are watching Rugrats Go Wild as I type. Hannah was mad because this "ruined" her day, but after she realized that this allowed her to be able to have a Cousins sub for lunch, watch a movie, probably go to Group Time, and have dinner "out", it's turning into a better day than we had planned for at home. Their chores for the day get to be put on hold, we weren't going to go anywhere or have anyone over because of his counts and food from home just isn't a treat. So we have all decided that rather than sulk this one out, we're going to make it like a day and adventure out. I know, we're a strange lot.
That's about all I know for now. Hoping to sleep in my own bed tonight...
Love,
Michelle

P.S. Please keep our little friend, Jack and his family, in your thoughts and prayers. He's had a number of setbacks in his treatment protocol and they've only been in this for four months, so they could use the extra prayers. Jack's parents gave me permission to post his webpage on Ben's home page, so feel free to visit it and send them a message!

Saturday, July 23, 2005 10:44 PM CDT

Hello!
We just got back (a day earlier than planned) from our little trip back to my hometown. Ben was starting to show some subtle signs of his body doing some funky things, so I took him into a clinic down there on Friday. Sure enough, his counts are dropping at a pretty good rate. It's happening a little earlier than it usually does. Don't know where this will go or take us, but my assumption and guess is that we'll be spending some hospital time soon enough. I hope I'm wrong, but we will see on Monday when he has those counts rechecked in Stevens Point. He's still relatively active and doesn't look sick, but his bloodwork is telling a different story. He amazes, as well as confuses me, with how he reacts vs. what's really going on inside. You wouldn't really know the child was sick! He keeps me on my toes, that's for sure.
We had a great visit with relatives and friends while we were able to be there. The kids both were in their element. It was a nice diversion and I'm glad we went, despite choosing to end it a day early. Thanks for having us everyone! :)
Tomorrow's supposed to be very hot, so we'll lay low.
Enjoy the rest of the weekend and I'm sure I'll be posting something early next week. Take care!
Love,
Michelle

Tuesday, July 19, 2005 0:18 AM CDT

Hi!
We are plugging away at home. Ben doesn't seem to know that he has some limitations and overdoes it. Today was another example of just that. He ended the night very tired, with nausea and I think an achy body. He seems to be able to go and go during the day and doesn't want to stop, but by the end of the day, he's shot.
We had his labwork done this morning in Stevens Point and everything looks perfect, so we're still in good shape there. He won't likely "crash" until next week sometime, if he's going to crash at all. Next lab check will be on Thursday. Hoping he continues to maintain normal results.
We're going on a little adventure to my hometown area later this week and weekend, while his counts are still up to par. Should be a lot of fun for the kids. We'll be meeting up with our friend, Sarah (see link on home page) and possibly another Caringbridge friend, Kate, along with lots of relatives. One last hoo-rah before his counts begin to decline and we possibly spend a bit more time in the hospital. Hoping for no time there, but have to be realistic also!
Tomorrow we will chill. That's all that's new in our world...tell us about what's new in yours!
Love,
Michelle

Friday, July 15, 2005 10:55 PM CDT

We are home! :)
Ben's chemo finished up around 9 p.m. and since he was feeling and looking well, they decided not to keep him overnight. He is SO full of energy and we're actually having a hard time getting him to go to sleep right now at almost 11 p.m. Everyone else in the house is ready to drop, but he wants to wrestle. This will soon end.
He's got big plans for the weekend, but we're going to try to keep him at bay a little. I think this child is made of steel - the chemo he just got was supposed to be the "hard stuff", and he's coming home to wrestle? I don't understand.
The typical thing to happen next will be that his counts will begin to drop 10-14 days after his treatment, and this is when we may (or may not hopefully) end up sitting in the hospital waiting for them to come back up. Then we wait for another 6-8 weeks for him to be reevaluated. And assuming that all looks good, his Hickman cath can be pulled out around that time as well. Then he will start to grow hair, become a first grader without a care in the world, and we will do our best to move on into a new way of living again. Not sure how long (if ever) the worry will go away, but we will do our best to put that on the side and move on.
Many have questioned...does this mean Ben is in remission? He's been "in remission" twice now, so we don't particularily care for that word. The doctor doesn't call him in remission, but describes it more like that there is no visable, viable tumor that exists at the moment. We don't know if there are cells that are lingering behind that will develop into something at a later date, so to say he's out of the woods would be overly optimistic at this point. He's didn't actually complete his treatment protocol because his body couldn't tolerate the toxicity of the drugs, but we are still holding onto the hope that what we did manage to get into his system will knock the rest of it out for good. Only time and frequent checkups will give us that answer. But, as for his status now, we are calling it that he's on a break - and hoping it's a really long one, and really hoping it's a forever one. We could all use some time away from cancer.
So...good night to all! What else can I say? It's great to be home!
Love,
Michelle

Friday, July 15, 2005 9:53 AM CDT

Good morning!
Ben awoke in a very good mood ready to play Legos! That's good, because he received a few new sets yesterday as part of his celebration. He is currently showing a volunteen how to play. He isn't complaining of any aches so far today (he was a bit last night) and has had no nausea to speak of. Breakfast consisted of cucumbers and cheese curds - something I'm sure was on many of your training tables this morning! Grandma Lansing is coming over later this morning to hang out while Mom and Dad get some lunch together. Grandma and Grandpa Ellis, Sarah, Mickenzie, Kaitlin, Hannah, and Mike are no doubt busy at the rummage sale they are holding for Ben in Stevens Point right now. Thank goodness for good weather; there was so much stuff that 90f it is outside. A big thanks to them for setting aside their lives to put that all together, and also a huge thanks to David & Sarah Haiakawa for hosting the rummage!
Dr. Joshi gave us the option of leaving late tonight after his last chemo drug is infused, which would be around 10:00. Have not talked to Michelle about that yet, and he would have to continue to do well for that to go through, but it's a great option to have. I'll trade a late night for waking up at home any day!
Well, that's it for now. For those of you checking in from work, TGIF! For those of you checking in from home, you better go outside after this! :)
Dad

Thursday, July 14, 2005 4:48 PM CDT

Hello!
Ben's day has been up and down, but overall a good one. He woke with no appetite, but didn't get sick at all. Around lunch time he actually asked for another salad from the cafeteria, and he ate it all! Thankfully so, because his party was immediately afterwards and he ended up eating some candy, cake and chips. Which is what I think has led him to where he sits now in terms of how he feels...sick. He just crashed at 4:30 - body aches, stomach hurts, very sleepy. I walked out of the room for a minute and he was out like a light when I got back in. I hope that a nap will help his discomfort, but there are other medications that can help with that if he's still uncomfortable when he gets up from his nap. You can tell the chemo is hitting him right now.
His party was wonderful. The Child Life staff decorated the playroom and lots of other staff were able to stop in since it was at noon. Most of our family was able to make it as well, so we had a full room, yummy cake, and a good time. I think that activity is contributing to his fatigue right now. It's hard to believe tomorrow will be his last dose of chemotherapy. :) :) Can't wait to get out of here on Saturday morning!
Thanks for checking in on him, leaving messages, emails, phone calls, prayers, etc. We appreciate them all!
Love,
Michelle

Wednesday, July 13, 2005 9:46 PM CDT

Hi again,
Had a great day. Ben ended up playing with Krishna until 7 p.m. - they kept each other great company. She's such a good little friend.
Just a little while ago he started to complain that his whole body ached. That was around the time that the first dose of chemo had just finished up it's six hour infusion. Second dose of the one hour infusion is going right now.
He ate really well today. We'll see what tomorrow will bring after a night of the chemo settling in.
He's very excited about his party tomorrow. He misses Dad and is wearing Dave's Stone Innovations cap to bed to be closer to him (Dave - by the way, we have your cap - hope you didn't need it!).
So, really, not much new to add. Keep him in your thoughts and prayers tomorrow morning as that seems to be his worst day. Hope you all had a nice day!
Love,
Michelle

Wednesday, July 13, 2005 1:20 PM CDT

Hello!
We are officially checked in, fluids running, and settled into our little home for a few days. The first thing Ben asked for since it was noon, was a big salad from the cafeteria. He doesn't realize that the cafeteria is also hospital food, which he continues to refuse to eat, but at least we have more options now that he'll indulge in the cafeteria food.
We had a special surprise of having Ben's buddy, Krishna - her photo is in the photo album - here with her sister getting a treatment. She and Ben have been playing since we arrived...lots of giggling and goofball play. She's such a good little friend for him. Right now we are in the Solarium and they're playing with playdough and talking about farts. At what point does the topic of bodily functions become less interesting? Apparently not quite yet.
Ben's very excited about his little celebration tomorrow for his end of chemo. Krishna is planning on attending for sure! :) We hope her family can join us as well. Again, anyone can come if they are free. I realize it's an odd time, but the invite is out there to anyone. He wants to have the party be a Lego building party, so we're bringing all of his legos and having a lego building extravaganza. Anyone coming, be prepared to get creative!
Please continue to keep our friend, Chris, as well as all of our little and big friends who are fighting hard, in your thoughts and prayers. I feel very fortunate that we are at the point that we are at right now.
I'll touch base later as the day ends. Hoping this last round doesn't give his tummy too much grief.
Take care and enjoy the warm (okay, hot) summer weather!
Love,
Michelle

Tuesday, July 12, 2005 11:17 PM CDT

Ben's labs look good enough to finally squeeze that last treatment in, so it looks like we are off and running tomorrow morning to get started. He'll be there tomorrow through Saturday. The Child Life staff is putting an end of chemo party together for him at noon on Thursday, so anyone is welcome to join us for that. Just meet us in the solarium! He'll probably be getting chemo during his party, but that doesn't seem to bother him.
I'll update more tomorrow...in the meantime, I still have to pack us up!
Love,
Michelle

Friday, July 8, 2005 8:59 PM CDT

Hi everyone,
Just an update to let you all know that everything here is going just fine and not much is new. Ben doesn't have to have his labs checked until next week on Tuesday, so we'll know for sure if he'll be able to be admitted on Wednesday for his LAST chemo. :)
We've been keeping pretty busy and having a good few days. Ben has a buddy overnight tonight, so he's a bit wired - okay, a LOT wired. But having fun. :) Not sure how I'm going to get those two convinced that sleep is a good thing, but I'll do my best!
We went to see our good friend, Chris, today. She lives in Appleton and is fighting off stomach cancer. Please say some prayers for her and her family, as they could all use some extra support and strength right now. I have her web page posted at the bottom of Ben's home page, so feel free to check in on her and leave her a message. She's been an inspiration to our family, along with countless others. The kids and I were so glad to see her again, and Dave's mom, Julie got to meet her too. The last time that we saw her was in March at the St. Baldrick's Day event. Way too long! That time lapse will not happen again! If you're reading this Chris, thanks again for the visit and I hope your appointment went well today. WE LOVE YOU!
I guess that's about it for the time being. Until next week, hopefully there will be nothing else to write about!
Love,
Michelle

Tuesday, July 5, 2005 3:11 PM CDT

Another change in plans...Ben's platelets came up, but his white count went back down, bringing his total count to an unacceptable range to get chemotherapy tomorrow. We are delaying things for a week, so he should be in the hospital from the 13th - 16th now.
Love,
Michelle

Monday, July 4, 2005 9:56 AM CDT

HAPPY 4TH!!!!
The chicken dinner for Ben on the 2nd was a HUGE success, thanks to all of our good friends, family and many, many people we don't even know. Our friends worked so hard to pull it all together - it was a humbling experience to be embraced by so many people. THANK YOU to all that had a part in it in some way, even if you couldn't be there. We personally find it difficult to be on the receiving end and accept the help, but knowing that there will be many future opportunities when we can be on the giving side again makes it easier. There were almost 500 people served and approximately $7700 was raised through the dinner, silent auction, raffles, and a variety of other things going on. This generosity will help us to finally get caught back up from the extra expenses that have tagged along with this battle. We had picture perfect weather to top it all off. I could go on and on about all of the wonderful things that happened that day and the many neat people, along with their personal stories, that we got to meet as a result. The day couldn’t have been more perfect or memorable. THANK YOU EVERYONE!!!
As for Ben and Hannah, they had a blast running around with their friends, riding bikes, eating way more sugar than any law should permit a kid to eat on one given day, and just being kids. It was so great to see the energy Ben had - it was nonstop all day long (I'm thinking the sugar helped that along)! He was very tired by the time we got home though; he asked me to carry him inside. I’m hoping he didn’t overdo it too much. One more big event to squeeze in before his last (hopefully forever last) chemotherapy treatment...fireworks tonight. They are both very excited about it. I have to admit, the child in me is too.
As for his last treatment, he is scheduled to be in on Wednesday the 6th through Saturday the 9th. They will be having a little party for him in the Peds Oncology Unit to celebrate this milestone of finishing chemotherapy (even though he’s 9 months early from his original schedule). As I mentioned before, we are calling it quits for now because the drugs are wearing on his little body and he needs a break. It could be his last one forever if nothing ever comes back, but we just simply can’t predict what the future will hold. As positive as we’d like to think, we are also very cautious about throwing our arms around the idea that he is in remission and this is all water under the bridge. Three times around does that to a parent I guess.
On a lighter note, once he has his Hickman catheter removed, we are planning to move ahead with his latest (and final - no more changing minds) Make-A-Wish, wish...going to Disney in FL! He really wants to get to Sea World, which is worked into the whole package, and swim with a dolphin. With that catheter gone, that would make it much easier to fulfill his wish. And Hannah adores all creatures, so in a sense this is her wish being granted as well. We have two wonderful people who are working with us on the wish (thank you Kristin and Judi). I really have no idea of a time frame for this happening, but hopefully shortly after his cath is pulled and we’re in the stage of just simply watching him every two months with ultra sounds or CT scans.
His counts are holding their own for the time being. I’m having them checked again tomorrow in Stevens Point to be sure that we don’t make another unnecessary trip to Marshfield on Wednesday. His platelets are the ones that are struggling to move up, so we are hoping they are up to par by tomorrow. His platelet count needs to be at 75,000 before he can receive a treatment and the last time they were checked, they were at 31,000...so we can only wait and see what his body does. Go platelets, go!
Hope you all have a great Independence Day! Thanks for checking in on us, sending good thoughts, prayers, visits, calls and all of the great stuff that keeps us up.
Love,
Michelle

Thursday, June 30, 2005 2:16 PM CDT

Hi everyone!
Ben's last tee ball game was great! He even got a putout at third base. All the kids did great, if not necessarily able to pay attention for long periods of time. They had fun, though. Root Beer floats were provided by some take charge moms - YUM! I believe that Ben, Hannah, and Michelle are taking in a matinee of "Madagascar" this afternoon. Then this weekend is the big chicken dinner at Vista Royalle campground in Bancroft, honoring Ben! What a great thing! Stop in if you are in the area and hungry for good food. Of course, who is ever hungry for bad food?
Have a great day!
Dad

Tuesday, June 28, 2005 11:41 PM CDT

Hi again,
Everthing went well with the one transfusion. They skipped doing the platelet transfusion to see if they'll just come up on their own naturally. Next lab check will be on Thursday and we can just get that done in Stevens Point. :) We ended up spending from 12-5:30 p.m. in clinic and hospital. Ben REALLY wanted to eat dinner in the cafeteria before we left (an experience he's never had since he's always been the patient that has to stay on third floor). He LOVED the experience and his eyes were much bigger than his stomach - same goes for Hannah. It was pretty cute to see his eyes light up at how many choices he had. Decisions, decisions!
His batting of the head injury :) is looking okay, so that was one less thing to worry about.
He and Hannah continued with their constant arguing, so they were dubbed 'The Bickerson's' for the day.
We are glad that Ben's "tank has been topped off", so that he (and we) can enjoy his last tee ball game tomorrow night. Those are wonderful memories that we don't want to miss out on. And soon....life will be more and more normal again! :) :) :)
Better get some sleep!
Love,
Michelle

Tuesday, June 28, 2005 1:00 PM CDT

Hello!
Well, we're back in the hospital...but only for a few hours this time. :) Ben's hemoglobin and platelets took a dive, so he's getting a transfusion (or two) this afternoon. He, Hannah and I are all hanging out in the playroom while they get him admitted, get the blood ordered, get his lab results back, etc. Not sure how long we'll be here, but I know one of the transfusions takes three hours once they get going and the other takes an hour. I know he's getting the three hour transfusion for sure, but not certain about the other as of yet. It's kind of weird being up here without any luggage - but I'm not complaining - we get to go home! :)
Yesterday Hannah and Ben were playing some baseball, and Ben's head "got in the way" of Hannah swinging the aluminum bat. Now he's got a pretty good cut (no stitches needed though) above his left eye, right on his eyebrow. Based on how much they are arguing and annoying each other (and myself!) right now, I'm wondering how much of an accident it actually was. He's made it a point to let all of the medical staff just what happened and who did it...Hannah's getting defensive...arguments begin...need I say more?
It's a good thing we're getting this done today because Ben will be good to go for his last tee ball game tomorrow night. I wouldn't want to be missing that!
Other than that, we've been keeping a very close eye on him (other than the batting incident), so he's managed to stay relatively healthy since we left here last week. His white counts and ANC are back up to normal ranges, so infection isn't such a big worry at this point.
So, that's what's new with us. We should be home sometime between after dinner and before bedtime. Yea! :)
We are getting closer and closer to being done with all of this - it makes this little setback easier to accept. Thanks for checking in on us!
Love,
Michelle

Friday, June 24, 2005 0:15 AM CDT

We are home again!!! :) We took his sad little ANC of 140 and ran with it straight out those hospital doors!
He was very wiped out today. All morning he was sleepy, then they have to gave him Benadryl before he got his platelet transfusion, so that made things even more sleepier. Of course he fought it off and stayed awake. Usually the car ride home has him out like a light, but not today. By the time we arrived home at 3 p.m., he was an emotional basketcase, so I opted for the late nap option, vs. the painfully waiting it out until bedtime option. He slept for three hours (although he guaranteed me he was not the least bit tired). I slept as well. It was a good thing. :)
Looks like the plan will be to keep a close eye on him for the next few days, stick with our original plan of one last chemo on July 6th, and then call it quits. His body is telling us to back off. After that, he can have his Hickman removed 6-8 weeks later and will have regular checkups to be sure there are no new growths. My heart feels 100 lbs. lighter as I write this, knowing that we are on the way to a much more normal lifestyle again. Of course I worry myself with it coming back, and is this too early to quit, but overall I have a good feeling that this is the right thing to do.
It's great to be back home again. He even mentioned that several times himself. He asked me on the way out, "Mom, doesn't it sometimes feel REALLY great to leave the hospital?". Yes, Ben, it does.
Love,
Michelle

Thursday, June 23, 2005 9:55 AM CDT

Hey!
Home today! Ben managed to spit out an ANC of 140, so that is good enough to get out. They will give him a platelet transfusion before he goes (kind of like topping off the tank) and then they can leave. Maybe now if we can get Hannah home tomorrow we can be a family again - dare to hope!
Dad

Wednesday, June 22, 2005 11:50 PM CDT

Me again...
Could use some input on how to be more creative with our time sitting in one room all day. Any ideas? So far we've done: legos, coloring, playdoh, listening to funky music (and occasional dancing, although only with the curtain closed!), reading, art projets, video games, television/movies, travelling the 20 steps to the playroom when we do leave the room. He's not big into puzzles or even board games (sometimes he likes them, but not often). I'd like to keep things less electronic and more creative, fun and memorable. Does anyone out there have any ideas - crazy and odd are all acceptable suggestions. :) Counting on some good ideas so get those creative juices flowing and start sending in your ideas...
Love,
Michelle

Wednesday, June 22, 2005 11:22 PM CDT

It's Mom again, waiting for some sleep to set in. Seems to elude me while we are here. Thanks to Mike and Sarah, I was able to get not one, but TWO nights in a row of great sleep. It makes such a huge difference is how the next day goes. THANK YOU GUYS!!!! :)
As Dave said eariler, Ben's counts haven't budged. Hoping that I don't have to repeat that statement tomorrow, but also not setting my hopes up too high. He's doing incredibly well - finally broke out the Playstation - first time since we've been here! I'm pretty proud of the fact that we've managed to find other things to stimulate our minds for so long. But after six days, something's got to give! He continues to act, eat, and play like his normal self, so he doesn't appear to be sick in any way. Not even one nap today. That makes for a lot of creative activity time...especially now that Group Time is not an option anymore. He spent a fair amount of time shooting caps off of syringes today. I think we may have left a few marks in the ceiling. Oops. We had his friend, Taylor, come for a visit and I got to visit with my friend (a.k.a. Taylor's mom, Loralee) for a couple of hours while the boys played. This morning and early afternoon I had the wonderful opportunity to spend some time with little Miss Hannah. We went out for lunch, went to a little zoo (very little) they have in Marshfield and then for frozen custard at Culvers. She's fun to hang around with because she likes to talk as much as I do. Imagine that! :) She's got quite the inquisitive mind. Not sure if I can keep up with her questions any more!
So, I guess that's the really long way of repeating Dave's prior message that nothing has really changed with Ben's status. We're hoping tomorrow will bring better news, but we're mentally set for another night or two.
Thanks for all of the calls, emails, guestbook entries, visits, prayers, etc. They have been a sanity saver!!!!!!! We love you all for it...
Love,
Michelle

Wednesday, June 22, 2005 11:38 AM CDT

Welcome!
Another day, still no measurable counts. So, the status is still quo. Auntie Sarah is hanging out after her overnight (THANKS SARAH!) and Hannah and Michelle are going out to lunch together. So, we wait...thanks for checking in. Be sure to sign in at the guestbook with your best (or worst) kid joke!
Dad

Tuesday, June 21, 2005 8:41 PM CDT

Hi!
Today came and went like yesterday. No new news. Ben's ANC continues to sit at 0 and his platelets and hemoglobin are coming down a bit too. He continues to be in isolation. In fact, he spurred a new policy into action, effective immediately (memos have been sent out to all staff I've been told). Yesterday we were given permission to go to Group Time (on the regular Peds floor), wearing a mask, even though he's in isolation. Apparently, there's been some miscommunication recently about what exactly isolation means, since there can be so many different levels of isolation for different patients' conditions. He was not supposed to have left the Oncology area according to his doc - and so, a new policy was born...no leaving the Oncology unit with an ANC of less than 500, unless given a written order from the doctor that it is okay. He was a bit off of 500 considering his ANC was at ZERO! Hmmmmm. He can still leave his room and go to the Oncology playroom with a mask, so at least that's still an option on the table. (If you're wondering what an ANC is, go back a few journal entries and I did my best to try to explain that one) We're such trouble makers! :)
In all other ways, he's doing great. He had an active and busy day, ate each meal like it was his last and was just like a normal six year old boy. He's not played one single PS2 game since we've been here and is watching TV for the first time today (our most recent hospital tradition has been to fall asleep to a movie). Otherwise it's been all about legos, drawing, being silly, waving at people walking by, eating and eating and eating, harassing the nurses, visiting with the hospital's volunteer clown...and he squeezed in a three hour nap too.
We can chalk up this day as a good one for sure in terms of sanity. :) Now we just need to see some bone marrow action and we'll be on a roll! So, here's to tomorrow's labs and getting some actual numbers to show up...
Love,
Michelle

Tuesday, June 21, 2005 1:43 PM CDT

Hello Webbies!
Looks like another day in the little room, still low on the blood counts. Uncle Mike stayed over last night, Auntie Sarah is staying over tonight. Yay - thanks for the help you guys! It sure breaks up the time. I sure hope he can get out for tee ball tomorrow night, but who knows? If not, I will have to make him run laps when he does get released! I am the coach, you know.
Dad

Monday, June 20, 2005 7:31 PM CDT

Hello,
Another day has passed. Pretty uneventful. Nothing to do but sit and wait things out. He's got the energy and personality of a "normal" kid, so keeping him entertained can be a challenge, but he's been really good. Tomorrow morning they will check his labs again, and hopefully we will see some kind of improvement. His ANC continues to sit at 0, so we could be here anywhere from one to several days yet. He's able to leave the room with a mask on and made it to Group Time today. Ideally, he should be staying back in the Oncology unit and not going out into the Peds floor, but due to his energy level and desire to go to Group Time, they allowed him a little more freedom today. He doesn't like the mask, but if it means he can leave the room, he'll put it on.
We are in the middle of discussing with the doctor his future treatments and how long we are going to keep at this. Obviously his body is showing signs of not being able to tolerate and recover as quickly, and we don't want to wear him down. We're going to see how long it takes for his bone marrow to recover from this setback, he'll have another treatment in July, then we'll watch and see what happens with his body after that treatment. We can then think more about whether or not stopping this altogether would be the better choice, rather than continuing with the treatments. We hope to be able to make some wise decisions with his care - it's hard to know what to do. We do love our doctor and he's very willing to work with us and do whatever we think is the best thing.
Uncle Mike has come to my rescue and is going to spend the night with Ben tonight. I will be put in a hotel room since the Ronald McDonald House is full.
Please keep Ben in your daily thoughts and prayers. Thanks for checking in - please leave a message to let us know you were here!
Love,
Michelle

Monday, June 20, 2005 9:10 AM CDT

Hi everyone,
Well, Mr. Lansing still has low counts this morning, so we are here at least another day or so. Ben is doing fine, full of energy, no fevers - just low counts. Now Michelle has to come back and stay with him (because I have to work) and she was REALLY hoping not to have to do that. SO I WILL PUT OUT THE WORD TO EVERYONE - stop in for a visit, call, send emails, send telegrams, whatever. They are the diversions we need while we are stuck in here especially on these picture perfect summer days. It's just very hard to avoid feeling isolated while you are here. Please help:)!
Talk to you later,
Dave

Sunday, June 19, 2005 9:57 PM CDT

I know, I know...I can't shut up! One last entry for the night.
Hannah and I headed for home this afternoon, in hopes that Ben will be able to be released tomorrow and Dave can just bring him home. Another trip back to Marshfield for another night's stay wouldn't be terrific, but we're trying to keep a positive outlook, rather than a negative one. Not an easy task for myself. That's been Dave's role.
When we left, Ben looked great (it always helps having Dad there, plus Grandma Lansing stopped by, so that's a bonus diversion). At this point, I don't see why he shouldn't be released tomorrow. The only thing that could possibly stop his discharge would be that his counts are still not up to par and that he gets another fever overnight...which HE WILL NOT!
Please keep us all in your thoughts and prayers as we are all feeling very tired and frustrated by this whole process. I know there are good things to come, but it's hard to see that in the midst of this chaos. Thanks for keeping up with us and hanging in there with us. We do appreciate each and every one of you for all of the many different things that you do to make life more enjoyable and understandable.
Love,
Michelle

