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Sunday, January 8, 2012 11:59 AM CST

Wow - I haven't updated since October! The last couple of months have flown by; especially once we hit the holiday season. Thankfully, there really hasn't been much of anything to update. We continue to take Ben for regular lab work and haven't run into too many problems. Sometimes we will get results suggesting possible rejection, that can't seem to be explained, and eventually they resolve themselves. That always throws me off and triggers a bit of panic, but that's just me. His medication dosing hasn't had to be adjusted nearly as often as it had in the beginning. Things are just kind of slowing down finally.

Ben celebrated his 13th birthday yesterday!!! Two teens, two preschoolers, and two old parents all under one roof makes for an interesting dynamic.

I guess that's all I have! Kind of boring, but boring is good, right?

Wishing you all a very happy and healthy 2012!!

Love,
Michelle

Thursday, October 27, 2011 9:07 PM CDT

Today was a good day. We went to Marshfield to have an ultrasound done, met with Ben's Oncologist, as well as had a chest x-ray done to make sure we still have a child that has no evidence of disease...and WE DO!

Counting blessings tonight as I look past the little things that have been bothering me lately...unfolded laundry, dusty furniture, unfinished projects, and the usual clutter that makes a house full of a young(ish) family, a home. Instead, enjoyed the sounds of laughter, Ben playing guitar, the twins playing together, conversation and smiles from Hannah and hugs from Dave.

As for the Oncology (cancer) part of things, we don't need to repeat these tests for another three months. Nice! As for the Nephrology (kidney) part of things, we are down to lab work every two weeks and periodic checks with the Nephrologist. Progress is good. So, so very good.

Much, much love to everyone who prays for, sends well wishes, thinks of and loves Ben. We know many of you, but certainly not all of you. Regardless, our gratitude extends to ALL of you. We feel truly lucky to have had Ben in our lives for 12 years...and counting!!!!! Please continue to pray for and think positive thoughts for those who are fighting a tough battle.

Love,
Michelle

Saturday, October 1, 2011 6:01 PM CDT

I don't know where the time goes, but it sure moves fast! Since I last updated, school has started, Homecoming festivities have come and gone, Max and Ava are now fully potty trained, a volleyball season is coming to an end, my "baby" brother GOT MARRIED :), I turned another year older, the Autumn colors are becoming more brilliant, and stores are trying to sell us Christmas already!

The past few weeks have brought us further away from transplant (can it really have been 3 ½ months already?!), which also brings us further away from chances for rejection. Ben's lab values have continued to fluctuate enough to make medication management a guessing game, but we think we may have found the magical potion for Ben's specific needs. I seem to say that a lot.

Visits to the clinic are slowly getting less frequent. We've been able to utilize a closer clinic to draw labs before school so that he doesn't have to miss many days. Marshfield Clinic visits still command more of our time than we'd like, but it's getting better. Ben's doctor has done everything in his power to keep us closer to home and to try and help Ben reach his goal of "almost" perfect attendance, as this is something he's never even remotely come close to doing since beginning his school career. In hindsight, there has only been one single school year (3rd grade) that he did not have cancer or renal failure, and even then he had to miss more school than the average kid for frequent tests and check ups. Okay, technically, he did have renal failure and his fourth recurrence of cancer at the very end of 3rd grade, but he officially finished the year out without us knowing this. And wow, did that rank up there as one of our worst summers...not that it lacked competition with other "worst summers"!

That last part came out a bit bitter. After 11+ years of lumbering through this disease and the damage it's caused, at times I find myself a bit bitter (that may be a BIT of an understatement). And tired. Thankfully I also find myself incredibly grateful to still have Ben in our lives, and to have met many lovely people along the way. It’s been quite a trip that has brought us more blessings than burdens.

Thank you for being the blessings that outweigh the burdens.

Love,
Michelle

Tuesday, August 30, 2011 8:11 PM CDT

Hello!!! :)

We've had a streak of good fortune lately. It's taking a bit of time, but we are finally getting Ben's meds regulated and his lab values normalized. We are almost to the point where we can taper off on the twice a week visits. He was taken off of two more meds, so his med list is as bare bones as it will ever get. He has not been in the hospital since the last time, and we've had no extended clinic visits or surprises. Just in time for school!

Speaking of school, the new year begins in two days and Open House was this evening. Max and Ava were excited to tag along, thinking (in their words) they were "going to learn their lessons". I'm personally looking forward to a shift in routine. Ben's not very excited about starting 7th grade - says he needs another good week and then maybe he'd be ready. Hannah's ready and excited to get her sophomore year going. I'm anxious to dig in and do some teaching with Max and Ava at home, as well as get them out and about socializing with more kids their age. I feel like things are starting to turn around for us. It's been a long summer full of twists and turns, both good and bad. I'm looking for a fall/winter that's not so twisty and turny! I think we might just get that. :)

We were able to squeeze in one more quick family vacation with a visit to see Dave's brother and family in Duluth, MN. It was an absolutely gorgeous weekend in Duluth and a great time to spend together. What a luxury to not have major worries, heavy equipment to haul, and dialysis treatments to work into that schedule.

Enjoying our "freedom" because we know that it's not promised to us. Hope you are enjoying whatever freedoms you have, and enduring whatever burdens you have, with loved ones close by holding you up.

Love to all of those who have held us up!
Michelle

Thursday, August 18, 2011 9:38 PM CDT

Hi!

Home sweet home. We arrived home last night a little after 7:00. The discharge process from the hospital took longer than I had hoped yesterday and the drive home was long, but worth every minute of sleep in my own bed.

The final diagnosis was drug toxicity to the kidney. No permanent damage and reversed by simply lowering the dose until we see that the kidney is happy again (by watching lab values). I'm told that this is a common post-transplant problem since every person is so different and it can be difficult to tell what the correct dose should be until the kidney lets us know it's satisfied. They feel that the specific drug that is causing the problem is actually the best drug for him, however he is more sensitive to it than the average patient so the dosing needs to come down.

This morning we went into our local hospital to get more labs and meet up with his regular Pediatric Nephrologist for a follow up. Things looked a little "off" yet, but he wasn't expecting to see an overnight shift. Hoping that we have found the correct dose and can get back on track. Wait...were we ever on track?? I'm not even sure anymore. Regardless, the goal is to get him regulated and to have fewer appointments eventually. I have a feeling that "eventually" is further away than we originally anticipated.

School is around the corner. He's a bit disappointed because he has some new restrictions due to the biopsy for the next 2 weeks - no lifting more than 10 lbs, no running, biking, swimming... basically anything that doesn't exceed simple walking is out. Some day this kid is going to get a completely carefree, no restrictions, summer vacation - SOME DAY!!!

In the meantime, he will be having some last minute, low key fun before school kicks off as long as we can keep him out of the hospital. Hoping that a change of season brings a positive change of health with it!

Love,
Michelle

Tuesday, August 16, 2011 7:15 PM CDT

Patience has been replenished!! Just got word that the biopsy reflected that Ben is NOT having a rejection episode. It appears that there are still medication related issues that need to be resolved, so it's going to be a matter of figuring out what in the world Ben's body will tolerate. His kidney was not tolerating the amount of anti-rejection meds that they would have anticipated he would, so it was basically telling us to back off. Back to the drawing board and SO grateful that this is a fixable and reversible problem. After we get lab results tomorrow morning and if he has no issues that crop up overnight, we can go home. Hooray!! :)

Love,
Michelle

Tuesday, August 16, 2011 5:04 PM CDT

So another week, another monkey wrench.

Ben had labs drawn yesterday (Mon) at our local hospital, that again suggested he may be having a rejection episode. His creatinine level was high enough for us to be sent to MN and have things checked out here instead. Ben and I packed up yesterday afternoon and overnighted with Dave's Aunt Carol, who then drove with us into Minneapolis very early this morning for his appointments. THANK YOU CAROL - you are wonderful!!

He had a lot of labs drawn, then was sedated and they did an ultrasound guided needle biopsy on his kidney - his second one since transplant. I'm told sometimes the preliminary results come back the same day, but we haven't heard anything yet. He was then admitted into Amplatz Children's Hospital for observation to be sure there is no internal bleeding or complications from the biopsy.

How long we are here hinges on what the biopsy results tell us. If nothing is wrong and it's determined he is not rejecting the kidney, we go home and continue to see his Nephrologist at home on a regular basis. If he is rejecting, depending on the type of rejection, there are treatments available to reverse it. They said we could be here for up to a week.

So we sit. And wait. I believe our patience is being put to the test at the moment. Our patience supply seems to be running low. Needing something to replenish it until the next monkey wrench is thrown at us, as a new one seems to be every week. Maybe some good news before the day's end?? Pretty please?

Love,
Michelle

Wednesday, August 10, 2011 8:00 AM CDT

Three weeks of summer vacation left!! Time certainly hasn't stood still this summer.

It seems like every week brings us a new challenge, but I have to remember how significantly smaller these challenges are in comparison to where we were at just a couple of months ago. Last week one of our two weekly visits for labs turned into an 8 1/2 hour day in the clinic. The labs indicated that Ben had an elevated potassium level considered to be critical. They were unable to let us leave until the level dropped considerably. Rather than admitting him into the hospital right away, they tried a treatment that took about 4 hours in the clinic and then retested his blood. It worked and we were able to go home that day. Whew! Ben's doctor feels strongly that the potassium elevation was directly related to his new antirejection medication and he adjusted the dosing. Since then, we've seen his levels slowly drop back into a close-to-normal range.

I'm told that it takes awhile to get his medications regulated and that these ups and downs are very common among transplant patients. I'm really hoping that we have things sorted out before school begins, but I have to remind myself that that's out of my control.

Late this past weekend and early this week, five of the six of us were sick with a variety of colds, coughs, sore throats, fevers, etc. Ben was the only one spared. After letting the doctor know, he asked if there was a way we could remove Ben from the house of coughing and sneezing until we got better. He spent two nights with Grandma Julie and has since been at his friend's house until tomorrow morning. He's having a great time - it's like his own personal vacation.

I have to bring him to Marshfield for another lab draw tomorrow morning and we will be checking in with his oncologist as well. It's been awhile since we've seen his oncologist - what a great thing! :)

Hoping that this week will be a bit smoother than the previous weeks, but still appreciating how blessed we are.

Love,
Michelle

Thursday, July 21, 2011 1:42 PM CDT

The week has flown by, and without incident! Such a great place to be. His labs are gradually regulating back to normal (although I don't know what today's results are yet, so I could eat my words here). One of his anti-rejection medications were switched out, and the new ones are MUCH smaller than the original ones he was taking, so he was happy about that. A couple of his meds are being phased out as well. I'm told he's on just about the smallest amount of medications that a transplant patient can be on safely. Very cool.

Today we were able to go to our local hospital for labs since Ben's doctor was going to be in the area. Sleeping an extra hour this morning was a treat! :) Assuming Ben continues to do well, by the time school begins we will be down to one lab visit once a week (hopefully we can do that locally), and one Marshfield Clinic visit once every two weeks so that the doctor can examine him. That will be nice and will reduce the amount of school Ben has to miss significantly.

Max and Ava are starting to settle back into more of a routine and figuring out what the rules were and still are, now that we're all home. Not to imply in any way that they are perfectly well behaved angels! They are three. There are two of them. There is one of me. Enough said.

Hannah's softball season is coming to an end, and it's been a great season - her team is undefeated!!! She loves playing and has a wonderful coach who not only teaches skills, but has this great positive vibe toward the girls and the other teams. The team as a whole seems to be very relaxed and enjoying themselves. I'm going to miss going to games, but am so grateful that we only ended up having to miss two games.

Ben's been having lots of lazy summer days. He loves that one of his best friends has a pool and he can actually go swimming in it. He can't swim in lakes or ponds, but pools are okay. He and his friend, Colton have been busy making short movies, building Legos, swimming, watching movies, and just being loud, messy, smelly boys. :) I'm glad that he has this "bonus" time to enjoy before school starts again.

That's about it for now. Enjoying home and summer and air conditioning!

Love,
Michelle

Friday, July 15, 2011 9:30 PM CDT

And we're back home. All three biopsy samples contraindicated the initial suspicion that the kidney was having a rejection episode. That kidney sure took us for a ride, as Ben displayed many of the classic symptoms of rejection. He still has some minor symptoms that indicate we need to continue to keep a very close eye on him, but all of the "big" tests are telling us that he's still doing well. So after a sigh of relief, we were released and home by 5:30p. Enough time to enjoy a lovely vegan dinner that Dave's mom prepared for us, time with the kids, as well as some bonus time to enjoy the sun setting with Dave. Can't ask for much more than that! :)

Thank you all for the prayers, kind words of encouragement and support through this little bump. I'm told to expect more little bumps in the coming months, but it's comforting to know that Ben has a huge cheering section to help us through them. :)

Love to each and every one of you...
Michelle

Thursday, July 14, 2011 2:13 PM CDT

After a good couple of weeks at home, we are back in the hospital. This morning we went in for his bi-weekly labs and check up and Ben's labs suggested he is probably having an episode of rejection. They admitted him immediately and did an ultrasound to determine whether or not there was a blockage from the kidney to the bladder. There doesn't appear to be one, so they did an ultrasound guided needle biopsy of the kidney, taking three samples to determine what would be causing rejection. The samples have been sent to MN and will be received by them tomorrow. Hoping to get some answers, and in turn, begin to treat him appropriately asap. I've been told that this is very common and is typically treatable. I'm going to hang on those words. In the meantime, we are catching up with our old Marshfield friends and everyone's marveling at how big Ben has gotten since we were last here, as well as how great he looks. Sounds as if we'll be here through the weekend until we know more.

He's feeling fine. He wasn't happy about having another IV placed, and he just woke up from the affects of being sedated for the biopsy. In classic 12 year old "humor", he casually looked at me after everything sunk in and said, "Nice kidney, Mom". Seriously! I guess sarcastic humor continues to be his coping mechanism. :)

With that, please keep Ben in your thoughts and prayers as we navigate through these next couple of days. After the initial shock of the turn we've just taken, he's actually in great spirits and sassy as usual.

Love to all,
Michelle

Wednesday, June 29, 2011 1:15 AM CDT

We are HOME!!! :) We arrived around 9p on Tuesday evening to two very excited toddlers and a delightful and happy Hannah. What a great day.

The dialysis catheter removal went well on Monday. Ben is now completely free of all apparatus and is loving it. I had my follow up appointment on Tuesday and everything is looking good. Ben's follow up appointment also went well. His labs look wonderful and they couldn't be happier with how well his kidney is working. It was a good day.

Ben's Nephrologist in MN was wonderful. Among many kind things he shared with us, he told us this: "You've done everything you can do. You've dealt with the garbage. You've put in your time. Now you're done. Go live life."

Thanking God today for giving us the rest of the summer to start living life again...

Love,
Michelle

Sunday, June 26, 2011 5:11 PM CDT

It's Sunday!! Two more days and we will be home again. :) Time flies when you're having fun?? Okay, well, time just flies sometimes.

Yesterday some good friends (thank you Cindy and Chris!!!) brought one of Ben's best buds here to stay with us until we leave on Tuesday. We totally surprised him which is always great fun! Enjoyed some time with Cindy and Chris and finally took a tour of the whole RMH, despite having been here for 1 1/2 weeks. It's amazing! Words don't do it justice, so I won't even try - it's just simply amazing. After they left, we visited with Mike and Kelsey and got to see a possible wedding venue with them. Very pretty park!

Today we had lunch with Dave's cousin and family. Thanks for the great meal, Jeff and Shelly!! The Rice Crispy treats are, um, almost gone already. :) It was good to see your whole family.

Tonight we are meeting up with Mike and Kelsey for dinner at a park. They are baking and bringing a quiche that another friend, Lori, made for us to enjoy!! Thank you Mike, Kelsey and Lori! My stomach's grumbling thinking about it. :)

Tomorrow is the big dialysis catheter removal day - sooo looking forward to losing that! We'll have company from Dave's brother and nephews in the afternoon. Tuesday is my final appointment in the morning, then Ben's final appointments in the afternoon. And then we go HOME!!!!

Two people, two kidneys, two weeks....who would have thought?!? Loving it!

Michelle

Thursday, June 23, 2011 11:00 AM CDT

Another day, more healing. It is SO good to be on this side of the transplant! Ben is doing terrific and his labs continue to come back looking great. I'm getting closer and closer to "all better".

Not much new really to write about. Today Dave and Ben took a drive and I'm going to nap soon. We're a pretty wild group over here. Tomorrow will be a lab draw, then more exploring MN. Saturday and Sunday we'll find some low key activities to do with Uncle Mike and Kelsey. Monday will be dialysis catheter removal day (a new holiday in our house) and Tuesday will bring a final visit with the surgeon and Nephrologist. Hopefully by Tuesday night we will be sleeping in our OWN beds!! :)

Dave is my superman. He has been incredible through this whole thing. He's been completely in charge of Ben's health and medication while I'm recovering and is always ready to greet us with a huge smile and some kind of encouragement when things aren't feeling very smiley. I love my husband so very much.

Looking forward to getting home, but also enjoying the opportunity have time to heal properly. We are where we need to be.

Sounds like Hannah, Max and Ava are doing well. They have been kept very busy and distracted, which I hope has helped in keeping them from missing us too much. We miss them terribly. :( Looking forward to next week's hugs and snuggles!

Love to all,
Michelle

Wednesday, June 22, 2011 11:12 AM CDT

Wow, it's Wednesday! Last week on this day we were in our own separate surgical suites beginning the transplant process. And here we sit, one week later, healing and doing well at the Ronald McDonald House. God designed amazing bodies!!

So far Ben's labs have been coming back good. They were able to see that he wasn't getting the recommended amount of fluid through the lab results, so that's a nice little safeguard (or incentive?) to ensure that he stays on top of hydration. I'm amazed every day when I watch him hop (literally HOP) into bed at night, as I sit on the edge of my bed contemplating which leg I want to move first to make laying down hurt the least. I'll get there, but don't see hopping into bed as one of my activities in my near future! I do feel a little better each day, and that's VERY encouraging for me.

Today my mom left for home, and Dave, Ben and I will spend the rest of the time here together, trying to piece together a mini "vacation" in bewteen appointments and procedures. My mom was absolutely wonderful to have around!! She's such a nurturing person by nature and she just rolled up her sleeves and dug in. Love her!! My brother Mike has been a Godsend this entire time. He stuck with me from my hospital admission time to release time (rarely left the room - even spent the nights), and continues to make sure we're being taken care of. I'm SOOOO grateful for his help during what was a miserable time for me personally. Thank you, Mikey - and Kelsey too!! :)

We were told that Ben will have his hemodialysis catheter removed on Monday sometime (no more catheters!!!!!!) and then after we meet with the surgeon and Pediatric Nephrologist on Tuesday afternoon, we are free to go back home!!!! Sooo, excited! Two weeks from the time we left. Amazing. :)

Can't say enough wonderful things about the Ronald McDonald House. As always, they have made life so much easier. Just the number of people behind it to make it run so smoothly reconfirms my faith in humanity. There is so much good in the world and in people.

So now I'm rambling and should take that as a sign that I need to wrap this up. :)

Thank you to each and every single one of you who have been here for us in so many ways. Our gratitude is so significant and I'm not sure how exactly to express it. Just know that you have touched us by being a part of this whole experience. Love to all...

Michelle

Monday, June 20, 2011 3:02 PM CDT

Happy Monday!!

This is Michelle now. Dave was unable to get his updates to go through for some reason, so a lot of what he wrote didn't show up. Hopefully this will work??

To bring you up to date, I was released from the hospital yesterday right around noon. I went directly to the Ronald McDonald House with Mom and Mike, found some food, found a bed and lost four hours to dream land. I didn't end up making it over to see Ben because of some residual discomfort preventing me from wanting to hop into a vehicle. Thankfully he had lots of great company that afternoon and evening.

This morning I was finally able to see him for the first time since surgery - very nice. :) He looks great! He is zipping around here like a squirrel. Which both pleased and annyoed me (I'm moving more like a sloth).

This afternoon we went to two hours of post-transplant classes, which is required before he can be released. They are now in the process of discharging, but since we're at a shift change, I'm guessing that's going to take a bit. He's having some lunch, Dave's packing up, and I'm listening to my son actually saying, "This quesadilla has TOO much cheese in it". What?? Too much cheese?! Never thought I'd hear that come out of his mouth. :) Soon the pharmacist will be here with medication education.

After we are discharged, we will retreat to the Ronald McDonald House until they let us know we can go back home. During that time, he'll be having labs three or more days a week. He'll also have a follow up appt with his surgeon as well as an outpatient surgical appointment to have his hemodialysis catheter removed.

So that's where we stand on day five post transplant! Seems like such a short time, but it feels likes we've been here a lifetime.

Missing Hannah, Ava and Max, but Hannah sent some fun pictures today so that was a treat. They all seem to be doing very well. We are so lucky to have so many wonderful friends and family making sure that everyone and everything is taken care of while we're here. Thank you, everyone!!!

Pharmacist is here...
Michelle

Sunday, June 19, 2011 5:20 PM CDT

Happy Father's Day!
Ben is more than happy that he no longer has his catheter and that he may get released TOMORROW! He is doing absolutely great with the new kidney.
Michelle is out of the hospital as of this morning and is contemplating a visit to this side of the river. It's a short car ride, but any car ride is going to be a bit rough for her so we shall see.
That's all the good news that's fit to print!
Dave

Saturday, June 18, 2011 7:20 AM CDT

Happy Saturday to all!
Ben continues to improve and if it were not for that foley catheter he would be quite mobile. We've been for a number of walks and his labs are looking good.
Michelle and the docs got a handle on her pain yesterday thanks to the Vicodin fairy. She may get released today but a trip over to see Ben would involve a car ride on bumby roads, so we will see if we do that right away.
So, I guess that what I am saying is that things are looking very good!
Have a great day,
Dave

Thursday, June 16, 2011 8:17 PM CDT

Good evening,
I just got back from visiting Michelle (aka "The Donor") and she is doing a lot better now. Pain meds seem to finally be in line and doing the job. She's not doing wonderful or anything like that yet, but is more comfortable. Even got in and out of bed by herself, and had been out for walks today also.
Ben is currently sitting up in a chair watching a movie and is doing very well. The new kidney is doing it's job as hoped. We've been up twice and went for one very short walk. A longer walk is up after the movie.
So...things are going well. I will always knock on wood with a statement like that because I know we are not out of the woods yet. But I hope we at least have a compass now!
Thank you all,
Dave

Thursday, June 16, 2011 8:12 AM CDT

Good morning,
Ben had a pretty quiet night, but we won't be able to say the same about today. He is scheduled to get out of bed four times today. I believe my job description for the day is "bad cop."
Michelle said that her night wasn't that great as they are still trying to find an effective way to control her pain. She did say this morning was getting better so hopefully that trend continues.
Have a great day everyone!
Dave

Thursday, June 16, 2011 8:09 AM CDT

Good morning!
Ben had a pretty quiet night, but we won't be able to say the same about today. He is scheduled to get out of bed four times today. I believe my job description for the day is "bad cop."
Michelle said that her night wasn't that great as they are still trying to find an effective way to control her pain. She did say this morning was getting better so hopefully that trend continues.
Have a great day everyone!
Dave

Wednesday, June 15, 2011 8:06 PM CDT

Hi all!
What a wonderful day here in Minneapolis. Ben's kidney is kicking out the urine like crazy and he's doing well. We've chatted a bit and he seems to be about as comfortable as he can be this close to major surgery.
Just got back from visiting Michelle in her hospital. She's doing well but is having some issues getting the pain meds to do their job. They were adjusting them when I was there and hopefully they will get it quick.
It's been a great, great day and I'm hoping the postive news continues on!
Thank you for all your thoughts, prayers, and well wishes. We wouldn't be at this point without you!
Dave

Wednesday, June 15, 2011 7:58 PM CDT

Good evening!
Here's our status report for the evening:
After taking a little bit of time to start working, Ben's new kidney is now working and making urine like a champ! He's doing really well so far and has been chatting a bit too.
Just got back from visiting Michelle in her room at the other hospital. She's having some trouble getting the pain meds to be fully effective but they were adjusting some things when I was there so hopefully they will get it figured out. But other than that her day has gone very good so far. She was even eating Jello! Oh boy!
All in all the day has gone great. Thanks to all of you whose thoughts, prayers, and well wishes have brought us this far. Three years without a kidney was enough, and now it's over!!!!!!!!!!!
More updates to come,
Dave

Wednesday, June 15, 2011 11:37 AM CDT

UPDATE: Michelle is on her way to recovery room and her kidney is currently being sewn into Benjamin. They are a little ahead of schedule!