Sunday, June 19, 2005 11:35 AM CDT

Happy Father's Day out there to all of the great dads, dads to be, and dads that have been...
We are celebrating Dave's role as Daddy together, and that's what's important to us. We're planning to order something yummy to eat in (NOT from the cafeteria) and watch a movie together. The kids have been busy making him pictures and crafts and Ben decorated his door with some pictures for Dave (and all of the other patients who pass by) to see when he got here.
Last night was a healing one for Ben. Thanks to the transfusions, he's a new child today. He got out of bed right away this morning, into actual clothes (no jammies!) and hasn't been in bed since. We even were allowed to go into the Oncology playroom area, as long as he was wearing a mask, where he and Hannah were working on some sand art. He just went back into the room for a potty break and some alone time with Dad.
His platelets and hemoglobin are back to normal, which was to be expected because of the transfusions, but the rest of his counts are still quite low. Hopefully they'll climb enough for him to be released tomorrow - it looks promising, but I hate to get his hopes up too high. There is nothing growing on the blood cultures, so that's good news too. Looks like this was all caused by just having some very low blood counts, but that still hasn't been the confirmed diagnosis as of yet.
Dave's spending the night with him while I head over to the Ronald McDonald House for an overnight.
Things are looking up!
Love,
Michelle

Saturday, June 18, 2005 11:04 PM CDT

One last update for the night. Ben seems to be doing better after his two blood transfusions. It gave him what seemed to be a little burst of spunk. He did spend the entire day in bed, either sleeping or watching TV. He ended the night complaining of more body aches and I think he's working on another fever, but overall I'd say he's made some improvements. We'll see what tomorrow brings us. No word on the blood cultures yet, so I don't know if they have grown anything. We'll see what his counts are in the morning - they'll be up because of the tranfusions. Maybe we can leave the room and get him out of bed for awhile. He ended the night complaining of body aches again, so hopefully he'll wake up feeling better than what he felt going down.
Good night!
Love,
Michelle

Saturday, June 18, 2005 1:00 PM CDT

Hi again,
We haven't learned a whole lot overnight, other than his counts are continuing to drop to a point where his ANC is 0. He's getting a platelet transfusion as I type and while he sleeps, and will be getting a red blood cell tranfusion after that. He's very tired, fevers keep coming back once the Tylenol wears off and aches a lot. He's in an isolation kind of situation - shouldn't really leave the room, not that he has any desire to get out of bed. He stated to me this morning, "I am NOT getting out of my pajamas today!". I foresee watching movies and television all day, in between sleeping. They want to keep him here until at least Monday so they can be sure the blood cultures are free of any growth, and we'll see where he's at then. Poor kiddo - he's looking pretty wiped out.
Dave and Hannah are on their way to visit for the day and will be back again tomorrow for the day. I should really be in there napping with him right now, so I think I will do just that.
Until later...
Love,
Michelle

Saturday, June 18, 2005 1:12 AM CDT

A very early good morning to you all,
I should have just kept my big mouth shut when I last wrote about staying out of the hosptial...
Ben and I arrived at the hospital tonight (or should I say last night, Friday) at 11 p.m. He had a turn for the worse that seemed to creep up on us with little warning. His counts were low as of Thursday, but he was still his normal self in terms of energy. Friday we picked Hannah up from camp (it's about 1.5 hours away) and he was running around like a normal kid. I kept him away from places where other kids would be so he wouldn't be exposed to much of anything. He went to Hannah's softball game tonight, since it was an outdoor event and we didn't have to worry about his counts being low. Normally, he should stay away from indoor crowd situations when his counts are low, but this kind of environment is okay. Can you tell I feel guilty, as if I caused this by bringing him to camp and the game? Anyway, moving along, he started to complain about having body aches on the way to the game and it got worse as the game progressed. By the time we got home from the game, he was very weak and had developed a fever. A call into the doctor had us packing and back in the car at 9:30 p.m. By the time we got here his fever had climbed about a degree and he was very weak and was whimpering. They took some blood cultures, gave him some Tylenol, started him on IV fluids and an IV antibiotic and he's now sound asleep, completely wiped out. His counts are dropping, so I would guess a transfusion of some kind is going to be ordered tomorrow. I should be trying to sleep, but my stomach is in a knot wondering if I pushed him too much. I'm told so often by the medical staff to "keep his life normal" and "don't try to limit his activity too much, because he'll naturally limit himself", so when I let my guard down and listen to that advice, I can't help but feel like this is all my fault.
Hopefully tomorrow will bring us some answers as to what's causing the fever and discomfort, but I'm fairly certain that it's a result of his counts bottoming out. Please keep him in your prayers. He's very sad to be back here and cried quite a bit when we left the house. Hannah's also struggling with being sad and emotional too...I'm sure it's scary for her to watch this happen to him so suddenly. She was crying and said she was sad because this was her first night home and she didn't want us to go. These unexpected extra visits really stink. Not that chemo is a great big treat, but at least it's scheduled and we can plan for it. With this, we are thrown all off course (as if we have any kind of course to begin with).
Okay, before I get any more negative on you all, I'm going to just sign off, try to get some sleep and hope for some answers tomorrow. Looks like we may be celebrating Father's Day here.
Love,
Michelle

Friday, June 17, 2005 9:48 PM CDT

About that low key weekend...if there's anyone out there.
Ben is headed to the hospital with a fever and lots of aches and pains.
More to come...
Dad

Thursday, June 16, 2005 6:57 PM CDT

Hi again,
Had Ben's counts checked again this morning and they are taking a dive. This is about the time they usually do, so it's not a complete surprise, but seeing those numbers can still take my breath away. His white counts are down to 400, which isn't terrible, but his platelets (blood clotting cells) and hemoglobin (red blood cells) are dropping, bringing his overall ANC (Absolute Neutrophil Count - don't expect most of you to know what that is, but it's kind of like his overall combined "score" ) down to 88. Ideally, he should have an ANC of about 500 to be out and about in public places and has to be at 1000 minimum to get chemotherapy. Basically, right now he can pick up an infection much easier than the average person and can also bruise or bleed more easily because his blood can't clot like it should. He's also more likely to develop a fever, which also means a hospital stay, during this time period. We continue to give him Neupogen injections which boost his bone marrow to produce the cells that the chemo is robbing of him, so hopefully, he will start to climb back up there soon. He usually bottoms out pretty low before that happens. I don't know if this is his point of bottoming out yet - hope it is. Pray for no fevers or hospital stays! We are to stick it out for the weekend and get his blood checked again on Monday. If his platelets and/or hemoglobin continue to drop significantly, they may have to give him a transfusion. He's only had to have three transfusions so far, so I'm hoping that we can avoid that.
Looking at him, you probably wouldn't notice too much of a difference - he's still got plenty of spunk and energy. He is getting dark circles under his eyes and did nap today (that's uncommon for him), so I can tell things are affecting him.
He is due to go back for his next treatment on July 6th (a four day stay) and we'd love to stay out of the hospital until then. But, of course, we realize that is out of our control and hands, so we'll go with whatever comes along.
So that's the latest update on our little man. Please keep him in your prayers and thoughts over the weekend.
Also, FYI...some very good - and dear - friends of ours (The Weirzbas & Yonkes) have surprised us by planning a Chicken Barbecue Dinner for Ben to help offset the mounting medical bills. If anyone would like to join us, it's on July 2nd in Bancroft at the Vista Royalle Shelter House from 3-6 p.m. They are trying to sell tickets in an attempt to get a good idea of how much chicken to order ahead of time, so if you're interested in coming, let us know and we can pass it along to them. We are truly humbled by their generous hearts - "no" was not an acceptable answer to them when they first approached us. It's very hard for us to do this type of thing, because we do not want to feel like a charity case.
Hope you all have a fabulous weekend and enjoy what's supposed to be awesome weather. We're going to take it very easy this weekend for the sake of Ben. Happy Father's Day to all of you Dads out there!
Oh, and by the way...Ben HATED the background that I chose last time and insisted he pick his own out from now on. I think he made a good choice. :)
Love,
Michelle

Monday, June 13, 2005 9:38 PM CDT

Hi everyone,
A quick check in...Ben had a great time this weekend - don't know if he could've squeezed ANY more fun into it! Went swimming every day, rode horses, played mini golf...the list goes on. He's wiped tonight. His counts didn't get checked until later this afternoon, so I'll know tomorrow where he sits with that.
My friend, Chris (www.caringbridge.org/wi/clownfish79) has a beautiful survivor movie she added to her site...check it out at www.thesurvivormovie.com if you'd like. Thanks for sharing it Chris! :)
Also, Chris and another new friend whom I've never had the pleasure of meeting, Brenda, surprised me by putting one of my favorite songs onto Ben's guestbook page for me called 'He's My Son'. Then I goofed up and deleted it somehow, so hopefully they can get it back on there. Sorry ladies!!! If you do end up listening to it, it means a lot to us because it's a song that was sung in honor of Ben in 2000 during a local Christmas concert. He had been only about 7 months into his cancer journey at that point - we have now hit the five year mark, so the journey has certainly taken longer than we ever would've imagined. The song will forever be in my heart.
Better try to go to sleep at a normal time for once. I'm actually tired tonight.
Take care everyone!
Love,
Michelle

Sunday, June 12, 2005 11:53 PM CDT

Hello!
Hope this finds you all doing well on this nice summer evening. Most of you are probably actually sleeping - something I should be doing as well.
Ben's doing terrific. He's on a little vacation from us, with Uncle Mike. Hannah went to camp this week, and Mike took her there, then brought Ben along to hang out with cousins, Grandma Ellis and himself. Mike's been learning how to care for Ben's catheter and give him Neupogen injections to boost his white cells, so that was the only way we were able to let him go. It helps to have a First Responder living in your house. :) They left on Saturday, and Ben and Mike will be returning tomorrow since he needs to have some labwork checked. He's having a blast, from what I've been told. We solved his swimming problem (not being able to go because of his catheter)...got some water proof covers for his site bandage, then got him a wet suit for swimming in. It holds everything in there nicely and the site gets minimal water. Of course, his whole site dressing needs to be changed after swimming, but Mike was good about that. I'm happy that we were able to finally figure out a way that he can get some swimming in this summer. And he looks awfully cute in that wet suit - I'll have to take a picture and post it.
It's been great to spend time alone together again - doesn't happen too often! We do miss them, but are really enjoying being a married couple "without kids" for a couple of days! It'll be good to see them again and hear about their adventures.
Hoping that labs look great tomorrow. Since he's on the Neupogen, they should be fine.
Have a nice night everyone!
Love,
Michelle

Thursday, June 9, 2005 12:58 AM CDT

Just a quick one - our computer at home is down for a few days, so I'm at Stone Innovations (Dave's work). Ben was released in a very timely fashion this morning - they actually had to wait on me because I wasn't packed or ready, expecting the usual late morning release. We just got back having lunch with Dave and are headed home now. Ben's feeling pretty good. He threw up once this morning, but did manage to eat most of his lunch when we were with Dad. That's all I've got - nice to not have a lot to report on. One more treatment in three weeks will complete his first 12 week course - only five more 12 week courses to go after that.
I'll write again when I can get back on our computer. Have a great weekend!!
Love,
Michelle

Wednesday, June 8, 2005 11:10 PM CDT

Hi everyone,
Today was a good one for Ben. He had lots of diversion and seemed to feel better. He was quite the social butterfly today. He played and read books with his cute little friend I talked about yesterday. Then he got an unexpected visit from one of his classmates - thanks Paul and Joshawa for coming! It was so good for him to have a familiar friend to hang out with. Then Grandma Lansing and Hannah came. Hannah and I spent some time together while she ate some lunch in the cafeteria and then I took a nap while they spent time with Ben. Then he met with his phsychologist for awhile. Before I knew it, he was asking if we could snuggle in bed to a movie and go to sleep. We watched 'The Sandlot' and he was out by 9:00. He didn't eat anything today, but drank well. His appetite seems to have disappeared, but I have a feeling it will be back to almost normal by tomorrow.
Not much news on anything else I guess. We haven't really had much contact with the doctor and we've not had a single resident come in to follow his case - not a bad thing.
Looks promising that we'll get out of here tomorrow morning. :) One more treatment under his belt...
Love,
Michelle

Tuesday, June 7, 2005 4:08 PM CDT

Greetings from Marshfield!
Things continue to move along with little to no complications. Ben's really quite tired, and his appetite is pretty limited, but other than that, he's in good shape. At the moment he and the big sister (also six years old) of another oncology patient are playing right behind me in one of the playrooms. They've played together in past visits since we started coming back here, but it's been awhile since we've seen her because her sister had to go for a bone marrow transplant in MN for a couple of months. They're having a blast getting reaquainted. They are playing their version of the game CLUE - make up the rules as you go and mainly play with the little pieces. She's adorable and giggles constantly. She's a wonderful diversion for him. When we were in his room, he didn't want to leave, but after I basically forced him to go to Group Time, we found her there too. Since Group Time has ended, they decided to continue to play - it's so great for him. She always brings him out of his shell and laughs at EVERYTHING that he does...and he does love a good audience! :) I love sitting here listening to their conversation as I type - so carefree and silly. I want to soak up their free spirits and keep some for myself. Where do we lose that as adults? I think I could do some serious learning from them.
Our neighbors, George and Dianne, came up with Hannah for a visit - thanks for making the trip, guys! And Erin, I'm sorry I missed out on seeing you and Riley...apparentely we missed each other by just minutes! Bummer.
Although the morning started out a little slow, this afternoon is proving to be more entertaining. Only two more days to go!!
Tomorrow Hannah and Grandma Lansing are coming for awhile and then Thursday we should get sprung from here before noon. Having visitors makes life so much more pleasant, the days go by faster, distracts Ben from feeling sick, and keeps me from going psycho, so anyone who ever wants to come during our visits...DON'T HESITATE!! That's about as blunt as I can be. :)
So, I guess that's about it. Not much new...just enjoying this time of listening to the kids playing behind me and not wanting to end this feeling of calm, peace and innocence.
Thanks for checking in, for prayers sent our way, emails, calls, visits, etc. You are all a huge part of our being able to maintain some form of sanity and normalcy, even though you may not realize it. Lots of love to everyone!
Michelle

Monday, June 6, 2005 10:59 PM CDT

Hello!
The day went by pretty smoothly. Despite some hesitation on Ben's part, I managed to coax him into going to Group Time. They painted foam cars, so it was well worth the trip for him in the end. As he got further into his treatment, he began to show definate signs of slowing down and losing his appetite, although during the day he did munch on a few things before the nausea starting settling in. So at least he's got something in his stomach to start off with. He was very tired tonight and went to sleep without a problem. Overall, I'd say today was a good one for him. I'm not sure what to expect when he wakes up in the morning, but that's not anything I can control anyway, so this control freak is trying to stop anticipating the worst. Uncle Mike will be here when he wakes up, so that's always a helpful tool in the feel better department. I'll be bunking at the RMH, thanks to Mike, and hope to relax a bit in the morning before returning for the rest of Ben's hospital stay.
Not only has he lost all of his hair on his head, but he's now down to a couple of eyelashes and a hint of eyebrows. I've noticed he rubs his eyes often, so I'm sure he gets lots of extra debris in there without those eyelashes protecting his eyes.
Well, Uncle Mike has arrived and I'm now off duty, so sleep well and I'll check back in tomorrow!
Love,
Michelle

Monday, June 6, 2005 12:41 PM CDT

We're in! :) Chemo should start around 2:00 p.m. - he's all hooked up to his fluids and things are going as quickly as they ever have. It helps that we are the ONLY ones back in the Oncology unit. It's a little lonely and quiet, but you sure get better and quicker care.
He's in a great mood today and didn't have too many issues with the hospital smells like he normally does, so we're off to a great start. He's in room 359 (phone number is now posted) - the cool winter room.
I will likely be back in the middle of the night for another update simply to kill some time during my sleepless moments. Better get going and get the rest of our things up to the room...he's watching Sponge Bob while I do the hauling. Take care everyone!
Love,
Michelle

Sunday, June 5, 2005 10:57 PM CDT

Hello!
We are all packed, ready to go again, plans for Hannah in place...please send all prayers, good thoughts and vibes, cross your fingers...whatever, that tomorrow will be a good day. Ben considers a good day being that his counts are too low to be admitted into the hospital. I consider a good day that counts are good enough to move forward and get past another treatment. I don't blame him, but would love to keep this thing rolling right along so we can be done that much sooner.
We had a great weekend, enjoying some amazing weather, aside from the occassional rain. Ben and Hannah both had sleepovers and tons of friend play time. As a result of Ben's delay in treatment we were able to see a very cool tiger display (hence the photo on his page), see Hannah play softball on Friday night, clean up our yard and get the garden planted finally. Overall, it turned out to be a good thing. Sometimes I have a hard time seeing that.
I'm just hoping and hoping that we do not encounter another delay tomorrow. I have a difficult time with the constant lack of being able to make any kind of definitive plan. The packing and unpacking for hospital visits, making plans for Hannah, and undoing plans for Hannah, mentally preparing for some "prison" time, then having to shift back into "reality", are all draining. But, life will go on, regardless of what is put on us and we will just deal. Sometimes gracefully, sometimes not so much...but we will just deal with it.
Thanks for hearing me out - I've not been the most graceful person dealing with these issues recently and look forward to getting over this little bump in my personal road.
Hoping you all have a great week and that I will be able to make my next entry in the hospital (sounds strange to hope for that!).
Love,
Michelle

Friday, June 3, 2005 1:48 PM CDT

Hello!
Alright, change of plans (otherwise known as our way of life). Ben's counts were just short of being able to start chemo today, so we are off now until Monday when he will go in to try again. Good news - Mom and Ben can make Hannah's softball game tonight. Bad news - If he goes in Monday he will miss his tee ball game Wednesday night, which is something we were hoping we could avoid. Oh well. We will have a good weekend as a family. Mom's pretty bummed about another change of plans and that she missed Hannah getting on the bus for her last day of school so that she and Ben could get to Marshfield and are now on their way back.
Thanks for checking in,
Dave

Monday, May 30, 2005 10:43 PM CDT

Hi everyone!
Just a quick update to let you know that Ben continues to be holding his own and seems to have rebounded well from his low counts...no fevers, seems to be pretty active, has been able to make it to school and tee ball and all the important stuff in life that really matter. He has only THREE days of school left! I can't believe it's almost done. It'll be a crazy busy week with all that we have to do before we take off for his next treatment on Friday, but lots of good stuff lined up...Kindergarten Awards Ceremony, tee ball game, soft ball games for Hannah, Grandma & Grandpa are coming, we're bringing baby bunnies into school for show and tell, and just the regular daily things that need to be done. It's likely you won't be hearing from me until I have some down time in the hospital, so until then, have a beautiful week! Thank you all for the emails, cards, guestbook entries/jokes, prayers and well wishes. Love to you all!
Michelle

Thursday, May 26, 2005 1:09 PM CDT

Hi all!
Just an update today. Ben had his labs done today and his counts are good, so off to school he goes! His tee ball debut went well last night, he and all the kids did great. They had a blast, and they were fun to watch. Now off to a fun Memorial Day weekend!
Dave

Monday, May 23, 2005 7:14 PM CDT

Hello,
Today didn’t quite go as planned, but it was a fine day regardless. I took Ben in for his labs this morning and they were quite low. Based on some other aspects of the lab results, he is showing that he’s likely at his “bottoming out” point and his bone marrow should start to recover quickly - as soon as tomorrow. I noticed last night and today that he was dragging, and the nurse commented about how he didn’t look too energetic, so I wasn’t too surprised with the results. Now we cross our fingers and pray that he doesn’t get any fevers in the next few days, or he’ll land himself an extra stay in the hospital. He got yet another day off of school today (big smiles on his face), which he slept a good chunk of it away. Quiet activities were the order of the day, so he reminded me that PS2 was a quiet activity. (Don’t worry, Ethan and Garett, you’ll get your Shrek2 game back soon!) He has ANOTHER day off of school tomorrow because of a follow up appointment with his Urologist in Marshfield. That doesn’t leave too many days left of Kindergarten. And then we have a First Grader! First Graders are great, but where did our little Kindergartner go?? I’m not ready to move on yet - we missed too much of Kindergarten. Despite the ups and downs of the year, Kindergarten was a wonderful experience, thanks to the great teachers and staff at his school.
We are now in full swing with tee ball and softball. Hannah’s last practice was tonight and first game is tomorrow. Ben’s first game is on Wednesday, and then Hannah has another game on Friday. Here we go...ready or not! :)
With all of the end of the school year/beginning of the summer activities going on, going to the hospital for Ben’s next treatment will be like a vacation before we dive back into life. Not that I’m complaining - normal life stuff is good life stuff.
Thanks for checking in on Ben and I’ll probably update again on Thursday. Take care everyone!
Love,
Michelle

Thursday, May 19, 2005 5:45 PM CDT

Hi Everyone,
Another quick note to let you know that Ben's holding his own and has been doing very well since Monday. He's been at school since Tuesday and we have been able to make two fun events - tee ball practice yesterday and a school field trip to the zoo today (Dave & I were able to go along with). Two more fun things under our belt that didn't have to be cancelled. :) Always a good thing in our house since we never really can commit to anything until that very moment. We've managed to miss many events and gatherings that we would've loved to have gone to, so we appreciate being able to have a life every now and again.
Ben LOVES tee ball. They got their jerseys at practice yesterday. He wore it home and I caught him admiring it when he had to take it off for bedtime, saying, "I love this jersey so much I can't stop looking at it!", and then he hugged it. He's number 37. Hannah's doing an awesome job in softball and she loves playing too. It'll be fun to watch the two of them.
I'm going to sign off now to recover from going to the zoo with the kids today. Kindergarteners have a lot of energy. They sucked what little energy I had right out of me! :)
Love to everyone,
Michelle

Monday, May 16, 2005 10:16 PM CDT

We are home again. How many times am I going to repeat that phrase? A lot I suppose, considering how many more trips lay ahead for him.
We were able to get released at a good time this morning because he was the only Oncology patient in the unit. That was very nice. He skipped out of there all happy and was a bundle of energy. He got his appetite back as soon as we hit the car, requesting pancakes from McDonald's. After one pancake though, things must've changed because he started to get queasy again. He was VERY tired (and sassy) by the time we got home. After my "NAP TIME!" announcement, came a very loud objection, which included lots of stomping and screaming - only babies need naps, I'm not tired, no one else I know has to nap, etc. After he slept for three solid hours I figured I had made the right decision on that one. His appetite finally came back around dinner and he now seems to be feeling better. Overall I'd say he's doing well, just tired from everything. I can't imagine how physically draining it is to have chemotherapy - I'm personally exhausted when we get home and I'm not even getting the meds!
Because he's ending the day so well, I will plan to send him to school in the morning, pending how he feels then, of course. He wasn't arguing with me about it at bedtime, so that's a good sign that he probably wants to get back...even though I am certain tomorrow he will give me every excuse he can think of as to why he should not have to go to school and why I should be homeschooling him. He's quite creative with his reasons too. Once he arrives at school, he loves it, has tons of friends and does really well, so it's just a game he plays with me.
So, it looks like the next time he's to check back in for another treatment is just the day after school ends - beginning of June. What a way to celebrate the end of the school year.
It is good to be home again and I am looking forward to spending the night in my own bed - last night I didn't sleep much. He sleeps great there, but I just can't seem to settle in...the IV pump doesn't lull me to sleep like it does for him.
Providing we can keep him healthy, he should have a busy couple of weeks ahead of him with all of his end of school activities. That will be a fun diversion. :) Please keep him in your prayers and thoughts that he's able to recover from the medicines in the next couple of weeks without having to go back in between treatments. Early next week is when we start to get into worry mode about every little symptom he has, as pretty much anything can land him a room in Marshfield.
Thanks for everything you all do to help keep us upbeat and moving forward with a smile (most of the time anyway).
Love,
Michelle

Sunday, May 15, 2005 6:35 PM CDT

Just a quick entry. Things are still going well and it was a nice weekend together as a family. Dave and Hannah left around 3:30 p.m. and Ben is the ONLY oncology patient back here in the unit, so it's very, very, quiet. We are in the playroom, listening to some music we brought with and just got done coloring and writing letters. He's really tired - yawning often and already talking about bedtime. I'm thinking it will be a very easy night to get him to go to bed tonight. :) His hemoglobin is a bit low, so they gave him a blood transfusion today to get that out of the way before we leave tomorrow. That's probably why he's a little wiped out today. Hopefully the transfusion will prevent an extra visit in between his treatments and we can stay home until the next round. We've got tee ball and school and field trips and a birthday party and other fun stuff that we can't miss out on!
That's really all there is to write about...these last couple of days can really drag on as we just sit and wait for the chemo to run through. We are both looking forward to seeing our home tomorrow. Thanks for checking in on us!
Love,
Michelle

Saturday, May 14, 2005 4:46 PM CDT

Hello!
Things have been going really well. It's actually been pretty uneventful. Yesterday, thanks to some Benadryl, Ben took a four hour nap, so that ate up a chunk of the day. He got out of the room a couple of times and seemed to feel pretty good, although a bit sluggish and kind of queasy. Around 9:00 p.m., he finally got the urge to eat. A nurse was headed to McDonald's, so she offered to pick him up a Happy Meal - he ate it all!
Because of his four hour nap, he didn't generate much nail painting business during the day, but kept himself pretty busy with the night nursing staff. Dave and Hannah came, so he was thrilled to be able to spend the night with Dad. Hannah and I slept great at the Ronald McDonald House.
Today has been good too. Thanks, Loralee & Taylor for the visit! He's got plenty of energy, hasn't been too queasy and is eating a little bit. Still has a strong reaction to the sight of those darn hospital trays - sometimes it almost instantly makes him throw up. Today he threw up and said it was because he was thinking about the hospital trays - hadn't even seen one!
Tonight I think the plan will be family movie night since we're all here together. It's nice to be able to be together as a family for the weekend, instead of split up into shifts. It can make for a lonely weekend.
I guess that's really all about I have to enter, thankfully. It's been uneventful in terms of medical complications and busy with more fun activities and visitors. Looking forward to Monday morning and being released!
Love,
Michelle

Friday, May 13, 2005 8:23 AM CDT

Good morning,
Well, I personally feel well rested thanks to Uncle Mike staying with Ben last night - I don't know how Mike feels though! :)
Seems that things went well last night. They watched Chicken Run (love that movie). Ben's setting up shop right now for his Nail Salon and already is working on his first customer since he did mine. He's been doing great with the nausea issue that normally causes him some grief, but yesterday he did get sick from simply seeing a cart full of food trays coming down the hall while we were out walking. He headed straight for the room and threw up! He really hates the hospital food. When the nurses do his evaluation during check in and ask him if he's allergic to anything, he always tells them (in a very serious tone) that he's allergic to the hospital food so they need to cancel his trays right away. He gets very offended if one (or even a menu) shows up at the door. It's his way of controlling his situation.
Right now he's with a student nurse, who's assigned only to him for the day, so she's the one getting her nails done. I'm sure he'll have more clients as the day goes on, because he's making a new sign to post on the door.
Dave and Hannah will be here late tonight and she and I (or she and Dave-haven't decided yet) will do the Ronald McDonald House thing. It'll be nice to have her here with us for the weekend.
Really, not much has changed and not much to write about, so I guess I'll sign off. Thanks for all the prayers, visits (loved seeing you Tom and Carol, as brief as it was for me), phone calls, emails, ect. Please keep them coming as it is our ticket to sanity!
Love,
Michelle

Thursday, May 12, 2005 11:50 AM CDT

A message from Ben...forget the tedious task of typing normal words - he just wants to tap on the keyboard for a bit. I know that we somehow goofed up his page yesterday by doing this, so hoping to reset it back to normal by allowing him to have at it again. :) Here goes!