Wednesday, June 15, 2011 10:25 AM CDT

So far, so good! Michelle and Ben are both in surgery - Ben for an hour and Michelle a little over two hours. I have not had any updates as of yet, and they have 4 1/2 hours set aside for Ben's procedure so it will be a big wait. I will update as I can. THANK YOU SO MUCH FOR CHECKING IN, the day is finally here!!!!

Saturday, June 11, 2011 12:06 AM CDT

The countdown is on! Four days until transplant. Three days until all day pre-transplant testing for both Ben and I. Two days before we leave for MN. And one more day, tomorrow, to try and feel like I have everything at home squared away. I don't know if I should cry, laugh or scream. I've kind of been doing a bit of each - sometimes all three at the same time! :)

It's very hard to wrap my brain around the fact that we are actually going to do this finally. I am so hopeful that everything goes smoothly and there are no delays or bumps in the road. He deserves a complication free surgery after all of the surgery time he's clocked in.

Below is the contact information if you would like to send Ben a card while he's in the hospital. He's expected to be there for 7-14 days, depending on his recovery. Some kids get out as early as 4-5 days!!

Contact Information for Ben

University of Minnesota
Amplatz Children's Hospital
2450 Riverside Avenue
Minneapolis, MN 55454
612-273-3000 – request room number or patient (we will try to get his room number posted on his caringbridge page asap)

http://www.uofmchildrenshospital.org


Info re: visiting via hospital website:
http://www.uofmchildrenshospital.org/Patients/Visiting/index.html

There is also a downloadable Patient Visitor Guide to answer any questions that you might have, as well as maps and directions to the hospital.

Thank you for wrapping your arms around us with all of the prayers, well wishes, encouragement and help. You all play a role in keeping us afloat!

Much, much love...
Michelle

Thursday, May 26, 2011 11:22 PM CDT

Awesome news today - Ben's last PET scan that needed to be done before transplant came back clean!!! He's still on course for transplant on June 15th! :)

Waiting on one more test for me to be 100% sure that I can still be his donor. We had our blood drawn to be cross matched for compatibility awhile ago and we were compatible. Apparently that can change over the course of time, so as an added precaution, they redo the compatibility test closer to the transplant date. So that was done today and the results will be back next week. It's very unlikely that our status has changed, so I'm hoping this is just a simple hoop to jump through.

It's becoming more and more real that this is going to actually happen. Wow.

Love,
Michelle

Tuesday, May 17, 2011 7:49 AM CDT

Hello!

It's been awhile again since I've been on here. I've been waiting for some news and it's taken much longer to receive than I anticipated it would. But I finally got confirmation yesterday.....I can be Ben's donor AND he's on the calendar for JUNE 15th!!!!!

We're all soooo excited and can't believe that it's less than a month away after all of these years of holding our breath and waiting it out. He has to have one final PET scan done on May 26th to rule out any possible cancer recurrence, and then he's IN! Please, please, please say a prayer that the PET scan will be clean!

Things are starting to really move quickly now. So exciting though!! I'll do my best to keep this page updated as things progress.

Love,
Michelle

Tuesday, April 19, 2011 0:32 AM CDT

My apologies for not being better at keeping this page updated. The transplant process has been slow, so there's not a lot to say. I am down to needing only one more test (I HOPE) done before the team can make a final decision about my status as Ben's donor. Once that decision has been made, we will have an official date set. Until then...we hang out.

While we've been hanging out, we've kept ourselves busy - perhaps more than we'd like to at times. But it's been with everyday sorts of things; like softball, guitar and piano lessons, crazy three year old twins, and...well, life. So that's a good thing!

Hannah went to state with her forensics piece and scored a 23 out of 25. Very proud! She also attended her first prom and had a wonderful time. Ben attended his first Middle School Dance and had a blast. Ava and Max keep us the most busy though, I have to say. They seem to think the center of the world revolves around them and they assume we completely embrace that fact. Until that phase moves along, life will never be dull or quiet here.

Hoping to get that last test done soon and then we can secure a transplant date. Thanks for checking in on us!

Love,
Michelle

Saturday, March 19, 2011 11:02 PM CDT

Just a quick update since I never got back after our MN trip. My appointments for donor screening went well, but we ran out of time to complete all of the tests in one day. Arrived at the clinic at 6:15a and walked out at 4:45p, so it was a very long day. But, things are looking positive and I need to have a few more tests to "pass" before I can be considered. Thankfully those can be done locally. Crossing my fingers that won't be a problem. They will schedule the transplant appointment as soon as a donor is secured. If not me, both of my brothers are on deck. Not sure how they're going to work out who goes in for testing first, but it sounds like they've come up with some kind of contest or challenge...of COURSE! :)

All in all, things have been great. Ben's continuing to thrive on six day a week home hemodialysis. We have had very few bumps in the road. And we are an arm's length away from having a transplant on the radar!! Very cool. Could be as early as the first week in July!!!

Thanks for all of your thoughts and prayers - we appreciate each and every one of them!!

Love,
Michelle

Thursday, March 10, 2011 2:30 PM CST

Fabulous news today at our second visit to U of MN with Ben! He had a PET scan done and there is no evidence of disease. This leaves us with only ONE more scan to get through and he's officially ready for a transplant this summer. SOOOO excited to report this!

Tomorrow will be a full day of screening me to see if I can be his donor. While I do that, the boys will explore Legoland at Mall of America and celebrate this milestone.

Thanks for all of your thoughts, prayers, well wishes and support as we navigate our way through the world of transplant! We're within reach!

Love,
Michelle

Thursday, December 30, 2010 6:20 PM CST

Great appointment at U of MN on Tuesday - long, tiring, but very positive and informative. It's looking promising that they will accept him into their program and we are so excited!! I know that we have a long way to go and a lot can happen from now until then, but we're trying to think positive. He also liked the facility and everyone he met. That was important for us too - he needs to feel comfortable with his caregivers. We should be hearing whether or not I am compatible to go forward with further screening to be his living donor by early next week. Lots of things going on! Hoping for an incredible 2011!!

Love,
Michelle

Thursday, December 23, 2010 7:44 PM CST

Merry Christmas and almost Happy New Year!!!

We got our Christmas gift a couple of days early. We are THRILLED to report that Ben had a fantastic appointment today in Marshfield which confirmed that he remains in remission and is still able to cruise down the path to TRANSPLANT 2011! Amazing!! To be able to breathe again after many tense days of worry is a gift in itself.

For the next few days, we will sit back and revel in the comfort of home, family, Christmas, celebration and simple pleasures. I will personally be kicking this off by sleeping in as long as my body will let me sleep in tomorrow morning. :) And I will start to breathe again.

We will leave for the University of MN, Fairview Children's Hospital in Minneapolis on December 27th after Dave is done working. Our appointments to begin Ben's screening process will kick off at 7 a.m. on the 28th and we will go non-stop (w/the exception of an hour long lunch) until 5:00 p.m. It will be a very long day, where we will learn a lot, repeat ourselves a lot, see many new faces, learn how to navigate a new hospital system and become utterly exhausted. And then we will drive home to sleep in our own beds that same night. I'm both incredibly excited about this first step, and feeling fatigued at the very thought of it at the same time. Regardless of the tiring part, it's SOOOOO exciting that we are able to sit here tonight and know that we CAN go. That we are not facing another Christmas fighting cancer. That we are all here, in one small, cozy house, spending Christmas enjoying each other's company. Okay, and maybe fighting a little, if we want to be realistic about it - it really is a small house and there are six of us afterall. :)

It has been a very good day. And we are all so very happy to share our news with you. Thanks for always being here to keep us lifted up just enough to make it through whatever next step we have to face. I believe that God has made certain to surround us with amazing people in order for us to navigate through what has felt like a journey that has never really made much sense. One day it may make some sense, but for now, we'll take our little victories and embrace them.

Love to you all,
Michelle

Wednesday, December 15, 2010 9:17 PM CST

December 15th! Oh my goodness. That leaves me 10 days to get Christmas cards out, assuming I'd like them to arrive prior to 2011. No promises are being made.

Quite a bit has been happening since I last wrote, but we're still in limbo of sorts, so I've put off writing. Figured I better just go ahead now since there will not likely be ideal times to write for the next several months.

We made our first trip to Madison to visit the Children's Hospital and met the head of the Nephrology Team. We are also going to be meeting with the transplant team at University of Minnesota as well, to be to certain we are in the best place for Ben. That visit is scheduled for 12/28 and 12/29, so we're anxious to get over there too.

But first, we are scheduled to have an ultrasound and chest x-ray in Marshfield to rule out any potential relapses. So, trying not to get ahead of ourselves, but also trying to plan ahead at the same time. PLEASE, PLEASE, please PRAY, light a candle, hope hard, cross your fingers, send good vibes, think happy thoughts, get out your rabbit's foot and four leaf clovers, wish upon a shooting star...whatever you can think of that will bring good luck Ben's way on 12/23. :) That is a hump we must get over in order to go forward with the transplant screening process, and to be honest, I'm a little intimidated by that particular hump.

His daily dialysis at home has been going very well. We have settled into a nice routine (I may be repeating myself here). He looks well, periodically gets tired, but seems to have a good amount of energy overall to live life like an almost 12 year old should. He recently got fitted for a pair of glasses - he chose a fun and funky pair. After two days, he has already lost them, but we are hoping that they are in the school's lost and found tomorrow (and weren't stepped on prior to getting placed there).

He's been taking electric guitar lessons every week and is getting quite good at it. He loves his metallic cherry red guitar. :) He also plays the oboe in the school band, and he and his best friend even periodically join the high school pep band.

As expected with a holiday season, it's been very busy here, but we are looking forward to a quiet Christmas day. With the transplant wheels set in motion, there are new challenges to face, new things to learn, new people to meet, more tests to complete. I will be glad to put a brief stop to all of that to spend time enjoying Christmas. And I hope that all of you will also be able to take the time to just stop and enjoy and remember what is important in your lives.

I will be back as I learn more. In the meantime, we hope that you have a very happy holiday season!

With love,
Michelle

Wednesday, November 17, 2010 8:10 AM CST

Great news!

We have been working toward getting Ben a new kidney for years, and he is now actually registered as a potential candidate!! He's not on the national registry yet, but he's registered with the hospital in Madison. He has a transplant team! Even though this is a not going to actually happen until this summer, we are so excited to be this far.

So, assuming there are no road blocks from now until then, it looks like June or July may be his transplant month. It was supposed to be August, but they've agreed to bump it up a couple of months to allow enough healing time before school begins in September. Don't want to send him back with a compromised immune system!

In January, Ben and I will go to Madison for our first screening. If I "pass" that screening (I think), I will go back one or two more times for an extensive screening process. This should be an interesting ride!

Anticipating an amazing 2011!!
Michelle

Monday, November 8, 2010 10:37 AM CST

Wow, it's been awhile since I've been on here. I keep postponing it because there isn't much to say. Which is great!

We are now counting down from 9 months until transplant, and 4 months until Ben and I go to Madison for our initial living donor screening meeting. I'm not entirely sure what that first appointment will entail, but if I am able to go forward with it, the next appointment after that will be extremely detailed.

Dialysis has been going beautifully. We've gotten into a nice groove that makes more sense for all of us in terms of timing it all. The only days he's missed school have been for doctor appointments so far. He feels well most of the time, although due to his hemoglobin being a bit low last month, he was dragging some. His lab work has been nearly perfect for the last two months – a feat I’m not sure we’ve ever accomplished.

Ben has recently begun taking guitar lessons, and has purchased an electric guitar with money he has earned (and partially funded by Mom and Dad). He’s doing well on it and really enjoys it. He also plays the oboe in the school band, and has mentioned he might want to try his hand at piano. Apparently he’s our budding musician. School has been going well, with him actually commenting that he (gasp!) likes it most of the time.

I guess I’ll leave it at that since there really isn’t anything medically going on. Just playing the waiting game until the transplant process can begin, and keeping him on track with his dialysis and medication regimen. Which is plenty for now!

Love to everyone,
Michelle

Sunday, September 12, 2010 10:16 PM CDT

Hello!

I wrote earlier, but for whatever reason, it never posted.

We had a great appointment on Friday. He had an ultrasound and chest x-ray done. Both studies showed no signs of disease. We also went to his monthly care conference with his dialysis team and his Nephrologist is very pleased with how Ben is doing on home hemodialysis. And we are too!! He continues to have enough energy to keep up with his peers, is eating enough to start putting on "good" weight, and is a happy kid. He still has his worries, but I'm so proud and impressed with his progress. We are now 11 months away from transplant eligibility! We celebrated with Chinese food - yum!

Things have been as normal as they will ever be. The kids started school and it seems to be going well for both of them. It's been nice having time alone with Max and Ava to re-establish a routine of sorts for them. They've been trudging through the terrible twos with a vengeance, so it's been important for us to have some kind of structure again.

Thanks for checking in on him - we are fortunate to be surrounded by a large circle of caring people!

Much love from us to you,
Michelle

Tuesday, August 31, 2010 4:19 AM CDT

And so summer vacation ends (tonight) and another school year begins. Crazy.

It's been awhile since I've been on here. We've been busy trying to squeeze our summer into one month. I have to say we did a pretty good job of it too, based on how tired I seem to be all of the time lately. :)

Dave's grandmother celebrated her 100th birthday and we had the pleasure to join the celebration. I have always looked up to her - 100 years of life can bring a lot of perspective, and she's always been willing to share what she's learned with me.

Last week we ended up taking a week for a family vacation in Door County at a beautiful condo in Egg Harbor that some lovely friends of ours opened up to us. Thanks, Rich and Linda!!! We did a bit of everything, including just vegging out. It was a great time to take back our lives again. Hemodialysis has been dictating how things run around here and we needed to give it its proper place, but also needed to stop letting it run our lives. I realize that vacations are always a lot of work, but taking Ben's machine and all of its supplies made it quite a task - and made our van look like a low rider! It was good though, because it gave me more confidence that we can still provide him with normal life experiences.

He continues to feel well, with energy levels so much higher than that of the past couple of years. He's finally beginning to gain back some of the 10 pounds that he lost in May. And he's happy again! It makes all of this work so worth it to see results like this.

His last check up with the Oncologist went great - still no signs of the cancer returning. We are now one year past his last date of treatment, leaving us one year to go to get to transplant eligibility. His next check up will be on Friday (9/10).

I'll post some vacation photos at some point soon. Everyone grew up on me!

Love,
Michelle

Sunday, August 1, 2010 8:25 AM CDT

It's August?!? Since we lost May, June and most of July to hospital/clinic/dialysis center/car time, we better get crackin' on creating summer fun memories not related to medical procedures!

Ben already started that with his trip to Florida with the Circle of Friends group through the Jerry Wunsch Family Foundation. He left on Wednesday and returned yesterday evening. Despite a rocky start (flight cancelations and delays causing what was supposed to be a 7 hour travel day to be a 17 1/2 hour day!), he had an amazing time. They went to Busch Gardens, spent lots of time on the beach, stayed at a beautiful resort right on the beach, went to dinner at Lee Roy Selmon's, had a Luau dinner, night volleyball, and a "dive-in" movie by resort pool. Ben also managed to squeeze in a dialysis treatment at All Children's Hospital in St. Petersburg just short trip from the resort. It was good timing because he was able to take a break and get some much needed sleep - he slept through the whole treatment from what I understand. After his treatment, my aunt and second cousin who live in FL, came to see him and hung out with him while he chilled out afterward at the resort. He said he was feeling really washed out after the treatment and enjoyed spending time with them in an air conditioned room while munching on snacks. I was relieved that he didn't head right back out into the sun. Thank you Tricia and Jean for going to visit with him - he truly enjoyed the time you spent with him! His flight home was about an hour later than expected, which was much better than the flights on Wednesday. Unfortunately we had two toddlers who hadn't napped and were ready for dinner with us. I have concluded that airports need to have a space for small children to play. I'm sure the other people waiting in the airport would appreciate that too! We made a loud exit. Good times (dripping with sarcasm).

That pretty much covers what's new here. We spent several days getting Ben prepared for the trip. He had two appointments the two days leading up to it to be sure he was in good shape to go. The day before he left, he had a dialysis treatment in the center to dialyze him really well.

We are getting more comfortable with the process of home hemodialysis. Hoping that life will get more predictable and flow a little smoother for the rest of Ben's summer vacation.

Until next time...

Michelle

Thursday, July 22, 2010 5:55 AM CDT

Good morning!

We've been flying solo for almost a week of home hemodialysis now. I wish I could say that it's been going smoothly, but it would be better described as a bumpy week. As I predicted, I am making daily phone calls to the clinic with questions. I don't think that's unusual though for this stage of the process. There have been heart & mind racing moments making me wonder WHY in the world any insurance company would allow such a technical treatment to be done at home by people who are not certified medical professionals. I have many more thoughts on that whole thing, but I won't get into that rant here. Thankfully there have been successful moments too (like yesterday when we had NO problems for the first time), which redeem the difficult times that put me in the previously explained state of mind.

At the moment, we've been doing his treatment very early in the morning (around 5a), for several reasons. The first being that Dave and I are both here consistently at that time and can manage Ben, the machine, and the babies (when they wake up) together. Second, we get it out of the way and Ben's free for the rest of the day. And third, Ben's a very heavy sleeper, so he's able to fall right back asleep during his treatment. After all of the hospital time he's put in, he could sleep through a tornado. If he weren't able to do sleep through it all, we'd rethink the time frame, but it seems to be working right now.

Many of you know that I'm NOT an early riser, but this week has me up as early at 4a to get the machine set up and ready to roll. And for some strange reason, I don't mind at all. In fact, I kind of like the quiet of the morning (aside from the hum of the machine) and how much I can get caught up on in this little section of the house while Ben's treatment is running. As long as I get a nap when Max and Ava nap, I'm good. :) We'll see how long this newfound love for being up at the crack of dawn lasts.

One of the issues that we've been dealing with almost daily is that Ben's catheter isn't working well again. There are a variety of reasons why this keeps happening, all of which we are going to be exploring on Monday when he goes in for his next check up. One of the reasons is that he may just be the kind of person that clots very easily. Hoping to get this figured out so that we don’t have to mess around with fixing that every day in addition to getting the treatments going. It's all a process that takes patience and time to figure out how his body reacts to everything and what we need to do to make it work more efficiently. Patience. Ahhh.

As for Ben, he seems to be doing really well. His energy level has picked up even more, which is so refreshing to see. He smiles more. He's still a pretty solemn guy, but he's noticeably brighter. That's even more refreshing to see. He's looking forward to his trip to FL next week already. He leaves on the 28th and returns on the 31st. Everything's falling into place to make it work. Crossing our fingers that nothing happens between now and then to prevent him from going.

Everyone else is well. Max and Ava are readjusting back to reality - the kind where there isn't someone new here to entertain them with new and exciting adventures on a daily basis. Just plain old Mom! :) Hard to say if they're just being two years old (fun, but loud and cranky when they don't get their way), or if the past several weeks have thrown them off. Hannah has a new babysitting gig three days a week, so she's excited to be making some money.

Despite the downs of the week, I will admit that this is the best alternative for Ben's dialysis needs. And for our family's needs as well. We are all able to be together in one spot, and we can run around doing regular old summer stuff. I'm personally enjoying the newfound hours I now have!

Today's treatment has been running smoothly, giving me this time to write. Hoping that it continues and we can have a second day free of complications.

Wishing you all happy, relaxing, and even lazy summer days ahead!

Love,
Michelle

Thursday, July 15, 2010 10:20 PM CDT

Despite how hideous the last six weeks or so have felt, we have FINALLY made it to our goal!! :) Today we completed our Home Hemodialysis training and brought all of the equipment home with us. Tomorrow morning, our wonderful training nurse will join us here to get us completely settled in...and then we're on our own! Well, maybe not completely on our own - I'm certain I will be making daily phone calls with questions for quite awhile, but at least we won't have to drive back and forth six days a week anymore!!! We will have to meet with the dialysis team monthly for a care conference, and in a couple of weeks, Ben's oncology appointment has snuck up on us as well. Our next care conference turns out to be the day after the oncology appointment, so we'll have two days in a row of appointments. Better to get them out of the way and make room for more fun. Granted, we won't have this first month free of Marshfield trips, but to bring it down from what we were doing is a welcomed change.

Ben is feeling the best I've seen him feel in so long. His mood is light and happy again. He seems comfortable and even has some energy. I think meeting this goal has been a burden lifted off of all of us, but probably the most for him.

Dave and I were able to catch Hannah's last softball game after the appointment. It was a great game, they played well and won the game. What a nice way to celebrate what we consider to be the beginning of our summer. A perfect summer night! Wishing she had more games, but glad that we were able to see all but one this season despite the intensive schedule we were keeping up.

And so our summer begins...what to do first, what to do first????

Love,
Michelle

Monday, July 12, 2010 11:51 AM CDT

The boys are on their way home!

Of course, we have no idea what the deal was, as seems to be the case for most of his recent stays, but since fevers & pain subsided and nothing came back on the cultures, there is no reason for him to be there.

We will make another attempt to get this training completed this week. Should be home with all of the equipment to do his dialysis at home by Friday if all goes well with the training the rest of the week. Woo hoo!! Light at the end of this particular tunnel.

Ben got some special phone calls while in the hospital that really lifted his spirits. MANY thanks to those that called and wrote - you know who you are! We really appreciate anyone who's willing to help Ben find his smile and sense of normalcy.

Please keep Dave's nearly 100 year old grandmother in your thoughts and prayers as she is struggling with some health problems. She is one of the most amazing women I've ever met and has made a huge impact on the people in her life. A classy, compassionate and graceful woman indeed!

Love,
Michelle

Friday, July 9, 2010 9:05 PM CDT

***Saturday addition: Ben's morale is in the gutter at this point. If anyone would like to call him, or email him, or drop him a line in his guestbook, it may help a bit. Our email address is on the bottom of this page, as are the hospital phone numbers. He's not exactly what I would call chatty on the phone, but he's getting to the point where he feels so isolated and could use some fresh voices or messages. I don't know if it will work, but I'm trying to find ways to lift his spirits and help distract him. Not much news to report at this point. Sounds like they're basically sitting there. Weekends in the hospital stink.***


And so another day, another road block...

Room 361. This is where you will find Ben for the next day or two or however long it takes to figure out what's going on now. Today we went in for our second to last training dialysis session before we were to bring everything home and set up shop. He'd had a terrible night last night with a lot of complaints of chest and shoulder pain (right side this time) and a fever. Within the first half hour of being at the Dialysis Center we were sent to go to see a Pediatric Cardiologist at the clinic. Which led to an echocardiogram. Which thankfully ruled out that he does NOT have a recurring pericarditis and that everything around his heart looks normal and clear. Which led to investigating whether or not he has an infection in his latest new catheter. Which brought him to Room 361.

If there is indeed an infection, his catheter will be removed and replaced tomorrow. SIGH! That's about all I know right now - time (we HOPE) will unravel the mystery, while we wait to see what the blood cultures drawn from his catheter lines reveal.

I am currently home with Hannah, Ava and Max while Dave stays with Ben until Sunday. It would be awesome if he were to bring Ben home before Monday rolls around, but if not, we'll switch spots then.

Ava and Max have had a great few days with Grandma & Grandpa Ellis. They were busy from dawn till dusk, with a little rest in the middle for all. :)

Speaking of rests...I will be doing that shortly myself.

Love,
Michelle

Tuesday, July 6, 2010 8:51 PM CDT

Hello!!

It's looking like this may be the last full week of training. We're shooting for early next week to bring everything home and do this thing! Depends on how confident all of us feel (including our trainer) before we venture out on our own.

To say our schedule has been taxed probably defines the word 'understatement'. We have had intermittent moments of time that haven't revolved around driving, training, dialysis, medication management, finding homes for medical supplies, managing three other children's needs and attending as many softball games as we can (I think we only missed one!). But I find myself in that trap of not being able to focus and not feeling like I'm maximizing the moments that are supposed to be relaxing and fun and all about summer. Only one more week.

All of our babysitters have been amazing - everyone has brought something new to the table to entertain our little Lansings. They are handling things amazingly well - they actually seem to like the adventure of it all. Big relief as I was concerned that they may lose a sense of trust in their worlds.

Uncle Nick, and cousins Brian and Jack were just here for a week and did an amazing job holding the fort down while we were away every day. Nick has a crazy amount of energy - it's insane, really. The kids adore all of them, so it was a fun week for them. Not sure if fun is a word Nick and the boys would use to describe it. I think I heard their tires squealing after they pulled out of the driveway - and possibly a few YAHOO's yelled out the car windows. :)

Ben has been invited to go on a four day "reunion" trip with the Circle of Friends group this month. You may recall the trip he went on in the winter in Wausau, WI. They have a follow up trip for the kids so they can meet up and hang out again. But this time it's in FLORIDA! He's been cleared to go (so far....crossing fingers) at this point and is very excited. There are plenty of medical staff that go, so someone will be able to handle Ben's medical needs. His own dialysis team here will be in CLOSE contact with them daily. He's set up to have a dialysis treatment at an all children's dialysis center down there. Should be a great jump start to the summer that never began for him. They'll be in St. Petersburg, staying right on the ocean front, going to a Rays game, spending time on the beach and going to Busch Gardens. Pretty amazing experiences lie ahead for him!! We'll miss him, but I think he'll be glad to get away alone for awhile.

Hannah's been the only constant around here. She's so reliable and dependable and amazing. I'm trying to give her opportunities to get out and have some summer fun of her own. Everyone's been doing a great job of including her too. Hoping to do more of that for everyone once we are all home full time again.

I'll end with a poem that Hannah recently wrote and shared with me. I thought it was lovely and wanted to share it with you (with her permission, of course). I'll post it on Ben's main page as well.

HOPE
What is hope?
Hope is the rainbow
after the storm
bringing promises of laughter and sunshine
and better days to come
Hope is knowing that a bad day is just that,
one bad day
And that, no matter how bad a day it is,
everything will be better tomorrow
or the next day
Someday
What is hope?
Hope is a child's laughter
or a bird's song
in a place where sadness intrudes
Hope is the knowledge that
every little thing is gonna be alright
and that, somewhere,
there are flowers
and music
and joy
What is hope?
Hope is what is left
when everything else is gone

Hannah Marie Lansing
July, 2010
Age 14


Wishing you all a peaceful and hope-filled life!
Love,
Michelle

Wednesday, June 30, 2010 9:40 PM CDT

Things have been going relatively well. Ben's feeling MUCH better - breathing better, more comfortable, more energy, eating like crazy. So we are confident that that issue is resolving.

We do have another little detour that we hope will solve an ongoing problem with his catheter. It hasn't been working well for awhile now, and we were hoping that we would be able to fix it using some special medication to clear the line. The meds aren't working, the catheter's still fussy, so the final decision was made today to have it removed and replaced on Friday. We weren't looking to add more procedures to his to-do list, but a well functioning catheter is a must before we can go home with him. He's taking it much better than I anticipated. Yes, he's irritated and annoyed, but he's on board with the plan. I'm impressed by his resilience, but I'm also bummed for him. He's been feeling like nothing is going right for him (and honestly, that's not far off from the truth lately). Friday will be a long day. Catheter replacement in the morning, then dialysis afterward, then home again, only to turn around the next morning and head back to Marshfield for more dialysis and training. I'm sleepy already.

It's a good thing that there are so many things to be grateful for, or I'd be a pretty bitter person!!

Much to do so I will sign off - just wanted to update about Friday's change in plans.

Love to all,
Michelle

Sunday, June 27, 2010 2:44 PM CDT

The boys are coming home today! They should be on the road as I type this. Ben seems to be feeling much better after getting that fluid drained. He and Dad spent the weekend hanging out while Hannah, myself, Ava and Max did our thing at home. It'll be nice to do the "all under one roof" thing again. :)

Tomorrow we jump back into training in Marshfield and will do six days a week rather than five since we don't want Ben to have any more opportunities to hang on to any extra fluid and have further complications. I don't know how much this detour has thrown us off course, but hoping to wrap up training mid-July and get him home for good. This is not the kind of thing to rush through though, so we'll just take whatever time we need.

After sleeping in a not so cozy recliner in a not so quiet PICU room for four nights, I felt like I was sleeping on a cloud when I got home. My back isn't letting me forget what I did to it, but with some stretching, it should forgive me.

Here's to a productive week of training, no more complications to slow us down, and Ben feeling like a new person again. He needs a break!!

Thanks for all of your thoughts and prayers and all of the amazing things you do to keep us afloat. We love you all!!

Love,
Michelle

Thursday, June 24, 2010 8:55 PM CDT

Hello!

Things are turning in the right direction today. We were able to identify the source of the problem FINALLY. First of all, forgive me for my poor explanation...it's pretty bad, I'm the first to admit. Combine that with major fatigue and we could have a mess. :)

He has something called Uremic Pericarditis, which was likely caused from not having adequate dialysis, causing the fluid to build up gradually. Prior to his peritoneal dialysis catheter infection, his treatments were slowly declining in the volume of waste removed, and there were likely some pockets of fluid that the dialysis just wasn't able to reach.

One of the treatments for this is to first drain the fluid around the heart, which was done when the chest tube catheter was placed on Tuesday. Once the fluid is drained, it's cultured to verify if it has become infected, or if it is likely due to dialysis. We found no evidence of infection and signs that it was more of a dialysis related issue.

He was then taken off of the antibiotic that they had him on as a safeguard until the tests started coming back. Today the chest tube was removed (that was quite the experience!), which has been a huge relief to him because the chest tube was very uncomfortable and causing him a good deal of anxiety on top of the discomfort.

Tomorrow he will be transferred to the main pediatric unit - hooray! They are going to do some intensive dialysis over the weekend to try to get the extra fluid removed, and then Ben will be released on Sunday after his treatment. We will then jump right back into our training schedule on Monday in Marshfield. I want a vacation! :)

I feel like I'm talking in nonsense circles, so I'll leave it at this and be back when my head is more clear. Thanks for hanging in there with us!

Love,
Michelle

Wednesday, June 23, 2010 8:32 PM CDT

We didn't learn a whole lot today, but Ben is feeling much better already. His breathing is normal again and he's way more comfortable than he was yesterday. The only thing that's causing him grief is the catheter. It's looking like that will possibly come out tomorrow, so that would be a welcomed change for him.

The pathology reports aren't back yet, so we don't know what route to take. We'll hopefully learn more in the next day or two so that his doctor can make a plan and get us home again.

I'm comforted by seeing Ben improve gradually all day long. If all goes well, we'll be moved from the PICU tomorrow to the main Pediatric floor.

Today was a full day - lots of visits from the team of doctors working with him, an echocardiogram, 3 hours of dialysis, a dressing change. The hospital isn't really a place to rest.

We're off to bed early tonight. Hopefully it will be a quiet night!

Love,
Michelle

Tuesday, June 22, 2010 9:57 PM CDT

Today was a long day, but seems to be ending on a better note.

Surgery was delayed until 5p, so I had the day to try to keep Ben chilled out when he was wanting to freak out from his chest and shoulder hurting and about not feeling like he could breathe well. He did fantastic dealing with it for most of the day, but deteriorated the closer we got to surgery time. We ended up giving him some medicine to relax him and he did great going into the procedure.

The procedure went smoothly. The temporary catheter is placed and there wasn't an alarming amount of fluid around the heart, so that was good to hear. Now we have to wait and see what the lab results say and form a treatment plan from there. It can take 24-48 hours to receive the results back. In the meantime, we are spending the night in the PICU and if everything goes great tonight, he will be put in a room on the regular floor. By that time, we'll hopefully have a plan in place and can make our way home.

He was in a good deal of pain after the procedure and it took a bit to get that under control. Right now he seems to be settling into a comfortable place. Glad to see that and hoping that he has a totally comfortable night so that we both can rest.

Looking forward to learning more about what's going on inside Ben's tired body and very much looking forward to fixing it!

I'll be back when I know more.

Love,
Michelle

Tuesday, June 22, 2010 1:43 AM CDT

Hello all!

Ben is back in the hospital with another complication. Today he was admitted into the PICU due to yet another fever, as well as pain in his chest and shoulder, making it difficult for him to breathe. A chest x-ray showing his heart appeared large, led to an echocardiogram showing that he has fluid around his heart, led to scheduling a surgery for tomorrow to address it, led to me sitting in the PICU room, unable to sleep despite how tired I am.

Hoping for things to go smoothly tomorrow and that they figure out exactly how to treat this so that we can move on. Our home dialysis training is temporarily on hold until we get this resolved.

That's about all that's happening I'm falling asleep as I type this, so that's my cue to wrap it up.

Much love,
Michelle

Saturday, June 19, 2010 9:48 PM CDT

Hello!

There's really not much new to say, but I thought I'd post a quick update anyway. It's a good excuse for putting off reviewing my training notes in an effort to make some sense of them. :)

So another week of training has passed, and things are going well. There is still much to be learned, but we are feeling more comfortable with some of the basic skills from last week as we repeat them over and over. The days are long and tiring (especially for Ben!!), so it was good to have only five days of training this week. I'm still very wary of having to do this at home, but I remember feeling the same way when we were trained to do peritoneal dialysis at home. I'm really hoping that, even though this is a completely different and much more complicated therapy, I will feel as comfortable with this as I was with the other.

Ben is slowly but surely showing signs of improvement in most of the areas he was having problems with when this all started several weeks ago. He continues to have a real appetite - that's a battle I don't miss. His blood pressure is coming down to the point where his doctor has been slowly lowering his blood pressure meds. The fevers were improving through the week, but he did spike another one after dialysis this afternoon and has had one since. Hmmmmm. Energy level is still very low, but his labs showed that he was low on iron, so that would make sense.

This week is pretty much a repeat of last week. We've been cramming our heads with more information than we can hold, Hannah's been helping our wonderful babysitters and playing softball twice a week, Ben's going with the flow, and Max and Ava are loving all of the exciting things they've been up with their babysitters. Rarely a dull moment!

Thank you to each and every one of you for the many things that you've done to make all of this doable!! You know who you are and what you've done - to say we appreciate it is truly an understatement. We can only hope that you know in your hearts that we do.

Much love from us to you!
Michelle

Friday, June 11, 2010 7:41 PM CDT

Hello!!

The first week of training is almost done! Tomorrow will be day six, and then Sunday we are getting a break. And, BONUS...starting next week, instead of training six days a week, we will only train for five. They don't want to burn us out.

Overall, it's going very well. Ben started the week off on shaky ground, being extremely cautious and protective of his catheter (understandably so). It was a rough first few days of him resisting things. He always would cooperate in the end, but it wasn't the easiest task to get things rolling with the treatments. His guard was up and his morale was down. But we had a breakthrough yesterday and today where he practically sailed through the process. Much thanks to the distraction of the iPod Touch that some friends gave to him! This change truly felt like a giant boulder had been removed from our path. I couldn't imagine having to manage his protests AND my uncertainty while trying to concentrate on putting him on this machine once we were home!

The training lasts for about four hours a day rather than three, but we're cramming a lot into that time. We have been focusing on getting the machine set up properly this week. There is a lot more to this machine and treatment than Ben's last one. A LOT more. I'm not completely freaked out yet, but don't doubt that will come in due time. :) There is a ton more to learn, and so much to do to get him ready to come home for treatments here. I can understand more clearly why the training period lasts for 4 to 5 weeks.

A positive is that we are beginning to see an increase in his appetite since we've started the daily treatments. He's eating so much better, which is awesome considering he lost 10 lbs during his three week hospital stay. His activity level hasn't been the greatest, but he's probably still a bit anemic from the past few weeks. Tonight we did notice an improvement in that area though, so it's been encouraging.

He is still getting low grade fevers almost daily, and no one has been able to put their finger on why. We're now eliminating medications no longer needed (due to the change in therapy) to see if he is getting medication induced fevers.

Hannah, Max and Ava are doing excellent. They've been having lots of mini adventures with their babysitters. We are so fortunate to have an army of amazing people who are coming here to take care of them (with much of Hannah's help!!!!). Probably not the ideal way to kick off her summer vacation, but Hannah's been handling it all with grace and an open heart.

What’s been really great is that, even though I’m not able to be here for our usual daily routine, we’re still all under the same roof every night, I’m able to be with all of the kids every morning and I'm home in time to play with and tuck them in as well. Much better than bunking at the hospital for days on end wondering what everyone at home is doing.

Not sure when I’ll be back to update – maybe after another week of training. Hopefully I’m not posting in meltdown mode by then! :)

Love,
Michelle

Monday, June 7, 2010 7:15 PM CDT

Day one of home hemodialysis training done! It was a quiet day since Ben's nurse basically wanted him to get used to the new machine and she wanted to see how his body reacted to it. Tomorrow we'll dig in.

When I dreamed of having children years ago, never once did it cross my mind that cleaning my son's blood would be part of our daily routine. Of course, no one knows what will be expected of them as a parent - so we just have to rise to the challenge because that's what parents do!

This will be an interesting few weeks........

Michelle

Friday, June 4, 2010 10:16 PM CDT

Another mixed bag day ranging from awesome to hideous enough to either cry or just laugh. I did both. The first half of the day was the awesome part and the second half I would rather have not experienced.

Awesome first. Ben's fever and chest/shoulder discomfort managed to disappear over the night and he was able to stay out of the hospital. He awoke very tired, but after dragging himself out of bed he decided he wanted to attend his last day of school. YEA!!! Uncle Mike (thank you Uncle Mike of all trades) drove him in since his decision was made AFTER the bus picked Hannah up, and he stuck around until noon, when school ended. He was able to attend his awards ceremony and received several awards that he was proud of. I personally was especially proud of his Good Sportsmanship award he received for Physical Education! I find attending the last day of school is always a delightful experience for me, watching as an outsider. The building is bursting with positive energy, hugs, excitement, anticipation of good things to come...as well as frantic last minute packing and sad goodbyes after happy experiences with particular teachers. It's wild because, one minute there are a gazillion (okay, it's Almond-Bancroft, so maybe not quite a gazillion) kids whirling around, and then suddenly, the buses fill up, the teachers do their annual last day of school waving to kids hanging out of the bus windows, and then...it's quiet. Of course, that last part is NOT from the perspective of the poor bus driver who has to get these charged up students home still. :)

Second half of the day begins...after school, we headed off to Marshfield for a dialysis treatment. Typical end of the year celebration kind of stuff, right? :) Ben's buddy came along for the ride so it was a nice way to go into it. When we arrived, we were instructed to head up to the adult dialysis treatment room (short staffed that day, so no pediatric friendly room/nurse today). I've never experienced a treatment in there with Ben before and I can safely say that it is NOT an area with children in mind in any way, shape or form. Not that it should be expected to be since it is geared toward adults. But it sure made for one of the most agitating dialysis treatments to date - for both Ben and I. We muddled our way through it and finally left the treatment room at 7:30p. Ben's friend was AMAZING to sit through five hours just to hang out with Ben - even though Ben tried to sleep for about 2 of those hours. They were both troopers. By the end, they were both starving, stir crazy, and feeling overtired silly so we went out for dinner, headed home and arrived a little before 10p.

As it sits now, Ben has a fever that is beginning to rise slowly. We are hoping that the Ibuprofen we just gave him will stop it from having another party in his body. He's super tired and weak from the treatment. Today they pulled six pounds of waste fluid off of his body in four hours, and then pumped him with two antibiotics over the course of an hour. When he first stood up, he told me he thought he might just need a wheelchair to get to the car today. Ugh!

Blood pressures are still ridiculously high, even after dialysis treatments. The hope/thought is that they will stabilize after he begins to receive daily hemodialysis vs. just three times a week. Our training for daily home hemodialysis will begin on Monday, and since we are training directly on him, he will be getting those daily treatments after this weekend. This is supposed to be much gentler on his body and should give him more energy and increase his appetite. Lots of shoulds that I hope pan out for him.

Ended the day on a sweet note - came home to Max and Ava sleeping soundly in their new "big kid" beds for the first night. They look so little in them! I was told that they loved climbing into their new beds. Very cute stuff. They're not babies anymore, even though I still find myself calling them "the babies". :(

My dad's surgery was a success and he's already walking around better than he did when he went in on Wednesday - no pain either. Amazing what our bodies can tolerate! It's good to know he's comfortable again.

Looking forward to a weekend of absolutely no plans or appointments or places to be. Hoping for a nap in the hammock, weather permitting. If not the hammock, a nap inside will do just fine too! :)

Love to you all,
Michelle

Thursday, June 3, 2010 10:41 PM CDT

AMAZING DAY:
~HOME surrounded by family
~Spent time in Ben's classroom and enjoyed watching him catch up with his classmates again, rediscovering his smile
~Watched my first baby graduate from 8th Grade and receive multiple awards for academic excellence...AND receive the Student of the Year award - I'm ridiculously proud!!
~Watched Hannah's team win their softball game tonight
~Received many hugs and kisses from Ava and Max

Confusing evening:
~Ben's losing energy, gaining fever and complaining of chest/shoulder pain
~Call to the hospital has me watching/treating him at home unless things get really bad since he is due back tomorrow for dialysis, and is pumped with antibiotics already
~Pondering how much the "unless things get really bad" statement has changed over the years for us. What exactly is "really bad" anymore?

Going to bed. Hoping to wake to a day without mysterious fevers playing with my child's body and my mind.

Love,
Michelle

Wednesday, June 2, 2010 3:35 PM CDT

We are going home!! :)

The CT scan showed improvement with no obvious signs of infection. So still no answers, but no fevers either, which brings us back home. Hoping for an uneventful day tomorrow and then we head back for his last hemodialysis treament on Friday afternoon. We start our training on Monday.

Looking forward to going to Hannah's graduation ceremony tomorrow, as well as Ben's awards ceremony and last day of school on Friday morning.

My dad's surgery went well and he begins the healing process now. He'll be glad to be rid of the pain he was having.

Things are looking up!! :)

Love,
Michelle

Tuesday, June 1, 2010 8:57 PM CDT

Really not much going on. Ben's had a very good day - no fevers all day, huge appetite, he kept busy with some crafts and we went on some walks. Should have brought homework - doh!!

The plan for tomorrow is to do a CT scan to compare the last scan, looking for any changes that could potentially be the cause of the off and on fevers. His blood pressure has also been running very high, despite getting regular dialysis, eating a renal friendly diet and taking two blood pressure medications. After the scan he will have a four hour dialysis treatment. Assuming that he doesn't get any fevers tonight, nothing is found on the scan tomorrow, and his dialysis run goes smoothly, we will go home tomorrow after his dialysis treatment. Some little hurdles to get over to be released, but they are little and few, so we can do this!

There seem to be quite a few children here working very hard to overcome some serious obstacles. It's humbling to see these children and parents going through much tougher times. Nothing like a little perspective staring you in the face to gain some gratitude for what health Ben does have, which he seems to be abundantly wealthy in it compared to some. My heart aches knowing what some children and their parents are facing and having to come to terms with even as I type this.

Tomorrow will be an early and busy day, so I will wrap this up and try to get some sleep.

Much love,
Michelle

Tuesday, June 1, 2010 8:15 AM CDT

Back in the hospital chasing our tails over fevers again. Hopefully won't be a long stay this time. I have a feeling this will be a quicky. Miss Hannah has her 8th Grade graduation cermony on Thurs and he wants to be there, so we have extra motivation. My dad is having a total hip replacement tomorrow and would also appreciate some prayers sent his way. Happy summer!
Love,
Michelle

Tuesday, May 25, 2010 9:53 PM CDT

Dave took the day off yesterday and took Ben to his dialysis appointment. The day started out a little rough with Ben getting sick first thing in the morning. He did well on that end of things for most of the rest of the day, but came home completely exhausted. They were able to pull off 3 lbs. of waste fluid from his body in four hours. He felt like mush afterward. Today he slept late, and milled around the house in a sluggish sort of way. Not that I blame him. Eventually he started to gain some energy and ate a little, spent a little time outside and even squeezed in some tutoring at home with a visit from his teacher. Later on, his Art teacher dropped by with his art portfolio from the year and a nice gift of a framed piece with art created by each of his classmates. Very nice. Tomorrow he and I will head back to Marshfield for another dialysis treatment. It was nice to stay home for the last two days, but I know those days are limited for me. Hoping that the Home Hemodialysis training will go extra smoothly and we’ll get home for good. That training begins on 6/7, so in the meantime, we’ll bring him in for thrice weekly treatments. Not the best scenario for a kid, but it is what it is.

Now that it's been a full TWO days home now, the feelings have ranged from delight, to crazy, to grateful.

Delighted to be home and sleeping in our own beds. To know that the people I love are all where they belong - within my reach. To hear birds chirping instead of IV's beeping. To smell fresh air, mowed grass, and flowers blooming, instead of hand sanitizer, alcohol pads and masks. To hear my toddlers call me Mommy after wondering if they’d forgotten who their mommy actually was.

Crazy to jump back into a life where the two fore mentioned toddlers think that the world revolves around them, and that they are entitled to spend an entire muggy 90 degree weather day outside despite the fact that 1. Mommy is used to air conditioned hospitals, and 2. their big brother is inside needing attention as well. Add to that the end of a school year. Really? All fun activities have to be tacked on to the last two weeks of school? REALLY?? Tack on trying to keep up with Ben’s medical needs, plan ahead for future appointments, and just plain old normal, everyday life stuff that comes with having a family of six.

Grateful for what seems to be an unending supply of delicious food to help us get through the past three weeks and then some. Even the cookie supply that I may be cursing in a few days once I step onto the scale again. For the prayers and positive thoughts and kind words and generous hearts. For the fact that we live in a time that even offers things like Hemodialysis and quality health care and higher chances for survival. For options. For opportunities. For life.

Until next time…
Michelle

Sunday, May 23, 2010 3:26 PM CDT

HOME HOME HOME!!! Since Ben had no fevers all weekend and did not end up needing dialysis today, Dr. Haws sent us home!!! Wahoo! We have to be back there tomorrow at 9:00 for dialysis, but we are home now! We even got home in time for Michelle and I to both attend Hannah's piano recital. Oh boy!
Talk to you later,
Dave

Sunday, May 23, 2010 7:10 AM CDT

Good morning!
It looks like it will be a lovely day. Ben was still sleeping so I took a walk already this morning. Ben and I did the same yesterday. We even left the 3rd floor here and went and sat outside the entrance for about 10 minutes! That along with the time he spent outside with Aunt Sarah marks the first two times he's been outside since he got here. I have to admit it's hard to convince an 11 year old that there are better things to do than lay in bed and watch TV. I had to be a bit forceful to make him put shoes and a t-shirt on. But I'd like to get out of here someday so I am less interested in being the nice guy! :) Aunt Sarah came and sat with Ben yesterday so I could go to work for a few hours and then catch a few innings of Hannah's first softball game. That was REALLY nice. We've again had so much help over these last three weeks. From the hard work put in by our families to the meals and wonderful gifts that have been given to us, it makes this cruddy period a little more bearable. THANK YOU THANK YOU THANK YOU!
Not much new with Ben yesterday, it was kind of a day off. He had no fevers, so that's awesome. I'd guess we will do dialysis today, but we will see. Will likely do another CT scan tomorrow as none of the blood cultures from Thursday's procedure have grown anything. So we still don't know what we are dealing with. Tomorrow's CT would be to see if anything new comes up from the one they did two weeks ago. Could have missed something. I hope it's clear, but at the same time it would be nice to pin this all on SOMETHING...
Go out and have a great day! Ben and I will definitely get outside again today, at least if it's not too hot! Oh, and our dear Hannah has her piano recital today - good luck Hannah!
Love,
Dave & Ben

Thursday, May 20, 2010 10:01 PM CDT

Another long and tiring day for Ben, but he's now sleeping comfortably. This morning he had the Bronchoscopy procedure done to retrieve some fluids from his lungs to get cultures done. For a 15 minute procedure, the process of getting him ready for sedation, doing sedation, and waking from sedation ate up over three hours of the day. By the time he was fully awake and taking clear liquids okay, he was able to eat his first meal of the day at 3p. Three rapid cultures came back negative so far - one of which was for a fungus, which our doctor was rooting for it NOT to be. Apparently that would have been difficult to treat and was on his list of least desirable types of infections. So good news on that. I'm not sure what the other two negative stain slides were. So, good news that we have three things coming back negative, but bad news that we still don't know what is growing in his lungs, therefore can't treat it. Hopefully the cultures that trickle in over the next day or two will give us some clues. In the meantime, we try to keep him comfortable when his fevers return, let him rest, keep him walking, and distract, distract, distract.