YOUJGHFUJHTHGFGTY7R86TRHF

JGN9R8THYKJTGUTRY89YIYUTY98
7RT6GEBHGFGVN NFFHVGHRUGHVBHGYRRUGDFYTYFRY
FETFIGUYGTJJGIU#$JUFYFUVHGLIHM JGIHUHTUUTUIHI JKHIUJJGIGGIIJJGTIGUTUTGHYUR
YE756HTURYR899JFVHFFGVFHFHFHU
DUGUFGHUFHFUYFYGLBKIGOIBIGUGUFG
JFUIBFYGIFUIF7YYERTRFUYRTUYIFUD

12345678KUJGRDIUGHRGRGRGJFKJGURUG

REHGUHRFGREYEUYGTUGR11222KGFGIUJ
IGURT654UYFRETUERTYRJGURYGHR
TYRTBHTYTGR THUYUYYREYTYURNRYTYUU57453UUT
12345678999990HFVHUDFYHJHIUCHDS
YFYSFHSHHFHHHGHGRHGHHJHYGJUTUJG
RUGYHIRGYHRUTYERTUUIROKUYUYGYUR
GFYHERT457686875HFHGJHUHYF78Y776
54876U5UY7878567UY54785T8787T376
57T7887587Y78767578456R7YHTHYY7
RF6G7R7 UH785UYT7TY1!

According to Ben, this message says:
Hi! I have to potty! See ya!
Love,
Ben

Now it's Mom...things this morning have gone extremely well. He woke feeling a little sick, but didn't get sick. He even ate a bunch of graham crackers and drank some juice, and that's a rare thing on the morning after the first day of chemo. He had enough energy to get out of the room for a bit, but was looking for any excuse to go back to the room - hence the "I have to go potty" message...once in the room, he won't come back out with out a lot of encouraging. Grandma Lansing is his escort for the moment.
He slept great all night and even slept until 8 a.m.! I somehow managed to sleep in with him, getting us off to a late start in the day. But really, what does that matter when your only "appointment" is Hospital Bingo at 3 p.m.?
That's all I really have to write about - glad to not have anything of great interest to type. I may check in later, but if our day is as uneventful as it's already been, there will be no point in it.
Hope you all have a great day and we will work on getting the page back to a normal state. I don't know what in the world we did to make it look like that!
Love,
Michelle

Wednesday, May 11, 2005 7:49 PM CDT

DEAR EVERYBODY,
HI! JUST HOPING YOU'RE ALL DOING GOOD.
LOVE,
BEN

(It's Mom now...Ben patiently typed that all in and now wants to do a free for all, so here goes...)


hkghtuyhjrtmy5u784ukuijktjmh6u86rkt5jky,kj; ll,jhjtrjjtnthjtggyh68rhyfhjryhryryuyHUYFHHEGYGYBHBBBBFBHKHJJIHHGHHYU756 76456YRHYHUYTYUYUUYGUHHU##FGKH6IYIK6U097UOHOK,KGJN KHJKYU9IYUIITIHMM,HM,Y YIJIYIJYUY UUHJTU87756552122222223000+__________________________________ ________________________________________________________________________ ________________________________________________________________________ ________________________________*4$#!HJGKHYOHITHMMMKGYHJYIHKJYJGGFJHITYUT JJJTFNHTJHGTHFTUITTUHGTUTHUGTUGJTUTGHUTJHUTUTHUGUHTHGTJHTUTTU7568R78IUJTG UIJJU&^^&&^&%UTYTUUTERUTGHYYURTGRT NGNJG FKGKLLKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKK KKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKK KKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKKK KKKKKKKKKKKKKKKKKKK

That was meant to say:
Today I played Shrek 2. We changed my dressing too. I fell asleep for three hours! I waved to Allen in his room. He is here too. Sometimes I go to group time with Allen and he's nice. He's not silly. I didn't go to group time today because I fell asleep. That's all! Ben


Okay, it's Mom again. Things are going okay. He's not feeling too great right now. Usually the first day and the first morning after is the toughest for him, then he seems to perk up after that. He's laying on the couch next to me and looks like he needs to just go back to the room and lay down again, so I'm going to cut this short and get him back to the room. He says he feels sick. I have a feeling we'll be up pretty late though since he took such a long nap. I may be back later tonight, but if not tonight, then tomorrow. Later!
Love,
Michelle and Ben

Wednesday, May 11, 2005 12:59 AM CDT

Hi everyone!
We're in - counts are good and Ben's already playing some PS2 (Shrek 2 - thanks Yonke boys!). The second we hit the room, Ben took one sniff and headed for the garbage can to throw up. A bit of a pysychological side effect going on there. The doctors have always said that that usually happens with the older kids (closer to teens from what I understood). I guess that's just more evidence that he's an advanced child. :) Hee hee!
I'm sure I'll be back later for an update (maybe during one of my insomniac moments), considering there's nothing to "report" at this time.
Just wanted to let you all know that we're here, we're not going anywhere until Monday, and we'd love to hear from you. He's in room 356 this time (715-389-4356 direct line to room).
Until tonight....
Love,
Michelle

Sunday, May 8, 2005 10:47 PM CDT

Happy Mother's Day to all of the Moms out there! :)
We had a very nice day together. I even got breakfast in bed, compliments of Hannah - Raisin Bran, grape Kool-Aid and three little chocolates from her Easter stash. I could hear her downstairs scurrying around so it was extra sweet.
Ben's labs came back on Friday looking great. The Neupogen (cell booster injections) finally kicked in and he was back in school. I had the pleasure of going on a little walking field trip to the post office with the class so they could mail some letters out. It was very cute watching them purchase their own stamps, put them on and put them in the mailbox all by themselves. It was a gorgeous day out, and I got bouquets of dandelions from several of the students. I was able to stay for most of the day and helped out where help was needed. An enjoyable day!
Ben's labs were so good that we won't even have to have them checked until we go back in for his treatment on Wednesday. That's such a treat! So, a couple of normal school days are lined up for him and then off we head to Marshfield. He's cool with everything right now, even though he'll have to miss his second tee ball practice. We're making plans on things to keep us busy and he's always full of ideas...usually something to do with PS2 or watching a movie, but we'll try to get creative too. Looks like we'll spend the weekend over there as a family this time around, instead of splitting up. Hannah enjoys her occassional Ronald McDonald House visits and being part of the hosptial scene, so it will be a good opportunity for us to do it.
Hope you all had a nice weekend and all of the moms were spoiled for Mother's Day! I'll probably write next after Ben's admitted for his treatment.
Love,
Michelle

Thursday, May 5, 2005 8:56 PM CDT

This message is from Ben and he is typing it all by himself:


Dear all,
Thanks for getting on my webpage. I love all the messages you send! Hope to see you soon.
Love,
BEN


We just got done reading the latest guestbook entries to him and he wanted to say a little something back. The typing is pretty slow, so the messages may be brief, but are from the heart. :) He loves to hear from everyone and see all of the cool pictures. Thanks for keeping in touch with him in this way!
The kids had their Spring concert today. He wasn't too thrilled because he felt they were singing "baby" songs in his class. Let's just say that anyone who looked at him could clearly see how he felt about the two songs they sang - there was some eye rolling going on and very little mouth movement. One of those kids that you would look at and laugh because of the obvious lack of enthusiasm. There's always one in the group! But he managed to make it out without turning into a baby. He did look quite striking in his dress ups though. Hannah played the recorder and looked lovely herself in her springy dress. It's fun to be able to sit back and just enjoy watching them.
His energy level goes in spurts. He seems to be looking great and has lots of energy one minute, then he looks all washed out and is very tired the next. I think this medicine is already taking a bit of a toll on him, although most of the time you wouldn't really notice. I think I notice it more because I watch him like a hawk and I'm with him the most.
Tomorrow morning he goes in for another lab check in Stevens Point (cross your fingers for good numbers!) and hopefully to school for his last day of being Special Kid. I plan to spend the day at school with he and his class. They are a great group of kids and so fun to work with.
Providing his labs are okay, he'll start his next treatment next week already. Time flies! Visitors are always welcome, so if we manage to keep on schedule, feel free to come and see us! We need our outside world to come to our hospital world to stay sane! :)
We'll be in touch again soon, but in the meantime, take care, enjoy any sunshine we might have and hug someone.
Love,
Michelle

Wednesday, May 4, 2005 10:53 PM CDT

Hi again,
Just wanted to check in real quick to let you know that Ben's counts are rebounding in some areas, declining in others, but overall he's on the mend. He had a great day today. Grandma, Grandpa, Uncle Mike and I all went in and spent some time with him at school - Grandpa was a big hit with the kids of course...at one point they were all piled on top of him at recess and all you could see were his feet.
Tomorrow is school's Spring concert - Ben says singing is stupid and the songs they are singing are for babies, but he'll be cute up there anyway. Looking forward to seeing both of them perform. That's Hannah's love, but Ben could do without.
Tonight was his very first tee ball practice, with us being coaches...very fun! He was in his element out there and had a great time. This will be a fun adventure for all of us this summer. :)
Glad that his fevers have disappeared and his counts are rebounding. Looks like we could be on schedule for his next treatment on the 11th after all.
We'll check in again soon - next lab check is on Friday, but I'm sure they'll just keep getting better.
Love,
Michelle

Monday, May 2, 2005 7:28 PM CDT

Hey everyone,
Our day was one that forced me to look twice at the quotes that I have posted on Ben's main page. Needed some perspective when we got home from an unexpected (but thankfully rather "uneventful") day of doctor visits.

First of all to back track a little, here WAS my initial plan for the day...
Get Hannah on the bus, take Ben to labs in Stevens Point, bring him to school (expecting the results were going to be good enough), go grocery shopping and get some serious laundry done along with various other errands/jobs needing attention in between before the kids came home from school.

Here's what actually happened...
We started out our morning with Ben's regular 8:15 a.m. visit to the Stevens Point hospital for some labwork. He hadn't been looking too good the night before, so I suspected something might be going on with him. Sure enough, he had a lowgrade fever while we were there, and then I got a call later that his counts were very low. Next call was from Marshfield saying they needed him to come in - "pack your stuff - there's a chance you may need to stay". Great (sarcasm), but okay, whatever they say. So we haul ourselves back home (complete opposite direction by 30 minutes), pack up our things and head over to Marshfield (another hour and 20 minutes). We get there, have more labs drawn and he has an exam. Fever has completely disappeared by now and he's as active and normal looking as ever (other than being a little yellowish from his low hemoglobin level). Even though his counts were very low, his monocytes were high (really, I don't acutally know what I'm talking about - I'm just repeating what I've been told), which is an indication that his bone marrow is kicking in and producing again like it should. Therefore, since he had no fever, was active, and it appears that his other lower counts should be on the rebound based on the monocytes being so high (confused yet?), we were told we could go home. Great news! We head for home.
In the meantime, I had cancelled an appointment that he had in Stevens Point this evening to see his Psycologist (which was something that I had to cancel last week too) to try and combat some of his outbursts and anger issues. Once we found out we were NOT staying in the hospital, I called back and managed to get the appointment re-booked. Unfortunately, nobody told the doctor we were back on the schedule and we sat for an additional 20 minutes waiting for that. Not a big deal - it was good down time. We finally arrived back at home at 6:30 p.m.

Not the day I had anticipated, and really, not that big of a deal, but just didn't sit well with me today. The fact that it was SNOWING on May 2nd wasn't helping matters! It seems more and more often, the further we have gotten into this - it's been almost EIGHT MONTHS now - he seems to have more setbacks and our schedule is the most unpredictable it's ever been in our lives. It would so lovely to be able to make a plan of some sort and know that it will most likely happen. We have to literally take each day (sometimes each hour) as it comes to us, and this is not an easy thing for me personally. Really, this is how everyone should be living life, but on a much more positive spin.

Now that I am done with my self-pity speech, I do realize that this is really not a big deal in the whole scheme of things and that things could be and have been much worse. And by the way, PLEASE, no one needs to feel free to remind me of that, because I know that already, and I really don't have any desire to hear it from lots of people, though well intended I'm sure. That wasn't meant to be as rude as it sounded, just being as honest and open with you as I can.

I will end with silver linings, so you don't all think I'm just a bitter old bat:

The day is done. All is well. Ben gets to have the rest of his "Special Kid of the Week" at school even though he missed today. Ben won't miss his very first t-ball practice on Wednesday. Grandpa and Grandma are here for the first time since they returned from their winter trip to warmer climates, so he won't be missing out on the fun of having them here. We will all be sleeping in our comfy beds and under one roof. We managed to dodge an extra hospital stay in between his chemotherapy treatments.

There, I think that's about all I've got left in me for the day. Hope yours was a nice one. Thanks for lending an ear and understanding that I do have my down days and sometimes need to just put it all out there!

Here's to a great day tomorrow...
Love,
Michelle

Friday, April 29, 2005 10:36 PM CDT

Happy weekend! :)
Just a note to check in with you all. Ben has been doing fantastic since being home. He's not had any need for anti-nausea medicine and seems to have an unending amount of energy. He went back to school the day after he got home from the hospital, and has been going strong since. I realize that this can change at a moment's notice, but for now, it's nice to see him thrive and enjoy his healthy personality. We had his counts checked yesterday and they were looking very good. I hope I didn't just jinx us by saying all of that (I just knocked on some wood for good measure).
He and Hannah were off of school today and had a wonderful day playing, laughing and being very silly together. It was a pleasure to watch them. Not to say there were no fights all day long, but mostly good stuff.
Next week at school, he is "Special Kid of the Week". Every student gets a week of their own to be "Special Kid" and Ben's schedule has been so unpredictable that we haven't been able to get his week in until now. Anyone who would like to come in to his classroom and spend some time with he and his friends, read a story, have lunch with him, bring in some really cool show and tell, or whatever, is more than welcome to come. The ideas and time is limited to your schedule and imagination only. I'm trying to be sure that we have something special lined up for him each of the days and am HOPING that he is feeling well enough each of the days. Looks like we're covered for each day with a little something, but extra special people in Ben's life are more than welcome to come and meet his friends and see his school world.
Hannah continues to do well and keep herself busy between school, friends, and the farm. She's looking forward to another 4:30 a.m. wakeup call for milking tomorrow - for real! She and Dave do this every possible weekend...this is my child?? That is most definately Dave coming out in her because Ben and I don't usually even stir until they come home AFTER milking. Even then, they are all ready to get the day started and I'm just trying to peel myself from the bed and head for some coffee.
Tomorrow we will check out the annual Cultural Festival in Stevens Point. I've heard great things about it and am looking forward to taking them on a fun outing for once.
That's really about all that's going on...kind of nice for a change, huh?
Ben's next chemotherapy stay should be on May 11th as long as his body cooperates and low counts, or anything unusual doesn't cause another delay like last time. It would be nice to stay on schedule, but we realize that's not going to always be the case.
Thanks for checking in on him and our family! Until next time...
Love,
Michelle

Wednesday, April 27, 2005 10:21 AM CDT

Hi again,
I think that Ben may be spending a bit too much time with women when we are at the hospital...between myself, one of the Oncologists, the nursing staff (which is 99 percent women), the Child Life staff (all women) and the volunteers (only one man). This last visit revolved around nail polish. Ben opened up his own nail salon out of his room. He named it 'Ben's Nail Polish Place - Open' and posted a sign on his door. He ended up with over a dozen customers in two days between the staff and his visitors, and even did two pedicures as well (including Uncle Mike with Mango Orange - ha, Uncle Mike, I gave you up!). One night nurse brought him 15 little bottles of bright colors since he was complaining that I only had pink and clear with me. After he got those bottles, things just took off with his business and he had a waiting list. Of course, he was extremely creative and artsy with everyone, so not a single finger looked the same on each person. Sorry Donna, he didn't get creative until after you left - his multitude of colors didn't arrive until the following day.
Dave wasn't too sure about what we had started, but Ben ended up making $3, Ben was thrilled, we had fun and passed a lot of time, and his friends at school seem to think it's way cool. Sorry to all the moms out there in Ben's class who want to paint their nails now, considering the class is primarily made up of boys. :)
I just thought I'd warn you that if you visit him, he may ask you if you'd like a manicure or pedicure - he's already gotten Hannah taken care of since arriving home.
Think he might need some more time with men.
Love,
Michelle

Tuesday, April 26, 2005 5:33 PM CDT

The boys are back home and all is well. Ben, of course, looks and acts like a completely normal and healthy little boy - running, eating, playing, all as if nothing were out of the ordinary. Other than that smooth bald head of his, he looks completely healthy. He amazes me at how well he does with all of this - especially once he is no longer in the hospital and is back in his own environment. His counts are looking decent and at this point in time, and he looks as if he will be headed for school tomorrow already. I'll probably just drop them off and pick them up to shorten the day for him.
He was very affectionate with Hannah and I when he got home. Right now he's jumping off the couch, which he seems to think I can't hear the loud booms when he lands, so I'm going to have to sign off, be the bad guy and divert him to another activity that's actually allowed.
Love you all!
Michelle

Tuesday, April 26, 2005 2:39 PM CDT

They are coming home. :)
More later...
Love,
Michelle

Monday, April 25, 2005 12:46 PM CDT

Hi everyone,
Hope this Monday brings you a good start to the week.
We are doing well here. Ben had a good solid night of sleep last night (again, I can't say the same for myself) and seems to be feeling okay. Hasn't been sick and is actually eating some graham crackers. His hemoglobin did end up dropping further down, so they are transfusing him as I type this and as he plays Donkey Kong Country. He had a busy morning of visitors and activity. Got a fun package from Grandma Lansing (legos are already put together, Mom), had a visit from Sunshine the Clown - bearing gifts and performing some magic, his Make A Wish Foundation wish granter came to visit him, with more presents and way cool balloons, of course he had a steady flow of traffic from medical staff, the cleaning staff, and his doctor, had a visit with the pretty psychologist (always fun to talk to pretty ladies), and he also got some mail (thanks Tom and Carol!). Labwork began at 5:30 a.m., and it didn't seem to stop after that.
I wanted to take a few minutes to get caught up on emails and his web page, but now I MUST go and shower for the sake of everyone around me, since I've been unable to do so all morning with all of the chaos.
Mom and Dad - a quick story you won't believe...I actually went down to the FULL cafeteria this morning wearing what I slept in (not pajamas, but still not looking too put together), no shower first, to get some breakfast because I was booted out of the room for him to meet with his "feelings doctor". Either I'm so depressed that I just don't care anymore, or I have gained a good deal of self confidence overnight. I'm going with the self confidence theory. :)
Hoping to be released tomorrow sometime. I'll write again soon!
Love,
Michelle

Sunday, April 24, 2005 12:33 AM CDT

Hello everyone!
Dave and I had a great night alone last night and I'm all refreshed and ready to take on another hospital night. It sounds like Ben and Donna had a fun time playing together while waiting for Mike's arrival. And Ben kept Mike on his toes throughout the night with various things, so he (Mike) may need a nap today. Ben looks great and Mike said he's not been sick at all today, just a little queasy. Still not much of an appetite, but that's to be expected. His hemoglobin is down some, so there's been discussion about possibly giving him a blood transfusion tomorrow if it continues to decline. That shouldn't affect his regular release scheduled for Tuesday, unless something else comes up that we aren't expecting (fevers, low platelets, low counts in general). Crossing my fingers!
Dave's going home this afternoon and will be returning here tomorrow after work. Then I get the pleasure of going home and seeing Hannah. :) Assumming he is released on Tuesday, Dave will just bring him home and we will get on with our few weeks of normalcy until the next round of chemo. We are becoming more and more used to this routine as time goes on, so it's gotten easier on us. I'm not sure if Hannah would agree, but that's where Dave and I are at.
I'd have to say that overall, he seems to be doing well. He's certainly seeming to develop a much better sense of compassion for other children who have to be hospitalized too. I like to see that coming out in him...it's a new thing.
As always, thanks for the thoughts, prayers, good wishes, mail, email, etc......keep them coming - it's great therapy for us all!
Love,
Michelle

Saturday, April 23, 2005 4:48 PM CDT

I haven't been able to get back since I had to quickly exit last time and soon Dave and I will be leaving for the night, thanks to our WONDERFUL friend, Donna, who's coming to hang with Ben until my WONDERFUL brother (a.k.a. Uncle Mike) can get here to spend the night with him. Lots of juggling, but worth the effort - looking forward to spending a night celebrating 11 fantastic and crazy years of being married.
The rest of Ben's day has gone great. We had a lot of fun playing and laughing - he was in a great mood. Hasn't eaten or drank a single thing, but hasn't gotten sick either. He's very excited about finding out what other ways Uncle Mike can manage to get them into trouble with the nurses. A reputation has been developed and there are now expectations to be met on Mike visits.
I met a very nice family today - please keep them in your thoughts as they stumble through the very beginning stages of Neuroblastoma with their 2 1/2 year old son. They seem to be a very strong couple, but being only 11 days into diagnosis, they could use a bunch of prayers sent their way. He's the cutest little thing and he talks like a grown up! It's a riot to hear him talk.
Basically things are going just as they should be going - no fevers or unusual side effects/symptoms that are throwing us for a loop. Looks like Tuesday will be release day as long as this continues.
Thanks again for checking in on us! We love you all and appreciate having you in our lives.
Love,
Michelle

Saturday, April 23, 2005 9:29 AM CDT

Good Morning,
So far, we've had a pretty good start to the day. A bit better than yesterday. He did get sick, but not immediately upon awakening. He was very chatty and happy this morning and seemed to have a ton of energy. Once he got sick, things in that department changed, but we're already out of the room and getting ready to play a game, so I hope that speeds up getting some energy back.