Today was not a good morale day for him. He's missing home, frustrated about being here still, and feeling sick on top of it all. Sure don't blame him! He's done everything that everyone has asked of him, and has gone above and beyond in effort to do his part to recoup, and yet it's not getting him anywhere. Yet. That day will come and his hard work will pay off, but it's hard to stay focused when you're getting beaten down every day with some new bad news of some kind or another. Despite his rightful crankiness, he still comes up with funny things to crack me up - usually out of the blue when I'm least expecting humor to fly out of his mouth.

The plan for tomorrow is dialysis in the morning, possibly more labs, and waiting for culture results to come back to give us answers so that we can begin treating him properly. Dave will be arriving in the evening so that I can get home for a couple of days. The trend seems to be that when Dave's here, everything is uneventful, so I'm hoping that will be the case this weekend. A little Dad therapy to cure his ailments! He'll have been in the hospital for three weeks on Saturday, so we're overdue to go home!

My dad just received news today that he is going to need to have a hip replacement in the next few weeks. He'd appreciate being added to your thoughts and prayers! He and Mom have been so terrific with holding the fort down and loving Hannah, Max and Ava in our absence. Dave's mom has been doing a lot of driving Hannah to and from softball practice and piano lessons, as well as keeping track of stocking the house with necessities. And we've been lucky to have lots of good friends bringing over food to keep the fridge well stocked and bellies full to save us the time of meal preparations and allowing us to focus on the many other things that need tending to. Everyone has been amazing, and as I've said before, we are blessed to be surrounded by loving people.

Hoping for some answers tomorrow. Looking forward to seeing the rest of my family tomorrow. Glad that we are able to be with Ben all the time while he stays here. Wouldn't want that any other way.

Much love,
Michelle

Wednesday, May 19, 2010 11:16 AM CDT

WEDNESDAY P.M. UPDATE...

Ben had another high fever shortly after dialysis ended and was pretty miserable again. He was not very pleased about having to have more tests done, but we may be on to something finally.

The echocardiogram looked great, but the chest x-ray showed the fluid in his lungs has worsened since last taken. Not sure what's in his lungs, so tomorrow they are doing a procedure to retrieve some of the fluid in there to culture it and HOPEFULLY figure out exactly what kind of infection/bacteria/fungus he has growing there. The procedure will be done under deep sedation in the PICU, so he should not remember anything and shouldn't have pain afterward. He had a rough morning and afternoon, but has seemed to have perked up a bit this evening. His appetite is slowly returning, but still isn't too excited about eating. Because of the dialysis treatments, he's getting VERY thin. Hopefully once we get home and he becomes more active and is eating normally he can pack on some good weight.

This has been yet another crazy day to add to the list of days we've had here, but I'm hopeful that the next couple of days will give us some answers.

Looks like we'll be doing another weekend in the hospital. I'll see Dave for about an hour as we pass the baton on Friday so I can go home for a bit and then again on Sunday when I come back. Sigh. I really, really miss the rest of my family!!! :(

*********************************
MORNING UPDATE:
Not off to a great start today. He woke up getting sick and no longer feels like eating. He had fevers last night which have postponed our trip home again - looking at probably Friday.

Today will be more labs, dialysis (currently running now), an echocardiogram, a chest x-ray, watching and......waiting. Which I'm actually fine with because I don't want to be sent home until he's much better than he is right now.

The insanity continues...........

Tuesday, May 18, 2010 11:17 PM CDT

It's been a long 17 days. I swear that Ben has hit every bump in the road that can be hit during this hospital stay. Dave was being very nice how he described how things are going. I won't get into the actual and unpleasant details, but I will say that we hit an all time low last night. I don't want to even talk about it other than we hope to never repeat it.

Today was much better. His catheter placement procedure went well and we've finally found a pain medication that works well with Ben's body. That's been a big challenge (and possibly partially due to last night's fiasco, of which I'm not talking about). :)

Ben and I layed down to take a nap this afternoon after losing sleep for so many days. For those of you that know me well, that's one of my favorite "activities", so I was in heaven when we managed not only to sync a nap, but to sleep for three straight hours. The highlight of my day. :)

The plan for tomorrow is supposed to be dialysis and then go home if everything is going well. Not sure if that will still be the plan tomorrow since he's spiked a 103.3 fever toight. Ugh! More blood cultures were drawn to be sure there's not yet another infection brewing.

Since I can't predict tomorrow's outcome, I'll leave it at that and attempt to sleep tonight after such a late nap. Really hoping that his new catheter works perfect during tomorrow's treatment.

Thanks for checking in on Ben, and as always for all of your prayers and kindness. We are more than blessed to be surrounded by nothing but love. We love you all right back!

Love,
Michelle

Tuesday, May 18, 2010 12:31 AM CDT

Hi all!
Here's hoping this marathon hospital stay is almost done. Ben had his permanent dialysis catheter placed this morning, and he and mom are likely catching some sleep right now. They had a very long night. Ben is having issues with his legs getting restless and is basically just burned out on everything that's happened to him in these two-plus weeks at the hospital. He needs to bust out of there, Michelle too. The plan at the moment is to do dialysis tomorrow using the new catheter and if all goes well he and mom can finally come home after that.
As I've said before we are careful with our optimism but maybe we will have our family back together tomorrow. Check back later and we will let you know.
Thanks,
Dave

Saturday, May 15, 2010 9:43 PM CDT

Good late evening!
Just thought I would give you an update on the man weekend here in Marshfield.
We've been watching lots of movies that mom wouldn't like. We have also been doing lots of walking, and Ben has been doing a good amount of eating. One thing we have not had any trouble with today is fevers! That is one of the keys to getting out of here, so that is happy news.
Mrs. Wills and Colton came for a surprise visit this evening. How cool is that??? His teacher and a fellow student coming on their Saturday night to do a little homework! They had a great time, and I am so grateful that they were able to come.
So, that's where we are at the moment. Hopefully some light at the end of this long stay, but we will see. We are careful with our optimism around here. :)
Dave

Thursday, May 13, 2010 6:44 PM CDT

Hello!

I didn't even bother to write yesterday because, simply put, it was a lousy day.

Today started a little rough, turned pleasant, then tanked, followed up by FABULOUS news, and is now ending (at least I hope) relatively peacefully, partly due to some medication that makes the world a little nicer for a scared kid.

I'll skip most of the day and get to the good news. A CT scan was done today and we know for sure that there are no new malignancies!!! The purpose of the scan was actually to see if we could identify an internal source of infection that is causing the persistant fevers, but as a bonus we were able to learn that there are no tumors lurking about. That's, of course, always in the back of my mind. So BIG sigh of relief on the oncology end.

As for finding a source of infection causing the fevers, he appears to have developed pneumonia and there also seems to be a pocket of fluid in the peritoneum. We don't know what type of pneumonia he may have, so they are treating him as if he has the most common type until the blood tests that they took today come back and hopefully give us better clues. As for the pocket of fluid, that will be addressed with hemodialysis treatments and should resolve. So, it seems he came to the hospital with an infection in his catheter, and then developed pneumonia during his stay. Likely from being in bed for so many days. That's not to say he hasn't worked like a mad man to get up and move around to prevent just that.

That's what we think we know today. Who knows what tomorrow will bring! Regardless, it's the closest we've been to putting a name on his latest troubles, which makes me feel more settled. He will be here through the weekend for sure and Dave will be taking over for that. Still no word on when he can go home and he's definitely still not on the schedule to place his permanent catheter for hemodialysis.

One of the best parts of the day, other than the whole no cancer thing, :) is that my parents brought Max and Ava here to see us. It was so good to see, touch, smell, hear and love on them - I haven't seen them since Sunday and miss them terribly. I miss my Hannah too, but at least she'll talk to me on the phone, unlike those two busy bodies. :) Thanks, Mom and Dad!! Ben enjoyed a quiet visit with Grandma and Grandpa while I soaked up time with Max and Ava in another room.

It was another hard day with more bumps, but at least this one ended well.

Day Twelve almost done...hopefully not too many more to go before we are all under the same roof again!!

Love,
Michelle

Tuesday, May 11, 2010 6:57 PM CDT

Hi again,

We took a few steps back, then a step or two forward, then more steps back, and then a forward step or two...and so it goes.

Since I last wrote, he has spiked some fevers, had some pain control issues, decided to look at his wound, which led to a panic attack, which led to some "relaxation" medicine. Steps back. Prior to that he had put in some great walks and physical activity - steps forward. We got better control over his pain and the anxiety has eased - more steps forward. Due to the fevers, his catheter placement has been postponed again until we're sure he's healed from whatever he's been battling. Sort of a step back, but a good one. It's kind of been one thing after another - some good, some bad, but I'm convinced all have a reason for happening.

Yesterday was a tougher day - more backward steps than forward. Very frustrating. Letting it go.

Today was a much better day. Here's a walk through his day today:

He woke at 5:30a and decided that was the perfect time to get up and walk some more. My response..."Really?? Now??? Really????? You sure, buddy?" And so we walked and walked. And stopped in an activity room for a game of Scrabble. Then ran what we call our errands (get coffee for Mom, do a load of laundry, recycle any cans we may have had in the room...anything to give us a sense of purpose). By the time we returned it was 7:30a! He was wiped out. Then came the barrage of morning rounds, vitals, and answering a gazillion of the same questions over and over. Then breakfast. Then getting cleaned up after a few days of not getting cleaned up - yuck! Then he fell asleep - hard. At some point, he woke, we walked the halls and ran more errands, ate lunch and he once again fell asleep. Then his teacher from school came (THANK YOU CINDY!!!) to get him started on trying to play catch up for school. I also had a nice visit from my friend (THANK YOU ERIN!!!) at the same time, armed with a Starbucks and good company. After time with his teacher came a long game of Scrabble with Danielle, from Child Life. Ben won. :) Dinner next. By that time he was wiped out, so he took a third nap until Dave arrived for a visit after work. Currently, he and Dad are visiting while I type. It's nice to hear him having a real conversation again after being somewhat quiet for a few days.

So, where it stands right now...we sit, we wait and know that we will go home in the near future. He did just start spiking a bit of a low grade fever a little while ago, so hoping that just resolves itself and doesn't give us more of a reason to stick around. Pain is reasonably controlled. Wound is slowly healing. Ben is working hard to gain his strength and energy back.

We may go home before he has his permanent catheter placed. We've postponed training on the home hemodialysis program until June 7th, so in the meantime, once he's released from the hospital, we will come to Marshfield three times a week for outpatient dialysis. Once we begin training, Dave, Ben and I will have to travel back and forth to Marshfield six days a week for 4-5 weeks. That's a little hard to digest, but we'll adjust. After that, he'll be able to do his dialysis at home again. It will be worth the effort in the end!! Just need to figure out exactly how we are going to do this. I'm confident that will work itself out.

Looks like he won't be returning to school for the rest of the year. Our school is going to make sure he is tutored through the rest of the year - we're so grateful for how accomodating they have been. We will try to make sure he gets to a few end of the school year events - especially the last day of school.

Okay, need to spend some time with Dave before he has to leave again. Thanks for all of your love, prayers and support. We always know that we can do this because of all of the people backing us up.

Love to you all,
Michelle

Sunday, May 9, 2010 8:49 PM CDT

First of all, HAPPY MOTHER'S DAY to all of the awesome moms out there!! An especially Happy Mother's Day to my own mom, who is one of the most giving and kind people that I know. Love you, Mom!

Thanks to Miss Hannah, I was able to sleep in while she tended to Ava and Max for their morning needs. It was GREAT! My parents and brother w/his family were at the house for the day for a nice meal and visit. I was able to spend time with Hannah, Ava and Max, take a nap (even though I slept in this morning too!), visit with famiy a bit, catch up on a few things and then out the door with Hannah, Ava, Max and Ben's friend Colton to head back to the hospital for a short visit and a changing of the "guards" so that Dave could work tomorrow and I could stay in the hosptial with Ben. We did our Mother's Day celebration in Ben's room. We made it work!

As for Ben, he had a fantastic day. When we got here, he looked so much better. He's eating well, moving a little better, but we still have a lot of work to do in that area. His wound is looking free of infection - Dave got his first lesson in caring for an open wound. I have yet to learn how, but have to say that this may be the first thing in Ben's care that my stomach may not be able to tolerate. :( We'll see how it goes when I get my lesson tomorrow, but at least we know that one of us is capable.

Oddly, after everyone left, he began to complain quite a bit of stomach pain - mostly wound pain. Couldn't get comfortable and began using the pain button again after not touching it for about 11 hours today. We're also giving some Ibuprofen and Tylenol, alternating them every three hours in hopes of keeping on top of any pain tonight and getting him on more oral pain meds than IV pain meds. It's possible that all of the work he did today has just caught up with him and he's feeling it. Kind of like having a great workout after not exercisig for a long time, and then feeling it the next day.

Not sure if I wrote this in the last entry, but he's scheduled to get his permanent catheter placed on Wednesday, not that we have to stay here until then. We will possibly begin to train Thursday on the home hemodialysis unit that he will eventually be on every day at home. Again, tentative schedule based on whatever happens between now and then.

That's about it here. It's getting better. A fantastic Mother's Day gift! :)

Love,
Michelle

Thursday, May 6, 2010 9:31 PM CDT

I'm back home for the night. Uncle Brad is hanging with Ben at the hospital for the night so that Dave and I could attend Hannah's Middle School Spring Concert and Science Fair. So glad to have people in our lives that we can trust to do that. We don't want to miss out on all of the other good things going on while we navigate this new phase of Ben's health. It was a nice concert and Hannah received a couple of awards - we were very proud and it felt so good to be there. Of course, I feel guilt for not being with Ben, but with him being in good hands, the guilt isn't as intense. Plus, I got to play with my babies and get hugs and kisses to get me by for another couple of days away from them. Tomorrow morning I will plan to spend some time with them, but will have to head back fairly early since Ben has a few things lined up for him right away in the morning. A short visit, but a visit nonetheless, so no complaints here.

Today was a very restful morning and an active afternoon. He had Physical Therapy work with him on getting out of bed and trying to walk again. Not an easy task. Occupational Therapy was also working with him in basically the same areas. He was coerced into going to see Pet Therapy, but went in a wheelchair. He also finally started moving his bowels (he'd be so thrilled to know that I'm putting this on here!), so he was in and out of bed frequently for that. Just the act of getting out of bed is pretty difficult for him right now, so he was pretty wiped out by early evening. But the more he moves, the closer he gets to healing enough to leave the hospital, so hopefully that's enough motivation for him.

He's also beginning to eat again. Slowly, but he's had some real food. Lots of milestones met today - it was a physically challenging day for both he and I, a mentally challenging day for him, but a productive day overall.

Now I'm off to bed to get some real sleep, so that tomorrow I can get off to a running start. This morning was a slow jog kind of start. A very, very slow jog. Okay, more like walking, but I was up on my feet!

Until next time...
Michelle

Wednesday, May 5, 2010 9:53 PM CDT

Hello again,

It's been a little crazy around here, but tonight seems to have brought a little welcomed peace and quiet. Since I last wrote, Ben was going to be having a hemodialysis catheter placed, but the FedEx truck delivering the specific catheter ordered lost it. Ben's potassium was rising quickly and we couldn't wait any longer to delay placing a catheter so that Ben could get dialysis again. There are complications with sedating someone w/high potassium, so things were a little on the tense side when they decided to move quickly and place a temporary catheter in his groin until the permanent catheter arrives. As soon as that was placed, he was put right on dialysis for a few hours. A few hours later, he spiked a fever of 103.3. They suspected that the new temporary catheter somehow became infected as well, so they started dumping antibiotics in him and did some cultures. After some thought, they decided to pull out the new temporary catheter and place ANOTHER TEMPORARY catheter in his neck, with the thought that he needs a catheter, but they don't want to place the permanent one until he's free from infection. So, as we sit, he has one temporary catheter in his neck and is working on healing for the next few days. He's been out of bed a couple of times (not willingly) and that went well. Until his bowels begin moving again, he is still unable to eat, however he has finally begun a liquid diet. He hasn't eaten since Sunday night, so he was pleased to at least advance to that.

I was able to go home and spend the night with Hannah, Ava and Max, but felt so scattered that it didn't feel entirely well spent. Thankfully they are very forgiving!

The other big thing is that we have gotten approval to do Ben's hemodialysis treatments at home through a relatively new program. Adults have been doing it for years, but there's not a lot of data of kids doing it. Overall, it's a much better and gentler way to do hemodialysis and will allow him much more freedom to be a kid. It will be tough at first b/c Dave and I will have to train daily for 4-5 weeks before we can go home with it. Training lasts about 3 hours each day. Should be interesting trying to juggle all of this. Trying to stay focused so that I'm not looking at too many things at once. Not an easy task for me.

I think that sums up yesterday's fiasco. Tomorrow should be a quiet day - just healing time. Hoping for a quiet night and some good rest.

We are grateful for each and everyone of you - thank you for your support!

Love,
Michelle

Tuesday, May 4, 2010 10:01 PM CDT

UGH! Long day. Weird day. A "Why can't anything just be simple?" kind of day. Details later - mind's shot today. I'm home for the night while Dave's w/Ben for the night. We'll swap again tomorrow and I'll stay w/Ben the rest of the week so Dave can work. Looking forward to sleeping in my bed tonight.

Zzzzzzzzzzz,
Michelle

Monday, May 3, 2010 5:23 PM CDT

Where to begin. Hmmmm. I could start with the fact that I have a migraine. That would give you an idea of how relaxing this day has been.

Last night was a semi-restful night for Ben. He was in a lot of pain, and the pain meds made his legs feel very restless, so he was shifting around all night trying to get comfortable. We've discovered other pain meds that work better now.

Surgery to remove the infected catheter began around 12:30p and due to some complications, lasted an hour longer than predicted. Apparently part of the cathter was stuck to part of the bowel, and created a hole in the bowel, which had to be closed up. But due to the fact the some of the contents of the bowel was released into the system, there is now an additional infection that needs to be cleared up and monitored very closely. Two antibiotics were immediately given and they will continue to watch him very closely to be certain that the hole in the bowel remains closed. Worst case scenario, and infection could reopen the bowel and break it apart, wreaking havoc that we don't even want to think about right now.

We also discovered that his peritoneum is in no shape to even consider going back to doing peritoeal dialysis in the future. So our decision about hemodialysis has been made for us. Now we need to decide which way we will do it - at home or in a clinic/center setting. There is some debate about that since it is a relatively new thing to do it at home with children. His doctor is doing some research with larger hospitals who do practice this form of dialysis in children and he's also havine a meeting w/the dialysis team here to help determine if this is a good choice for Ben. Of course there are pros and cons of both. Regardless of what we end up doing, he'll have to do the standard type of hemodialysis (three days a week in an outpatient hospital setting - in Marshfield) for at least a month or two because training for the home version is 4-5 weeks in itself. This is going to make finishing out the school year difficult, but I know that they will do their best to be sure we can do it.

Tomorrow will bring another surgery to place his new hemodialysis catheter - something he's not pleased with. We may start dialysis tomorrow afternoon, but if he's doing okay, we may give him a day break and start the following day.

Right now he's fairly comfortable only because he's on pain medication. When it wears off, he's very uncomfortable. His incision from today is going to remain open for a few days so that the infection can drain better. He's grossed out about that.

I think that sums up the day today. Hoping for a pain free, restful night for Ben - he really needs that. Because of the bowel incident, he's unable to eat or drink anything for about 2 days, so he's like an angry hornet about that. I would be too!

I'll be back whenever I get back. Thanks for checking in on him. Dad just got here, so I'm off!

Love,
Michelle

Sunday, May 2, 2010 8:39 PM CDT

Hello!

I was hoping to not have to update again until May, after Ben's next "big" checkup with the oncologist. And I was hoping to say everything was going fantastic. I was hoping.

Today has been yet another difficult one to add to the difficult days we've seen. To begin though, this is NOT a cancer related problem (that I'm aware of at the moment anyway), but rather a dialysis complication.

Since I find myself with short bursts of time to get away, I'll keep it brief and leave details for another time. What it boils down to is that Ben's peritoneal dialysis catheter has become infected and can no longer be used. Tomorrow he will have it surgically removed. Tuesday he will have a hemodialysis catheter placed and will begin hemodialysis three times a week on a temporary basis (we HOPE). After a 4-5 week training period for Dave and I, he may possibly be able to do hemodialysis at home, rather than going back and forth to a hospital or dialysis center. This would be the much desired end result of the two hemodialysis options. Too little time to explain why, but basically quailty of life would be significantly better with the home version.

So, long story short, he and I are in the hospital and will likely be here for the rest of the week. He's disappointed about what's happening, but doing better now that the pain meds have kicked in and he's not doubling over in pain any longer. He's in room 358. Not sure that he really wants to talk to anyone though.

I'll be back when I have more time and I know more.

Love,
Michelle

Friday, February 19, 2010 9:33 PM CST

It’s been a long time since I’ve been on here, which is always a good sign. The less I’m on here, the more we’re living life with every day and perfectly normal ups and downs that don’t involve cancer.

Today was a big day for us. After three months since Ben’s last oncology check up (which felt more like years), we went in for an ultrasound and chest x-ray to find out that his current streak of good health continues!! A tension filled 30 minutes of watching the ultrasound monitor gave us the information we were hoping to hear…there was nothing unusual noted on his liver, or any other organs that they were studying. HUGE sigh of relief! The chest x-ray came back with the same magnificent news – there’s nothing on his lungs that doesn’t belong there. Awesome!

This milestone puts us six months past Ben’s last chemotherapy treatment. In three months, he will be reevaluated with a CT scan. This is our little chunk of time to continue to live life like it’s meant to be lived – as if cancer doesn’t dictate our lives. It’s a little hard to completely ignore it given its persistent history, and that he’s on dialysis twice a day due to the cancer taking his kidneys away, but we’ve been getting better at it!

As for the kidney transplantation end of things, each of these clean test results places us closer to being eligible to begin testing for a live kidney donor, with myself being the first one to screen. The process is quite extensive, so it would take another six or more months to actually secure a transplantation date…assuming that everything goes smoothly with the screening process, and Ben has no more tumor recurrences in the meantime, along with a vast number of things that can slow down the process. This entire paragraph is exactly what I should not be doing…putting the cart before the horse. Ideal thinking would be taking each step one at a time. But there’s this whole series of events that have to be carefully orchestrated in order to make it all come together, so I find it hard to discipline my mind to stay focused.