A note from Ben:
I'm too a little sick to say much. Only three more days until I go home. My uncle is coming tonight. We get into mischief. I want to be done now. Thanks for all of the emails and messages.
Love,
Ben

His cold continues, but that shouldn't interfere with anything since he's not having any fevers. Oops...need to go quickly - Ben's needing to use the bathroom!
Love,
Michelle

Friday, April 22, 2005 9:32 AM CDT

Good morning,
Ben had a good night of sleep last night (as opposed to myself), but woke throwing up and feeling sick. He's also got a new cold on top of things, so they gave him some Benadryl to clear up his head. They gave it to him right through his central line, so it hit him hard and fast and he's sleeping very soundly as I type. I will be joining him just as soon as I'm off the computer. The doctors are meeting right now and will be doing rounds soon, so I should get back soon anyway. Please pray for Ben as he goes through the day - he's very pale and nauseated. We are hoping the anti-nausea meds will help alleviate that, and thankfully there are several options if it continues to get worse.
He's been extremely polite to the hospital staff and cooperating the best I've ever seen - I'm very proud of him. Last visit he was getting a little sassy to everyone - maybe feeling a little too comfortable in this environment and forgetting that he still needs to use some manners and treat people with respect. I've noticed that he also seems to be aware that there are other patients up here with cancer too, and he tries to wave to them as he passes by their rooms. He used to think he was the only one in the world with cancer, so it's good for him to understand that there are other little people his size going through the same thing. As he's grown over the past five years it's been so interesting to see the different phases that he's gone through concerning how he views cancer. I think he's finally realizing that he's not alone in it.
I suppose I better get back to the room so I don't miss the doctors...don't want to miss my only chance to have contact with them today!
Thanks for checking in on us, the prayers, kind words, guestbook entries, etc. It's nice to know we have many who we can lean on.
Love,
Michelle

Thursday, April 21, 2005 4:34 PM CDT

I'm back. Was hoping to avoid a late night entry tonight and make a better effort to sleep instead.
We are all settled into Ben's room (359), but he has yet to be started on his IV fluids. He has to have fluids given to him for at least an hour before they can even begin his chemo, so looks like he's having chemo for supper. We've gotten off to a more than usual slow start for some reason - they must be pretty busy up here. Too much childhood cancer in this world!
It actually worked out very well for timing though...when we got here, they were just starting Group Time (hospital bingo - Ben's favorite) and he got to join them without the hassle of an IV pole. He was VERY pleased with that. He won a prize (a very cool little radio with earphones - it lights up and it actually plays radio music - I may want to get in on that bingo game next time!). While he did that, I was able to haul our load of things up to the room (two loads actually - we're heavy packers and get razzed about it all the time by the staff and doctor). He's now content watching Shrek 2 while he waits for the nurse to come and "hook him up", as he calls it.
So, I guess that's really all that I have to tell at this point. He's getting so used to being up here and settles himself in quickly.
Have a great night and I'll be back in the morning.
Love,
Michelle

Thursday, April 21, 2005 10:30 AM CDT

Good morning everyone,
Just got word back about Ben's labs that were drawn in Stevens Point this morning and they are looking good. We were already all packed and ready to go, in anticipation that this would be the case, so we'll head over today. The doctor has to examine him first before he can be admitted into the hospital, but can't see him until 1 p.m., so we're going to kill some time at Grandma Lansing's until it's time for us to leave. Our house is a half hour in the opposite direction of the hospital, so it makes no sense to wait at home.
The late exam in the clinic will make for a very late start on his chemo today and possibly a late release on Tuesday, but we'll just deal...we have all the time in the world!
He's actually kind of happy to be going so that he can get one more treatment behind him. So am I. I know, it sounds odd to be "happy" about your child getting to go in for chemotherapy, but the sooner we get in there, the sooner this is all over with.
On Saturday, Dave and I will be celebrating our 11th wedding anniversary. Uncle Mike has offered to spend the night with Ben in the hospital that night so that we can have a nice dinner and evening together. Thanks Uncle Mike! I'm pretty sure they don't offer a honeymoon suite at the Ronald McDonald House :), so we have decided to splurge on ourselves and stay at a hotel (in Marshfield, of course). Not something we normally are able to do, but I think we owe it to ourselves! Everything that has happened over the past five years has brought us even closer together and that deserves some kind of celebration.
Hannah is going to spending the weekend with Grandma Julie, and she is VERY excited. Big plans to watch movies in jammies and maybe even make a trip to Portage to visit Great Grandma Bernie.
I'm sure that I will be back online sometime after Ben goes to bed tonight, and I'll post the direct line to his room then since I don't know where we will be put yet.
Take care everyone!
Love,
Michelle

Monday, April 18, 2005 1:30 PM CDT

I'm back again,
Ben's lab results from this morning are confusing me. I had kind of expected that his platelets would be on the rise by now, but instead they took a pretty good dive down to 13,000 (from 25,000 on Friday). His hemoglobin is also slowly going down as well. So far, not the the point of needing another transfusion, but still not good enough to be able to safely get in for his scheduled treatment. Frustrating to have delays and get off schedule knowing that this will just prolong the whole process, but also VERY nice to be able to enjoy this amazing weather and sunshine outside of the hospital. I was given permission to take him to school, because the rest of his counts were good - he just has to take it easy in the physical activity area and we cross our fingers that he doesn't have any big tumbles.
We are to have his labs checked again on Thursday and if his platelets are up to at least 75,000, he can be admitted as early as that day to get started up again. So, really, I can't say I know when he's going in for his next treatment, but thankfully he can get some more school time under his belt and I can embrace home and what my life was supposed to be like. :)
Love the picture of Sponge Bob, Devin and Alisa! Thanks to all who make guestbook entries to Ben and our family - you are our lifeline to sanity! Love you ALL...
Michelle

Friday, April 15, 2005 1:48 PM CDT

Hi everybody!
Another day at the lab for Ben, another day at home for Ben. His counts are very slowly moving in an upward direction which is good, but slowly. His platelets are continuing to decline though, so we have to be a little more cautious about injuries since he can bleed/bruise more easily than the average person. Other than that, he's very active (which makes it a little scary trying to keep him injury-free) and happy. We will go back on Monday and see if he will be healthy enough to have his next round of chemotherapy. In the meantime, wish us luck in keeping him reasonably safe over the weekend. As much as I'd like to, keeping him in a padded bubble isn't going to be an option.
Right now he's happily working on some homework that his teacher sent home. He likes doing the school work that he's used to doing in the classroom instead of the workbooks that I do with him when I don't have any classroom schoolwork for him.
New photos are posted, so take a peek when you can. I'll be back on Monday! Happy weekend...
Love,
Michelle

Wednesday, April 13, 2005 9:55 PM CDT

It's good to be home again and we are looking forward to a nice weekend together and trying to sort of get our worlds put back together too. Ben will be out of school for the rest of the week since his counts aren't up enough for that. Friday will bring more labwork for Ben (thankfully in Stevens Point), as well as Monday (Stevens Point also). If Monday's results come back looking okay, we will take him in to Marshfield and admit him for another six day stay. If the labs don't look good enough, we just keep checking every few days and go back for his next treatment when we can. Seems like he's been out of school more than in lately.
Being a person who likes to have a set schedule and likes to plan ahead, it's a personal battle for me, but I think I'm adjusting to this lifestyle of unpredictibility reasonably well (most days).
Ben's doing great. He has SOOOOO much energy to burn off after sitting in that room for four days. He was like Dash from the Incredibles (for those who have seen the movie) when he got unhooked from his IV pole. He ran all the way out to the car, and for those of you who have visited, you may remember it's quite a hike to get to the parking lot from Pediatrics! These are good things for me to see. Even though this icky stuff is hanging out in his body, we still have this vibrant little boy who is so full of life. Sassy, but vibrant! :) Even when I get down and miss having a normal life, seeing him running freely, with little regard for what's actually going on, is refreshing.
The next few days will bring some home schooling, playing, catching up on phone messages, mail, laundry, labwork appointments and keeping Ben away from crowded environments. We will see what next week brings. As we've learned well, planning ahead is a big mistake. This is a true test on learning to live life each day as it is given to us. I wish I didn't fail at it so much by trying too hard to predict and plan for the future.
Thanks for all of the wonderful emails, phone calls, guestbook entries, cards, etc. As I've said before, every contact that we get gives us more and more to smile about and be happy about, so keep the communication coming - in any form! We are grateful to be surrounded by so many positive people in our lives - thank you all!
Love,
Michelle

Wednesday, April 13, 2005 1:29 PM CDT

HOME TODAY!
We will now enjoy our four normal days as a family and head back to the hospital on Monday!
Nothing says party like a four day weekend!
Dave

Wednesday, April 13, 2005 10:15 AM CDT

Rumor has it that Ben & Michelle will be sprung today...
Hope so!
Dad

Tuesday, April 12, 2005 10:35 AM CDT

Good morning,
We are still in the big house and will be for at least another day. Counts are very slowly climbing, but not nearly close enough to justify sending him home. In all other ways, he is fine. No blood transufsions are being planned at the moment...just a wait and see how his body gets itself going again. Still can't leave the Oncology Unit, but he can have healthy visitors come and can go out of the room to play in the playroom in the Oncology Unit only, so I plan to get him out of that room for awhile today.
We were working on some math homework this morning when a volunteer popped his head in and asked if Mom wanted a break and Ben wanted a playmate...of course, homework has been delayed for the moment. He slept great last night and is a little disappointed that he can't come home today, but he's really taking it well - I'm impressed with how well he took the news.
Dave's mom is headed up for awhile today to visit and give me a little break. THANK YOU JULIE!!!!!
Thanks for checking in on us and have a very happy day!
Love,
Michelle

Monday, April 11, 2005 5:57 PM CDT

Final entry for the day...
We're here at least one more night, possibly more. His counts are still too low for him to be released into the world of regular germs. Hospital germs don't count as regular germs I guess. :)
We have no idea which direction his counts will go, but tomorrow morning we'll find out when they draw more labs. Once he reaches an acceptable level, they'll release him into the wild.
Once he's been released from this visit, as long as his levels reach another specific number by next week, he will still be on schedule to have his next round of chemotherapy on Monday, the 18th. So, here's to hoping for getting released tomorrow so that we can have a little time at home before starting up with chemo again.
The lack of communication issue was addressed and hopefully solved. I am stable again. :) Dave called after reading my last two entries and hesitantly asked if he was talking to his wife or the evil twin.
That's it for now. Hope you all had a nice Monday and I'm sure I'll write again tomorrow sometime. Take care!
Love,
Michelle

Monday, April 11, 2005 2:16 PM CDT

Me again,
I still don't know anything, but I wanted to add this...
looking back at my last entry from a few minutes ago, I see that the quotes I have written below Ben's photo are very much contradicting my attitude when I wrote that last entry. I am now taking a deep breath and trying to get a grip on reality, in that this is not a big deal and we are in a much better situation than some who are here, so we are thankful for that and we feel for them. Thank you for your patience with my evil twin. :)
Love,
The nicer Michelle

Monday, April 11, 2005 1:41 PM CDT

Still here...still don't really know much. It's been crazy for the doctor since it's a Monday and also his first day back from vacation, so we still haven't even seen him yet! I did manage to get the nurses to print out his labwork for me, and from what I can read, his counts are still very low. His platelet transfusion did the trick though so his platelets are at a much more normal level. It would be nice if someone who is trained to read the results could actually read them to me and give me a hint of a clue of what might possibly be going on. And, yes, you are sensing sarcasm and frustration on my part - it's just quite frustrating because I don't event know if he can leave the Oncology Unit, let alone the room, and no one can seem to answer even those simple little questions. I just talked with his RN assigned to him and she's now trying to get us some kind of answer - even just a little morsel would be nice!!!!! I'm certain she has sensed my irritaion (don't worry, I was still very nice to her) and is going to be actively trying to get me some kind of report - anything to clue me in.
Other than the frustration of not knowing how long we are going to be sitting here, or if it's even necessary for us to be sitting here, he's doing well. His energy is back, only one low grade fever last night, otherwise temps are normal, appetitie normal, activity normal, attitude normal (ugh!).
I heard through the grapevine (a CNA actually) that there was some discussion during a nurse briefing between shifts this morning, of transfusing him again today because his hemaglobin is slowing declining. But of course, since I'm the parent and all, I wouldn't really need to know about that now, would I? Okay, I know, enough with the sarcasm. This is my "other side" coming out - sorry! :)
So, obviously this entry was simply for me to vent, because I've not actually given any information about anything that's going on with Ben. I guess that we'll be staying at least another night - you all would probably know better than I at this point! So..........until I know more, or should I say, until I know SOMETHING, I will write again. And hopefully will be able to use a nicer tone and some sense of humor, so you all don't think I've turned completely psycho!
Love,
Michelle's evil twin

Sunday, April 10, 2005 10:33 AM CDT

Good morning everyone,
We had a great night of sleep last night and are feeling all refreshed. Ben's counts continue to decline, so they have decided to go ahead with the platelet transfusion today to speed his recovery up hopefully. He's pretty wiped out, but today seems to have more energy than he did yesterday, even though his counts are lower. So far, the urine culture shows no infection and they are waiting on the results of the blood culture taken yesterday. He had only one fever yesterday, so that's been a positive thing for him. He's eating/drinking like normal - just very tired. They said to expect to get home on Monday (at the very earliest) or Tuesday, depending on which way his counts go. Hoping not to be here past Tuesday! Looks like the chemo taking its toll is the blame for this visit.
He's in better spirits today - yesterday he was very sad and cried off and on often. Dave's coming to spend the night tonight in the hospital with Ben, while I sleep at the Ronald McDonald House and Hannah sleeps over at Grandma Lansing's house. Geez...we're all over the place! :) He'll go back to work tomorrow until Ben is sprung from this joint.
I'll check back later - enjoy your Sunday!
Love,
Michelle

Saturday, April 9, 2005 2:40 PM CDT

Good afternoon,
Ben's managed to land a bonus trip to the hospital today. He woke with a fever and when his labs were drawn, his counts are very low. He's able to leave his room, but cannot leave the Oncology Unit because he's too suseptible to infection right now. Won't know if he's got an infection of some kind or if it's just simply the chemotherapy doing the nasty part of its job until we get some results back from the blood cultures that were taken. Looks like a platelet transfusion may be in order possibly tomorrow, but you never really know which direction his body will go over the next several hours. They've got him on a general antibiotic until they can figure out the source (if any) of what's caused the fever and low counts. So basically, all I can actually tell you for certain is that we are in the hospital and don't know when we will be leaving. Hopefully sooner than later, but we'll take each day as it comes and go from there.
He was very sad to have to leave home because he was supposed to have a friend sleep over tonight. And he just doesn't want to be here in the first place regardless of what kind of plans he had lined up. His mood has gotten lighter as we've gotten settled into the room, so I think he's okay now. These are the times when I have to really embrace the "take it one day at a time" concept.
I will keep the page updated as I know more, but my guess is that we are just going to be here for 2-3 days and find out nothing specific.
In the meantime, enjoy the weekend and GET OUTSIDE - it's amazing out there! Enjoy it extra for us as we can only look out the window. Have a wonderful day! :)
Love,
Michelle

Thursday, April 7, 2005 11:21 AM CDT

A happy hello from Almond - it's SO nice outside!!! To hear birds chirping, see the sun and smell fresh spring air - it doesn't get a whole lot better than that.
Ben has been doing very well, but poor Hannah has been battling an icky stomach thing. She's back at school for the first time this week, but she was pretty wiped from whatever it was that hit her. She seems to be okay now, so hopefully it will stay clear. Today I am disinfecting the whole house while the kids are at school. :)
Ben's going to be meeting with the wish granters from Make-A-Wish Foundation tonight. He's SO excited. Believe it or not, he decided that he wants him room redecorated - in a sports theme. He was way more excited about that than going to Disney, a NASCAR race, or anything else that was offered. He absolutely cannot wait! I asked him if he'd like to go to Target with me to look for some ideas for his room and he said, "No way, that'd be way too tempting", since he knew we weren't going to be actually purchasing things that day. At least he knows his limits! :) Every single day he asks if this is the day his room is getting redecorated. I don't think he has grasped the concept that it won't be an overnight process, but we're trying to get it through to him.
He had labs done again this morning and everything's looking good. His platelets are dropping (which can make him more prone to bruising and bleeding than normal), but they're still within a decent range, so off to school he went. We can see some things dropping, so hopefully the Neupogen injections that we give him to boost his white cells will do the trick in keeping them up to a normal range. As much school as we can squeeze in is a good thing. He's scheduled to go back into the hosptial for another round of chemotherapy on the 18th for a 6 day stay, so I'm crossing my fingers he can stay in school until then.
Other than that, he's still a cute but very sassy little boy and continues to make our lives "interesting" in the very normal sense that five year old boys do.
Thanks for checking in on us. We know there are lots of events/parties/gatherings coming up in the next few months. We are going to try our hardest to make it to anything that we can, but our lives are so very unpredictable that I can't make any promises and apologize in advance if we miss seeing any of you. Our thoughts are always there!
Love,
Michelle

Sunday, April 3, 2005 3:03 PM CDT

Hello - it's Spring out today! :)
Things at the Lansing household have been relatively low key this weekend. Ben started to feel back to normal, but then Hannah started having some trouble with a persistant fever, headaches, tummy pains and general achiness. Sounds like she caught yet another version of the flu bug. She's keeping herself busy by reading lots of books, doing word searches, watching Animal Planet, and sleeping. She did feel well enough to go outside and read in the rocking chair while Ben and I got out for some much needed fresh air and outdoor things needing attention. They both woke up happy and energetic this morning, so I thought she had gotten over the hump, but it hit her later in the morning. They even made me breakfast in bed (how sweet, but I sure hope they washed their hands and I don't get the ick too). While they were playing well together this morning, she convinced Ben to give that loose tooth the final yank. After some persuasion, he did it! Now he's down two teeth. Although, the new one had already grown in right behind it, so there's not much of a gap. Regardless, he ran right upstairs and put it under his pillow so he wouldn't forget tonight. Let's hope the Tooth Fairy doesn't forget to make the exchange (mental note - put a sticky note by my alarm clock).
Tomorrow brings some more lab work for Ben and probably a day off of school for Hannah. Ben's results will likely be fine, so he'll go to school later in the morning. It seems like a very long time that they have BOTH been in school at the same time.
Dave's having to work all weekend, so he hasn't been able to get out and really enjoy the weather - not something that sits well with him. Now that we gained an hour, he should be able to see the house in daylight again and spend more time outside after work.
Enjoy the beautiful weather (for those of you midwesterners) and let the sun work it's magic! :)
Love,
Michelle

Friday, April 1, 2005 11:47 AM CST

Hello,
All is well here. Ben's counts are very high due to the Neupogen injections that we are giving him (to raise his white counts), so it makes him feel like he has the flu - very achy joints and tired. I kept him home with me for the day because it was only a half day at school and we had to spend part of the morning in Stevens Point getting his labs done anyway. Not worth the 1 1/2 hours he would've been able to be at school. In all other ways, he seems to be feeling great. A bit of naseau hits him when he smells a strong odor (bacon, alcohol wipes, coffee, etc.), but otherwise his appetite's pretty good. He gets bursts of energy and is very active, but then tires easily afterwards. He even suggested that he do some "quiet" activities when we got home from labs this morning, instead of playing baseball outside, like he'd originally planned on doing. He's good at monitoring himself.
As for the rest of us, we are good. Spring is showing it's face, which always gives us extra energy and a new season to look forward to. Dave has signed the kids up for t-ball and softball and he and I will be coaching the Kindergarten t-ball team. Ben's really excited about being able to wear a jersy with a number on it. And his little neighbor friend just gave him some spikes that he's grown out of, so he can't wait to wear those too. We're not sure how Hannah's team is going to work out - they've only had three girls sign up for her age group, so they may have to join the bigger girls team. I'm hoping this isn't too hard on the younger ones. If it doesn't work out, Dave's already got her lined up to be an "assistant coach" for Ben's team. :)
Last night Ben, Dave and the neighbor boys were out practicing some ball. A little pre-season activity in the back yard - very nice to see.
We'll be back in for more lab work on Monday, but I suspect Ben will be attending the rest of the school day once we get the results. School is so good for him and he needs to get back and interact with little people again. Thanks for checking in on us! Have a great weekend...
Love,
Michelle

Wednesday, March 30, 2005 9:32 PM CST

WE ARE HOME! :)
It's "miraculous" how Ben felt better as soon as we walked out of the room. For someone who didn't want to get out of bed all day long, he was running down the hall on our way out. Hmmmmmmmmm. It was good to see him energetic again anyway. Looking forward to a cozy night in our own beds.
He's to head back in for labs (in Stevens Point) on Friday to see where his counts are at, then again every Monday and Thursday until he has his next round of chemo in 2 1/2 weeks.
Until then, he is concentrating hard on removing his second loose tooth. It's ready to go, but he's not quite ready to make that final pull.
Probably back to school by Monday, but we'll see how things affect him in the next couple of days. Looks great at the moment!
Until next time...
Love,
Michelle

Wednesday, March 30, 2005 10:24 AM CST

Good morning,
I'm just getting back from the cafeteria for a little breakfast and then off to the clinic pharmacy to pick up Ben's Neupogen (shots for boosting his white cells as they will begin dropping after he leaves here). He's watching The Incredibles (for the fourth time since we've been here) and just relaxing in bed. He had a great night of good solid sleep last night, as did I. :) He's continuing to have issues with nausea and doesn't want to eat or drink anything, but that goes with the territory. Still not getting sick though, so I'm happy to see that. He's VERY tired and doesn't have an interest in moving about much. He never left the room once yesterday, and that's unusual for him. Hopefully we'll get out and wander around the unit today.
We just got GREAT news...we're coming home tonight instead of tomorrow morning. We won't be able to leave until close to 9 p.m., but tomorrow morning we will be waking up in our own beds! Yea! Since we were able to get the chemotherapy started earlier this time around, we're getting the chance to get him home a bit earlier. We're so excited for this unexpected twist.
That's about all I have for news today. Looking forward to getting home tonight. :)
Love,
Michelle

Tuesday, March 29, 2005 5:08 PM CST

Good evening,
Things here are going well. Ben's appetite is no longer, but he's managing to keep from getting sick. He did have a short streak of a taste for hot chocolate this morning - 3 cups - but that's gone too. He and Uncle Mike had fun this morning, apparently breaking hospital rules and causing trouble. He was very tired this afternoon - had a big fight to get him to climb into bed for a nap, but once he got there he was out in less than 3 minutes and slept for over an hour and a half. He woke in a much better mood, as opposed to the foul one that he (and I) went down with. He and I both agreed to agree that we were both cranky and needed that nap afterall. Grandma Lansing came for a visit, so he's hanging out with her playing with some legos.
There's really not a whole lot to write about...we're just getting through the day and looking forward to Thursday morning. He took out some of his anger with being in the hosptial by popping bubbles that we dubbed as cancer cells. It seemed to really help him fight his frustration with this process. I know it sounds silly, but whatever works. He was pretending he was Mr. Incredible from "The Incredibles" and was doing all sorts of superhero moves to pop the bubbles like he was fighting them.
Hoping that things continue to go as well for him as possible. He does seem to be doing good considering the junk they are putting in him.
I'll write later.
Love,
Michelle

Monday, March 28, 2005 12:18 AM CST

Hi everyone,
We are here in Marshfield and finally got the thumbs up that Ben's counts are high enough to go ahead with the chemotherapy. He just sqeaked by, but they're within acceptable range. :) They'll be getting him started with his six hour drip of the first drug around 2 p.m. and then follow up with a one hour drip of a second drug. Same thing will be repeated tomorrow and then on Wednesday it will just be the one hour drug. Thursday should bring us home.
Hannah is with us (no school today) and she's been a wonderful companion to both of us. They are now sitting down trying to make a dent in the many overdue thank you notes that we have to write...please be patient - they're coming! Your kindness has not been overlooked and we want to be certain that you are each thanked properly. I know that we are backed up as far as before Valentine's Day, but we'll keep plugging away at it. Thanks for being so understanding!
Hope you all had a nice Easter. We're glad to have spent it at home. The Easter bunny was very generous with the chocolate this year...guess who did the shopping!
Uncle Mike is coming to spend the night with Ben tonight so that I can get Hannah home and on the bus tomorrow morning. I'll be back first thing in the morning on Tuesday and will stay until we are sprung loose.
I'm really hoping that Ben does okay with this round of chemotherapy - it can be a little tougher on him than the other stuff. And now that he sort of knows what's coming, he notices every bit of nausea that floats his way. He's already instructed the nurse that he does not want any trays brought anywhere near the room because they make him queasy - even the sight of them. Thankfully they don't take him as being too bossy - just a kid who knows what works while we're here and what doesn't.
I guess that's about all I really have to write at the moment. I'll probably check in tonight after Hannah and I get home, or tomorrow sometime. Take care everybody!
Love,
Michelle

Tuesday, March 22, 2005 6:07 PM CST

Didn't realize that Dave had already put in an entry earlier today - sorry to drag you through my much more negative entry!
Love,
Michelle

Tuesday, March 22, 2005 5:33 PM CST

Hi,
We got all packed up and made our way over to Marshfield this morning only to find out (after two appointments and two hours) that Ben's blood counts are too low for him to safely receive chemotherapy at this time. They aren't terribly low, just enough that chemo is not an option. He has actually been instructed to go to school for the rest of the week, so don't misunderstand me that he's "really sick". I guess the plan is that we take him in Stevens Point on Friday to have more labs drawn, to be certain that the numbers are climbing like the doctor is expecting for them to be doing, then check back into the hospital on Monday morning to try again. I also misunderstood and found out that this next round will be the three days of chemo (four day stay), tougher one. I packed and hauled so much stuff over for a six day stay, thinking that Easter morning we'd be there.

Frustrations: the day by day unknown; the travel there only to be sent home, knowing that it's not as if we're getting a bonus "no chemo" but rather just delaying this whole treatment plan; the packing and the unpacking and the repacking; the planning and the un-planning and the re-planning involved to get Hannah's schedule in order during our absence - basically not having any idea what each appointment or day will bring us, but still having to be able to manage to keep things normal for us, yet still be ready to pack up and go whenever. If having to be ready to go at any time was because we were going on a surprise trip to some tropical destination, I wouldn't have such an issue with it! :)

Silver linings: Easter is now at home; we're glad he's in good hands and they won't do anything that could really harm him; we're home and get an extra few nights in our own beds; he's not having a serious medical situation; we know there's a reason for everything that happens.

I know there are more frustrations than silver linings and that this is such a trivial thing in the whole scheme of things...just feeling a little whiny today. Unfortunately for you all, you have to listen to me whine! :)

Overall, things have been going very well. St. Baldrick's was a blast and Ben's running around like any perfectly healthy child should.

Have a great Easter weekend - we will! :)

Love,
Michelle

Tuesday, March 22, 2005 4:02 PM CST

Hi everyone!
OK, no chemo this week. Ben & Mom got to the hospital, labs were drawn and his counts were too low to get juiced up! Not that we could tell, he's been bouncing around as normal this week. So he will get labs drawn on Friday and if all is good he will go in next Monday. Maybe now we will get a chance to visit cousins Clare and Maureen when they are at Uncle Matt's house this weekend and spend a holiday at home. But it would have been nice to have a plan and be able to stick to it, too. Oh well.
Dad

Saturday, March 19, 2005 7:50 PM CST

Hi everyone,
Hope all is well with everyone - for those of you in winter weather, I hope that you survived the storm last night! We had quite a storm up here.
Despite how nasty it did get, we had a wonderful turnout for the St. Baldrick's Day event! Everything went well and we ended up having 95 people (yes, you read that right) shave their heads to help raise money and awareness for childhood cancer research! It was a chaotic and fun evening and we hope that we exceeded our goal of raising $25,000. We should know in several days what we ended up with. Feel free to check out the website (www.stbaldricks.org) over the next week or two to see pictures of all of our shavees and how bald really is beautiful! I'll be working on that in the next few days. :) We should also have a more accurate listing of our total funds raised in about two weeks. Overall, it was a great night and we had so much fun!
Our brave little Hannah decided to step up and have her head shaved for Ben too. It was kind of a spontaneous thing, although she'd been thinking of it ever since last year. She's absolutely beautiful and I'll get some photos posted of all of them soon. We are VERY proud of her for being so brave. There was really no stopping her even if we wanted to - she had her mind set and anyone that knows Miss Lansing, knows that she's a very determined little person.
Ben's hair had just started to fall out from the chemotherapy a couple of days before the event, so it was excellent timing for him to have his head shaved. He and his seven friends all did it and they are WAY cute. He's got a great circle of buddies for support! He was having them take turns pulling out bits of his hair at school on Friday. He's definately gotten over his fear of being laughed at for losing his hair!
I want to thank EVERYONE who was involved in any way to make this event such a succecss.
We had the pleasure of meeting another person from the Caringbridge world recently - Chris. She even made the effort to brave the nasty weather despite living an hour away, just to come to St. Baldrick's. She's such an inspiration and I've added the link to her web page on Ben's home page if you'd like to "meet" her (I've stolen some of her web page ideas too - she's very creative with her page and gave me some tips on how to have some fun with it). Thanks for coming, Chris - we really enjoyed meeting you and getting to know you better and look forward to getting to know you more! :)
Now that St. Baldrick's Day is over, it feels like going to the hospital on Tuesday - Sunday with Ben will be a mini vacation. :) Well, not for him I'm sure.
He and Hannah have had a rough week this past week trying to stay healthy and in school...between the two of them, I think I had someone home with me four of the five days. The stomach bug thing didn't seem to move out of the house like I had thought it had. It looks like things are better now though (I just knocked on wood).
I'll keep you posted next week when Ben's in the hospital on how he's doing. This next dose should be a little more intense, but I'm hoping he'll continue to do well with it. In the meantime, take good care - and go sledding or something!
Love,
Michelle

Wednesday, March 16, 2005 5:17 PM CST

Okay, I can't resist one more plug for St. Baldrick's Day coming up this Friday the 18th. For those of you who have no clue what I'm talking about, please visit www.stbaldricks.org and take a look at our location (Stevens Point - UWSP). One of things I'm most proud of is that Ben has a team set up called 'Ben's Buds' and there are 7 kindergarten friends (including Ben) and two adult friends who have joined forces with his team to raise money for childhood cancer research. They are all going to shave their heads on Friday, along with about 70 others, ranging from groups of firefighters, police officers, farmers, teachers, and many individuals who felt compelled to do it (or got suckered into it) for whatever personal reason. The event is going to be so much fun and I just wanted to send out a reminder to anyone who would like to come, PLEASE COME!! There's no admission fee and there will be lots of free yummy food to eat, drinks for all, children's activities to keep the little ones busy, and live music in addition to the main (or should I say 'mane') event of watching a bunch of people transform their looks and get bald! Ben and his friends are SO excited to be doing this together and have thus far raised $1590.00 as a group! Not to discredit what the MANY others are doing, but this is Ben's page, so I can brag a bit about he and his buds here. :) And they are definately the cutest team out there (sorry other teams!), so check out their picture on the website. I'll also post it with his photos on this page.
And...my very handsome husband also had his television debut on a local morning show this morning doing a live spot about our St. Baldrick's Day event in Stevens Point, along with two of the participating police officers. One of the officers shaved the other's head while Dave answered some questions about the event. I must say, they did a great job, and Pat...you look great!
As you can tell, I am very excited and proud of what we (as in, a group of friends...not just "us") have accomplished over the last several months of planning and would love for you to all enjoy it with us as well.
Okay, off the "Be Brave, Go Bald" soapbox again, and onto other things...
Ben's doing good. I think he's finally gotten rid of the stomach bug, but he did manage to pass it along to the rest of us to enjoy. Hannah's missed a few days of school and Dave and I have skipped a few meals as a result. What a treat (dripping with sarcasm). But I THINK we are all back and ready to face the world again. Good timing too, because Ben's due to go back in for his next treatment on Tuesday next week (22nd). We will be there from Tuesday through Sunday (Easter) morning, so it looks like we'll be incorporating the Easter Bunny into the hospital routine. Makes for more interesting memories of holidays. :)
Hannah's doing great with school, taking care of the animals at home, and going to the farm with Dad a few nights a week. She's so responsible for a nine year old!
I guess that about covers everything since I've last written. Not a whole lot has happened, which is always a good thing.
Thanks for checking in on us and we hope to see many of you on Friday at the St. Baldrick's Day event (see website for time/location details)!
Love,
Michelle

Thursday, March 10, 2005 0:32 AM CST

We had a false hospital admit this evening. Ben was feeling sick all day and had varying temperatures, so when I called the clinic, they told me to bring him in and expect to be admitted. So, we packed our stuff up and headed over, getting there around 6:30 p.m. After waiting for some lab results for 2 1/2 hours, we were told he probably has a stomach virus and his counts are good enough to fight this off at home. So around 9:30 we were discharged, only to have him vomit in the hallway on our way out. Ahhh, what a wonderful evening it was. :) But we are home and sleeping in our own beds, so that makes us happy people. Looks like another school day tomorrow for Ben bites the dust. One of these days he'll get back there!
Love,
Michelle

Wednesday, March 9, 2005 9:13 AM CST

Hello to all,
Things here have been pretty good. Ben stayed home from school on Monday because he wasn't feeling very good, but went to school yesterday and had a GREAT day. He even lost his very first tooth in gym class (check out the new photo). It was a big day for him.
This morning he woke up looking pale and feeling sick again, so he's hanging out with me for the day. Hopefully tomorrow will bring better health for him, but we'll just take it one day at a time. For now, snuggling him back to health is the plan unless things take a turn for the worse. I suspect he's got a virus because I was sick yesterday too.
Not much else new. Have a great day!
Love,
Michelle

Sunday, March 6, 2005 10:49 AM CST

Home again!
One treatment down...uh, a bunch more to go. :) But a perfect visit it was! Dave and Ben just arrived home from the hospital. With a little persistence from Ben (telling the doctor he should be in the hosptial with release forms early), they were discharged around 9:30! Pretty good for a weekend discharge.
He's doing excellent. Doesn't even seem to have had chemotherapy, although we found out that his dose this time was a lot lower than usual because it was his first post-op chemotherapy treatment. Next time he'll get the regular dose, so we may start seeing adverse reactions then. In the meantime, we'll take this wonderful visit and run with it.
Ben and Hannah just got in from walking the bunnies around and are already fighting. Apparently Hannah "yelled" at Ben because he doesn't walk them right, and a fight ensued. Ahhh, back to the real world. :)
Based on how Ben looks and is acting, school will be the order for the day tomorrow.
Hey, check out the St. Baldrick's website (www.stbaldricks.org) when you get a chance. Three of Ben's buddies from school have set up a team and are shaving their heads for him! Photos are posted so you can see his cute little friends. Just click on their team name, "Ben's Buds" to see them. While you're there, check out our location's whole site. We've got lots of people lined up to shave their heads - last count was 42! You can also view our local kids that are being honored. And, of course, you ALL are invited to come and join us that night as well - March 18th - it should be a lot of fun. Okay, I'm getting off my St. Baldrick's Day soapbox now. :) I know some of you are sick to death of hearing about it!
Have a wonderful Sunday and upcoming week. I have a good feeling we will!
Love,
Michelle

Thursday, March 3, 2005 4:55 PM CST

Hi again,
Everything here is going just great. Ben's having no problems whatsoever other than that first night of nausea. He's eating and drinking pretty good - not normal, but MUCH better than he usually does when he's here. He went to play Hospital Bingo at Group Time and even sat at the table with the other patients (something he's never done - usually he sits away from the group on the couch so he doesn't have to interact with them as much). AND, he introduced himself to the group, which he usually asks me to do for him. I bribed him with extra PS2 time for that one, but it was worth it to see him gradually come out of his shell.
He and Uncle Mike had a good time last night and were up at 4:30 a.m.! I, on the other hand, was sound asleep at the hotel until 8:30 a.m. :) Needless to say, I'm completely refreshed, thanks to Mike's help. And I also got to spend some time with my girlfriend last night, Donna, who generously came all the way here just to steal me away for dinner and adult conversation (THANKS Donna!) while Uncle Mike played the typical uncle games with Ben...you know, like passing gas and laughing about it. :)
Ben got a wonderful phone call from Mrs. Ramczyk's First Grade class today, shouting out a loud hello and goodbye to him, and having him chat with one of his buddies, Garett. Very sweet and it brought a big smile to his face.
So, basically, things are going as great as they could ever go. Thanks for checking in on us and thanks for the web page messages, phone calls, prayers, cards, etc...they ALL help each of us more than you would imagine.
Love,
Michelle

Tuesday, March 1, 2005 3:39 PM CST

Hello,
We are here at the hospital and all settled in for Ben's next round of chemotherapy. He won't be getting started on his first dose until 4:00 p.m., so he's in Group Time making a snowman project right now. He was very excited about coming back to the hosptial, so there have been no struggles whatsoever. This environment must be some kind of comfort zone for him. He's doing awesome.
Nothing for news...should be home on Sunday.
Feel free to drop in for a visit anytime this week - as always, company is welcome!
I've posted his room number and direct phone line to his room on his home page, so calls are welcome as well. Outside contact is good - hint, hint! :)
Oh, and I made a mistake in my last entry about the names of Hannah's rabbits...they are named Thumper (we found out he's a boy) and Nibbles - not Twitch (and she's a girl). And, no, we did not plan to have a boy and a girl, but I think we can safely say that there may be some Thumper and Nibbles Jrs. to be given away in the future.
Have a great rest of the day!
Love,
Michelle

Thursday, February 24, 2005 8:51 AM CST

Hello again!
Ben's stent is no longer...he was very pleased. He did fantastic with everything. They even put the stent in a biohazard bag and sent it home with him...when the doctor gave it to him, Ben's face lit up and he said he was bringing it to school for show and tell. Kind of gross to me, but WAY cool for a Kindergartener for show and tell. Now everything is back to normal...back to school, recess and gym. Progress is great!
Tuesday he's being checked in for his next dose of chemo and we'll move forward from there. The light at the end of the tunnel gets closer with each procedure we get checked off of his long list.
Hannah had a great birthday on the 22nd. Between getting two rabbits (yes, real live rabbits) and a kareoke machine, among the many other gifts she received, she claimed this to be her best birthday ever and that being nine was going to be her best year yet. So, we have two new members of the family...Thumper and Twitch. Hannah's birthday party with her friends is this weekend. Should be a good time!
I hope that everything is well with you and your families. Have a wonderful rest of the week and weekend!
Love,
Michelle

Tuesday, February 22, 2005 10:25 AM CST

Ben and I spent the day at Marshfield yesterday getting his post op exams done, talking about the removing the stent scheduled for tomorrow and getting back on his chemotherapy schedule. We didn’t learn much that we didn’t already know. Because Ben’s situation is unique we can’t really plan much beyond 12 week periods of time, but as a tentative plan he will have chemotherapy for anywhere from 6-18 months, depending on how his kidney tolerates it. We could even be forced to quit as early as 3 months if the kidney is reacting negatively, but the doctor would like to see a minimum of 6 months, and if he can handle it, as close as we can get to the “protocol” of 18 months. Every 12 weeks he will be reevaluated and hopefully his kidney will hang in there for us. The chemotherapy will be the exact same schedule/dose as he had before surgery, every three weeks. The hospital stays will range from 6 days for some, to 4 days for others, depending on which drugs he’ll be getting at the time. He is scheduled to start his first round on Tuesday, providing he’s healthy and the stent removal surgery doesn’t cause any new issues. Our world is based on a lot of “ifs” and “as long as…”. This is not a complaint – we are glad that he’s generally a healthy kid and hasn’t had many major setbacks.
He’s in school for the day and will be able to go on Thursday, Friday and Monday before we hit the hospital’s 3rd floor – the first of many visits to come. He actually says he misses the hospital and is looking forward to going back. I think the video games might be luring him. His doctor said it makes sense…everyone’s nice to him there, he’s being waited on, his schedule if fairly predictable when he’s there, he gets to play video games that he doesn’t have at home – who wouldn’t want that (well, except for the vomiting and feeling sick part anyway)?
So that’s the latest…not much new as I said.
Our friend, Sarah, has a friend named Emma (Emma’s web page link is on Sarah’s web page) that is experiencing cancer at its ugliest. Please keep the whole family in your thoughts and prayers as they deal with what lies ahead of them. I cannot even imagine the turmoil that this family is experiencing and am hopeful for any kind of peace that can be directed their way.
Thanks for checking in on us!
Love,
Michelle

Saturday, February 19, 2005 10:29 AM CST

Hi,
All is well here. Looking forward to getting some more direction on Monday. Mainly wanted to write to ask for you all to keep our little friend, Sarah, in your thoughts and prayers as she's in the middle of going through her stem cell transplant and it's a difficult time for her and her family. Click on the link at the bottom of Ben's home page to check on her status if you'd like. Thanks!
Love,
Michelle

Wednesday, February 16, 2005 1:34 PM CST

Hi!
Things with Ben are going great. He returned to school yesterday and had an awesome day. He was so happy when he got home and you could see how much good being a regular kid does him. Of course, this morning, he gave me the whole 'you know I don't like school and you're being mean to me by making me go ALL the time'...and on and on. Considering he hasn't been to school since January 24th, his pleas didn't tug at my heart like they have in the past. Uncle Mike and his friend even went to have lunch with he and his friends on his first day back.
So, not much to tell you...his incision is healing perfectly, he's not needing much Tylenol for his tummy pains these days, and he's growing lots of hair back since he's been off of the chemotherapy since before Christmas. Other than the stent continuing to annoy him periodically, he's in great shape.
I'm enjoying this week of having a regular schedule and try not to think about when things have to get started up again once chemotherapy begins. Hopefully things will go as smoothly for that portion of his treatment as they have so far for everything else. It's good to be this far without dealing with lots of setbacks.
Have a great day!
Love,
Michelle

Thursday, February 10, 2005 9:39 PM CST

Hello everyone,
Ben's recovery is going very well. He has been home with me all week and we're going to make our first back to school visit tomorrow to attend his Valentine's Day class party at the end of the day. He doesn't complain too much about pain from his incision, but the stent is definately causing him some grief. He'll be getting that out on the 23rd, so until then, it's Benadryl and Tylenol to help curb that irritation. We'll be heading back over to Marshfield for his post-op exams and to discuss his chemotherapy regimen on Monday the 21st. Looks like school may be in order for next week then, with some restrictions on activity (recess, gym). He looks and acts like nothing has ever even happened to him - it's pretty amazing to us.
He's been working on school and Valentine's at home this week. He has a difficult time concentrating on school work at home. We will start to work on his thank you notes next, but be patient with us, as it is a process to get him to write. Hannah has always loved to write, but he's not the biggest fan of it. He's more into the numbers thing...loves counting, reading and writing numbers. Numbers on football jerseys, numbers on Nascar cars, numbers on speed limit signs, reading us the scores of football & baseball games, and unfortunately, memorizing the age of anyone who will tell him how old they are. Keep that in mind if he asks how old you are...lie if you feel the need to keep it on the low side, because his brain is like a steel trap with those ages. Debbie Yonke knows what I'm talking about. :)
Anyway, that's about it for news. Thankfully it's been very uneventful and I have little to report on his state of health. Life is good. :)
Take care,
Michelle

Sunday, February 6, 2005 8:21 PM CST

Home sweet home! There's nothing like it. We were pretty big homebodies to begin with, so this isn't going to help with that much. :)
Ben is doing terrific! We are so amazed at the strength that he's gained over just a few days. To see how well he gets around the house isn't something I would've believed was possible a couple of days ago. He was so ready to get going this morning that he buzzed the nurse twice to ask her to come and unhook him from his IV. Looking at him, you'd never know he's been through anything. He's awesome about self-monitoring his activity level. He took a long overdue shower tonight and his incision looks good at this point.
The plan will be to take him in to check his kidney function this week (thankfully we can do that right in Stevens Point) and then the following week we'll take him back to Marshfield for post-op exams, labs, to remove the stent, maybe have an ultrasound and to discuss his upcoming chemotherapy regimen. He should be starting chemotherapy the following week providing he's still doing well. We still aren't certain how long he'll be having it, but we do know that he will be taking the same drugs that he'd been on before surgery, taking them every three weeks (assuming there are no setbacks) and it's possible this may go on for a year and a half. So we still have a way to go, but it's so great to get over this hurdle so smoothly and know that we can move closer to the end that much more quickly.
The kidney appears to be in great shape and is continuing to function as we had hoped. He's really holding his own! He's our little superhero. :)
This week I plan to keep him home to recover and we'll see what next week will bring. Hopefully we can stop in school for a visit or two before he goes back, but the flu is going around quite a bit and I'd hate to expose him to that for no good reason. I know he misses his friends and will be glad to get back into his regular routine of being a normal kid again.
Thanks to all who came to visit, called, sent cards, said prayers, emailed, brought food to our house, etc. We feel so lucky to have a great support system in place and know that we aren't in this thing all alone.
Visitors at the house are more than welcome. I know Ben and I will need to see faces other than eachothers after a few days. :)
Hoping for an uneventful week or two at home...
Love,
Michelle

Sunday, February 6, 2005 10:06 AM CST

Hooray, hooray!!! We are coming home today!!!
Dad

Saturday, February 5, 2005 10:45 AM CST

Wow, what a difference a day an make! Ben had a busy afternoon of being out of the room. Hannah came for awhile and she and Dad went home for the night. Then our neighbors, the Yonkes, visited for a couple of hours. He was pretty tired by the end of the night and slept all night long without a problem. When he woke up, he was in great spirits and joking around with me. He's now had his epidural and his foley removed as of this morning...yea!!! After all of the chaos this morning of doctors, nurses, taking a walk, and having those tubes removed, he's now taking a nap with Aunt Sarah. The next step is to work on removing the bandage from his tummy and he's very nervous about that. He's been putting it off for awhile now, but today it's got to go. So, needless to say, he's making great progress!
AND...it looks like he may be released tomorrow sometime, depending on how he does today and tonight. I have a feeling that today is going to be a very productive one in getting better now that the foley is gone. He did call it "stupid foley" and gave it a nasty look as the nurse took it away and threw it out, as if he was going to be sure he got the last word in at that thing.
Dave and Hannah are coming this afternoon and she and I will head home tonight after Dave gets some dinner. Then the boys will come home tomorrow hopefully. But right now, I'm going to get my stinky self over to the Ronald McDonald House and take a shower and get something to eat. I also owe Ben a Knight for earning his stars, so he reminded me to make a stop at Walmart on my way back.
Thanks again for checking in on Ben - things are looking up! :)
Love,
Michelle

Friday, February 4, 2005 11:45 AM CST

Good almost-afternoon,
Today is going much better. All of the hard work Ben did yesterday is paying off and he's starting to move around a little better. Still isn't an easy road, but improvement is there. He also seems to be in better spirits today and isn't quite so angry with everyone. He's on a "progress & cooperation incentive program" where he's earning stars for each not-so-fun thing he has to do to get better and when he reaches a certain number of stars, he gets to pick out a new Knights of Kingdom lego guy. He's already got one in mind (actually two) so he's been doing all of his exercises more willingly than before. Right now he and Dad are watching yet another episode of Sponge Bob, and he's resting in his bed after being out in one of the playroom chairs for quite awhile. A change in position and scenery is so good for him (and us). We got a surprise visit from Uncle Tom and Aunt Carol...thanks for visiting guys! It's always good to see people from the outside world. :) Visits are good for all of us, so if you want to make the trip, feel free to come! Just don't come if you are sick please! :) Hannah is coming up today - she's taking a half day off of school and we are all excited to see her again. This will be the first time she'll have been up here.
There's been some talk about him going home as early as tomorrow afternoon or Sunday, but I think that's really pushing it. I would guess Sunday or Monday at the latest would be more realistic.
The epidural is going to stay in for one more day for pain control and of course that darn foley is still in place. Ben's more and more aware of its presence each day and it has become the enemy. Looks like his fevers are starting to fade, so we're hoping that's a sign his lungs are starting to clear up. They took some chest xrays as a precaution this morning, just to be certain that's not an issue.
I guess that's about all that's going on here. Dave is planning to go home for an overnight tonight and be back tomorrow. We're all looking forward to getting there, but in the meantime, things are looking up.
I'll check in later...
Love,
Michelle

Thursday, February 3, 2005 5:32 PM CST

Ben's kind of having a rough afternoon with the challanges of recovery. The coughing, walking, moving, breathing into the device thing that I don't know the name of :) ...it's all hard for him and he's really scared. When he was little all he wanted to do was to get to the playroom to play, so recovery was much quicker and easier. He didn't know where the pain was coming from and just kind of ignored it. But now he has a much better idea of what causes this pain and how to avoid making it happen - sitting very still, not coughing, resisting the breathing device. It's a definate struggle, but we can also see definate improvement even over just the course of this day. I know he doesn't see it, but we can tell he's getting stronger. He's pretty discouraged and frustrated, which of course, who can blame him?? He's angry with all of us and feels like no one else understands. It's difficult to watch him having to go through all of this and still be the support system, cheerleader, calm and collected coach and good-decision-making-parent without losing all sense of reason myself. Which is why I am out here at the computer for a short break to recollect myself and let you all know that his physical body is improving, but his spirit is not. I don't think that it will be hard to regain that, even in a day or two, once things start getting less painful, but it's not fun to watch. Tomorrow he'll be getting his epidural removed as I said earlier, but I was mistaken about the foley cath - unfortunately for him, that will be the last thing to go.
I do need to get back to the room. Have a great evening!
Love,
Michelle

Thursday, February 3, 2005 12:19 PM CST

Hi,
Things have been going pretty well. Ben's trying hard to keep up on his coughing to get all of the gunk moving out, but it's painful for him, so he's very guarded about it. He ended up taking three walks to the bathroom yesterday, with the final one being productive. :) Funny to think about how our focus changes on such an event. He was able to get the NG tube out of his nose this morning, but they'll wait to remove his epidural and foley cath until tomorrow sometime. He's very anxious to say his goodbyes to the foley! I think if given the choice, the NG tube would've stayed in place if he could've had the foley gone. We were able to get him out of bed for a short walk across the room this morning. He was pretty upset with all who were involved, and had a few choice words for us all, but he did a great job and hopefully that'll help speed his recovery up a bit. He's expected to do that at least two more times today. Again, not very happy about it, but he's being brave and cooperating regardless. He's graduated to clear liquids now, but isn't too interested in much. He's had a few sips of Sprite so far. He's still got a little bit of a fever battle going on, but if we can get him to clear up his lungs a bit, they think that will solve the problem. They're drawing blood cultures too though, in case it's anything else we need to be concerned about.
Right now he's resting with Grandma Julie in the room after his workout this morning. He had a surprise and nice visit from Aunt Roseann and Uncle Ron this morning too so he's had a busy day.
We're very proud of how well he's handling everything and telling us how he's feeling. He lets us know when he's scared, hurting, whatever...it makes it so much easier for us to be able to help him. The last two times, he was too little to be able to communicate with us like this, so that maturity difference has helped us handle it better as well.
Thanks for all of the great messages. I'm able to print them out so I can take them back to the room and read them to him. His attention span is pretty short so we don't get too far with them (he usually falls asleep on me when I read to him), but he knows you all care and that his world is still out there and waiting for him to come back to it.
Love,
Michelle

Wednesday, February 2, 2005 7:22 PM CST

Hi everyone!
Ben is doing well. His surgeon, Dr. Thomalla said that he could get his NG tube, catheter, and epidural taken out as soon as his bowels return to active duty. So, they gave him something to help with that. Enough said. Starts with "supp".
He just got up and took a slow and steady trip to the bathroom, but to no avail. Oh well, the trip was impressive enough. We are keeping an eye on an occasional fever, so he needs to cough more to clean the junk out of his lungs. He is pretty apprehensive about that, but with some nagging by mom and dad he gives it a try. Every little bit helps.
Grandma Julie was here for most of the day to give us parents a few shifts off, and Aunt Sarah is coming tonight for the overnight shift. Wow, what great help we have! This surgery recovery is definitely going much smoother because of his age and with all the help we have received. A good night's sleep makes a world of difference.
Thanks for all your great messages and encouragement, Ben really likes to hear that everyone cares. We will keep you updated as we go!
Dad

Wednesday, February 2, 2005 9:41 AM CST

Good morning all!
Ben had a wonderful night last night. Thanks to extra nighttime help from Uncle Brad, Dave and I were able to get some rest during the night at a motel that the Ronald McDonald House got us set up in. Dave was back in Ben's room by 5 a.m. and it sounds like his night was uneventful. His pain control has been very effective so far. He's gotten a couple of tubes and IVs taken off of him in the last half hour and they are preparing to move him into the regular oncology room later this morning. They are packed FULL in the entire Pediatric unit (ICU, Oncology, General) and doing lots of moving patients around to accomodate all of the new admits. Ben's not considered critical, so he's next in line to go out to "the floor". I don't know what the deal is, but they had 19 kids admitted yesterday alone! Needless to say, the Ronald McDonald House is full and has a waiting list of 9 families. We will continue to stay at the motel room until they can get us in.
Grandma Julie is here visiting right now. Ben's not really too responsive to many things, although he is awake. We do get lots of weak nods and shakes of the head when we ask him questions and even some thumbs ups and waves when people say hello. He ate one ice chip this morning and then spit the other one out...not the milk he was wanting! He's been very brave and such a trooper through all of this. The doctors said that he is looking really well. I guess that's about all I have for news now. It's been pretty uneventful...no complaints there!!!!
Hannah had a fun day and night playing with her cousins yesterday. I'm sure it really helped more than I can imagine to keep her mind occupied. She's off to school today, so some of her normal routine should be good for her. Of course, we miss her lots and look forward to one of her "squeezy" hugs. :)
I'm sure one of us will be back with another update at least once more today. Thank you for all of the nice messages of encouragement. It's nice to know that our regular world does exist out there and there are people thinking of and praying for Ben. Take care and have a great day!
Love,
Michelle

Tuesday, February 1, 2005 5:38 PM CST

Okay, so surgery is done and everything went as well as could have been hoped for. It appears that they've been able to remove the tumor as well as a reasonable amount of the margins around it, although there's a possible leak in the urine collecting system. They've put in a stint that will stay for about 10 days in case it does leak.
He's been admitted into the PICU for at least one night, possibly two. He's very sleepy right now and Dave is staying with him while I get ourselves figured out where we're going to be staying. The Ronald McDonald House is full, but they are able to place us in a motel room if the status hasn't changed since I spoke with them this morning. He hasn't really woken up yet, but he did manage to tell us that he only had a little bit of pain and that he wanted milk. Hey, the boy is from Wisconsin...he wants his dairy! Unfortunately for him, ice chips may be the only thing he'll be able to have and that won't even be until tomorrow. I'm not sure how he'll react to that "rule" once he's more alert, but my guess is it's not going to be pleasant.
According to the doctors, he's doing really well and they are expecting only good things. Tonight will be the night to really watch for things, but we are hoping it will be free of any complications.
Again, one of us will be back with more updates, but in the meantime, I'm going to try to get some things lined up for the evening. Take care!
Love,
Michelle

Tuesday, February 1, 2005 1:57 PM CST

Still waiting...but just heard from the nurse in surgery that everything's going well so far. They were just going to start to work on removing the tumor. He felt it'd be another couple of hours or so before they were done. They're hoping to not have to remove the kidney and then autotransplant it, but that's an option they'll entertain if they are having a problem getting access to the area they need to be in. They will be calling us back sometime in the 3:00 hour to update us on how things are going or if they are finished. Afterwards, he will be taken directly to the PICU, so he won't have to be stuck in the post-op room, which causes him a lot of anxiety when he's waking up. That will be nice because we'll both be able to go and see him right away - normally only one person is allowed back in the post-op area.
He did exceptional going with the doctors. We were so impressed and proud about how brave he was. It is pretty much torture to sit and wait, but we're making the best of it. Thanks for thinking of us and keeping Ben in your prayers. I'm anxious to see him very soon.
Love,
Michelle

Tuesday, February 1, 2005 11:55 AM CST

Hi all,
Ben went in with no muss, no fuss at about 10:30. We will keep you posted!
Dad

Monday, January 31, 2005 10:10 AM CST

Good morning everyone,
We have been given the thumbs up for Ben's surgery tomorrow. I took him in to our Stevens Point doctor for another pre-op exam and he and the surgeon have agreed that this is our window of opportunity to go for it. So we are back in the planning mode and hoping that nothing happens between now and then!
Hannah has been down with the flu since Wednesday night, so our house needs a good disinfecting. I've had her home from school since Thursday and she's sitting out today as well. Tomorrow she'll stay home during Ben's surgery so that she doesn't have to be in school worrying all day. She'll be with family at the house since she can't come to the hospital with us after just having the flu.
That's about all I know for now...I'll keep the web page updated as we know more, but please do keep Ben in your thoughts and prayers as he undergoes his procedure tomorrow morning. His surgery is scheduled for 9:45 a.m. and he should be in there for 5-6 hours.
Also, please remember our little friend, Sarah, as she gets admitted into the hospital today to begin the stem cell transplant process.
Thanks for everything!!!
Love,
Michelle

Monday, January 31, 2005 9:12 AM CST

Good morning!
We are a go for surgery tomorrow morning. We have a later start @ 9:45, so we don't have to be there until 8:00. That means one more night at home!!! By the way, Super Bowl Party in Peds on Sunday! Bring your germ mask and nachos!
Thank you all very much for your thoughts - they help more than we can say. We can do it!