With that said, for right now our eleven year old son is just a kid, trying to navigate and make some sense of the world around him; just like every other eleven year old kid. He’s going to attempt to find out how many showers he can skip before we notice. He’s going to argue about taking out the garbage and brushing his teeth and eating more vegetables and doing his homework before playing a video game. He’s going to play his music too loud. He will purposely annoy his big sister to see if he can get a reaction from her – and he will succeed. Every single time. He will surprise us with a compliment. He will give us hugs and tell us jokes and make us laugh. He will play with his baby brother and sister and make them belly laugh, which will make us laugh. He will be a loyal friend, play hard, come home dirty, and sing his favorite songs in the shower with abandon. He will be our eleven year old kid.

And so tonight, there will be no fighting cancer. No worrying about cancer. We can all go to sleep with peace of mind because we will know that, for right now, he is cancer free.

Thanks for checking in and listening to me as I unravel the mess of thoughts that get tangled in my brain. Wishing each and every one of you well...

Love,
Michelle

Thursday, January 7, 2010 9:12 PM CST

HAPPY BIRTHDAY BEN!!!!!!!

Love you,
Mom, Dad, Hannah, Ava and Max

Saturday, November 28, 2009 5:13 PM CST

Happy (belated) Thanksgiving to all!

A quick update to celebrate another little milestone for Ben...

Yesterday he was able to have the portacath that was used for his chemotherapy and frequent labs removed. He was REALLY excited about this because he's been very guarded of his left side where it was placed since the day he had it placed. It didn't hurt him just sitting in there, and it would be extremely difficult for him to damage it, but he was constantly trying to protect it from getting bumped (which did hurt) and he despised anything touching it, even gently. Even hugs caused a nervous, guarded reaction.

He's a little sore today, but that's expected. He isn't walking as hunched over today as he was yesterday though, so it's better already. He told me yesterday that getting the port out ranked up there with some of his best days.

Here's to going into the 2009 holiday season with one less foreign devise in Ben's body!

Love,
Michelle

Thursday, November 19, 2009 9:55 PM CST

Ben had a CT scan done today, with very favorable results. We are thrilled to find that there was, simply, nothing to find. I was concerned after his last appointment when the ultrasound picked up a tiny, unidentifiable spot on the liver, but today’s scan was able to put that concern to rest. The only thing that the scan detected was the already anticipated scar tissue remaining on his liver from a previous surgery. Very good news – prayers heard!

This puts us in a familiar, but yet to be comfortable, place of waiting it out. Three months until the next scheduled test; an ultrasound and chest x-ray. Despite the accuracy of the CT scans, there are also risks involved if exposed to too many. The attempt is to create a balance by alternating the types of tests, while still keeping on top of any potential disease progression.

So, other than the monthly dialysis related appointments, we have been “granted” three more months of just being a normal family.

To sum it up, it was a long day, with happy results, tired parents and endurance tested. Looking forward to a good night of sleep, hoping for mental clarity, and a stronger back in the morning…or at least the near future, so that I can trust enough to relax and enjoy these breaks that we are so graciously given.

Love to all that have prayed, cared, supported and carried us through the last decade of the last thing we ever expected to endure……..

Michelle

Monday, October 26, 2009 3:06 PM CDT

Just thought I'd update since it'll be a few weeks until Ben's next scan. Things are going well at the moment. We had a black cloud hanging over the house for about three weeks which involved the seasonal flu, H1N1, high blood pressure issues, a potential rabies exposure that led to rabies vaccinations and a variety of other things that were more annoying than anything. I won't define who had what, just that everyone is back in good shape and life is back on track. It's all good.

All of the kids are doing well. Hannah and Ben are doing great in school - we're so proud of how hard they work to get the results they get. We now have two toddlers who are able to get out of cribs, but we've figured out how to work with that. They are growing like mad and are incredibly active. Being bored is not an option. I relish nap time.

Currently my life is kind of like the movie Groundhog Day, with the lead character being a stay at home mom. I guess, considering the alternative, that's a good thing and I should be grateful. And I am! Something I have to remember when I'm folding the thousandth load of laundry for the week as I'm trying to talk on the phone to someone at the clinic about Ben's medical care and at the same time getting Ava off of the top of the table w/o her totally melting down that I've ruined her fun, while also keeping my other eye on Max who's about to dump the latest FOLDED basket of laundry all over the floor so that he can use the basket to jump off of. I could be missing out on all of this glitz and glamour while sitting in the hospital with a sick Ben. That's a sharp reminder to wrap my arms around the monotony of telling Max for the gazillionth time that, no, we do not pull your sister's curly hair just because it's fun to watch it bounce back. Or no to Ava (again!), that just because you are able to climb the cabinet drawer pulls, you should not grab the glass plate and half full cup of milk that is on the counter specifically pushed back far enough for you to not be able to reach it.

This or the hospital. I pick this!

Love to all,
Michelle

Wednesday, October 7, 2009 9:22 PM CDT

Almost a month has passed by since I last updated. That's always a good thing though. It’s been a fairly smooth month since Ben’s last visit to Marshfield. He has been dealing with some high blood pressure issues, but we’ve been working for the last couple of weeks to get that stabilized through a variety of methods and seem to finally be making some progress there.

Today was a scheduled day at the clinic. It was a long day, arriving at 8:30a and leaving his last appointment around 2:30p. If we could only ditch the almost three hour trip to get there and back, it might not feel so daunting.

Ben’s appointments consisted of an ultrasound, chest x-ray, lab work, oncology exam, iron infusion, and his usual monthly care conference for dialysis.

I think the day went well overall, but there is one question mark that has left me feeling a little uneasy. The ultrasound showed a new small area that they hadn’t seen before on the liver, but it’s too small to identify really what it is. Its presentation suggested to the Radiologist that it was possibly a hemangioma, which is a tangled collection of blood vessels. It could have been there before and was just never seen because of its small size and how difficult it was to find even today. If that is the case, it’s simply a benign issue rather than a new malignancy – certainly what we’re all rooting for. The Radiologist didn’t exactly seem greatly concerned about it and he reassured Ben (and us) that everything was okay today, but I didn’t sense that he was comfortable with it being there either. Since he couldn’t really identify what it was for certain, I was certainly uncomfortable with its presence. The written report indicates, in part, that this spot is “…of uncertain significance at this time. Follow up studies will further evaluate.”

Those follow up studies will be done in six weeks in the form of a chest and abdominal CT scan, more lab work and an exam.

Other than the questionable area on the liver, everything else seemed to check out normal. The chest x-ray showed the lungs were clear (BIG sigh of relief!). His lab results were all within normal range. He grew ¼ inch. The blood pressure issue is getting under better control. I think that the worry lies mostly within myself (not shocking, for those that know me well), because the doctors are all comfortable with waiting six weeks to see if there have been any changes in the liver since today. I’m hoping to absorb some of their confidence to get me through the next few weeks.

I don’t get the impression that Ben left the clinic concerned about it himself, which I hope is accurate. I don’t want him to have something else to worry about.

On a lighter note, we are experiencing yet more transition with Ava and Max. They had both discovered recently that they could climb into their cribs, but neither had been able to get back out without assistance…until yesterday. Miss Ava came walking out of their room after I put them down for a nap and announced with her arms up in the air, “All done!” Hmmmmmm. Now what?! As I recall, Hannah and Ben were much older than 21 months before they went into real beds, therefore were easier to train to stay IN them at naptime and bedtime. It should be an interesting few days (at least I hope it’s only a few days) while we regroup and figure out a new routine that will hopefully involve the same amount of sleep that their current schedule had them on. They’re so much easier contained!!

A happy autumn to you all. Enjoy the change of seasons – I do love this time of year!

Much love,
Michelle

Friday, September 11, 2009 8:01 PM CDT

Sunday, September 13...
Just a quick update to say that the infection is clearing up very quickly, Ben's fevers have broken, and he's feeling like a new man. Looks like all we'll have to do is finish up the oral antibiotics and that's the end of this little episode. Yea!
Michelle



Hello!

This will be long because I’m trying to sort the day out in my head and this is the best way for me to do it. If you don’t stick with me, I won’t be offended...this is more for my personal decompression than anything so that I can get some sleep tonight. And not to worry...this entry is likely not as big of a concern as it feels in my too-full-of-information head right now, so this isn't meant to stir the worry pot! :)

Today was Ben’s day for care conferences with his dialysis team. Normally a pretty straightforward kind of day...lab work is drawn at Marshfield Clinic and then we meet at the Dialysis Center with the doctor, nurse, dietician, and social worker. We address any concerns and review how Ben’s month has gone. We make the necessary adjustments in his dialysis therapy, diet and medication and we work out any kinks related to insurance. It’s usually about two hours, once a month, to make sure Ben is staying on course, to keep us educated on his care and answer questions we may have. It can be an intense two hours because a lot of information is being exchanged, but it has gone well over the past several months.

But today he presented with a fever and a strange red bump on his ankle that was causing him to limp. A couple of days ago he came home complaining about his ankle hurting from something happening at school (couldn’t remember what) and was limping. But that same night, the pain subsided and he didn’t seem bothered by it at all. Same thing the next morning and he trotted off to school without a problem. He ended the night last night complaining of severe pain and we could see a small red, swollen area around his ankle. Since we were scheduled to be in Marshfield today, we treated/watched it at home and waited until today. This morning when he woke, he said it felt fine, but the swollen area was still there. But this time he woke with a fever and said he didn’t feel very good.

When we arrived at the Dialysis Center, the Ibuprofen I had given him earlier in the morning had worn off and he was acting feverish and was shivering. He ended up with a 101.9 temp at the clinic, so we gave him more Ibuprofen. When we took off his sock to look at the swollen area, it had at least tripled in size, felt warm to the touch, and there were now a few smaller spots outside of the area that weren’t there before. He also had some spots on his face that looked more like bug bites.

We muddled through the basic monthly care conference topics, reviewed what needed reviewing, while tackling the more immediate concern of what was going on with Ben’s ankle. They suspect that he may have gotten some kind of bacterial skin infection – could have happened anywhere, anytime, in any way.

Based on that thought, we were sent back to the Marshfield Clinic to have more labs drawn for a blood culture to make sure nothing serious is growing. Then he was given an IV antibiotic to try and stop whatever infection may have started. During the process of getting the antibiotic, he had a reaction to it and began to get very itchy – on his head, neck, back and chest. So they added some IV Benadryl to combat that irritation. And then, of course, he became very sleepy.

If he doesn’t respond well to the antibiotics, another option to explore is Lyme Disease. What we are seeing isn’t presenting itself in the typical way Lyme Disease is seen, and since it takes awhile for it to be detected anyway, they couldn’t even test for that yet. It wasn’t very convincing that’s what it is, but it’s something to look into if things don’t get better.

I was sent home with a very drowsy boy, who had an ankle full of marker outlining the size of the redness and spots that we saw in the clinic, in an effort to see if the redness gets better or worse once we left. We were also given two oral antibiotics to give him for the next 10 days. One of which seems like it’s going to be a nightmare in itself (the timing of when it should be given, the frequency it’s given, the side effects it may have, etc.), but I guess we’ll just tackle that as he takes it. That’s a tomorrow worry.

For now, he is to be elevating his foot, resting, taking Ibuprofen for fevers as needed, taking Benadryl if the itching continues, and taking his oral antibiotics. At least it’s the weekend!

It’s more than time for me to wrap this up. I’m feeling a little more collected now than before. Too much information in too little time leaves me very scattered. I don’t like scattered.

Have a great weekend – I'm rooting for one that will be low key and eventless!

Love,
Michelle

Saturday, September 5, 2009 7:53 PM CDT

Hello!

Another school year has begun, with this year being an easier transition for Ben than past years. Reflecting back, I realized there's been only one year that he's been in school and has not been dealing with cancer. That was third grade, and technically, he was in renal failure due to relapse for the last few days of school, but we were unaware of it, so we'll just count third grade as a cancer free school year. :)

As I've said in recent posts, we've had one of the smoothest, most enjoyable summers than we've had in a very long time. We squeezed lots of fun into it, despite the few icky things we had to make time for (chemo, lab draws, scans, etc.). And we even came out of it finally finding the long searched for and awaited family dog. His name is Shady and he is a great companion for all of us. I've posted a photo of him in the photo album with the kids on the first day of school. We're all excited about having him here, but Hannah, our animal lover, is especially delighted. She's been amazing about taking care of him and working with him every day. She and I will begin taking him to obedience classes next week.

As I type, Dave and the big kids are on their way home from a Brewers game. It was meant to be the last hoorah before school, but he couldn't quite squeeze it into the schedule before school started. The kids were sooooo excited this morning. I’m anxious to hear about their trip.

Ben has been feeling well, eating better again, growing hair, and moving around again like a kid that has some real energy. He still tires easily, and sleeps incredibly hard at night, but I can see him gaining more stamina as each day passes.

Ava and Max have been keeping us all busy. They are so curious about everything in their environment and we all have to be on our toes during their waking hours to keep them safe. Thankfully they sleep well all night and still take a two hour nap during the day – extra time for us to refuel before they wake up and tear around some more. They love Shady, and he’s really good with them.

Next week Friday is another Care Conference at the Dialysis Center, and then Ben’s due back to get an ultrasound and chest x-ray for Oncology on October 5th. He’s been going in once a week for a lab draw to make sure his blood counts remain stable after the last chemotherapy treatment, but he only has one more of those and he can stop the weekly draws. He will be glad about that! I continue to give him weekly injections to help keep his red blood cell count at an acceptable level. Something he AND I will be glad about when we can stop that, but that won’t be for a long time since it’s dialysis related and not oncology related.

That about sums it up. We’re hoping for test results to continue to keep coming back clean and to keep getting closer to the marker where we can begin to look more seriously into getting Ben a transplant. Thanks for hanging in there and hoping along with us!

Love to all,
Michelle

Friday, August 14, 2009 9:24 PM CDT

Monday, August 17th.....
Quick update for today. Ben's labs were good enough for him to receive the last dose of chemo today, so he is officially done and can get back to the business of growing hair, eyebrows and eyelashes again! Next step, Oncology related, he will have a chest x-ray and abdominal ultrasound in six weeks, then another CT scan 3 months from today. We'll continue to check his labs locally on a weekly basis for the next three weeks or so. As for the dialysis part of things, he'll continue to go in once a month for care conferences with the dialysis team to make any necessary adjustments in treatment, diet, and/or medications. Still not sure when the portacath (used for the chemo and lab draws) can come out now that chemo's a wrap, but we'll find that out soon. We're moving in the right direction though! Now we just need to get through another year or more w/o cancer so we can get back to focusing on transplant! It's good to look forward again.



Friday, August 14th.....
What a great day we had today! It was one of those prayers-were-answered days that ended by celebrating with ice cream and lots of the good and gooey stuff to pile on top of it. Ben had a CT scan done this morning and it came back with no visible signs of cancer in both the lungs and the liver. There was an area on the liver that appears to be scar tissue remaining from the ablation, but that was anticipated and had even gone down in size. Big, BIG sigh of relief.

Getting him to drink the contrast for the scan was the biggest challenge today. Last time, he begrudgingly managed to get it all down, but threw it all up right after the scan. This was fine, in that at least it was done after the scan! This time, he drank half of it, threw it up before the scan, finished the other half, and thankfully kept that down. They must’ve been satisfied with the amount he ended up retaining because they went forward with the study. Anyone who’s had to drink contrast for a study will probably understand his strong contempt for the stuff.

After the scan, we grabbed a quick lunch since he had been fasting all morning, then headed right over to the Dialysis Center so that he could get the contrast dialyzed out over a four hour period. During part of that time, we were able to have our monthly care conferences done with the dialysis team. His lab work came back looking good. We didn’t have much for medication or diet changes/adjustments this time around. They are pleased with how regulated his blood pressure has been this past month. His appetite has finally increased, his energy level is normalizing, and he’s just simply doing very well. It’s been a good month.

On Monday, he’s scheduled to go back for the last chemotherapy treatment – hooray! We will discuss what’s next for Ben at that appointment. Since his situation doesn’t fit any kind of protocol, we pretty much go from appointment to appointment and let his body be our guide as to what direction to take next. He’s paving a new road for some other boy or girl who runs into the same troubles he’s had, I guess.

He’s been in good spirits and enjoying his last couple weeks of summer “freedom”. We all have, actually. It’s been a nice place to be in. It’s hard to stay focused on that when the natural human thing to do is to worry about what his future holds. All I can do is keep trying to focus on the positives of here and now and only address the negatives when they’re staring me in the face as a reality. My mind can wander and create more worry than was ever meant to sit in my head!

On that note, here’s to one more positive milestone met today, one more positive milestone to be met on Monday, and MANY more positive milestones to come!

Thanks for leaving Ben messages. He enjoys reading them and hearing from his personal cheer section. We enjoy your positive encouragement too!

Have a wonderful weekend!

Love,
Michelle

Tuesday, July 21, 2009 9:57 PM CDT

Hi again!

Ben's had a couple of appointments since I last wrote, so I'm due to update.

Last week he went in for his monthly dialysis care conferences. Everything went really well that day - his labs looked great, his appetite seems to be coming back, his energy level is also rebounding, and his dialysis treatments have been going smoothly without any added surprises. He's even off of one medication and another was reduced. The doctor was pleased to see how well Ben was doing. We brought a friend along and had some fun afterward visiting a local art studio that the kids like.

The last three weeks since he had chemotherapy have actually been pretty uneventful, health wise. It seemed almost as though he didn't even receive a dose by the way he held so steady with his labs and had the increase in appetite and energy for once. It's been nice.

Today we went in for his second to last chemotherapy treatment. He first had an echocardiogram done to confirm that his heart is not showing any signs of damage from the drug. All looked well with his heart, so we went ahead with the chemotherapy. He also received an iron infusion since his iron was running a bit low. He did great with everything, although he was pretty tired by the time we got home. We spent six hours in the clinic today, but he brought along a friend again, so it felt like the time went by faster.

The plan now is to do a CT scan in three weeks, along with the last dose of chemotherapy, assuming that his body can tolerate it at that point. Doing a CT scan makes for a long day, because he has to have the contrast dye flushed out of his body immediately after the scan, so we have to stick around for a four hour dialysis session in the hospital afterward.

As for non-medical stuff, things have been busy as usual. Hannah has a couple more softball games before her season wraps up. She's had a great season and has really enjoyed herself. Ben has kept busy with various summer activities, and the babies are, well, busy from the moment they wake up until they finally crash for the day. Which leaves Dave and I pretty much tapped out most all of the time. But it's been a great few weeks here so I won't complain! This summer has been a dream compared to last summer. I do realize that comparing to last summer leaves the door pretty wide open for improvement this summer, but it's good to be here and not there, and I like to remind myself of it frequently.

Thanks for hanging in there with us as we navigate this crazy course. Knowing that we are surrounded by amazing people is enough to give us the strength and peace to keep going (aside from the occasional meltdowns!).

Love to everyone,
Michelle

P.S. Check out the link below when you get a moment - it's worth it!

Tuesday, June 30, 2009 7:51 AM CDT

Good morning,

Things have been going well. Aside from the usual fatigue and occasional nausea, Ben has had a good couple of weeks. He didn't have any extra surprises with his lab work to set him back, so he was able to stay on track with his chemotherapy schedule. He had a treatment yesterday, and will only have two more treatments to go, assuming that his body will tolerate them. As opposed to the treatment three weeks ago, he felt good after yesterdays and even went to his baseball game in the evening. Hopefully the next three weeks will be uneventful concerning his health.

Summer activities have kept us all very busy, which is a nice diversion. We were even able to tackle our first family vacation with "Phillip" the dialysis machine last weekend. Much thanks to some very good friends (thanks Ryan and Erin!!) who let us use their summer cabin on a lake for a few days, it was the perfect trial run for us. It was only 40 minutes from home, so we felt comfortable not venturing too far off in the event that something went wrong. And since we had to tightly pack two vehicles to accommodate all of the dialysis equipment, baby gear, and all of our other luggage; it was nice not to have too far to go. Because of his dialysis catheter, Ben isn't able to swim in a lake, but he did get the thumbs up to go wading, kayaking and tubing. In the event that he would have accidentally immersed himself, we put a waterproof type of dressing on top of his regular dressing, and we'd just have to quickly change his dressing and clean the catheter's exit site. He never fell off the tube, so we were good to go. The swimming area was nice and shallow, so he enjoyed wading with the rest of us and didn't feel left out of anything. He went boating, tubing, kayaking, fishing, climbed trees, and played baseball. It was a really nice weekend and we all enjoyed it. Ava and Max loved the water, and again, since the swimming area was shallow, it was the perfect spot for them to safely figure out how to maneuver in the water. Taking that vacation gave us a new appreciation for the flexibility of at-home dialysis.

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

Love,
Michelle

**New photos in photo album**

Wednesday, June 17, 2009 9:13 PM CDT

Hi again!

We're plugging away here. Ben had a few rough days, but nothing that required a hospital stay or clinic visit. His blood counts got pretty low, although they've been even lower in the past. It made him feel very tired, nauseated, and because his platelets were low, he was getting bruises and bleeding more easily than normal. He did a lot of resting during that time. Ben defines rest as playing video games and watching television. He had an extra lab draw thrown into the week, but as of today's lab results, it looks like things are working their way back up. He was extra tired again today, but that is probably due to how hard his body is working to create the new blood cells.

He's continued to play baseball with his team and got a nice hit on Monday night. He seems to be enjoying it.

Yesterday we celebrated Grandpa Ellis's birthday by trying to surprise him with a visit for the day. Grandma Ellis tried to keep a lid on it, but kind of gave it away when she, well, TOLD him. That's okay though, we know she tried. :) We squeezed in as much visiting as we could before we had to get back home for dialysis. That was a busy day, so he slept hard.

Today he and I watched Hannah play in her first fast pitch softball game. The girls all played well and she made a nice play on second. It was a fun game to watch, and especially nice to hang out with Ben in a setting that was not sterile, air conditioned, or filled with beeping machines. Max and Ava had the pleasure of keeping Uncle Mike occupied while we were on our outing. Thanks, Uncle Mike!

Not much else to really write about. Our routine is pretty much the same....constant, somewhat controlled chaos. Thankfully the chaos is mostly for a good reason.

Hope you're all enjoying the summer weather - I know we are!!

Love,
Michelle

Tuesday, June 9, 2009 8:54 PM CDT

Just a quick note to say that Ben's feeling much better than when I last wrote and things are back to what we consider normal. It's good to have him back!

Love,
Michelle

Saturday, June 6, 2009 7:24 PM CDT

Hello,

The end of another school year has arrived. Hannah and Ben finished out the year on Thursday with giant smiles on their faces and fantastic report cards. I'm so proud of both of them. I was happy to be able to attend Ben's end of the year awards ceremony, and to be witness to the excited buzz of the last day of school as the children filed out after the last bell. I'm not sure who was more excited though - the teachers or the kids. Let's just say there was nothing but positive energy in that building and it was good to be in the midst of it all.

To Ben’s understandable disappointment, he spent his first gorgeous summer day in Marshfield. Since he had missed chemotherapy last week, his doctor didn't want to get further off schedule. He was also due for his monthly dialysis care conference, so we combined the two to save a trip. It made for a terribly long 7 1/2 hour day. We had a couple of unexpected things added in that made the day drag out. By the end of the day he had received IV chemotherapy and two other drugs to offset side effects of the chemo drug, two injections, an infusion of iron, an exam, lab work, a chest x-ray and an x-ray of his hip. He must have pulled a muscle a couple of days ago because he started limping and complaining of hip pain - the x-ray was normal.

One of his buddies from school tagged along with (we were not expecting such a long day when we asked!), and that turned out to be the best thing that we could have arranged. His friend was super patient and understanding, and naturally diverted Ben’s attention to happier things. He also entertained me by playing video games with me while Ben napped at one point. Ben and I have gotten into such a rut with these appointments, and my company just isn’t cutting it with him lately. I’m finding myself having to make a bigger effort than ever to keep things interesting, and I’m failing miserably at keeping his spirits up on appointment days. I think I need to take a step back and rethink my approach.

Today he spent most of the afternoon sleeping or laying down on the couch. He’s feeling tired, achy, and queasy. It’s been raining for most of the day and it’s going to be doing more of the same for the next couple of days, so I’m glad he’s not losing out on sunny summer days while he recovers from this round of chemotherapy. I just want him to feel better!