Wednesday, January 26, 2005 8:38 PM CST

Just a quick note to let you all know that Ben had a great day and his fever is gone. He's still dealing with a cough, but hopefully that will take care of itself by next week and we can move forward with surgery. He and I had a great day together and he's got lots of energy. As I type, he and Dave are playing "tackle" football in the living room. According to Ben, he's winning by millions of points, as he usually does, being the amazing athlete that he is.
Also, please keep our friend, Sarah, in your thoughts. She'll be undergoing a stem cell transplant very soon and it's a stressful time for her and her family.
Love,
Michelle

Tuesday, January 25, 2005 6:23 PM CST

Hello,
I'm glad that the message that I typed earlier didn't go through, because Dave's had a much more positive tone to it. :) We are at home now and trying to just chill out. Needless to say, it was a big let down to not be able to move forward with the surgery, but we are glad to have wise doctors looking out for Ben.
Silver linings....we had a great night together at the Ronald McDonald House last night, with Ben being thrilled to finally be able to do an overnight there instead of everyone else; Dr. Thomalla (the surgeon) stressed how confident he was that we can get him through this surgery and still possibly maintain the function of the kidney; Ben did extremely well in the pre-op room this time around (before we actually knew he wasn't having surgery) with very little to almost no anxiety, as opposed to all of the other times he's been in there.
Thanks for all of your thoughts, notes, calls, prayers...hold them for a week and let's hope that next week will prove to be more productive. In the meantime, he will be spending the week at home with me trying to prevent him from further illness or injury...hmmmm, should be an interesting week.
Have a good week yourself!
Love,
Michelle

Tuesday, January 25, 2005 12:10 AM CST

Ready, set, wait...
Ben has a low grade fever (100.4) and a congested chest, so surgery is off. They were concerned with having him under for so long with those conditions. So, we will try again next Tuesday Feb. 1st @ 9:45, assuming he gets better by then.
Thanks for your thoughts, keep them going until next week.
I'm happy with the outcome of our surgery drill! We were ready and over-ready to go!
Dave

Monday, January 17, 2005 9:33 PM CST

Greetings,
Today was a day filled with lots of little appointments to get Ben ready for surgery on the 25th. Uncle Mike came along for the ride (which helped out a lot considering collecting a urine sample from a little boy who REFUSES to enter a ladies restroom could have posed a problem had he not been there to escort him into the MENS room). I signed consent forms with the Urologist as well as discussed all of the lovely risks involved with surgery (always a relaxing way to spend a day), discussed pain managment with anesthesia, reviewed his history a number of times with all of them and he had labs and a pre-op exam done by his Oncologist. He also met with the Psychologist to talk about the surgery and seems to have a pretty good handle on what's coming up on him. Everything's looking good that he will be on for the 25th. We're to continue to send him to school like normal for the rest of the week and then have him sit out on Monday (the day before surgery). We have to check him in next Tuesday at 6:15 a.m., so we plan to try to get a room at the Ronald McDonald House on Monday afternoon and spend the night together as a family...Dave, Ben, myself and Hannah. Hannah would like to be with us while Ben is having surgery, so she will take the day off of school and we'll all be together. Other family will be trickling in and out so that we can all try to take turns getting rest, but keeping a close eye on Ben at all times.
He had a good day, and cooperated with everyone nicely. Had a bit of a sass, but nothing I wasn't anticipating.
In case some of you didn't know, our friend Laura Ketchum-Cifcti is taking over St. Baldricks Day this year! We had decided it wasn't going to be a good year for us to organize it, so she's stepped up and is taking it on. Go Laura! Basic info: March 18, 2005 at UWSP - Melvin Laird Room 6-10 p.m. www.stbaldricks.org for more information. If you haven't a clue what I'm talking about, call me and I'll explain. If you were there last year...come again! If you want to shave your head to help raise money to find a cure for childhood cancer, call me! It'll be great fun and I hope that you will all consider at least coming to see this cost-free family fun event for a cause that is very close to our hearts! Mark your calendars! :)
So, this week will involve a normal week for our household and next week, let the chaos begin...we're ready to take on anything!
I'll be typing more next week after his surgery is done and of course how incredibly well he's recovering. :) In the meantime, have a lovely week and take good care of yourselves!
Love,
Michelle

Tuesday, January 11, 2005 10:18 PM CST

Hi!
Well, we have advanced to knowing when Ben will be having his surgery. He's scheduled to go in on January 25th, bright and early. The surgery will take most of the morning and once he's released from the recovery area, he'll be admitted into the PICU for close observation for an indefinate amount of time (probably just 2-3 days). Once he's stable, he'll be moved to one of his regular rooms back in the Oncology unit until he's ready to go home. When his other kidney was removed, he had a total of an 8 day stay, so they're expecting that anywhere from 5-7 days after surgery he could be released. Kids bounce back much better than adults because they just want to get back into their lives to play.
We are in the process of planning family to come to stay with Hannah while we are gone, and help out at the hospital as well. It feels like there's so much needing to be done and I'm a bit overwhelmed, not wanting to miss something. I'm sure everything will be fine and all that needs to will get done...I just need to relax. Easier said than done unfortunately.
Ben's not completely sure about what's going to be happening yet. We don't want to create too much anxiety for him. He's been listening at his doctor appointments and asks questions every now and then, but generally doesn't seem to talk about it too much. He knows that he will be having surgery and that they will be trying to take out his tumor. He knows he will be asleep and that we can't be with him during the surgery. And he knows he'll have another "special mark" (scar).
Hannah seems to be coping with everything pretty well also. She was in a very giddy mood tonight, singing in the shower like there was no tomorrow.
Ben's birthday party was a success, and a good lesson for Mom...12 extra little boys in the house all at the same time is maybe a few too many. :) They actually all did terrific, but I'm not used to the way boys play when they're in a big pack like that. Apparently their goal is to run nonstop, wrestle, dance and yell from the time their parent drops them off, until they come to get them. And the presents...remote control vehicles, action figures, Spiderman everything! A very fun experience for all...especially for the birthday boy.
We are so pleased that his health issues didn't have to interfere with his birthday fun.
Next week I will take him in for several appointments for pre-op things. Looking forward to getting past this phase, but also wanting time to stop for awhile.
I'll write again if anything changes on us in the meantime. Feel free to toss Ben and his doctor an extra prayer on the morning of the 25th! :)
Love to you all!
Michelle

Friday, January 7, 2005 9:22 AM CST

Hello!
It was a long, informative, and tiresome day yesterday. We left the house around 5:30 a.m. to make Ben’s first appointment that was scheduled for 7:00. After battling with Ben for an hour or so to drink the 3 cups worth of the contrast fluid that was presented to him for the CT scan, he was finally taken into the room for his scan. He got by with only having to drink two of the cups, as it was clear that we would be setting everyone’s schedule back if we had to wait for him to slam that last one. And also he’d likely vomit the amount we had been lucky enough to get him to drink in the first place if he were to continue. I believe “This was a REALLY bad idea they had!” was one of the many comments he had for us. He was not a happy boy, and after tasting the stuff myself, I really can’t say I blame him. One of his descriptions of the taste is moldy chicken water…I’m reasonably sure he’s never had moldy chicken water before, so I’m not certain what he’s basing his comparison on. :) He did great for the scan itself and was a model patient by lying down very still. They were able to get some good pictures and found that the tumor has shrunk to about half of its original size. After the contrast drink ordeal, he was very well behaved and helpful the rest of the day.
We next met with the Urologist who will be doing the surgery to remove the remaining tumor. He’s explained that Ben’s situation is very unique and the surgery will be quite complicated for several reasons. The tumor is located inside of the kidney and is not visible from the outside, so they plan to do an ultrasound directly on the kidney itself once inside, in an effort to get the most accurate location before they have to make the incision to get to the tumor. The tumor is also in a tough spot because it is sitting tight against the urine collection system, which could cause a leak in the system once removed. The doctor is estimating that the surgery may take 5-6 hours. There are various other complications (as in any surgery) that could possibly cause the kidney to fail, however his kidney has grown to about the size of an adult kidney to compensate for the loss of the other one, so he’s got a good amount of viable tissue remaining. Having that is to his advantage and his kidney could still work just fine after surgery too. A transplant will be down the road eventually, but we are hoping to delay that for as long as possible, so that he can grow as much as possible first.
Next we met with the Oncologist. He is still in discussion with the Oncology Radiologist to see if radiation is going to be incorporated in some way as well, but also feels surgery at this time is the way to go. We need to get this thing out. Following surgery will be much more chemotherapy in an effort to, once and for all, kill off any cells that might be lingering but are not visible right now. Typically this disease will spread to the lungs or liver, so we want to be certain that it doesn’t have the opportunity to do so! We’re actually quite lucky that it has not spread after this many relapses. Post-surgical chemotherapy treatments could last as long as every three weeks (each hospital stay will range from 3-5 days) for over a year. This is a daunting amount of time for us to process, so we’re trying to focus on just getting past surgery and seeing where that puts him. A surgery date has not been scheduled, but it will likely be done in the next couple of weeks, and definitely before January slips away.
After other stops for labs, a urine test and an appointment with the Child Psychologist, we were eating lunch at 2 p.m. and finally headed for home.
I apologize for the length of this entry…this is actually a very short version of the information that we got yesterday and our heads are swimming as we sort it all out.
Hannah is doing pretty well with everything, although she worries about him a lot. She had the pleasure of sleeping over at a friend’s house Wednesday night because of our extra early start Thursday morning and she seemed to have a good time just being silly with her girlfriend. It’s good to see her like that!
Today is Ben’s 6th birthday and he will be having a birthday party with his friends tomorrow. He’s getting pretty excited about it and told several people while at the clinic. He even scored some birthday presents once they found out.
So our next thing to focus on is having an awesome birthday bash with a bunch of active little boys this weekend. Next week we will take on the less-than-fun decisions and move one step at a time toward getting Ben healthy for the long life he has ahead of him.
Once again, we thank you ALL for the many prayers said, phone calls made, visits, cards, uplifting words and kind gestures that help get us through this with a smile on our face and our heads held up (some of the time anyway). We have faith that there is a reason why this is all happening, and until we know why we will keep forging ahead as a united family the best possible way we know how. Your moral support is key to our strength, so thank you!
Once we know more, I’ll type again, but in the meantime I think I’m going to take a mini vacation from cancer so don’t expect to hear from me until next week. Take care everyone!
Love,
Michelle

Friday, December 31, 2004 10:30 AM CST

Happy last day of 2004!
Just a quick update on Ben...he's doing very well and is blood counts are looking great. We have a house full of company, so he's able to fully immerse himself in the chaos of cousins, running, screaming, wrestling and all of the good stuff that comes with other little people around. It's good to see him having fun and playing hard. As I type, they are all playing some kind of game that involves running after eachother and barking like dogs very loudly. Not sure what that's all about, but seems to be keeping them entertained.
Everyone have a happy and SAFE new year celebration. Here's to a fabulous 2005.........
Love,
Michelle

Tuesday, December 28, 2004 2:41 PM CST

All is well in the Lansing home again. Ben went in for labs this morning and everything is climbing very nicely. We don't have to watch him so closely now and he'll be able to make it to a friend's birthday party on Thursday. Yea! He's also back to his normal personality...those of you who know Ben well, know what I mean. :)
We just got back from doing a little shopping. Not a good plan on the Tuesday after Christmas when school is not in session. I saw lots of families (mainly moms and kids) there, but not a heck of a lot of smiling was going on. Mental note for next year...get Christmas wrapping paper and bows before Christmas and forget the after Christmas savings.
Now I will start to do more pleasant things, like plan Ben's birthday party coming up. He'll be turning six and wants to go with a Spiderman theme. Birthdays seem even more special these days. It'll be something fun to look forward to and take our minds off of his upcoming surgery.
Have a happy New Year!
Love,
Michelle

Sunday, December 26, 2004 11:29 AM CST

Good morning,
We're still here, but not for too much longer we hope. Ben had a great night last night - no fevers and no growth on his cultures. His counts are slowly but surely rising, although his platelets did drop to a point where he's going to need a transfusion before we can leave today. Apparently this transfusion only takes one hour to infuse, so that's better than the three hour infusion that the other one took the other day. :) They have yet to actually get him started though, so hopefully it won't be too much longer and we can get him started toward being discharged. His white counts are still pretty low so we'll have to be a little more cautious with him than normal, but he's certainly got the energy and spunk of a normal five year old boy. He's more than ready to go home, as is Hannah.
His next appointment on January 6th (the day before his 6th birthday) for the CT scan and reevaluation will give us more insight as to what the near future holds, but we really won't know a whole lot until after talking with the surgeon. Everything from surgery, radiation, kidney failure, and/or more chemotherapy are all things being considered and decisions will need to be made soon after the scan is done. We're just grateful that he's gotten this far with so few complications or setbacks. It's been pretty amazing that he's been able to keep track on his course of treatment schedule so far and attend so much school on top of it all.
So, that's about all the news I have for the moment. I hope that you all had a happy Christmas yesterday. We are looking forward to finishing our Christmas when we get home...after I take a really long nap first. :)
Love,
Michelle

Saturday, December 25, 2004 3:16 PM CST

Merry Christmas to you all!!
We have been having a nice day, with the kids enjoying their presents and just spending some time together. Grandma Julie was here for awhile too, and it was so nice to have another familiar person to enjoy her company.
Santa managed to find his way into Ben's room, ate the whole plate of cookies and drank the cup of Gatorade (that's all that was on hand at the moment) that Hannah set out for him. Ben was surprised that he didn't even see him! Santa was, let's say...VERY generous with the kids this year. The hospital does a wonderful job including siblings and we were grateful for that, especially considering how great Hannah has been about everything for so long. Hannah and I had a nice night at the Ronald McDonald House, ate a wonderful meal that an organization prepared for the families there, and read some last minute Christmas stories before getting to bed. It was a pretty late night since we didn't even leave Ben's room until after 9 p.m. and still had to squeeze in dinner and stories. When 6 a.m. rolled around this morning, it wasn't an easy task to climb out from under the warm covers. But we managed and had two boys waiting for us, ready to open presents. :) There were even some presents sitting outside our door at the Ronald McDonald House this morning when we went to leave. They are amazing there!
Thanks to all who called...it's nice to hear your voices and know that our world outside these walls still exist! We've managed to make Christmas a fun one for the kids, but I have to admit, it's taken a lot of effort on our parts to try to keep that Christmas spirit going when we're not where we want to be.
Now to how Ben's doing...he may actually be able to be released tomorrow sometime. His counts are beginning to rise slowly, but his platelets have taken a bit of a dive. If they continue to go down and reach a specific point, he may be required to have a platelet transfusion before we head for home, but that's only a three hour process, so we could still get home. The other two things that will determine his release is if he gets a fever back or if they find something on one of the blood cultures between now and tomorrow. The likelihood of those happening aren't very high though. He's been fever-free all day today and all night last night, and so far there hasn't been anything on the cultures. So, other than a possible transfusion tomorrow, I think we're going to be sprung! :) :)
He's got TONS more energy now that he's had the blood transfusion yesterday. It made a huge difference in his activity level and even his color looks much better than it did yesterday. So things are looking up!
Despite the location, I can say that we had a pleasant and happy Christmas day. Certainly one that will never be forgotten, if anything! :)
Take care and MERRY CHRISTMAS from the Lansings!
Love,
Michelle

Friday, December 24, 2004 6:21 PM CST

Merry Christmas Eve!
We are all doing well here in Marshfield. Dave and Hannah have arrived, loaded down with gifts for tomorrow morning. They also brought some things to decorate the room with, so we will be doing that after I get back to the room. Right now they are watching 'The Sand Lot' and didn't want to be hassled with all of this holiday cheer until the movie is over. :) The hospital is being VERY generous with the kids...Santa will be delivering several presents for both of the kids tonight. Both of them are okay with having Christmas in the hospital, which I'm grateful for. Hannah and I will be staying at the Ronald McDonald House tonight, but I'm sure we'll be headed back over to the hospital at the crack of dawn tomorrow.
Ben's day went okay today. His counts are even lower than they were yesterday and they had to give him a blood transfusion because of his low
hemoglobin level. There's some discussion about a platelet transfusion also, if those dip much lower, but we won't know until tomorrow which direction they are going to go. He's still very tired, but seems to have a bit more energy today than yesterday. He didn't get sick at all today, but continues to hang on to his fever. Because of his low blood counts, he's kind of in an isolation-type situation. He CAN have visitors, providing no signs of illness are present in the visitor. He can leave the room only to go to the playroom in the Oncology Department only, and if he does choose to do that, we have to reserve the room and be in there without other patients. Heatlhy adult and children visitors can join him in the playroom, so if anyone would like to visit, it IS an option still. We haven't left the room all day, so I'm looking forward to the time when he graduates to being able to wander the Peds floor.
I don't have a clue how long we will be here. He needs to be free of a fever for 24 hours, his counts need to reach a certain level and the blood cultures that they've been taking have to come back negative. So far there has been no bacterial growth showing on the cultures that he's had done, so that's a good thing. Unfortunately, he's still got the fever lingering on and his counts are the lowest they've ever been in all of the times he's ever had chemotherapy.
He and Hannah are really excited about tomorrow morning. Especially now that Dave and I brought their presents into the room...we're so cruel to taunt them like that!
I suppose I should sign off and get back there so we can get started with our little Christmas "party".
Have a wonderful and special day, whatever you are doing to celebrate.
Love,
Michelle

Thursday, December 23, 2004 6:50 PM CST

On a lighter note...
Yes, we are here in the hospital for Ben's fever and low counts, but we are all doing fine. Hannah came along for the ride and Ben wants to have her hang around all the time to keep him company. He didn't want her to go to group time for BINGO because he wanted to watch Chicken Run with her. She is a very caring big sister and has shown him lots of tenderness. She even had him sit on her lap in the wheelchair ride from the clinic to the hospital room.
Not sure what's going on inside his little body, so lots of blood cultures, antibiotics, IV fluids and waiting is the order for the day. We don't really know when he'll be released since it depends on what (if) they find on the cultures, if his fever is persistant and if his counts start to climb at a reasonable rate. Could be as early as tomorrow or Saturday (that's VERY optimistic - maybe stupid- thinking), but likely could drag on for a few days. Right now he only has 400 white blood cells, so he's pretty wiped out and suseptible to germs.
He's on some anti-nausea meds to help with his upset stomach. He doesn't really want anyone to touch him or snuggle with him and is sleeping right now as I type. Hannah was coloring a picture for Ben next to me.
He's been very cooperative with everyone and is beginning to accept that Christmas may be relocated this year. He's been reassured by everyone that Santa WILL know where he is and I'm proud about how well he's dealing with it.
It's been wonderful having Hannah here to visit with...she's such good company. I think she's ready to hit the pavement soon though, because she's getting a little bored. We're not leaving the room much since Ben's feeling so sick, so it's not quite as fun as it has been in the past. Dave is coming tonight to take her home and they'll come back again tomorrow.
I've come to terms with the idea of Christmas in the hospital, and if we do end up going home it will be a really, really, big surprise and treat then! :)
I'll keep everyone posted on how he's getting along over the next few days. Feel free to call or visit...we do get lonely for familiar faces! I'll be posting his room number and the direct line to his room.
Hope you all have a great night!
Love,
Michelle

Thursday, December 23, 2004 12:27 AM CST

Hello,
Looks like we WON'T be home for the Holidays. Benjamin's counts are low and temperature is running warm. Michelle, Hannah, and Ben are on the way to Marshfield now to see the doctor and he said to "Plan on an admit." Great.
Dave

Thursday, December 16, 2004 4:31 PM CST

We're home! Ben had a great night and didn't wake up feeling sick. He only had one hour of chemotherapy last night, so it made his morning much more comfortable. The hospital staff was terrific about getting the discharge process started nice and early and we were driving home by 10:30 a.m.
The next step will be for Ben to have a CT scan. The doctor is going to wait for 3 weeks first to allow the chemotherapy to have its maximum affect before he tries to reevaluate what course of action to take. He's pushing for surgery, regardless of what he sees or does not see on the scan because he wants to be sure to get everything out and not miss anything. The surgeon and he will be discussing Ben's case once the scan is done and we'll start making some decisions about which way to go next. We should expect several more months of chemotherapy following surgery.
Ben's FULL of energy today - you'd never even know what he's had pumped into his little body for the last few days. He really wanted to go to school on the way home from the hospital, but I thought that would be pushing it. Brenda Garrigan (his oncology nurse) and Jacob (his email penpal who is currently in remission) are going to his school tomorrow afternoon to show the Kindergarteners a Charlie Brown video about a little girl who had cancer and how her peers and siblings all dealt with it. Jacob will visit with the kids about his experience and Brenda can help answer any questions they have. At first Ben didn't want to be there when they came (too embarassing), but now he's insisting that we go. He says he misses the school cafeteria food (go figure!), so I'll take him in at lunchtime and he'll be able to stay for the rest of the school day.
I guess that's about it for now. We'll continue to watch his counts for the three weeks and hope that there will be no hospital visits over the holidays. There are lots of kids and families up there right now that will definately be there over the holidays, so keep them all in your thoughts and prayers.
Merry Christmas everyone!
Love,
Michelle

Thursday, December 16, 2004 0:05 AM CST

I'm back! Ben had a good rest of the day today. He was certainly extra tired, but it didn't stop him from going out of the room and playing with one of his friends. Karishna is the same age as Ben and her baby sister has Neuroblastoma, so she spends her days with Mom hanging out at the hosptial. She and Ben have made a connection and played a game of Guess Who?, worked with playdough and pretended to play Battleship. She's such a cute little girl and a good friend to Ben.
Ben took a long nap this afternoon so he was disappointed when he missed out on group time. They gave him the supplies to make the project anyway, so at least he was able to do it later.
He didn't eat or drink a single thing until 10:30 p.m. He had a craving for Apple Dippers from McDonald's...hey, it's better than French Fries. It was good to see him eat and even drink a little.
He got pretty sad after his nap because he missed everyone at home and wanted to go home. After we found Karishna, things looked a little sunnier.
He had a great evening and we got a bunch of snuggle/storytime in...so cozy! It will be very nice to be going home tomorrow. I feel bad for the families back here who aren't so fortunate right now. There are several in need of extra prayers, ranging from a baby girl to an 11 year old boy. It's a pretty full unit at the moment unfortunately.
Okay, that's more depressing than I intended for this to be, so I will sign off and try to get some rest. Take care and appreciate your comfy beds! :)
Love,
Michelle

Wednesday, December 15, 2004 10:52 AM CST

Ahhh, I feel so refreshed after an uninterrupted night of sleep. I don't know how Mike's feeling, but I would guess that a nap may be in order sometime today. Sounds like they had a fun night that involved farting, burping and watching a video about crashing cars. Now I can see why I'm not so appealing to hang out with! :)
Ben's getting off to a slow start this morning, but he certainly seems to be feeling MUCH better than he did yesterday...only got sick once. Your prayers must be working - thank you! He's very tired and just wants to read books in bed, but I have a feeling he's going to be perking up by early afternoon. Right now he's with a volunteer, who's reading to him. Again, he requested that I leave so that he could have some "alone" time with her. I'm glad that he feels comfortable having someone else to hang out with, but it still throws me off!
Dr. McManus said it looks good that he'll be going home tomorrow morning as planned. We look forward to that! We will be headed to Grandma and Grandpa Ellis's for our family Christmas on Saturday, so I hope that he's feeling up to it. We'll just play that by ear.
I better get back...my time's up with the volunteer. They are so good to do that for parents!
I'll write again later.
Love,
Michelle

Tuesday, December 14, 2004 9:33 PM CST

Hi for the second time today,
Just wanted to follow up with a positive note about the rest of Ben's day. His afternoon went much better and the anti-nausea medication seemed to do the trick finally. He asked to get dressed, go to the group activity, wander about the halls, do some school work and even met some new friends. I could tell that he was very tired, but he didn't let that stop him from having some fun. Uncle Mike is now with him while I'm at the Ronald McDonald House. Ben was very excited and said in a manly sort of voice, "Yea - boys night. No girls!". Geez, I'm starting to get a complex about how excited he gets when he can be rid of me! :) Mike is a very good sport to be doing this for me, and I am truly grateful for the good night of sleep I plan to get tonight.
Ben's getting his chemotherapy from 5 p.m. to 12 a.m. again tonight, so I have a feeling he's not going to be doing too well once the morning arrives. He could use some extra prayers and thoughts sent his way in the morning to get through that icky part. He may be a tough kid, but there's only so much a little body can take on!
Hannah got to get off of the bus at George and Dianne's house, so she was in her little heaven. I will miss not having her as my companion here at the Ronald McDonald House.
I'll write again soon...
Love,
Michelle

Tuesday, December 14, 2004 11:13 AM CST

Hi again,
Ben had a great night of sleep last night. Other than getting up for just about hourly bathroom breaks, he slept very soundly and did a good deal of snoring. Unfortunately he got sick right away when he woke up at 6:30 this morning and has done so several times since. The anti-nausea medication wasn't cutting it, so he got an additional medicine to counteract the battle in his stomach. He seems to be feeling much better in that area now, but is very pale and tired. He's not interested in getting dressed, going for a walk, or going to the playroom, but he did ask if a volunteer would come into his room to play with him while I got some breakfast. It's so neat to see him opening up to the staff here. He's made a complete transformation with his fear of trying new things without me. Actually, he keeps trying to kick me out of the room now that he's found this confidence in himself.
He's looking forward to Uncle Mike's sleepover tonight. I'm hoping that he'll have recovered from this bout of nausea for the night. He gets his chemotherapy from 5 p.m. to 12 a.m., so by morning he's really feeling the effects of it.
Keep those prayers coming for him to be able to get comfortable while the medicine does its work. One silver lining...he's very snuggly when he's feeling sick. Coming from a kid that's not the most snuggly under normal circumstances, it's a treat for me. :) Take care!
Love,
Michelle

Monday, December 13, 2004 10:48 PM CST

Good evening,
Today has gotten off to a great start. After a few tears about not wanting to come back, he seemed to accept it fairly quickly and has been fine since. He's had no huge meltdowns or fits for the past couple of days (something that's been a real issue for a couple of weeks now), so that helps in the stress department! :) Dave took him in this morning to get him admitted and settled in. Hannah and I joined them after Hannah was done with school for the day. She spent some time visiting and playing with Ben and then they left for home. He's been great ever since! He's becoming VERY comfortable with the hosptial environment and staff finally. He chose to participate in the group activity and even asked Dave to leave the room while they made their ornament activity. He then spent an hour doing a painting project with the Child Life Director, requesting that Dave also not be there cramping his style. He's made enormous strides since we first started coming, so it's good to see him wanting to excercise this newfound confidence in himself. I have to say that I'm finding myself a little confused as to what my role is during these newfound moments freedom that I've been granted...but I'm sure I'll adjust quickly! :)
We had a great weekend visiting with family, watching the awesome Smokey Express Christmas Show that Hannah and Dave participated in, and just being a family. It was the perfect way to lead up to this latest hospital stay.
So far he seems to be doing okay with the medicine, but I could see it starting to wear him down as we got closer to bedtime...moreso than normal bedtime stuff. I am really hoping that he doesn't get really sick from the medicine. Please pray for him, especially tomorrow, since that's when it seems to hit him the hardest. He says he doesn't plan on throwing up this time, so I'll go with his plan. :)
Hope you are all enjoying the holiday season as Christmas approaches. Feel free to get in touch by leaving a message on Ben's page, emailing, calling or stopping by for a visit...hearing from loved ones is good therapy for all of us! Take care.
Love,
Michelle

Monday, December 6, 2004 10:22 AM CST

Winter has arrived, snowpants and boots have been dug out of storage, and snowballs have been flying...mainly from the little hands of a small, but spunky, boy.
Ben had labs drawn again this morning and everything is looking great! He was so glad to be back to school with his buddies (no, he didn't actually SAY that, but I could see it in his smiles when we arrived). And to top it all off, he can even go out for recess on this snowy wintery day...the first of the school year. Can't miss the first recess of the year with snow!
They are giving us a break and not having any more labs ordered for the rest of the week since he's due to check back into the hospital next Monday. It's such a nice treat to have the week "off"! :) He'll go to school for the rest of the week providing he doesn't come down with something in the meantime.
So, life is good here as we keep plugging away toward the goal of remission for good. Thanks for keeping him in your daily prayers!
Love,
Michelle

Friday, December 3, 2004 4:24 PM CST

Things are looking up! Ben's labs are showing his counts are rising...slowly, but surely. He's still on the low side with his platelets though. His teacher had suggested yesterday that if his doctor would be okay with it, she would be willing to have Ben choose a couple of friends to join him for indoor recess so that he could at least come back to school. So he was back to school this morning for the first time this week. He seemed so happy to see his friends and dug right into the activities. Within minutes he had on a paint smock and was painting a Christmas ornament. His close buddy, Julio, had a seat saved for him already so he was good to go. :) It was a wonderful sight to see! He's been so happy since he got off of the bus this afternoon.
We'll go back into Stevens Point on Monday morning for more labwork, but I'm certain that he's going to be in good shape by then and should be back in school next week.
The Almond-Bancroft Christmas concert was yesterday afternoon. Although Ben didn't go to school, he was able to participate in it with his class. He looked so handsome in his little necktie and spiffy clothes that he got from the Yonke's (thanks Debbie and Garett!) and he got right on that stage without hesitation and sang great. Hannah sang Silent Night as a solo in addition to performing with her class. It was a beautiful performance! I'm so proud of her for getting up there and singing into a microphone in front of all of those people - she did not get that personality trait from her mother! Her voice is so lovely! Okay...I'm done bragging for now. Thanks for hanging on there for my little moment of parental pride. :)
This weekend will revolve around spending family time and getting geared up for Christmas...decorating the house, getting the tree and decorating it, wrapping presents, and EVEN a Mommy and Daddy night out alone (thanks to Grandma Julie) to go shopping for two better-be-good kids. We are looking forward to a "festive" weekend.
Hope your weekend is a great one too. Thanks for checking in on Ben.
Love,
Michelle

Wednesday, December 1, 2004 2:40 PM CST

Hi again,
Ben's labs are climbing in some areas but not in others. Because his platelets and hemaglobin are low and he's more suseptible to brusing/bleeding, he's going to be spending more time away from school. We'll head back to the hospital in Stevens Point on Friday to have more labs drawn and hope for the best! His levels should be at the lowest that they'll get at this point, so by Friday it's likely we'll see improvement. He is going to be able to participate in his school Christmas concert tomorrow (no school, but he can go to the concert). Yea! Just as long as he doesn't fall off of the risers, he'll be in good shape!
He's showing signs of wanting to get back to school. He spent part of the day with Grandma Julie and told her that he missed his friends.
That's the latest. Hope the beginning of December finds you all doing well!
Love,
Michelle

Monday, November 29, 2004 9:50 AM CST

Okay, so I spoke too soon...
Just got a call from the lab and his counts are really low at the moment. We are officially grounded until they come back up. We'll have to keep a close eye on his activity level since he can bruise and bleed more easily than normal because his platelets are on the low side, and his white blood cells are pretty low too, so he's more vulnerable to infection. A simple fever will land him in the hospital, so pray that he doesn't pick up anything in the next few days! He'll probably have labwork for the next few days to monitor it and will definately be out of school until the levels increase. Hopefully he should be able to still make the Christmas concert on Thursday, but obviously that's not priority (although, a mommy really loves school Christmas concerts!!).
Please pray for a quick rebound so that he can still stay on schedule.
Love,
Michelle

Monday, November 29, 2004 8:44 AM CST

A message from Ben...

Hello everybody!
How are you doing? But I really want to tell you a joke.
Q: Why did the teacher jump into the lake?
A: Because she wanted to test the waters!
I'm doing very good. I really like the messages and jokes. I feel really good when you give me them. I like lunchtime at school. I like my friends too. They are very nice. We play together. I got out of the hosptial before Thanksgiving. I was glad because I could go to Aunt Brenda and Uncle Bruce's house. It was a long ride there. Bye!
Your friend,
Ben
------------------------------------------------------------------------------
Hi! Ben and I are just sitting here waiting for the lab to call in what his results are after having some blood drawn this morning. They should be fine, but I don't like to take him to school until I know for certain. Things have continued to go well and we've stayed right on schedule as planned. He did show more side effects with this last dose of chemotherapy, but certainly nothing earth shattering. He gets tired more easily and his eyes look a little dark. It took a few more days for him to gain back an appetite and to lose the sensativity to odors when we had gotten home, but it's all back to normal now. He did miss out on an extra day of school because he was pretty wiped out. His first school Christmas concert is on Thursday and he's showing a bit of anxiety over that, but I think they'll be able to coax him onto the stage with his class. Our little Hannah is going to be singing Silent Night as a solo during the same concert, so we are really excited to go and be the proud parents, juggling the camera and video camera. :) It will be a strange feeling to be in the audience watching both of them, instead of wrestling with Ben while watching just Hannah.
We hope that you had a very nice Thanksgiving. We enjoyed time with family at Brenda and Bruce's (my sister and brother-in-law) beautiful new home. We'll be in touch again soon!
Love,
Michelle

Saturday, November 20, 2004 9:32 PM CST

Home again!
We were discharged from the hospital by 10:30 this morning. Dave said that when Ben woke up he clearly stated that he wanted to be unhooked and wanted to go home now. When the doctor was doing his rounds, Ben stood at the door and knocked on the window to get his attention so that he would come into the room to get the discharge paperwork moving. When the doctor didn’t notice him at first, he flagged down the nurses nearby and pointed to the doctor so that they could alert him that Ben wanted to see him. What’s that old saying…the squeaky wheel gets oiled first? I think he might fit into the squeaky wheel category. By the time Hannah and I got checked out of the Ronald McDonald House and over to the hospital, Ben had been freed from his IV and had his jacket on.
Hannah and I had a fun night last night at the Ronald McDonald House. What an amazing place that is! After a late dinner we played a quick game of checkers, then crawled into our beds and chatted like a couple of girls having a sleepover…she was so cute and giggly. At some point though, I fell asleep to her constant conversation (anyone who knows Hannah, knows exactly what I’m talking about). She doesn’t stop talking! I do remember hearing her say, “Mom? Mom?! Mom!” a couple of times before I was completely out for the night. I guess I’m not the ideal companion for an all-nighter of girly talk, but I gave it my best shot! :)
Ben had a great morning, knowing that today was going home day. He didn’t get sick until we were in the hallway just outside of the oncology unit, on our way out to go home. And even after that, he was running happily down the hallway about 2 minutes later. He took a long nap this afternoon and when I went to check on him after 2 hours, he said he’d like to keep sleeping. He’s still doesn’t eat well in the hospital – all day yesterday and this morning he didn’t eat or drink one thing! Usually we can get him to have a little something, but he wouldn’t hear of it. He did eat some yogurt and some chicken tonight. Although he wasn’t able to keep that down, it is nice to see him eating again.
It’s so nice to be back home again. Next round of chemotherapy will be on December 13th, and it will be the same regimen as this time was, with a four-day stay and the same drugs being given.
Hope that you all have a wonderful Thanksgiving…I know that we have MUCH to be thankful for, including you all! :)
Love,
Michelle

Friday, November 19, 2004 6:32 PM CST

A message from Hannah...
Hi,
I am at the hospital with Ben and Mom. Grandpa and Grandma Ellis and Uncle Mike brought me. It was fun. Ben and I watched 'Chicken Run'. It was funny! We went to Group together and made Thanksgiving centerpieces. I am going to the Ronald McDonald House with Mom tonight. Dad is staying with Ben in the hospital. The answer to Cristina's question...my favorite animal is a horse!
Love,
Hannah


Hello,
Today was a pretty good day. Ben's definately feeling the effects of this chemotherapy more than the others, but still is coping well. He's been sick a few times today, and hasn't eaten or drank a thing, but he's in great spirits. He also gets tired easily and wants to stick closer to the room, but we did manage to get out a couple of times. The diversion of company visiting took away some of the focus of his upset tummy. We even ventured out to the group time activity, which he and Hannah did together. They've been snuggling since she got here and right now she's pushing him around in a toy car. You can tell that they've missed each other.
He had a bit of a rough night last night for a couple of hours. He ended up getting an ear infection and it was really painful for him starting around 10:00 p.m. He did a lot of tossing and turning, moaning and crying. After the second dose of Tylenol, he was better and hasn't had any ear pain since. He's also on an antibiotic for it, so he should be good to go tonight. We also spent a good portion of the night changing sheets and clothes and washing him up because he slept so soundly after his earache went away and found it difficult to awaken for bathroom breaks. The nurse was very kind and took care of his laundry for me so that he didn't run too short of his supply of clothes. He refuses to wear anything that the hospital provides (especially the gowns!), so it was nice that she did that for us.
Tonight Dave will take the night shift while Hannah and I have some girly time. She seems very happy to be here and participating in the hospital routine and is looking forward to our time at the Ronald McDonald House. Ben's more than excited to spend boy time with Dad.
I guess that's about it for now. Looks like tomorrow morning we should be sprung as long as his night is a good one. Yea!
We'll be in touch soon.
Love,
Michelle

Thursday, November 18, 2004 6:41 PM CST

Ugh - I just got done putting in a journal entry and somehow lost it before I could post it! Grrr. I'm going to make this very brief, since I've eaten up my "allowed" time away from the room already (Ben keeps an eye on the clock). Things got off to a little bit of a rocky start this morning, but have done nothing but improved since. He had a long night of good solid sleep. I ended up changing his sheets four times and doing laundry around 3 a.m. He slept so soundly - no need to wake up for pesky little things like going to the bathroom IN the bathroom. :) It was good to see him sleep so good though.
He doesn't have much of an appetite, but isn't complaining of nausea this time as much as he had last time. He wanted to stay close to the room for most of the day, but we did manage to get out a few times. We even made it to group time. It was Hospital Bingo again, but he likes to know what he's doing, so he liked the idea of repeating this activity.
Thanks for all of the messages and jokes. I haven't been able to read all of them to him because the computers on our floor aren't working and there's no printer to print them and take them back to the room with me. I've passed along as much as my memory can hold, but that's not a whole lot! :) He does love hearing from everyone, new and familiar, so it's a great thing! It's also good for us to know that we have so much support, so thank you all!
Love,
Michelle

Thursday, November 18, 2004 5:32 AM CST

Hi everyone!

Ben had a great day yesterday. He had an ultrasound in the morning, and the tumor is apparently now so small it is not visible to the ultrasound. Or, to quote the transcription from the radiologist "the mass is simply not identified." Wahoo!!! Not to say that there isn’t anything there anymore, just that the ultrasound can’t see it. So his schedule now is to have this course of chemo, then another one in three weeks. Three weeks after that he will have an evaluation, which would most likely include a CT scan. Then surgery the week after that. So with that schedule, we get past Christmas!
He had more apprehension about going to the hospital this time, especially about being out of school and being “away from his buddies.” But a little talking goes a long way, and he handled the transition very well. Hopefully he will come home Saturday, as this course is only a three day treatment. Michelle reports that he is doing very well cooperating with the staff. They have cancelled all his hospital food trays and are apparently substituting microwave popcorn and slushies. He could not handle the smell of the trays and would not have anything to do with the food on them. Hey, whatever gets you through!
Hannah was also a little sad when we dropped her off at the Yonke’s house yesterday morning where she was going to catch the bus. I think the fact that Dad, Mom, and Ben were all leaving her was too much. Thanks to her friends and Grandma though, she ended up having a really good day.
Thanks again for all your thoughts and prayers, they sure help!
Dave

Thursday, November 18, 2004 12:31 AM CST

We are here and all settled into the room and our little routine. We started out this morning at 7 a.m. to get to our first appointment on time, which was with the Pediatric Psychologist. We then moved on to ultrasound, labs, and exam to approve his hospital admit. By the time we were done with those things, it was after lunch time. Since Ben had fasted for the ultrasound and there was going to be a gap in time before his chemotherapy could be prepared by the pharmacy, we took one last outing for lunch. By the time we were actually checked into the hospital it was close to 2:00 and he didn't begin getting fluids until 3:00 (needs two hours of fluids before they could start the chemo), so his first dose of chemotherapy didn't start until 5:00 this afternoon. The first drug is infused over a period of six hours, then followed up with another drug (something that he's already had the last two times we were here) for an additional hour. To this point, he's done extremely well. He has strongly stated that he wants NOTHING to do with the hospital food trays (says they make him nauseated - last time they were triggering his vomiting), so we just cancelled those altogether and are going to feed him what his taste buds tell him is good at the time. Not worth the anxiety that they seem to cause. Popcorn is a favorite thing when he's here, so we do a lot of that. He's also connected the hospital visits to nausea (although I don't think he gets what's specifically causing it), and as soon as we got into the room he was complaining of feeling sick, so there's going to be some mental roadblocks to try to get over. I don't doubt that he is feeling queasy, but now that he's so aware of it, the complaints are more frequent and even at times when it might not be even happening.
The results of the ultrasound were promising! The radiologist said that there wasn't anything visible when he did the test today. That doesn't necessarily mean there's nothing there, just nothing that they can positively identify via ultrasound. A CT scan will be done at week 12 (we're at week six right now) to get a much clearer picture of what's left, if anything. Then surgery will be discussed. So, obviously Ben's tumor is sensative to the chemotherapy and it's definately working! :) Great news!!
He had a much better experience with getting checked into his room this time. Dave was able to take the day off, so having him here was a big help. We did have to use a different room than we'd been in before and he didn't like that idea at first ("I want my room!"). But once we got the PS2 in there, it seemed to spruce the room up to his liking. Now he wants to be in this room from now on (which is 358, by the way). He cooperated with the nurses with everything this time (getting IV attached to Hickman, checking weight/height, checking vitals, etc.), which makes things go SO much easier.
He was very tired by the end of the day and is sleeping hard. He's sleeping so hard that I've had to wake him twice to change sheets and jammies since he's not even waking himself up to go to the bathroom. I hope he slows that down...I'm going to run out of clothes for him!
Tomorrow he will have the same schedule as today - chemo starting at 5:00 p.m. for six hours, then one additional hour of a different drug following that. And Friday will be just the one hour drug only, followed by LOTS of fluids and anti-nausea medication. As long as he's doing well, they should release him on Saturday sometime. This should be a short visit - yea!
Hannah had a bit of trouble this morning when separating from us. I'm sure she's confused and frustrated. The tears just kind of started to seep out and despite her effort to stop them, the darn things just came out faster and bigger. But she's doing fine now, thanks to being around lots of good friends all day and a special surprise visit from Grandma Lansing at school (armed with a candy bar). She got to go to the farm tonight and Dave was home in time to have dinner with her, so her world was better by bedtime.
I'm going to try to get back to sleep. Thanks for all of the guestbook entries...I'll be reading them to him tomorrow (or I suppose I should say, later today). I'll write again tomorrow.
Love,
Michelle

Monday, November 15, 2004 10:36 AM CST

A message from Ben...

I'm feeling very good and I hope you're feeling good. I'm going to the hospital on Wednesday. I feel bad about that. I really want to just go home and I wish I didn't have cancer. I know the hospital is helping me, but I don't really like it there. I like school. I like having Mrs. Thompson and stuff like that. I like art class. I'm looking forward to Christmas and I wish it was, like, tomorrow or something like that. I really like the notes and jokes you send to me. Thanks so much - I really like them. Here's a joke for you...Where do milkshakes come from? Excited cows!
Love,
Ben

Monday, November 8, 2004 6:29 PM CST

Hello all,
Things here have been going well. Ben continues to move forward with no setbacks. His counts have remained stable and he’s able to make it to school regularly. He did miss out today because whooping cough is going around the area and there was some question about what to do about Ben being exposed to it. He let out a big “yahoo!” when he found out about that one. He did get the green light to go back tomorrow since his lab work is looking good. I think he was equally excited about that because he had some show and tell things lined up for today that he didn’t get to share with the class.
Ben’s next chemotherapy treatment will be starting on November 17th. This one will only be a three-day course because he will be getting a different medicine, in addition to one of the others he has already had. The new medication is infused over a period of six hours a day for two days, along with the other medication, which is just the one hour a day for three days. We’ll likely be there an additional day for extra fluids, so instead of the usual six-day stay, we’re only going to be gone for four! :) I’m not sure what to expect with a new drug being introduced, but we’ll find out soon. The same day that he will be admitted for the chemotherapy treatment, he’ll be getting an ultrasound done to reevaluate his status. This should be the point where a decision about whether to do surgery now, or continue with more chemotherapy might be made.
On a more difficult note, a good friend of mine has just found out that her daughter, Sarah, has relapsed with Neuroblastoma. The family has just been given the pathology results today confirming the bad news and could use some extra prayers sent their way. They’ve been through SO much already. I’m going to add Sarah’s web page address to the bottom of Ben’s page if you’d like to visit it. I found the Caringbridge website through them when Sarah was initially diagnosed and they set up a page for her.
Did anyone happen to check out the Northern Lights last night? I’d never had the pleasure of seeing them before, so I was in awe.
Take care, everyone!
Love,
Michelle

Monday, November 1, 2004 6:28 PM CST

We're home again...ahhhh! Things went pretty well, but Ben did end up getting sick once on Sunday night and a couple of times this morning. Now that we've gotten home though, his appetite seems completely normal and he's not been sick once. He took a nice long nap after we got home (something he insisted wasn't necessary) and has been a bundle of energy since he woke up. I'll probably go ahead and send him to school tomorrow, at least for part of the day, and see how it goes for him. He's one tough kid!
Next treatment visit will be in mid November and they'll be reevaluating at that time as well to see where to go from there.
Hannah and Dave are at the first practice tonight for the Smokey Express Christmas Show. They were both anxious to get back into it. If anyone's interested in coming this year, let us know if you haven't already!
Thanks for checking in on us and we hope that everything is well with you all.
Love,
Michelle

Saturday, October 30, 2004 4:51 PM CDT

Hello!
I started to write yesterday while still in the hospital, but Ben made it very clear that didn’t like the idea of the “lack” of attention he was getting and made certain that he came up with many ways to shift my attention back to him, until I finally give it up all together. Apparently the other 16 hours a day we spend side by side just isn’t enough. Until Dad came. Then of course I got a quick, “Bye Mom. Drive safe!”, and a wave goodbye. Dave came after 6 p.m. to begin the boy version of hospital fun. Legos, video games and putting together a model truck were on the agenda.
Friday was a fun and busy day for us. The day started out with some visitors, the Yonkes and the Weirzbas. It was great to see Ben having some time to spend with little people from his own familiar world and it was just as great having some “big” people for me to spend time with. Thanks for making the trip, Debbie and Jolynn! Shortly after they left, Ben transformed into Spiderman (minus the mask…too stuffy) and we met up with about 19 other patients for a trick or treating outing of about 20 or more stops throughout the hospital. Just as we were all getting ready to load into the elevators, Uncle Tom and Aunt Carol came out of the elevators for a surprise visit. Perfect timing to join us in the journey for HUGE amounts of treats and toys. What an experience that was…20 patients, lots of volunteers, every piece of medical equipment imaginable along with all of the IV carts being pulled along, all lined up in a row going up and down the halls dressed up in costumes ranging from clowns to inmates. What a sight! It was an amazing event that will not be forgotten and Ben seemed to really enjoy it. I was happy that he didn’t back out at the last minute like he sometimes does when he gets nervous about new situations. I think that all of the talk about treats and toys had peaked his curiosity just enough to get him over that fear. And as a bonus, he got to be pushed around in a racecar the whole way, so what more could a superhero ask for! After returning from trick or treating, we visited with Tom and Carol for a bit longer. Ben and Tom played a video game while Carol and I caught up on things. Very nice bonus visit!
His nausea seemed worse yesterday and his sense of smell is intensely sensitive (including to my breath, no matter how well my teeth are brushed!). He didn’t eat much of anything, but amazingly enough was able to “choke” down some Halloween treats. Hmmmm. I’m unable to eat anything with any kind of odor in the room because it makes him gag. Still no vomiting, but certainly some close calls! Hopefully things are better for him today with Dad.
Hannah has had a busy couple of days, being off of school Thursday and Friday. Grandma and Grandpa Ellis took her to Madison from Thursday to Friday and then they had some time to spend at home on Friday until I got home. This afternoon she took off for an overnight birthday party at an indoor water park. Way cool! And tomorrow she and Dave will be doing some trick or treating. I hope she’s not too worn out after such a long and busy few days. Ben sent home some of his Halloween goodies for her, so she was pretty happy last night to get those. She and I had a nice morning together this morning, playing games, coloring and tidying up the house.
So tomorrow I will head back to Marshfield in time for Dave to get back here for Hannah’s trick or treating outing. Then we should be able to come home on Monday sometime. His last treatment is on Sunday afternoon, but he has some follow up medicine and IV fluids that will keep him there one extra night.
For those of you doing the Halloween thing, have a great and safe time tomorrow! Take care everyone.
Love,
Michelle

Thursday, October 28, 2004 6:45 PM CDT

Hello all,
Here we are into day two already. Three more to go! Ben's doing pretty much the same in his reaction to the chemotherapy, with much nausea and fatigue. However, he's still very active and good natured considering how he feels inside. This morning was spent mostly in the room as he didn't have much energy to want to leave. But by late morning, we hit the hallways and playrooms and didn't look back. He even got the courage to participate in the group activity this afternoon (today was Hospital Bingo) and he won a prize. He picked a racecar...surprise? It took A LOT to get him to the point where he'd enter the room with the other patients already in there. We tried to get him to participate in the group activities during the last visit, without success, so today he made big strides. He made a little friend, Austin, (a brother of a patient) and they seemed to get along well. Unfortunately for Ben, but fortunately for Austin's family, they're going home tomorrow after a long 10 week stay. He painted a pumpkin with Austin. He also had a very special visit from Mrs. Thompson while he painted his pumpkin. She brought him some fun school work and some of his artwork from school so we can decorate his room for Halloween.
We're looking forward to some more visitors tomorrow. Anything to add some spice to the day is a good thing!
Right now he's playing a video game for the first time today so that I can have a little "getaway" to the computer. I don't want to find myself sitting on it after 1 a.m. again tonight.
The farting putty continues to be a good source of entertainment for him, thanks to Sunshine the Clown. He likes to surprise the nurses with it. :) He did manage to get some school work done too.
He seems to think it's a funny joke to pull little stubbles of his hair out and put them on my pillow. He definately hasn't lost his spunk or sense of humor.
And on an extra good note, nurse Jen was back today and even though she wasn't assigned to be his nurse for the day she made it a point to make contact with him throughout the day. He was diggin' it! "Girls drool and boys rule" went right out the window once he saw her. :)
Here's to another good day tomorrow...
Love,
Michelle