Thanks for checking in. Hopefully he’ll be feeling fabulous when I post the next entry.

Love,
Michelle

Monday, June 1, 2009 8:53 PM CDT

And just like that, he's all better.

He spent the day at home so I could watch to see where his fever would go, and it ended up where it needed to be. I could see him brightening up as the day went on and as his temperature gradually went back to normal - it was a welcome thing to watch him come back to life. He's still not eating well at all, but I'm hoping to make up for lost time now that he's feeling more like his normal self.

It's looking like he will be able to finish off the school year after all. I'm glad that he will be able to be a part of that. Life is returning to normal. I like normal.

Love,
Michelle

Sunday, May 31, 2009 8:53 PM CDT

Hi again,

Ben's had a long day of fevers and aches. After talking it over with the doctor this morning, it was decided that he was better off being treated with Tylenol and Ibuprofen here at home rather than going back into the hospital. Since they've already done all of the tests that they would likely do if we were to go back, then he'd just be sitting there getting exactly what we could give him at home, only we'd be exposing him to all of the junk that is lingering around the hospital on top of it. Hopefully this virus (?????) will make a quick exit and he will feel better soon. He's on an oral antibiotic to cover his bases too. He went to bed feeling awful tonight - it makes me nervous to start a night out like this.

If his fevers continue or get really high, then we will reconsider a clinic or hospital visit for some more tests.

I sat down trying to plot out the upcoming week, which includes a variety of other things NOT related to childhood cancer and illness (just every day life stuff, like the last week of school, first week of softball, trying to keep up with two toddlers, etc.), and am finding myself getting very frustrated because I know all too well that despite all of the planning I do, I have no clue how this week will go, where I will end up, and who will be where.

But despite that minor annoyance, I'm working hard to focus on the good stuff...the sounds and smells of a summer night coming through the window screen nearby, the knowledge that all of my favorite people are safe, together and comfy (mostly) in our little house, the quiet of the end of a day, the promise of a better tomorrow, or at the very least, of a better day eventually. We are cocooned by so much love and peace and safety here that it seems ridiculous to be annoyed right now. I think of the suffering that others have at this very moment; raising their children in the midst of war, living in poverty, losing a job/home...and I genuinely feel fortunate that we have what we have. I still despise cancer and will never find an appreciation for that. And I still feel tired and run down. And I will still get cranky every now and then. Guaranteed. :) But I feel like it's going to be okay eventually.

Thanks for helping us all to keep our heads up and smiles on our faces!!

Much love,
Michelle

Saturday, May 30, 2009 10:01 PM CDT

Ben was released from the hospital late this morning. The drive home felt twice as long as it normally does. I guess I couldn't wait to get home and take a nap. He slept the whole way home, so he was ready to go once we hit the driveway.

We learned a whole lot of what isn't wrong with Ben while in the hospital, which is comforting and frustrating at the same time. Since we've ruled out the stuff that would have wreaked the most havoc in him, and he basically went through the night without fever, and his chest x-ray this morning showed some improvement from the last, there was no medical reason to keep him there.

He seemed to be feeling well since we got home, up until about 7:30p, when he was feeling tired, queasy and had another fever. After some Tylenol, he's better again, so I guess we'll just have to see what tonight and tomorrow bring. Hopefully whatever this is/was will resolve itself and he'll be ready to finish out his last week of school next week.

Sounds like (assuming he's recovered by then), he'll be getting the dose of chemo he missed this week, next week. It's also the same day he's due for his monthly Nephrology check ups, so he's going to spend his first day of summer vacation in Marshfield.

That's the scoop. I'm off to bed. Have a good rest of the weekend!!

Love,
Michelle

Friday, May 29, 2009 11:04 AM CDT

Good morning!

Ben's doing better today, but not quite good enough to justify a release yet. If he continues to improve like he has though, and the tests keep coming back negative, he will likely be released tomorrow sometime.

We don't know what's going on inside that little body of his, but we do know that he does not have Influenza, his blood counts remain in good standing, and there is nothing growing on the blood culture at the 24 hour point. He had some fevers last night, but responded well with Tylenol. He looks and is acting a lot better than yesterday.

Today he will have a study done in Nuclear Medicine to rule out a possible leak related to dialysis, possibly causing some fluid build up that keeps showing up on the chest x-rays. It's not likely that's the cause of the fluid, but something that needs to be ruled out for sure. Tomorrow he will have a repeat chest x-ray to be sure there aren't any changes since the last one. He will continue to be on IV antibiotics for the rest of today and overnight.

That's about all I know. Right now he's working on homework in his room and has gotten out of bed a couple of times already - progress! Oh, and he's also out of isolation since we know his Influenza test is negative - woo hoo!

I'll be back later. Maybe even at home! :)

Love,
Michelle

Thursday, May 28, 2009 5:21 PM CDT

Hi,

Just a quick update to say that Ben was admitted into the hospital today. We had come in to the clinic for a chemotherapy treatment, but since he hasn't been feeling well for the last couple of days and has been running a fever, that was delayed. After his exam today, his doctor felt it was better that he be monitored in the hospital and be started on some antibiotics while we wait for the cultures that were taken today to come back and (hopefully) pinpoint what is making him feel so completely wiped out. He was tested for the flu today as well, and (from what I understand) due to the swine flu outbreak, protocol is to place any patient in isolation if they are tested for the flu until it's ruled out. He feels lousy enough that he doesn't care he's stuck in the room.

Hopefully we'll figure it out quick, get out of here quick and get back home before the weekend.

Have a good night!

Love,
Michelle

Friday, May 22, 2009 8:40 PM CDT

Yesterday was another day, another visit to the clinic. Some days it's not cumbersome to go - we just do it and get it done. And often times it's even enjoyable (not the stuff Ben has to do, just the being there part) because we're working with such optimistic, committed, patient and kind medical professionals who have been more of our friends than anything. We're greeted with smiles and laughter. We're sent home with smiles and laughter, and frequently Ben is walking out with a new gadget in his hand thanks to a generously donated and funded treasure box. Everything done in the Pediatric Department is centered on making the kids comfortable, which in turn helps the parents feel more comfortable.

Despite all of this, some days it IS cumbersome to go. There's not usually a specific reason why we feel that way either on some days but not others. We just don't feel like it, for whatever reason, and it makes for a long day. That was yesterday. Another day, another visit. Still lots of smiles and laughter from all of our loyal friends, but there were at least two hesitant and semi-grumpy people in the Pediatric department yesterday - Ben and I. But we put on our brave faces and muddled our way through the tedious and repetitive appointment and then he slept the whole car ride back.

We were done in enough time to get Ben back to school to sing with his fellow classmates in the annual spring concert. He was devastated when we didn't get back in time for him to play in the recorder concert though (for those of you not familiar with Ben's "love" for the recorder this year...that comment was dripping with sarcasm).

Back to the appointment. He had a chest x-ray repeated, the doctor listened to his lungs and did an exam, and he had labs drawn. The x-ray showed no changes since last week. The doctor still feels that the fluid had been a secondary reaction to the radio frequency ablation on the liver, and that the small amount of fluid that remains there will eventually resolve itself. Ben's cough is almost non-existent now, his fevers are gone, and he is breathing more comfortably while exerting energy. And since we did not see any evidence of tumors with the last CT scan (in either the lungs or liver), we are not going to have to look into surgical options at this point. Great news! We will continue to monitor both the lungs and liver through periodic CT scans (not sure what periodic means yet) to be sure nothing new pops up. And we will also continue to give chemotherapy since we have evidence that it is working. He will possibly receive up to four more doses, with three weeks in between doses. That would be the maximum amount he would be able to get of this specific drug for his lifetime according to the protocol, so we will have to quit at that point. From what I understand, there aren’t any plans for trying a new chemotherapy regimen, since he has already used those in the past. As for his lab work results, his numbers have tanked, so he's running low on good fighting cells right now. He's more tired than usual. He's pretty much always tired as a norm, but now he's really tired.

He felt well enough this morning to attend school for one last field trip though. I was again lucky to tag along as a chaperone. We had a good time, but it was a physically taxing day on him as we spent the entire day outdoors doing activities. I was hesitant to have him go, considering how low his counts are and how tired that can make him, but his doctors really encourage us to keep him participating in whatever he will tolerate, to keep things as normal as possible..

The extra long weekend ahead is well timed for what his body needs – lots of rest. For now, the plan for next week is labs on Wednesday, and then if those have risen enough to meet the required numbers to receive chemotherapy, he may get his next dose on Thursday. If his numbers are still too low, we’ll wait it out until they meet the criteria.

I’m tired from a busy day out in the woods with a bunch of very active, but fun fourth graders, so I will wrap this up. Thanks for checking in on Ben!!

Love,
Michelle

Thursday, May 14, 2009 8:26 PM CDT

Hello!!

I decided to take Ben in for an earlier x-ray today because he doesn't seem to be improving. He's been coughing more and seems to have a harder time breathing than normal.

The x-ray showed that the fluid behind the right lung is definitely decreasing in volume significantly. The fluid was last seen on a CT scan, so they weren't comparing apples to apples, as this was an x-ray, but it gave them enough information to feel confident that the fluid is dissipating.

The questionable part of the x-ray was that they were seeing some additional areas that appeared as if he could be in the beginning stage of pneumonia. The areas weren't conclusive enough to justify treating him with antibiotics just yet, but were of concern enough to keep a close eye on his symptoms. We are to call if he shows any more signs of declining, or if he spikes a fever. He had a low grade fever in the clinic and continues to run one at home, but nothing that would require a phone call yet.

For now, we wait this one out and hope that his body is strong enough to fight off whatever infection may be lurking around. This is typically the time frame when his immune system takes a hit from the chemotherapy treatment he last had (about 7-10 days after the treatment), so the timing isn't all that terrific for an infection to be settling in.

If I get my way, he'll have a chill out weekend, get lots of rest, and move right along.

Other than that, things here are hoppin'. The end of a school year seems to bring lots of extra things to do with Hannah and Ben - spring concerts, field trips, awards ceremonies, Science Fair, etc. Baseball season has begun for Ben. Hannah is involved in a local musical. Her softball season won't begin until next month - whew! Ava and Max are becoming expert climbers by the day. Unfortunately, they are not expert getting-downers and there have been many tears shed as of late. Most of what we've decorated our home with has had to be removed for their safety and it's getting so bare, toys seem to be our current decor. We are shocked at how quickly they are able to get themselves into a predicament, even when we are in the very same room with them. Our current battle is keeping them off the furniture (because instead of sitting on a sofa like normal people, they run up and down them, as if there is some kind of invisible safety net that will catch them when they run right off the side). They have also found pure joy in climbing on TOP of the dining room table when we have our backs turned. It's like having a couple of goats in the house - they eat pages out of books, climb on everything, and beg you for food whenever they see you eating. But they are cute little goats, so we'll keep them around! :)

Oh, and just a quick note about St. Baldrick's......Ben was able to double his goal of $500 and raised $1000 this year, thanks to many of you! Thanks for helping him get there - he was so excited.

I hope that this entry finds each of you doing well and enjoying what spring has to offer.

Much love,
Michelle

Saturday, May 9, 2009 9:22 AM CDT

Happy Saturday to everyone!

I know that I'm MORE than happy it's Saturday. We've had a busy week, filled with lots of fun stuff, some not so fun stuff, but certainly enough STUFF to make one appreciate a weekend break.

This week brought a field trip for Ben (which I was lucky enough to chaperone and enjoy), a lovely spring concert and Science Fair that Hannah participated in, two baseball practices for Ben, and two Marshfield appointments for Ben, which resulted in two more missed days of school and my parents graciously babysitting for two days. Of course, he was more than fine with the part of the deal where he missed two days of school. That, among the basic everyday things that need to be done to make a family of six function during the week, makes for a HAPPY SATURDAY!!!!

Backtracking to Thursday, Ben had appointments for labs, an exam from the Oncologist, and a chemotherapy treatment because his labs and exam indicated his body was strong enough to move ahead. He did well and even went to baseball practice that same night. He was quite tired and slept hard. Friday he woke up with a very queasy stomach and started the day off throwing up – always a fun way to kick-start the day. Apparently the chemo set up shop overnight and began showing its effects. We set him up with anti-nausea medication, climbed back into the car bright and early, and headed back to Marshfield for the CT scan that was going to tell us what Ben's liver and lungs looked like after all of the radiation and the chemotherapy treatments. He dutifully drank the gigantic portion of contrast they asked him to drink, and after the scan was done, promptly threw that up too.

The results of the scan were mixed. Some very good news. And some unclear results. A strange combination that left us feeling good and nervous at the same time.

I'll start with the good. The three tumors that were on his lungs are gone. GONE. No evidence of their existence. To quote the radiologist who read the scan..."There were previously pulmonary nodules in the right lower lobe that measured 8 mm and in the left apex measuring 3 mm and 6 mm and those nodules are gone without a trace." Pretty fantastic news!! We will cling to that as much as we can.

The unclear part of the scan is what has left our nerves a little on edge. Apparently the CT scan showed that Ben has a significant amount of fluid behind his right lung. In hindsight, this would explain some of his lack of being able to be physically active without feeling like he was losing his breath more recently. His Oncologist feels that this fluid buildup could possibly be a secondary reaction to the ablasion procedure that was done on his liver last month. Other possible causes could be infection or new tumor growth. The secondary reaction to ablasion seems to be what makes the most sense in terms of timing.

To again quote the report from the Radiologist who read the scan..."However, there are new nodular and patchy opacities in both lungs in the right upper lobe and scattered throughout the left lung. I am uncertain whether these are neoplastic (new growth) or inflammatory foci."

It is impossible to say what these tiny, non- specific lesions in the lungs are at this point. They could be infection, or could be inflammation from the fluid build up, or, at worst case, could be the very start of new tumor nodules.

The idea that there are new tumor nodules doesn't make much sense if the chemotherapy and radiation have destroyed the existing three tumor nodules seen in prior studies. But we've been told that it's not impossible, just improbable. We'll stay with the improbable theory for now.

The current plan is to do a chest x-ray on Ben in two weeks to see where the extra fluid stands, hoping that it's reabsorbing and going away, rather than increasing in volume. If, however, he begins to show further symptoms of difficulties in breathing during activity, light or otherwise, we are to bring him in prior to that two week scheduled appointment and get the x-ray then to check on the status of the fluid. If the fluid continues to build up, we may need to consider getting it drained. From what I understand, this is not a fun procedure and we'd prefer to avoid it.

On Monday he will be going back to Marshfield to receive some IV iron, since that’s currently low. He will also be getting weekly lab work done (at our local hospital) to make sure his body is tolerating the chemotherapy, as well as weekly injections (at home) to help boost his red blood cell counts in order to prevent further blood transfusions. He may also be getting a different injection to boost his white blood cells at some point, dictated by his lab results.

So, as you may understand, despite the fantastic news that the three tumors seem to have disappeared, we are a bit skeptical to let our guards down and celebrate.

The next couple of weeks will be about watching closely and reacting appropriately. This, quite frankly, isn’t always as easy as it sounds.

We are relieved to hear that the therapies we've been using have been effective in some areas. We will do our best to remember that. In the meantime, we will also enjoy the fact that Ben has decided to play baseball this summer, even though he had previously said he was not going to. We are looking forward to watching both he and Hannah enjoy another season of summer ball. And Ava and Max will be certain to keep our minds and bodies occupied constantly, as they are now climbing onto any object that they can.

All in all, things are going fine. There are stresses, but no one is free from stress of some kind or another. We can’t complain – we have a roof over our heads, we eat every single day (maybe some of us should do a bit less of that), we have lots of love in our home, and we are surrounded by even more outside of our home.

Remember your blessings and hug your loved ones tight. Yes, bad stuff happens. But good stuff happens too. Cheers to that!

And to all the moms out there.......HAPPY MOTHERS DAY!!!

Love,
Michelle

Thursday, April 30, 2009 0:11 AM CDT

Hi again!

Ben stayed home from school for a couple of days, but went back on Wednesday. His counts were getting pretty low, and on top of it, he had a cold, so I was concerned about sending him off to school. After two days of resting, he seemed to be happy to be back in school today.

We are planning to go back to Marshfield on the 7th and 8th for some more tests. He will be having a ct scan done on one day to see what the tumors on his lungs are looking like. There will also be several other things done, including another dose of chemotherapy, but the ct is the big thing that I'm personally wondering/worrying about.

Overall, he's doing well. He has a great support system, inside and outside the home. He has his moments of frustration, or sadness, or gloominess...but that's to be expected. The good thing is that he continues to have happy moments, frequently due to the very cool things that people have done to give him a boost.

It's been relatively quiet, so I guess that's about all I have to write about at the moment. That's definitely a good thing.

Until next time....

Love,
Michelle

Thursday, April 23, 2009 8:54 AM CDT

Hello!

Things have been going well since Ben's last dose of chemotherapy. He's had a touch of nausea here and there, but it hasn't been a consistent bother. He's been going to school every day, and even riding the bus without a problem. He is tired, but I think he paces himself well.

He had some labs done yesterday that reflected a dip in his hemoglobin, which would contribute to some of the fatigue. I hope that it doesn't go much lower, we're hoping to avoid another blood transfusion. Some of his other numbers were off too, more related to the dialysis side of things, so we're yet again tweaking medication and his dialysis program to see if we can get him back on track. His white counts are starting to come down, so we'll probably see a bigger decrease when we return for more labs next week Wednesday. Right now it's just watching, waiting and responding to what his body is telling us it needs.

His spirits seem to have been higher lately - thank you to everyone who has contributed to making that happen in many different ways.

It's been incredibly nice to be home for a stretch of time. When I think about all that his small body has going on inside and everything that has to happen to keep it functioning well, he has a considerable amount of freedom and flexibility in his life. For that, we are very lucky, as well as thankful.

As always, we appreciate you checking in on Ben and the encouragement that you send our way to keep us all afloat.

Much love,

Michelle

Friday, April 17, 2009 8:13 PM CDT

It was a long day, but overall it went well, considering what we were doing. Ben was very grumpy (understandable) so he wasn't really up for doing anything but watching a movie to pass the time. He said the medication made him feel "yucky, not really queasy, but just yucky". Once the movie finished, he slept the rest of the time away. Surprisingly, he was hungry when the treatment was finished, but not surprisingly he had a hard time pinning down what kind of food was appealing to him. After some thought, he decided on KFC chicken strips - for whatever reason, those sounded okay today.

He slept the whole way home and was pretty wiped out for most of the evening. He put himself to bed early tonight and I'm certain he will sleep like a rock. I'm not sure what to expect for the next couple of weeks - these are the harder weeks because he usually feels lousy, his counts drop, and he's very tired. We never know what to expect - whether or not a hospital stay will be thrown into the mix because of a fever, or if another blood transfusion will be necessary. They will watch his numbers closely, so he will have lab draws once a week until we go in for his next appointment.

The next scheduled plan is to go back in three weeks for a repeat CT scan to see what the three lesions look like on the lungs (or, better yet, to see if they are gone), as well as to see how the liver is healing from the ablation. If there are still lesions on the lungs, we will schedule time to talk to a Thoracic Surgeon about the possibility of surgically removing them. Ben will also be due for his next dose of chemotherapy at the time he has the scan, assuming that his body is tolerating things okay and his blood counts are in the right place. Because the CT scan requires IV contrast, he'll have to get four hours of dialysis immediately after the scan to clear the contrast from his system. It will be a long day, with chemo first, then the scan, then four hours of dialysis before we can go home.

This is such a strange life. But it is what it is, and we're doing what we can to make it OUR strange life. I'm tired, I'm babbling, I'm signing off......

Love,
Michelle

Thursday, April 16, 2009 8:49 PM CDT

A second chemotherapy treatment is scheduled for tomorrow morning. I'll be back another time........

Michelle

Monday, April 13, 2009 6:39 PM CDT

For a change, I don't have much new to write about concerning Ben's health...a nice change of pace indeed!

In reflection, life has been an unbelievable and outlandish whirlwind around here for the last month. We have finally discovered a bit of breathing space. The only things that appear to be on the agenda for this week are one lab draw and one injection (subject to change, of course - I'm a realist, not a dreamer!). I can get the labs drawn locally and I will give the injection at home, so (please knock on wood, everyone) we will be spending this week at HOME and Ben will be attending a full week of school. Amazing.

We had a nice Easter with crazy Uncle Nick, and cousins Brian and Jack, from Duluth, MN. Ben was more tired than usual after a weekend of baseball, flashlight tag, riding the four wheeler and all of the other activity that comes with running around with older cousins, a sister who can keep up with the boys, and two neighbors that have energy to add to the group (thanks for coming over Ethan and Garett!). He paces himself pretty well though, so I don't worry much about him overdoing it. I think it's great for him to be busy like that; otherwise he begins to over think things and starts to get down (hmmmmm...sounds like his mother).

Today was a day off of school for Easter break, so he's back to school tomorrow. He says he doesn't want to go, but based on how much confidence he had when he got home last week Thursday after just one day back, I think he's going to thrive. I am also very much looking forward to attempting to recreate our routine at home for Ava and Max. My parents did a great job working to maintain that during the tornado of activity, so I don't think it's going to take much effort on my part. Thanks, Mom and Dad!!

Ben's buzz cut from St. Baldrick's Day didn't last too long...the tiny little hairs began to fall out on Saturday and were getting on his nerves because they were so itchy. After a couple of other attempts at removing the loose hairs, Dave finally just shaved the rest off for him to make it more comfy. Thankfully, he likes it, because he says lots of football players are bald, so it's actually a cool look. I like it, because it's super smooth and soft. :)

Thanks for all of your love and support.

Love,
Michelle

Thursday, April 9, 2009 10:17 AM CDT

Yesterday Ben completed his 13 days of radiation, and we are both glad to have finished that up. He loved going to see everyone there, but the daily trips were wearing on him (us). He had been so tired, was experiencing quite a bit of shortness of breath and felt nauseous frequently, so I kept him home for the beginning of the week. He liked the idea of "homeschooling" way more than I did. This morning I got word from the clinic that his labs yesterday reflected a big jump in white blood cells (due to one of the injections they gave him), and since he seemed to be feeling and looking much better, I took him to school...much to his dismay. But once he arrived, I could see he was happy to be back, as were his friends happy to see him back. I hope that he has a good day.

Tomorrow we are scheduled to go in for his monthly care conferences concerning the dialysis portion of his health care. He should be getting another injection to boost his red blood cells too. Looking at my calendar for next week, I have NOTHING written in for going to Marshfield. I may have to bring him in for some labs, but I'm guessing I can do that locally. I'm so excited to maybe reestablish a routine here again. The babies have been getting pretty cranky, probably due to the unpredictability of my presence. My parents have done an amazing job at keeping things as routine as possible for them, so it's been great having them around.

I don't know when we are starting chemotherapy up again, but it should be fairly soon once his counts are stabilized. From what I understand, chemotherapy is the next step, but we're taking things week by week.

Happy Easter to everyone!!

Love,
Michelle

Sunday, April 5, 2009 10:22 PM CDT

Another St. Baldrick's Day event has come and gone for the Lansings. It's exciting to see all of the people that come to support the cause for childhood cancer research. This event has become very special for us, for obvious reasons. But I love how committed the foundation is to making sure the funds are getting to where they need to be, and not wasted through excessive administration costs. Ben had so much fun, but was very tired when we got into the van to head home. He told me tonight that he just loves going to St. Baldrick's Day every year. I've posted an "after" photo of him in the photo album. Thank you to everyone who donated toward him this year - he was excited to exceed his goal!

Ben's been getting tired as his counts are continuing to decline. He's also having a harder time than normal to breath. I've been told that can be a side effect from the radiation to the lungs, but he doesn't find comfort from knowing that - he just hates the feeling of not being able to breathe normal and not being able to run without having to stop to catch his breath. I'm sure it's a scary feeling for him.

Tomorrow we will head back to Marshfield for radiation - only three more treatments to go. I'm curious to see what his labs will be like when we have them drawn again on Wednesday.