Thursday, October 28, 2004 1:54 AM CDT

Good evening...or should I say Good Morning,
I'm having another insomniac moment so I thought I'd take the opportunity to add a journal entry.
Ben and I arrived at Marshfield Clinic yesterday morning, armed with more luggage than probably necessary. Ben was a happy, charming and cooperative little patient for the nurses and doctor. After finding that his labwork and exam all looked great, we headed up to St. Joseph's Hospital. Once we arrived to check in and reached his room, his happy demeanor took a quick nose dive. Didn't want to get weighed. Didn't want to get the IV attached to his line. Didn't want to have his blood pressure checked. Kicked at or hit anyone within reach if they tried to touch him...you get the picture. It wasn't pretty. After he realized that no matter how much of a stink he made, he was still staying and getting that IV attached to his line (and after realizing that kicking and hitting is still an offense that warrents discipline even if he is in the hospital - especially when Mommy gets nailed in the face), he finally gave in. He's certainly got a strong personality, but I believe that's what gets him through all of this craziness and keeps him in tact. Five year olds have such a strong desire for independence, yet still have a lot of controlled things in their lives in even a normal situation. I can't imagine how frustrating it is for him to have so little control over this on top of all of the regular five year old stuff. We try to give him as many options as possible, but sometimes the decisions he "gets" to make aren't all that desireable (for example...do you want to have the injection in your right arm or your left arm?) so he still feels frustrated. Considering what he has to confront on a daily basis though, I have to say he does extremely well!
This morning, Sunshine the Clown, came to see him. She truly had perfect timing because she distracted him from his foul mood. At first, he didn't allow her to step past the door. Eventually she was able to step into the room, on the condition that she stay by the door. And finally, after realizing that she wasn't going to do something totally crazy to him, she slowly made her way over to him and got him to laugh and smile again. That was a definate turning point in the day. As soon as she pulled out the "farting putty" and gave it to Ben, she was in.
Grandma Lansing came for a timely visit as well. Because of the morning madness, I was feeling a strong need to leave the room and get out for a bit. After eating a peanut butter cup and window shopping, I came back regrouped and feeling like I could be reasonable again. The rest of the day was just dandy!
Ben's feeling more sick this time around with the medicine. He hasn't vomitted, but he often complains that his tummy hurts and his activity level had dropped significantly. He isn't eating a whole lot and I have to leave his meal trays out in the hall since the odor of the food is very offensive to him. He didn't want to leave the room at all today, which is unusual for him. We're not normally in the room very often on days he feels well because he wants to explore and take walks. For very selfish reasons, I enjoyed the constant snuggling that he wanted to do today. I'm hoping that tomorrow will bring better luck with the nausea issue.
His hair is coming out fairly quickly. His pillow is riddled with stubble and he's got lots of bald patches where it rubs on things the most. Thankfully, it doesn't bother him in the least bit. He's got a great attitude about it. And he's SO cute.
So, I guess that's that for now. Tomorrow will bring more of the same routine. His teacher may be coming for a visit, so he's very excited about that. He can't wait to show her the farting putty (be prepared Mrs. Thompson!).
Take good care of yourselves and I'll write again soon.
Love,
Michelle

Tuesday, October 26, 2004 6:48 PM CDT

Greetings!
Halloween is just around the corner and the kids are getting pretty excited. Ben’s class had their costume party today so there was some intense energy in the classroom. There were three Spidermen in Ben’s class and I think a couple more in the other class, so we were all well protected from evil villains. It’s so much fun to see the magical worlds that the kids go to when they put on a costume. Hannah’s class will be dressing up tomorrow and celebrating with a feast of healthy foods. She wasn’t feeling well yesterday and she stayed home from school today, so hopefully she won’t be missing out on her classroom activities tomorrow. She seems to be better already, so I don’t think she’ll be missing anything.
Ben and I are heading back to Marshfield tomorrow morning after we get Hannah off to school. He’ll first go to the clinic to have labs and a brief exam done. If his counts are good enough (which they should be), we’ll head over to the hospital and check in for his next five-day course. Looks like we’ll probably be in room 359 again, but I will be sure to update the web page if we end up elsewhere. The phone number currently listed at the bottom of the home page is the general Pediatric floor number, not a direct number to his room.
He’s got mixed feelings about going back. I don’t think he’s scared, because nothing too hurtful happens while we’re there and he’s not expressing any kind of fear. He seems torn between wanting to go back for the fun stuff that the hospital has to offer and just wanting to stay behind and be normal. Even though he’s not quite ready to admit it, he would prefer to just go to school if given the choice. We’ve got lots of things to do to keep busy and we even have some visitors lined up, so we certainly won’t get bored. Plus, there will be hospital trick or treating from 1-3 p.m. on Friday, so Spiderman can reemerge for some more heroic action.
Spiderman’s hair has continued to fall out. He got tired of leaving traces of his hair behind him wherever his head rubbed against something. He decided that he’d like it if we gave him a buzz cut until the rest goes. Now he picks out the stubble and leaves little bald spots all over his head. He says the little stubble hairs are “so cute”. He’s looking a little mangy because of all of the little spots he’s picked at, but he’s still pretty darn cute. Fortunately, he’s taking it all in stride and isn’t at all embarrassed by it. He doesn’t even wear a hat during school most of the time. His friends have been more than amazing about supporting him and not teasing him. I’m so impressed with this group of kids and their compassion.
I’ll keep you all posted on how this time around goes. Hopefully it will go as smoothly as it did the last time. Thanks for everything!
Love,
Michelle

Thursday, October 21, 2004 10:56 AM CDT

Hello!
Ben’s continuing to do really well. His labs were drawn again this morning and his counts are looking great. Much to his dismay, he’s at school right now. He’s the class leader today though, so that should soften the blow. In reality, he loves school, but there’s no way he will lead me to believe such a thing.
Last night he noticed that his hair is beginning to come out. I don’t know how long it will take, if he’ll just thin out like he did last time, or if he’ll lose it all. Regardless, he’s very cool about the whole thing. Anything that will get him out of a haircut (another one of his dislikes), he’s all for it. He does complain that it feels prickly when he puts on his winter cap, so we’ve compromised with a headband and his jacket hood. He loves the headband because it’s got a camouflage print…very manly (grunt, grunt).
He’s scheduled to check back into the hospital on Oct. 27th for his next five day round of chemotherapy. This will mean trick or treating will happen in the hospital on Friday. He’s okay with it, especially since he will likely be making quite a haul when all of the patients trick or treat from department to department. He will be going as Spider Man and because he will be hauling around his IV cart with him, he’s going to have the ultimate costume accessory…a spider web regenerator. Can’t get that at Target!
It looks like I’m going to be the lucky one to take Hannah trick or treating on Sunday. She’s very excited and is going to be the prettiest witch ever. I don’t doubt she will be making quite the haul herself! She’s doing great, enjoying school and her farming chores with George and Dianne after school. She always gets her homework done right when she gets home from school so that she’ll have time to go to the farm. She’s got an extraordinary ability to budget her time well.
That’s about all I have for now. Until next time…
Love,
Michelle

Monday, October 18, 2004 7:21 PM CDT

Just a quick note to let you all know that Ben's counts were terrific today, so he's still in school until at least Thursday. Looking good!
Love,
Michelle

Sunday, October 17, 2004 10:00 PM CDT

Hi everyone!
We’ve had a pleasantly uneventful few days so I’ve put off adding any entries. Ben was able to attend school Tuesday through Friday. Despite his complaining about it to me, I could tell that he was glad to be back. His friends were happy to see him too. He has a very nice group of kids in his class!
His counts were checked on Thursday and they were all within the normal range. He definitely shows signs of fatigue, but his appetite returned a couple of days after getting home from the hospital. He’s really not showing any significant side effects at this point. There have been many mood swings, but I don’t know if that’s just simply a five-year-old thing, the fatigue, the drugs, or a combination of all. He does well at school, so thankfully he saves the big meltdowns for home. I’m sure he’s tired and needs to let off some steam somewhere, so home is the safest place to do it.
Tomorrow morning he will have his counts checked again and if all are okay, he’ll go to school afterwards. He’ll have them checked every Monday and Thursday in between treatments from now on. We are able to have this done in Stevens Point to save us from making another trip to Marshfield. The Oncology department in Stevens Point is for adult cancer, so they don’t get many pediatric patients that come through. And being the conversationalist that Ben can be, it’s a fun visit.
He continues to do very well with his nightly injections of Neupogen. As long as he gets to choose the spot where we do the injection and the color of band aide (which is strictly for his benefit), he’s fine with it. He doesn’t even wince! He’s also got several “jobs” that are consistently his each time we have to do something with his central line. This really helps make him feel responsible for the care of it too. Thankfully he seems to understand what’s off limits for him. It’s interesting to hear his comments and questions about his line when we are cleaning it. He was never really able to ask questions about it the last two times he had lines because he was only 1 ½ and 3 ½ years old. He’s got some very good questions! And he can actually tell us how things feel…another thing we’ve not experienced in the past. Anyone who knows Ben, knows that he’s not shy about telling you exactly what’s on his mind, so that can be helpful (or not helpful at times!).
Hannah and he still have the strong love/hate relationship that they’ve always had. Not much has changed in that area…just ask Uncle Mike! I guess that’s a good thing???
Ben had a friend over today and they went to go see Shark Tale with Dave while Hannah and I went school clothes shopping. She and I saw it last weekend, so we hit the stores instead. She’s growing like mad and we can hardly keep up with her wardrobe! She’s very easy and fun to shop with.
That’s about all I have for now. Thanks for all of the calls, cards, emails, guest book entries, prayers, meals, and love, being sent our way! Wishing you all a wonderful week ahead…
Love,
Michelle

Tuesday, October 12, 2004 10:07 PM CDT

Hello!
Today was a perfectly normal day. Ben and Hannah both went to school. Ben stayed the whole day, with no problems. Hannah had swimming lessons after school. We all ate dinner together (compliments of Erin Andrews…thanks Erin – it was GREAT). Did baths. Read stories. Put the kids to bed. It’s interesting how having a carefree day like that is so easy to take for granted.
It was very nice to get back home yesterday. Ben asked if we could stop by his school on our way home, so we ended up spending the last hour of school with his classmates. It was a good way to reintroduce school back to him, since there was no reason to keep him home today. He proudly showed his friends and teachers his bravery beads.
The evening last night proved to be a difficult one, as he must’ve realized that the whole world didn’t revolve around making his life comfortable 24/7 (like in the hospital), and he didn’t care to make the adjustment back to reality. There were some boundaries crossed and let’s just say that the evening didn’t end quite as blissful as tonight did. I’m sure that it’s confusing for him to go from one kind of environment to another, so I can understand. I’m hoping that he learns to make the adjustment a little easier for himself (okay, and us too!) as each course of treatment passes by.
He’ll be going to school again tomorrow as long as it seems like he’s doing good. I’ll have to take him into Stevens Point for a blood draw every Thursday and Monday in between treatments. As long as his counts seem to be holding up, he can continue doing normal things. If they drop too low, he’ll have certain limitations, depending on what's dropping. Each night, Dave gives him an injection (I haven’t gotten the courage to do it yet) of Neupogen, which helps his body to build up its supply of white blood cells. He’s had two injections so far and hasn’t even cried! He’s been very brave about it. And the Star Wars band aides that he picked out specifically for the injections help ease things too. His next chemotherapy should be scheduled for the end of this month providing his counts are at an appropriate level.
Ben and Hannah’s relationship has picked up where it left off. For example, this morning before school, there was an incident involving a pair of jeans being flung at someone, with of the metal button making contact with the other someone’s face. After some screaming, crying and door slamming, we managed to keep the day going and get to school in a timely fashion.
Thanks for checking in on us. We hope that all is well with you and your families too!
Love,
Michelle

Sunday, October 10, 2004 8:55 PM CDT

Hi again!
I had a great couple of days to spend with Hannah at home. We were lucky enough to find out that Belts' was closing for the season today, so we made a stop there yesterday for one last Flurry. Yum! We also took in a movie and were lucky enough to have our movie of choice be on the MEGA screen. We even got back in time for her to make it on her daily trip to George and Dianne's, so it was the perfect day for her. :)
Ben and Dad seemed to have a good time over the weekend. Ben cried when he left this afternoon. I'm not sure how I feel about that...when I left on Friday night, he just happily waved at me with a great big smile. Hmmmm.
We should be coming home in the morning tomorrow. Yea! He's done extremely well tolerating the chemotherapy so far, so we couldn't be more pleased. Providing his blood counts remain at an acceptable level, he'll be able to go back to school on Tuesday. I'm sure he will be thrilled. (Did you sense the sarcasim in that last statement?)
Uncle Mike stopped by tonight on his way home from Minnesota. He's doing a fabulous job at getting Ben all wound up before bedtime. Thanks Mike! (more sarcasim)
Ben is having a good time giving Mike the tour and showing him how to make his bed move up and down. Life is good!
Looking forward to getting home tomorrow and establishing a new kind of normal routine...
Love,
Michelle

Friday, October 8, 2004 9:36 PM CDT

A message from Hannah:
Hello everyone,
I miss Ben a lot at the hospital. And I miss Mom and Dad when they go. But I'm having fun at home and at George and Dianne's farm and house. School is going great. I love my teacher. She is very cool. My favorite part about school is reading and daily math. It is really neat to have Ben for a brother, George and Dianne as neighbors, Mom and Dad as parents, and everyone I know as friends. There. Done.
Love,
Hannah



Hi!
Another great day was had. Ben did excellent with his treatments, only having a little nausea, fatigue and a decreased appetite. We had a great day reading, coloring, doing school work, making art, taking walks all around the Pediatric floor, playing video games (of course), and just being silly. Other than having to get up to go to the bathroom every couple of hours, thanks to all of the IV fluids, he sleeps great at night. He's been cooperating with everyone and has a crush on one of his nurses. Her name is Jenny, but he calls her Jen. He's actually excited about the idea of his hair falling out. I think he's a little disappointed that it didn't just all fall right off of his head the minute they hooked his first dose up to his IV. Tonight, Dave came and they are doing the boy thing until Sunday. Apparently there's a football game to be watched tomorrow. :) He was waiting all day and even postponed playing video games so that he'd have plenty of time to play them with Dad.
Hannah is a sight for sore eyes! It's so good to hug her and hang out. We're going to stay up late tonight and sleep in late tomorrow. I'm looking forward to spending a fun day out with her tomorrow and Sunday. She's been spending time after school with our neighbors, George and Dianne, and loving every minute of it. I think there might be some spoiling going on over there. Just a hunch.
So, that's what today has brought. Pretty much the same as yesterday and the day before.
Hope all is well in your worlds. Have a great weekend!
Love,
Michelle

Thursday, October 7, 2004 9:33 PM CDT

A message from Ben:
Hey everybody! Today was a fun day. I did some school work. I have a Bravery Bead necklace. Want to see what beads there are when I get to school? I won't mind. Grandpa and Grandma Ellis came to see me today. Grandpa and I played video games. Grandpa was very silly when he raced because he was worse. I'm really bad at the dirt bike game, but I still like to play it. Grandma brought me a big tiger balloon. I feel really happy. Grandma Lansing got me a frog one yesterday. Now I have two! I have a very neat bed because it goes up and down. I push the arrow buttons myself. It's fun! Mom and I had a snuggly nap in it today and we read some cool books too. Tomorrow Dad is coming for a sleepover. We get to spend boy time and play video games. Boys rule and girls drool! Hannah is very nice. I miss her. She's going to have girl time with Mom. I hope Mom and Hannah don't drool on the carpet!
Love,
Ben


Hi! We had another very good day. He's beginning to feel some nausea and is losing his appetite, but still no vomitting! He got pretty tired late this morning and early this afternoon, right about the time that he started complaining of his stomach hurting. After his nap he perked right up and has been good since. He even ate a good dinner. So, things continue to go as well as they could go. We've kept ourselves very busy doing a variety of things. The Child Life department here is so good.
We'll be here until at least Sunday, but possibly Monday. If anyone would like to visit, he's up for it!
We love the messages being posted on his web page guestbook...thanks!! :)
Love,
Michelle

Wednesday, October 6, 2004 4:46 PM CDT

Hi, this is Ben. I wonder how you guys are feeling. Hope you're feeling good! Well the hospital's a little scary but I know I have to go. I just love those video games in my room. I love 'em, I love 'em, I love 'em! I rode in a race car and it was very cool. It looked weird. I don't like my IV cart very much but it's kind of cool that I get to push it around. I hope to see you soon - bye!


Hello!
Ben's doing really well with everything so far. He's a bit overstimulated with all of the activities (mainly video games) so we're going to have to create a balance with that. He started off not wanting to cooperate, but once he realized that his Game Boy was on the line if he didn't start, he became pretty helpful in a hurry. His first dose of medication was given from 2-3 p.m. and the second dose was given from 3-4 p.m. I know it's early yet, but so far he hasn't complained of nausea. They gave him some pretty good anti-nausea medication to curb that, so hopefully we won't even go there. The next four days will bring the same schedule and during the times that he's not getting a treatment, we will continue to occupy ourselves with activities. Grandma Lansing came to see us for awhile this afternoon so that was a welcome diversion.
All in all, things are going very well. It is SOOOO much more easier this time around now that he's older and more independent.
Okay, I need to sign off because he's getting antsy. Thanks for everything and hope to talk to you all soon!
Love,
Michelle

Tuesday, October 5, 2004 7:56 PM CDT

Tonight's kind of a crazy night, so I will keep this brief. We met with Ben's Oncologist this afternoon and discussed biopsy results, treatment plan, etc. It's been decided that using the more aggressive approach is going to be the best route to take. Ben will be beginning his chemotherapy tomorrow morning. It will be a five day course, using two different types of drugs, given for an hour per drug each day. He will be admitted during that time so that he can continue to have IV fluids and anti-nausea medication during the times he's not getting the chemotherapy treatments. I'm not sure how quickly he's released from the hospital after the last treatment is given. If he tolerates everything well, he'll come back to the hospital for another five day course of treatment, 3-4 weeks after this. This will continue for 12 weeks, then he will be reevaluated. If the tumor has responded and he tolerates everything well, surgery to remove the tumor will be happening at that time. After surgery, there is typically several more months of chemotherapy follow up, depending on how he tolerates everything. Nothing is definate as we are watching to see how Ben responds to everything first.
We got a chance to tour the Peds unit to refresh Ben's memory (it's been almost two years since he's been there) and to ease some fear. It apparently worked, because when he saw all of the cool toys and video games, he said, "I love having cancer!". You've gotta love him! :)
I am so proud of him...today at "show and share" time in school, he spontaneously decided to show his classmates his Hickman central line and explain what was going on with him. He told them he'd like for them to still play with him in the playground even though he has a Hickman, and when his hair fell out, he'd like it if they wouldn't make fun of him. They all said they wouldn't! Being teased was his biggest fear, and he faced it head on.
I'll try to find some time tomorrow to update how he's doing with everything, but I have a feeling it is going to be a little hectic.
Hannah's handling everything so well. We just hope that she's being open with us about all of her feelings. She seems to be so far.
Okay, so this wasn't so brief after all. Thanks for all of the encouragement we've gotten from you all! We are so lucky to have so much support through this.
Love,
Michelle

Friday, October 1, 2004 10:00 PM CDT

Hello!
Today was a long, but good day. We arrived at the hospital around 8:30 a.m. and left at about 4:00 p.m. The biopsy went very well, with no complications whatsoever. Hopefully the pathology report will be back early next week. Apparently the doctor was able to get to where he wanted without a problem and he got three samples. The samples are small because it was a needle biopsy, so we hope that it’s enough to get the information they need. The Hickman placement went well too. Ben’s not at all pleased to have the Hickman again. He’s very worried that other kids will find out about it and tease him. We are doing our best to reassure him, but until he gets back to school and realizes that it’s not going to even be noticed, he’s probably going to continue to worry. It does seem that he’s coming closer to accepting that it’s here to stay for awhile. Before the procedures got started and he was going through all of the pre-op things, he didn’t exactly show his “patient of the year” side. After awhile we all agreed that sedation might be in order. He became very personable and playful after that (in a slurred and sloppy sort of way), so things went much smoother. Coming out of the anesthesia proved to be a difficult transition as well. There were many unpleasant words directed at the hospital, nurses and doctors, and I was kicked…he wasn’t too happy with any of us. At one point he said, “These doctors have some really stupid ideas!”. But eventually after everything started to wear off, the Ben we knew came back to us. Uncle Mike came by on his way home from Minnesota and stayed with us for the whole day. He was a big help…and as a bonus, he brought me a slice of chocolate silk pie from the Norske Nook on his way to Marshfield.
The plan for the next few days are to be sure Ben has quiet activity only – no jumping, bouncing, running, etc. Should be interesting. He’s embracing the idea that PlayStation2 is considered a quiet activity.
Ben’s next appointment will be on Tuesday the 5th. I don’t know for certain what we will be doing, but I’m guessing that we’ll be discussing the biopsy results and his upcoming treatment plan. I’m assuming that chemotherapy will be starting sometime next week also.
Ben’s teacher has made up a special bin filled with school supplies just for him so that he can keep up with school. Hannah is the official courier and will get everything to and from school when he can’t make it. Everyone is taking good care of him. We were able to attend his Open House on Thursday evening, so we were excited to not have missed that special event.
Thanks again for all of the calls, cards, messages and emails that you’ve all been sending. It’s so therapeutic to hear from everyone and know how many great people we have in our lives…whether we know them or not! Have a fantastic weekend!
Love,
Michelle

Tuesday, September 28, 2004 2:51 PM CDT

Hello to all!
It looks like things will start happening on Friday morning. The doctors would like to get a biopsy done to help determine Ben's chemotherapy regimen. He’s scheduled to have a needle biopsy on Friday and will have his Hickman placed at the same time to avoid having to have a second procedure done at a separate time. Assuming all goes well with the procedures, he will be home that same day. After the biopsy results are reviewed we will know more about what to expect early next week. It sounds like he will be starting chemotherapy next week. Tomorrow and Thursday will be his last days at school for a while until we know how he tolerates everything coming up. I know that he will be pleased to hear that news. :) We’re glad to have a couple more days of normal life, as well as the weekend to be home together, before having to spend more time that we’d ever care to in the hospital.
Thank you for all of the encouraging notes in the guest book! You can’t possible understand how much it means to hear from you all and know how much Ben is being prayed for and cared about. He and Hannah also enjoy seeing the messages, so keep them coming! :)
Have a fabulous weekend…I know we will!
Love,
Michelle

Sunday, September 26, 2004 6:50 PM CDT

This message is typed by Ben...
ben hannah mom dad fox cat
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Ben would also like to add (with Mom's help)...
I'm glad you pray for me and I really love that. I am feeling very good. I like that when I feel good. School is a little scary, but I know I need to do it. I will be in the hospital sometimes and you can come visit me.
Love,
Ben


We should be getting a better idea of what Ben's schedule will be like tomorrow. At this point it looks like a biopsy will be done this week, as well as the Hickman placement. Chemotherapy will be given for a few months to shrink the tumor before the surgery, and then after surgery he will follow up with several more months of chemotherapy. I believe chemotherapy will be starting later this week. The type of chemotherapy treatments he will be receiving will be very different from what he's had in the past. In the past all of his chemotherapy was given on an outpatient basis. This time he will be admitted into the hospital for about 5 days to receive daily doses of two different types of drugs (one hour of each drug per day). Providing his body can tolerate it, this will be done every 3-4 weeks. The drugs will be much harder for him to tolerate - very different from the last three times he's had chemotherapy. He will likely experience more side affects that he's not had in the past. He and I have had a few "planning sessions" on different things that we can do to keep busy while we are in the hospital. We've come up with some pretty cool things, so I think he's even a little excited to go. I'm not sure how long that enthusiasm will hang around after the first round, but I'm optimistic that we can get as creative as we need to get. Visitors would be a very welcome diversion, so if you're in the area while he's in for a treatment, we'd love to see you!! He enjoys it when I read him the messages in the journal.
Notes to Hannah every now and then are great too. We will try to keep her involved as much as possible so that she doesn't start feeling left out. She seems to be doing well and we hope that continues when her normal routine begins to get disrupted. She's developed a close relationship with some neighboring farmers and has become an extra farm hand. She will be able to get off of the bus there at times, so we think that will help a lot. Thanks George and Dianne!
We are going to continue with Kindergarten as often as possible and Ben's teacher has been absolutely wonderful and supportive about wanting to keep him with his class. She will keep us updated on what they are working on in school so that we can work with Ben when he's not able to go to classes. We are so blessed to have his teacher, Mrs. Thompson, in our lives!
I will write again when I have a more definite schedule of things to come. In the meantime, thanks for all of the messages, prayers, and well-wishes! Take good care and hug your loved ones. :)
Love,
Michelle

Thursday, September 23, 2004 10:07 PM CDT

Hello everyone,
Well, here we go again! As you know, we have begun yet another journey through childhood cancer. We heard about this website, Caringbridge.org, through a friend and thought it was a much more effective way to communicate the many changes that will be coming our way. So feel free to check in periodically for updates on Ben’s progress as he beats this disease once and for all. And we’d love to hear from you all too, so leave a message in the guest book whenever you have time!
On Monday, September 20th, Ben headed into Marshfield Clinic for his routine ultrasound. We got the dreaded news that there appeared to be a new growth on the kidney. Today we headed back for a CT scan of the chest and abdomen. Much to our relief, the CT scan showed that it had not spread to any other areas, so we’re just dealing with one organ. Unfortunately, he’s already working off of one kidney so it makes things a little more complicated. The tumor measures about an inch and is growing from the inside of the kidney. He’s already had a portion of this kidney removed once. Ben’s Oncologist is discussing his case with several other doctors and we hope to hear of some type of plan by Monday. There are a couple of different avenues that can be taken and they’re going to determine what the best route is. Chemotherapy and surgery are definitely in his future, however which order they will be in is part of what’s being discussed. Should the kidney not react well to either of these things, dialysis was discussed, as well as a potential transplant in the nearer future than we initially anticipated.
Ben seems to be dealing with things well, although we're not sure just how much he is actually truly understanding. He is excited about being able to miss some school, since he’s had a rough time adjusting to his new all day school schedule and being away from home. Hannah is worried, but doing pretty well too. They still fight a lot, so it’s doesn't seem to be affecting their relationship. :)
Much is yet to be learned, so we will leave it at that for the time being. In the meantime, thanks for your thoughts and prayers! Take care,
Michelle and Dave

Monday, September 20, 2004 10:04 PM CDT

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