Not much new, so I'll be back another time!

Love,
Michelle

Friday, April 3, 2009 7:34 PM CDT

We made it home by 2:00p, in time for me to play with the babies until their naptime, then Ben and I both took naps when the babies took theirs. It's good to be home.

Ben's feeling much better. He's still a bit sore, but nothing like last night. He's incredibly tired though. Before we left, he had another radiation treatment and received an injection to boost his white blood cells since they are beginning to show a rapid decline due to the chemotherapy. Tonight I'll be giving him another injection of a different drug to increase his red blood cells. He's also on an antibiotic for the next ten days to prevent infection in the liver where the ablation was done.

As for the success of the ablation, there's really nothing that will tell us immediately if it was, so we will wait it out over the next few months to see if it worked for him. The procedure itself went smoothly and the doctor felt confident that she was able to get a good "burn". Unfortunately, it's only treating the existing tumor and a small margin around it, so we hope to catch any lingering cancer cells just waiting to grow, with more chemotherapy treatments. One positive thing we found was that the tumor on the liver had shrunk since it was first biopsied, an indication that even one dose of this chemotherapy drug has had an affect on it.

As for the three tumors on his lungs, those have also shown signs of shrinking when Ben had a re-scan done in Radiation. He has three more radiation treatments to go. If anything remains, removing them with surgery is also an option.

We still have a long way to go, but are making lots of progress. Ben is doing okay as long as we don't talk much about it. He's frustrated and worried, which isn't a big surprise. We're doing our best to help keep his head up. He's excited about getting his head shaved for St. Baldrick's Day on Sunday - it's getting shaggy, so we are too! He's met his goal of raising $500, but anyone who would like to donate can do so anytime, even well after the event.

It will be good to sleep in our own beds tonight. It will be good to kiss all of the kids goodnight tonight, instead of just one. It will be good to wake up LATE tomorrow morning, hopefully to the smell of coffee brewing. I hope that you all are able to enjoy whatever small pleasures bring happiness to you too.

Love,
Michelle

Thursday, April 2, 2009 6:52 PM CDT

Just a quick entry to let you know that Ben's Radio Frequency Ablation went well today. He had some trouble with pain initially afterwards, but Morphine has kicked in and all is well.

Not much to report I guess. We started the day off with a quick radiation treatment, then checked in for the procedure. The surgical area was completely packed today, so things were delayed and we didn't end up getting into his room until late afternoon.

He's finally woken up completely, has eaten some food and is watching television right now. He's also on his dialysis machine and will be until about 7 tomorrow morning. We're scheduled for another radiation treatment for tomorrow morning at 9:45, so if all goes as scheduled, we should be home before noon.

I need to get back to the room. I'll update again if anything new comes up.

Love,
Michelle

Tuesday, March 31, 2009 8:40 PM CDT

Another long day, with lots of information, sort of answered questions, more scheduled appointments for treatments, procedures and labs. We go into these "quick" radiation appointments and come out with a whole new agenda. Today we ended up meeting with the doctor who does the Radio Frequency Ablasion treatment, had some labs drawn and ended the day with radiation. During our short stay in Radiation, we wound up being scheduled for more labs tomorrow, along with a blood transfusion because his hemoglobin was very low today. Then the Ablasion procedure was scheduled for Thursday, along with radiation that same day, followed by a one night stay in the hospital for observation from the procedure. On Friday, we will be released, get a quick radiation treatment, and hopefully be on our merry way. Then the weekend is OURS. Being a schedule oriented person, I have a tough time with these daily changes and surprises, but this is something I have to work harder at letting go.

Ben hasn't been feeling too great - nauseous and very tired - but he's still attending half days of school. According to the Oncologist, he shouldn't be feeling queasy at this point of his chemotherapy dose, and according to the Oncology Radiologist, he shouldn't be feeling queasy from the radiation because they aren't working in the abdominal region. I don't care who says he's not supposed to be feeling queasy...when he's throwing up on a daily basis, I'd say he's feeling queasy!

As for a plan, they are pretty much going day by day, treatment by treatment, while figuring it out. I was feeling let down today when I found out that the head of the Wilms Tumor Study Group finally answered our doctor's inquiry of opinions for treatment, and his answer was basically, "I don't know." He did have a couple of suggestions, but those were merely stabs in the dark. I'm trying not to let that fact paralyze me from the hope that we will find a way to get rid of this cancer once and for all.

The key for now is going to be being more present and not looking so far into the future, since most of the future answers rely on his reaction to the present treatments. Easy to say, maybe even easy to do for some people, but not easy for me to practice.

I had better get things wrapped up since I have a few long days ahead of me.

Much love,
Michelle

****Check out the photo gallery to see the big and GENEROUS surprise gift that was presented to Ben recently****

Thursday, March 26, 2009 8:36 PM CDT

Hello!

Nausea has set in, but so far it has been able to be controlled well with medication. He's back into the habit of taking showers frequently to get "hospital smells" off of him after appointments. That's actually a really good thing, because if anyone out there has a 10 year old boy, they know that showers aren't normally on their priority list, much to the dismay of anyone who has to hang out with their sweaty, stinky little selves. :) He's a little sensitive to smells right now too, so I had to take him with me to the store to pick out just the right scent of body soap. When I'm looking for the positives in all of this, one is that he is mostly clean.

He is very tired from the radiation treatments. He sleeps all the way there, all the way back, and is usually in bed for the night within two hours of getting home...and it's no easy task to get him up in the morning for school. Today we decided to ask Uncle Mike to drive he and Hannah to school since a wave of nausea hit him just before breakfast. We figured a 25 minute bus ride might not be in his best interest. After a dose of anti-nausea medication and hearing that he was getting a ride, life was good again.

Nutrition is a little bit of a concern. He had already been struggling with getting enough nutrition even when he wasn't feeling nauseated. Dave took him to the grocery store and they searched for foods that were both appealing and okay for his renal diet. There aren't very many things that fit both of those categories, so he may just live on a handful of things for awhile. His prior diet restrictions have been loosened up a bit so that we can make sure he is getting enough, so that's been helpful.

We were informed today that they are going to skip the two week delay in radiation, and just go right into the higher dose, "boost" treatments (there are five total), following these current eight days of the lower dose treatments. I have yet to talk to any of the doctors about why this change has come about, so I'm curious to find an answer. There is so much involved when working with three different specialists. We have a strong trust in all three of them though, so that's a blessing in itself.

Uncle Mike is on radiation duty again tomorrow, so another adventure is sure to be had!

Until next time...
Michelle

Wednesday, March 25, 2009 10:01 AM CDT

Yesterday Ben had his second radiation treatment and his first chemotherapy treatment. Dave was able to take the day off of work so that he could bring him. Everything seemed to go well and he seemed to be feeling fine all night, other than being understandably tired. He has begun a "Ben's Adventures" scrapbook for these upcoming trips to Marshfield. On Monday we picked out a fun and colorful book, some stickers and some pens to get him started. He had already saved a few electrode sticky tabs from his echocardiogram (I'm sure that's not what they are called - that's just what we call them!) that he wanted to put in there. He had the techs from Radiology take some photos of him on the giant machine that looks like something from Star Trek, and he also took some photos during chemo. It's been a good diversion for him because he has something to do that is more appealing than trying to catch up on his homework all the time. (Don't worry, Mr. Kehring...we're still working on it!) :) Uncle Mike is taking him for his radiation treatment today, so there will certainly be some kind of "adventure" to add to his book.

This week should be pretty quiet, since it looks like he's only getting radiation done. He'll have to have labs drawn every week since he's now on chemo, and he'll also have to have weekly injections to boost his hemoglobin, but those things won't take up too much of his time. I'll be able to do the injections at home, and if we aren't already going to be in Marshfield, his labs can be drawn by a clinic closer to our home.

According to the sounds coming from the baby monitor, it seems my time is up here. Many thanks for everyone's love and support. As always, we feel so fortunate that we are not trying to do this all alone. Each of you play a key role, in one way or another, in making this all work.

Love,
Michelle

Monday, March 23, 2009 7:47 PM CDT

It's been an exhausting day, primarily emotionally exhausting, so I am going to keep this brief. Actually, I'm not sure that's possible, since I don't actually know how to be brief! :)

Ben had his first radiation treatment today and that went very well. He was happy to see his old friends in the radiation department. They are so good to him and such an amazing staff of compassionate people. Anyone who can make someone look forward to going to radiation is amazing in my eyes.

We then met with Ben's Oncologist, who gave us a very preliminary plan, since he's still waiting on hearing back from some of his contacts. What it seems to boil down to is that no one really has any solid answers, so everyone is still doing a lot of "thinking".

What we DO know is that Ben will begin with one dose of chemotherapy tomorrow afternoon, followed by a second dose of radiation. Because the particular chemothearpy drug being proposed can potentially interact negatively with radiation, we will only be able to get one dose in until radiation is completed. We are expecting to do eight doses of low radiation to the lungs only, front and back, then will take a two week break, and possibly follow up with a high dose radiation to only the spots that remain visible (if any remain visible). If any spots remain, there is the option of surgically removing them. There is also a good chance that they would like to try the radio frequency ablation to the liver lesion that I talked about before, however, that recommends no chemotherapy two weeks prior to and two weeks after the one-time treatment. Ben's Oncologist is concerned about not having chemotherapy treatments for that gap of time, potentially allowing cells that we can't see out there to grow during that time, so there is some question about how we are going to pull all of this off. And then there's the whole dialysis portion of it all, which I don't even know yet how that all plays into this tentative plan. Let's just leave it at, I'm totally confused, emotionally tapped, and just ready to go to bed and start tomorrow over in hopes for a much less perplexing kind of day.

I still have all the confidence in the world in the doctors that we are working with. I know that they are all working hard together to come up with the best plan for Ben. And I have to believe that God has his hand in all of this and will continue to guide the doctors in the right direction. Please continue to pray for Ben and his doctors. He deserves to grow up and do amazing things.

Much love,
Michelle

Thursday, March 19, 2009 9:45 PM CDT

We are home! Everyone is under one roof. That is good.

I will preface this entry with the fact that I'm a bit on the emotional side, which will explain some of the irrational statements I may make. My positive energy has been tapped into pretty hard and I'm hanging by a thread, but I'm still hanging in here.

Ben's new portacath (spelling??) has been placed and he's not happy about having another foreign object in his body. He's feeling physical pain from the placement and that's just adding to his agitation about its existence. I know in my heart that he will get used to it and will almost even forget about it eventually, but it hurts to see him feel so violated and defeated at the moment. I'm clinging to the strength that he received when he spent time at the winter retreat recently and hoping he taps into that and regains some of that self confidence that he had discovered he had. On our ride home from the hospital, we talked a lot about that, and he seemed receptive to it (while he was in and out of his pain medication, anyway).

Due to the pain that he was experiencing from his surgery today, the consult with the Radiation Oncologist was postponed to Monday. He adores the staff in Radiation (as he should considering how amazing they were with him), which reassures me since he's actually looking forward to a reunion of sorts with them. He will go there on Monday to get "fitted and measured" and most likely receive the first dose of radiation therapy to his lungs, with doses to follow each day that week. We still do not know how long he will receive radiation, but will find out in due time. I personally feel blessed to be surrounded by such intelligent and caring professionals.

The pathology reports came back today indicating that Wilms has indeed spread and we are not dealing with another type of cancer. I suppose that could be a blessing because we are not tackling a new diagnosis. Or maybe not a blessing, considering he's already used up all medications known to cure Wilms. I guess that's not my call.

Needless to say, the type of chemotherapy treatment needed is still a bit of a mystery, even though they are hoping to begin next week. We are to a point where we might need to go the more experimental route than a specific protocol as in the past. I just want to have my son grow up to be a man, meet the girl of his dreams, give me grandbabies and live happily ever after. So I'm willing to do whatever it takes to make that happen.

I want to thank each and every one of you who has prayed for him, sent positive thoughts his way, sent well wishes through cards, St. Baldrick's Day donations, emails, phone calls, and guest book entries and have done kind things for our family to make this more bearable. You are a huge part of why we can keep on smiling and lifting him up to keep him going. Thank you isn't much, but it's all we have for now.

Much love and gratitude,
Michelle (for all six of us!)

Wednesday, March 18, 2009 6:55 PM CDT

Today has been a pretty full day, but we're now just hangin' in the hospital play room while Ben experiments with the Wii they have here. After playing a couple of games with me, he requested to play alone for awhile. I don't know why, because he was kicking my tail in everything we played so he was always winning. That's fine...I don't like coming in last place or getting booed off stage anyway! :)

This morning we arrived at 8:00a to meet with the nurse for an IV start, labs, and to get some medication that was needed prior to the needle biopsy. The sedation began around 10:00 a.m., which went fine. The procedure itself followed immediately, and went fine as well. The doctor was able to pull four samples from the liver lesion. We haven't heard what the pathology reports were, and I'm assuming since we haven't heard by now, we won't tonight anymore. They should have been available a few hours ago.

A chemotherapy regimen has yet to be determined...seems to be one of the most perplexing parts of this whole process. Tomorrow morning Ben is scheduled to get his new portacath placed for when he receives chemotherapy. He's mad about getting yet another cath placed, but he's working through it well. It will be a quick surgery first thing in the morning with a short recovery time. We're meeting with the Radiation Oncologist afterwards to determine when radiation to the lungs will begin. Most likely that will begin on Monday. Once the mystery of what to use for chemotherapy is figured out, that should start next week as well. Then we will have the whole dialysis thing to figure into it all. Thank God for the amazing team of doctors that we have on our side! My head hurts.

Tonight should be a quiet one. Ben's machine is all set up in the hospital room now and ready for his nightime therapy. Hopefully we'll both get some good rest. Because he doesn't have any kidneys, he doesn't have to be hooked up to IV fluids all night, so that's a huge blessing (any "cancer parent" out there will understand this) because we won't be listening to that extra beeping all night long. Now if only "Phillip" will behave tonight and not give us any alarms!

I guess there's just not that much news - just waiting and gearing up for the busy days ahead. We'll have to treat tonight like a mini vacation or something - ordering our meals in, lounging around, reading books, playing games, watching movies. We'll make the best of what we can, and deal with the rest with as much dignity as possible. Some days that dignity will fly right out the window, but I guess that makes us human. Hopefully those times will happen in the privacy of our own home so that no one has to be a witness to it! :) As for tonight, Ben's ending on a great note - he just rocked out to Guitar Hero and won. Rock on!!!!

Michelle

Tuesday, March 17, 2009 5:22 PM CDT

Lots of stuff to write about, not much time.

Here's what I know so far.....

A number of contacts have been made concerning chemotherapy drug choices under his circumstances. Still waiting for word back, so no decisions on what drug(s) will be used yet.

A needle biopsy was opted for over an open biopsy because the needle biopsy is much less invasive and won't require the amount of time to recover than an open biopsy would, which would just delay getting his chemotherapy treatments started. They want to get treatments going as soon as they can figure out what in the world is out there to give him. We will also have a consult with the surgeon who will be placing Ben's new central line for the chemotherapy. He will remain in the hospital overnight for observation. All of the procedures are remaining at St. Joseph's Children's Hospital in Marshfield at this point.

Thursday morning we will consult with the Radiation Oncologist. There is a plan to give him radiation to his lungs. Not sure how much - we'll find out Thursday.

Surgery may be down the road if the chemotherapy and radiation does not remove the tumors, but will not be first on the to-do list.

There is a treatment being considered for the liver called Radio Frequency Ablation. Not sure if it's a good fit for him, but we will consult with the doctor on that soon. A very basic explanation is that it's focused radio frequency waves to disrupt and break apart the cells. I don't really know what I'm talking about - just repeating what I've been told.

Even though I expected it would, it's all happening so quickly. So far we are covered for care for Ava and Max. Hoping things continue to fall into place and we sail through this.

I need to get packed and get things organized for my absence here. I will post again when I have some free time - maybe tomorrow after he gets settled into his hospital room.

Let the chaos begin!

Love,
Michelle

Sunday, March 15, 2009 7:22 PM CDT

I’ve delayed a bit in updating because we’ve been enjoying a weekend of having fun and being normal. That last part sounds a little odd, but it was probably the most vital part of the weekend, because we are again on the path to try and recreate yet another new “normal” for our family.

Friday (the 13th may I add, for those of you who are superstitious), Ben had his usual appointments in Marshfield – ultrasound, exams by the Oncologist and Nephrologist, some lab work, and his monthly care conference. We were very much caught off guard when the radiologist who read his ultrasound informed us that there was a spot on Ben’s liver. Ben’s Oncologist ordered an x-ray to be done right away, since Wilms tends to gravitate toward the lungs if it were to spread. The x-ray showed one spot. A CT scan was then ordered. We had the good fortune of a cancellation in the CT scan department, and because Ben had already been fasting, we were able to take that appointment and get the scan done in the afternoon. What a blessing to not be sent home for a whole weekend wondering what the CT scan would show. On the other hand, what a curse to hear that the CT scan showed three spots on his lungs in addition to the one spot on his liver.

After he had the scan done, he had to go to the hospital’s pediatric outpatient treatment room to receive four hours of dialysis to clear out the contrast that was put in him to make the scan results more clear. We finally headed for home around 10p and hooked him back up to his machine for another ten hours when we got home. I’m pretty sure we broke our personal record for the longest one-day appointment to Marshfield. We left the house at 7:45a, and got home at 11:30p.

As for how we are going to approach this, there is a plan being formulated. Our doctors are pondering this weekend, then are going to be talking with their connections tomorrow morning and we are hoping to hear what they propose we do by Tuesday or Wednesday. We do know that they need to get biopsies of the (assumed) tumors so that we know if it is Wilms spreading, or a new cancer developing. We also know that surgery and chemotherapy will be involved as well, although it hasn’t been decided in which order. If it is Wilms spreading, we aren’t certain what to use for chemotherapy since he’s already received all known drugs for Wilms. Another thought being considered is sending Ben to Milwaukee Children’s Hospital for the surgery portion. Chemotherapy will take on a whole new direction than in the past since he can’t flush it out of his system without kidneys, and dialysis will have to play that role. It’s all quite overwhelming when I type this all out, but taking things step by step will lessen that.

As for how Ben is taking this latest setback, as long as we do not talk about it, he is fine. He becomes agitated when it is being discussed and his request to me was to just ignore it, not to tell anyone, and that he could hold it as a secret too. As much as I would like to sweep it all under the rug and pretend it didn’t exist, I know that we need the emotional support and prayers that our friends and family can provide. As a compromise, I am doing my best to request to anyone close to Ben, or anyone who has daily interaction with him, to please respect his wishes and not talk about it, ask him questions about it, or treat him like he’s the “poor, sick kid”. He so desperately just wants to be a kid like all of his friends are. Not to be felt sorry for. He knows that when he is ready to talk about it, we are here to listen. He came away from the winter retreat showing signs of feeling more empowered and less like a victim of cancer, and I would hate to see that disappear. Please help us help him hold on to that empowerment!

Dave, Hannah and I are doing okay. We are talking and regrouping and making plans on how to take on this new challenge and remain a strong support for each other. Max and Ava continue to draw smiles out of us when we don’t much feel like smiling. It’s all going to be okay in the end.

Please pray for Ben and send many positive thoughts in his direction.

Lots of love from our house,
Michelle

Sunday, February 22, 2009 6:40 PM CST

First of all...Happy 13th birthday Hannah!! We love you tons!


A note from Ben........

I went on an amazing, once in a lifetime trip! We got to go to Lambeau Field and get a tour of the building! We got to go into the locker room and out on the field. We went skiing, bowling, swimming, did arts and crafts, went to a bonfire and had a horse drawn sleigh ride! I got to meet former NFL players Jerry Wunsch, Bill Schroeder, Jared Tomich, and Austin King. I took 157 pictures. I met a new friend named Cameron. I met a lot of other kids. My counselor, Johnny, was really funny. Whenever someone farted in our room, he called it "stepping on frogs". Mom will post a couple pictures for me. There is a reunion trip in Tampa, FL next year and I am going. These guys are out of whack cool!

Love,
Ben

Saturday, February 14, 2009 4:01 PM CST

Happy Valentine's Day!

Ben is at the Circle of Friends winter event right now and we are missing him. From the reports that I've been getting from the staff and nurses, he sounds way too busy having fun to miss us. It sounds like they are going nonstop and having an amazing time. I'm anxious to hear all about his trip when we pick him up tomorrow. The Wunsch Family Foundation has provided incredible experiences for all of the kids to enjoy through this trip. I've been told that Ben is taking quite a few pictures, so I'll get some posted once they are developed.

I mentioned last time that Ben was going to be shaving his head again for the St. Baldrick's Foundation event in April. I have him registered online now, so if you'd like to check it out, please visit:

http://stbaldricks.org/participants/shavee_info.php?ParticipantKey=2009-62435#

You can also go to stbaldricks.org, click on 'Find A Participant', and type in his name. He's part of the team 'Balding Men of Fire', who he teamed up with last year as well. He set a goal to raise $500 this year. The event is being held in Rothschild, WI at Stoney Creek Inn on April 5th - we'd love to see you if you are available to join us that day!!

Everything continues to go well with home dialysis. Having the portable peritoneal dialysis machine has given him so much more freedom than if he were only able to receive hemodialysis. This winter event he's currently on is the perfect example of just that. We are so fortunate and grateful to have options!

Hoping this entry finds each of you happy and healthy!

Love,
Michelle

Saturday, January 17, 2009 10:21 PM CST

Hello again,

We are all healthy in our house again – thank God!! The stomach flu that began with Ben managed to find its way to everyone in the household in a matter of five days. We were completely done with it all within seven days, so for six people, that’s pretty darn good. I think that part of the purpose of feeling so horrible is to help you remember to be more grateful for what it feels like to have good health.

We spent a full day in Marshfield on Friday and continue to be on the path toward transplant. In addition to his monthly care conference with the dialysis team, Ben had an abdominal ultrasound, chest x-ray, labs, and exam…all of which showed NO evidence of recurring disease. Fabulous news since that’s the big potential thing that could stand between Ben and a kidney. His lab work came back looking pretty stable, so his body seems to be reacting well to the dialysis, medications, and injections, as well as the recommended renal diet we’ve tried hard to follow. There will be constant tweaks as we go along, but overall, we finally seem to be finding our way. This has actually been a very smooth month. Cheers to smooth months!

The winter retreat that Ben was invited to attend is coming up in February. He’s getting very excited. It’s fun to watch that excitement grow, giving him something to anticipate. In preparation, over the past month he has been learning to do quite a bit of his own dialysis care. He has learned how to hook himself up to and unhook himself from his machine (a.k.a. Phillip), record the appropriate numbers for our daily log, do and record all of his daily vitals, “tear down” his machine (remove, drain and dispose all of the disposable tubing and bags from the prior night’s treatment), and how to take care of the exit site from the dialysis catheter in his belly (he names his catheters too, which get changed every 6 months – the first one was named Herman, the current one is named Shorty). We are so incredibly proud of him for taking on such an active and responsible role in his own care. He’s very careful and attentive when he does his care in an effort to avoid contamination. He constantly tells us, “I do NOT want Peritonitis!” Neither do we. When he attends the winter retreat, he will feel more in control of his situation, even though there will be plenty of Registered Nurses prepared to take care of him. He told me that he feels more “free” now that he can do so much of his own care. On the flip side, he sometimes misses the guaranteed alone time he would get with Dave or I when it came to dialysis related care. We try hard to observe and respect when he doesn’t want to feel quite so “free” and just wants one of us to come in and take care of him.

Next week I have an appointment to have some preliminary tests done to determine if I’m eligible to be a potential transplant donor for Ben. This isn’t the actual donor screening that I would go through if I am eligible, so it won’t be that involved. The transplant seems so far away, and it feels good to be able to begin working toward it, rather than sitting back and waiting for it. I just cannot wait for the day that Ben will feel completely healthy and vibrant again. He has gotten to the point where he doesn’t know what it even feels like to really feel good, so he has a hard time communicating to us when he’s feeling bad. I’m not sure if that makes sense, but it’s the best way I know how to explain it.

Ben has decided that he would like to participate in another St. Baldrick’s Day event this year by raising funds from shaving his head again. There will be an event in our area early in April. As I get more information, I’ll pass that along to you. If you’d like to join him in shaving, he’d love the bald company! Or just the company, if you don’t feel like shaving your head is for you. It should be another fun event – this will be the seventh year that we’ve been able to attend in some way, shape or form, so we’re excited!! Any volunteers, in any capacity, are always welcomed, so if you think you might be interested or have something to offer to the event (you can keep your hair…really!!), please let us know and I can get you connected with the right people! If you’ve never heard of this organization before, check out the website www.stbaldricks.org for more information about the events that are held nationwide. We love this particular organization that raises funds for finding a cure for Childhood Cancer. We recently got an email from a young woman in Eau Claire, WI that is shaving her head in honor of Ben (along with other WI kids) at an event near her home. What an honor when a complete stranger is willing to do that for another complete stranger.

Our family hopes that this message finds you all doing well in mind, body and spirit. Thank you for being a big part of our support system, continuously propelling us in a forward direction. We love and appreciate each of you.

Love,
Michelle

Wednesday, January 7, 2009 3:05 PM CST

Today is Ben's 10th birthday! HAPPY BIRTHDAY BEN!!!!

It hasn't exactly been the day he was envisioning, since he woke up sick. However, I think he likes the part where he gets to stay home from school and snuggle with the babies and I. Hopefully this is just the same virus that seems to be hitting every household in the Midwest lately, and not something bigger. We'll do our best to celebrate today, but we'll have to do a birthday dinner do-over so that he can actually enjoy his meal of choice, rather than beg us to make the smell of food go away. He doesn't have much room for weight loss, so I'm hoping this passes quickly and he wants to eat again soon.

Celebrating ten crazy, wonderful years of Ben's life...

Michelle

January 9th
Quick update......Ben's all better. Whatever it was is now working its way through Ava and Max. Crossing our fingers that it passes quickly and stops there!!!

Thursday, December 25, 2008 11:26 AM CST

MERRY CHRISTMAS FROM OUR FAMILY TO YOURS!!!

Love,
Dave, Michelle, Hannah, Ben, Ava and Max

Wednesday, December 17, 2008 11:52 PM CST

All is well here. Other than some lingering colds, we are feeling good and have been getting caught up in Christmas cheer! We hope that each of you are finding some time to enjoy the holiday season as well.

Ben is due to head back for his monthly check up on Friday, so he will get to miss another day of school, much to his dismay (dripping with sarcasm). He'll be receiving another IV dose of iron while we're there, as well as the injection of the red cell booster, so hopefully he won't have to deal with anemia again.

Not much new to write about - just wanted to let you know that he's doing well. Thanks for the many prayers and concerns over the last several months. We love, love, love our support system out there!!!

Love,
Michelle

Thursday, December 4, 2008 8:53 PM CST

Hello!

I spoke with the doctor today who did the colonoscopy and based on his findings, there isn't anything obvious that is proving to be a source of bleeding for Ben. Whew! As I understand it, the presumption for the moment is that his iron was very low due to renal related issues, rather than bleeding. The plan is to increase the doseage on his monthly red blood cell booster injection, and we will also automatically give him IV iron every month instead of on an as needed basis. They will continue to keep a close eye on his labs and if there is another unexpected dip in his hemoglobin, then we may look at pursuing further studies. Otherwise, we aren't due to go back in until December 19th since I'm able to give him his next injection at home.

Ben's doing well, although I think he may have caught whatever virus that's been floating around here. He spent the day at home today to get some extra rest. Hopefully tonight will be uneventful and he can get back to school tomorrow.

There's not much new to write about and I'm hoping it stays that way. Thanks for checking on Ben!

Love,
Michelle

Saturday, November 22, 2008 9:28 PM CST

We had a long day at the clinic and hospital yesterday. We arrived for Ben's first appointment at 9:00 a.m., and they finally cut us loose at 5:00 p.m. He was especially tired last night.

We did, but didn't, get answers from the colonoscopy and endoscopy. We learned what is NOT causing the low hemoglobin, but didn’t find anything obvious that could be the root cause. I guess we have to start somewhere though. There are a couple of possibilities, but it sounds like those things are unlikely. They drew his blood and found that his hemoglobin is finally bouncing back, although it's still lower than they'd like to see it. I'm not sure if the hemoglobin has risen only because of the injections and iron that he's been given over the last couple of weeks, or if it's because there is no longer a problem going on. Or maybe there never was. Or maybe there still is. The doctor took several biopsies from the areas that were scoped, which may tell us more. We were told to expect to hear something early to mid week next week. There are further tests that can be done if they aren’t satisfied with what we learn through this one, but he reassured Ben that the other tests were much less invasive.

Thanks to the rise in hemoglobin, he looks a lot better than he had several days ago and he has a lot more energy too. Somehow he and Dave are the only two in the house to dodge the many viruses that are lurking in this den of sickness that we call home. Three of us are on antibiotics of some form, so hopefully we’ll all be healthy again soon.

Wishing you all a happy rest of the weekend!

Love,
Michelle

Tuesday, November 11, 2008 9:04 PM CST

Hello!

We've taken just a little detour in the last few days. When I took Ben in for his injection to boost his red blood cells last week Friday, they also drew some blood to see how much his hemoglobin had increased since his last red blood cell booster two weeks ago. Instead of seeing an anticipated increase, his numbers had dipped even further. He was really low to begin with, so that was concerning. Marshfield ran stool cultures to test for blood and found a large amount in one of the tests and traces in another. He will now be having a colonoscopy and an endoscopy done next week Friday to see if they can find the source of bleeding. Hopefully it's something very simple and can be fixed easily. I'm told it's not uncommon for renal patients to experience irritation of the bowel lining.

Today I took him to Marshfield to receive more iron through an IV, get more labs, and to get another injection to boost his red blood cells. I was taught how to give the injection and then sent off with three more doses to give him at home once a week until his body recovers. We were originally scheduled to go in for his "usual" next week on Friday - labs, ultrasound, a check up with his Oncologist, and care conferences with the Nephrology team. Since we now added a new patient exam with the GI doctor, a colonoscopy and an endoscopy (requiring general anesthesia, therefore more time in recovery) to the already fun filled day, we have opted to take out the care conference and just go back and do that on another day.

As for how he feels, he's mostly just very tired and his appetite isn't where it usually is. He looks a little yellowish and his lips are pale. He told me today that he's tired of feeling like this and he "doesn't like all of this stuff".

So that's where we stand for the moment. I'll post another entry as we find out more about why he's so anemic. Thanks for checking in!

Love,
Michelle

Friday, November 7, 2008 11:18 AM CST

When we first found out that we were expecting twins, another parent of twins told us, "The first six months are rough, but after that it gets a lot easier". I will concur that the first six months are rough, but at 9 months, I'm still waiting for the "gets a lot easier" part. It's an absolute blast raising twins - I genuinely mean that and I wouldn't change a thing. But the small nuggets of time (and they were small nuggets to begin with!) that I was able to squeak out for anything non-baby related before is dwindling even more with each move toward mobility and their diminishing needs for sleep during the day. This is my roundabout way of explaining why an update on Ben's webpage is a rare thing lately and I don’t foresee it getting better in the near future. I know that this is a phase, and that I will miss it all when they grow up. This is something I must remind myself of frequently. It’s a good thing they are so darn cute.

With that said, things are going pretty well with Ben. His dialysis continues to do its job, however it's a machine and it simply can't replace what a body is meant to do. There is a lot more adjusting to his treatment plan than I had imagined there would be. Things can fluctuate on a daily basis in some weeks, and then stay the exact same for a couple of weeks at a time. There is no such thing as consistency, which is something I crave. It can also be a bit of a juggling act to get him on his machine twice a day when there are after-school activities or birthday parties or other fun things going on...not just with him, but with three other kids in the house. One of the drawbacks of the machine is that it alarms if Ben rolls over onto the tubing and kinks it; which is something he tends to do on a nightly basis. There are weeks when it wakes us up more than the babies do! And then there are the nights when all three of them wake us up. Those are the times when I have to remember how fortunate that we are to still be doing this all in the comfort of our own home. Not that I don’t ever complain, or let myself get annoyed and frustrated, but knowing what the alternative treatment option is helps me to keep my attitude in check. Most of the time. :)

Ben has come to really like his machine. He used to hate its presence in his room, along with the noises it made during the night. Now he can’t fall asleep without the humming of the machine on. He even gave it a name - Phillip (as in Fill-Up, since part of its function is to fill his belly up with dialysis solution). Now if we could just get Phillip to sleep through the night, even I might grow fonder of him......

Overall, things are going good. At times it’s hard to see that through bleary, sleep deprived eyes. Ben hasn’t missed a single day of school due to feeling too sick. He’s had to miss a couple of days for clinic appointments, but so far he’s really made an effort to get up and go. He tires easily, but it doesn’t usually stop him from playing hard or keeping up with his peers. I don’t think there’s a day that he ever feels really good though, so getting a transplant will be a welcome relief some day down the road.

As for a transplant, assuming that the cancer does not relapse, he will be considered eligible for one in a little over a year from now. We can begin the process next fall. It looks like we will probably go to Madison for that.

Ben received some great news at his last care conference...he is cleared to play football next year! He is so excited about that. Because he no longer has any kidneys to protect, he can participate until he has a transplant. That will give him one season to play, and he is thrilled. I’m not sure how thrilled I am about watching him play full contact football, but I don’t think that my opinion is going to matter in this one.

Today we are headed over to Marshfield for a quick injection to boost his red blood cells. I love how infrequently we go to the clinic compared to this past summer. Our next appointment is on November 21st, where he will meet with both Oncology and Nephrology. He will have another follow up ultrasound done to confirm that there is still no evidence of disease, and then will have his monthly care conference with the Nephrology team. He will be followed by Oncology every two months with ultrasound, lab work, and exams and we will continue to meet with the Nephrology team on a monthly basis. I like that much better than the daily treks to the clinic!

Ben has been invited to participate in a winter retreat in February. Heidi Giese, the Child Life Director at St. Joseph's Children's in Marshfield is one of the counselors and is asked to choose three kids from their hospital to go. Ben was one of those lucky kids! The retreat is funded by a foundation that was formed by a former Seattle Seahawk player. From what I understand, there will be a couple of retired NFL players attending at counselors as well. It sounds like a really fun trip for him. AND...there will be a nurse assigned to him that will be able to take care of his dialysis needs, so he will be able to go alone, with Phillip in tow. He's a little nervous about that part, but I think there's enough incentive to override those fears. I'll write more about the trip as we learn more. I do know that it happens to be taking place less than an hour away from where we live, so I personally feel reassured by that.

I hear babies stirring, so my time is up. I will make an effort to post updates more frequently, but don’t be surprised if I’m not back again for awhile. I hope everyone has a happy Thanksgiving!

Love,
Michelle

**New photos posted**

Sunday, October 26, 2008 6:16 AM CDT

Oooh, look at the date of our last update!!! Apparently we've been busy! Active children will do that to parents...
Ben has been doing well with his home dialysis. There are tweaks and adjustments as we go along, but it is doing it's job. His high blood pressure has been brought down (in fact a little bit too low sometimes) so he is not on that medication anymore. He has another oncology checkup in November, so we will go from there. He was able to get on the field for a few plays for his football team, along with being the first to break through the banner in pre-game introductions and going out as one of the captains for the coin toss! He was very pumped! School is always a necessary evil for him but his grades are good so he is overcoming his dislike enough to pick up what the teacher is throwing out there!
Today we will head over to the Peace Lutheran Church in Almond for their annual chicken dinner fund raiser at 11:30. They are having a silent auction and they are kindly giving the proceeds to Ben! Another example of the wonderful people we have been blessed to know! My goodness...
Hannah is continuing to make us proud, and the babies at nine months old continue to make us laugh with their achievements and curiosity. They also wear us old parents out!
Just a quick early Sunday update, I must sign off now as I hear the awake roar of a baby from the other room.
Love,
Dave

Friday, September 12, 2008 7:54 PM CDT

Hello,

Things have been going really well and I haven't had much to write about. That's a change that we welcome with open arms!

School is going great for both Ben and Hannah. Ben was pretty tired in the evenings during the first week, but that seemed to improve this week. It helps that he has to be on the dialysis machine at night because it ensures that he gets at least ten hours of good rest. Aside from a few minor restrictions (mostly related to diet), he's able to participate in all school activities. Everyone at school has been doing a remarkable job keeping things as normal as possible for him.

Yesterday Dave and I took Ben to Marshfield for the day for follow up appointments. He had an ultrasound done, and then we met with the Radiation Oncologist, the Oncologist, the Nephrologist, and the dialysis team for his monthly care conference. The Radiologist said the ultrasound looked perfectly normal, aside from the lack of kidneys. :) His Oncologist would like to follow him through ultrasounds every two months to keep a very close eye on potential tumor regrowth. He is still exploring what other options are available for follow up treatments for the cancer, but at this point there isn't anything new that we haven't already tried, so we're not going to pursue further chemotherapy. The Nephrology team is pleased with his progress on peritoneal dialysis - all of his labs came back in the ranges they had hoped for and there were only a couple of tweaks made to his current treatment plan. His blood pressure is still higher than the doctor would like, but it's coming down with the use of two medications and getting his dialysis tweaked to the right prescription for his body. He's still hoping to eliminate at least one of the blood pressure medications, but it's likely that he'll need to be on at least one long term.

Overall, he's doing great considering everything that the last three months has brought him. And we're loving that we are settling into a routine again. Dialysis is certainly limiting in ways, but we are so fortunate to be able to do it in the comfort of our home, allowing Ben to lead a very normal nine year old lifestyle.

Hannah, Ava and Max are all doing fantastic. Hannah is a delight to watch as she matures into a bright, beautiful and quite funny young lady. She adores her baby sibs and is like their second mama. Ava is good company and loves to chat with whoever will listen. She's content to sit in one spot and occupy herself with whatever she can reach without having to move too far. Max, on the other hand, leaves no stone unturned. He crawls circles around his "big" sister while she scolds him and alerts me to the trouble he manages to get himself into. They both love scooting around in their walkers, with Max plowing his way past her if she's not moving fast enough. Thankfully, she's very patient with how he expresses his zest for life. They have brought much joy and many smiles to our household.

As long as things continue to go well with dialysis at home, Ben won't need to go back to Marshfield until late October for his next care conference with his Nephrologist and the dialysis team. We love the sound of that!!

I will try to get some new photos posted soon. In the meantime, take good care of yourselves and your loved ones.

Lots of love from our house to yours,

Michelle

Wednesday, August 27, 2008 1:18 PM CDT

A note from Ben...

Last week I had my catheter taken out. Dad and I went and we had a fun day. I don’t have to worry about getting wet anymore, so Hannah and I had a water fight. I'm excited that it's out. It was scary when I had it done. I was awake when it was taken out. I'm glad it's over. We had a special dinner to celebrate. Thanks for all of the messages. I like getting the messages. Love, Ben

OK, now to fill in the blanks!
We arrived at the hospital at 8:30 a.m., no small feat considering that we had to unhook Ben from dialysis before he was done this morning in order to leave on time. We were led to a surgery prep room where it was decided (with some convincing by the nurse and I) that the procedure would be done with only a local anesthetic. The nurse assured Ben that there would only be some pinches and some tugs. He was not especially good with that, but the reward would be not having any recovery time after the procedure. We were taken to the procedure room (I got to go along and stay behind a window) where the deed was done. Ben got pretty scared but stayed still and it didn't take long at all. After that a trip to McDonald's was in order, along with a trip to a sports store in the mall. We also wandered through Steve & Barry's clothing store but resisted the urge to buy. Ben got a little tired after our errands and slept for a large part of the way home, so I took advantage of that and took some back roads on the way home to break the monotony.
We celebrated with some red meat on the grill, pasta, and pea pods from our neighbor Kim's garden.
Not too bad of a day!
Love,
Dave

Saturday, August 16, 2008 10:19 AM CDT

Hello!

It's been awhile since I've posted - the days have been crazy busy even though this week was supposed to be our first week "off". There's never a dull moment here.

We reached an exciting milestone...last week Friday Ben completed his 20 treatment course of radiation. Wahoo!! He is more than thrilled to be done with the daily trek to Marshfield accompanied by the nearly constant nausea and fatigue. I tried to stir things up for him by having a variety of people bringing him to his radiation treatments as often as possible. He had a lot of fun with each new adventure - THANK YOU to everyone who made those days much more colorful for him and gave me an opportunity to spend that much more time with Hannah, Max and Ava! Despite how crummy the radiation made him feel, he did enjoy going to see everyone in the Oncology Radiation Department. They are such a great group of people and always made him feel very special. We will miss seeing their smiling faces every day.

He celebrated his latest milestone in a big way - he was able to meet two retired Green Bay Packer players (as you can see in the photo). Gilbert Brown and William Henderson were at Vista Royalle, a local campground that our friends own in Bancroft, doing a charity event. Our friends made arrangements to have Ben meet them and they ended up giving him an autographed football (thanks Diane and Scott!). As if that weren't enough excitement for one night, he also received a LeRoy Butler autographed tee shirt and an autographed photo of William Henderson. He couldn't have been more delighted. It was a beautiful summer evening, and watching Ben being carefree, running around with his friends was the biggest treat for us. There have been few evenings like that this summer, so this really stood out for us. Everything that has happened this summer has been a good reminder for us to soak up all of those happy, memory making moments.

Dialysis at home is going well. There are still some adjustments being made, but I think we're getting closer to where we need to be. We're learning as we go along that this is not a quick or simple process. His blood pressure has continued to be higher than his doctor would like, so he's now on two different types of blood pressure medications until we can get his dialysis established. The doctor seems confident that he will be able to go without medication eventually, and hopefully this is temporary. He's currently on six medications, so I would love to be able to drop a couple of them.

Last week Ben had a test done called a Peritoneal Equilibrium Test (PET), to help determine how well the dialysis is working with his body. We don't have all of the results back yet, but what we do have is looking positive. It was done over the course of five hours, so we had another long day in Marshfield.

Next week on Friday, Ben is getting his hemodialysis catheter removed. He is soooooo excited about this. He hates having both of the catheters that he has, but the hemodialysis catheter is the most bothersome to him. It's also the one that can wreak a whole lot of havoc on his body if it were to get infected, so we're anxious to see its departure as well! They had been hesitant about removing it until they felt confident that his home dialysis treatments were going well. Ben was really hoping that he would be able to get that taken care of before school started. Once the exit site from that catheter heals, he can shower and swim again - those little luxuries that we take for granted.

After he gets his cath removed on Friday, we won't have to go back to see anyone for anything for about 2 1/2 weeks. That's the longest break we've had since June, so we're excited about our upcoming "vacation" at home. On September 11th, he is scheduled to have a follow up ultrasound and exam by his Oncologist, to have a follow up with his Radiation Oncologist and to have a care conference with his Nephrologist, Nephrology Nurse, Dietician, and Social Worker. It will be a very long day, but I'm glad we'll be able to get it all done in one day, now that we're adding school to the mixture.

So, as you can see, things are getting better and better. As I always do, I grossly underestimated the time it would take for us to get back into a normal routine (of some kind) at home after radiation was done. I'm trying to be more realistic, take a breath, and let that work itself out. Whenever I get frustrated about having to hook my nine year old up to a dialysis machine in his bedroom, all I have to do for a quick attitude adjustment is to look out of his window and remember that I'm doing just that...looking out of HIS window, not the hospital's window.

I'll try to get back sooner than I did last time. In the meantime, have a fantastic weekend and week ahead!

Lots of love,
Michelle

Tuesday, August 5, 2008 10:30 PM CDT

Another week has slipped by. I wish I could say that we've been having so much fun that I didn't even notice the time go by. We are slowly adapting to life with dialysis at home. The process of giving dialysis itself is going very well. It's the fitting it into our schedule part that's been a hard adjustment. We have to be extremely careful when we connect and disconnect Ben to the machine because it's a sterile connection and can be easily contaminated. Because of that, anyone in the room needs to be masked, doors, windows and vents need to be closed, and I can't have the babies in the room with us. It's pretty rare when one or both of them are napping at the same time that I need to be working with Ben, so unless there is someone else here to help with them, it's a juggling act.

The doctor is still tweaking things with Ben's dialysis. He had labs drawn on Friday and it was found that his potassium was very high. The doctor felt he might not be getting enough dialysis, so they immediately had us begin doing an extra hour at night, and also added a treatment in during the day. By Monday, his potassium level dropped significantly, and everyone breathed a sigh of relief. His blood pressure has gone down a little over the last two days, but it's still too high. They would like to see him maintain a normal blood pressure without medication eventually. He had been getting quite a few leg cramps after getting his treatments, but that seems to be subsiding as the adjustments in his treatments are being made. He was also retaining quite a bit of fluid, causing his face to get puffy. He's been taking anti-nausea medication every four hours when he's awake, so his appetite has increased, he's eating well, and he's keeping most of it down. He seems to have more energy too, so I think we're moving in the right direction.

We will be celebrating another milestone on Friday...that will be Ben's 20th and final radiation treatment. Hooray! We hope the nausea goes away with the absence of radiation.

Overall, things are actually going quite well considering everything that he's been through since mid June. It's really just been taxing trying to take care of everything that needs to be done to keep Ben healthy, while still trying to salvage what's left of summer vacation, and maintain some kind of normalcy for everyone in the house. I don't want to sound like a broken record, but we are thankful for everything that has been done to make this more tolerable and easier to deal with. The only way we are making this work is with lots of help.

Good night everyone!

Love,
Michelle

Wednesday, July 30, 2008 9:40 PM CDT

Hi!

I can't believe how quickly these days have been getting past me. We've crammed a lot into one week. I don't have much time, so I'll keep this brief. We're now doing dialysis at home and it's going really well. I'm not sure where all of that time was that I thought I would have once we were home though. I suppose I'll see more of it once he's done with daily radiation treatments. Ben's blood pressure continues to be consistently high so they've been tweaking things to try to get that under control. He seems to have more energy than he did with hemodialysis. He's been experiencing quite a bit of nausea and it can be a chore to get the number of calories in him that he needs. The hope is that once radiation is done, the nausea will decrease or possibly even go away. We still have some work ahead of us to get him to where they'd like to see him, but we're getting closer every day. I have to wrap this up now so that I can get him set up on his machine for the night. Sleep tight, everyone!

Love,
Michelle

Tuesday, July 22, 2008 10:03 PM CDT

Hi!

It's been a busy several days, and will continue to be for a little while longer. I’m finding it difficult to find time for even the smallest tasks lately, so I’ve had to put this page off to the side. It's so exciting to think of how much time we are going to have on our hands after we get Ben completely on peritoneal dialysis at home. Funny how one’s perspective can change so quickly…just over a month ago, I felt like there wasn’t enough time in a day. Looking back now, it seems like we had all of the time in the world. I suppose that’s considered one of those darn life lessons learned the hard way. :)

Ben had his seventh radiation treatment today - 13 more to go! Yesterday we began training on how to give Ben his dialysis at home. Our training was at the Dialysis Center in Marshfield. We spent about four hours yesterday and five hours today working with a wonderful, and very patient, nurse. There is a lot to learn and my head is spinning, but I think it’ll be fine once we get used to it. We’ll just never get to go out on a nighttime date again until he gets a kidney transplant! I find this whole thing pretty intimidating – it’s just not natural to put your child to bed by hooking him up to a machine that’s going to be cleaning his blood while he sleeps. I guess I’ll get used to it, but it’s hard for me to imagine being able to relax enough to go to sleep myself. I don’t think I’ve mentioned it before, but everyone in the Nephrology department has been amazing. We feel very fortunate to have them taking care of Ben.

Last week was a long and tough week on Ben. Getting hemodialysis every other day was really hard on his body. Starting daily radiation treatments on top of it seemed to compound everything. He was nauseous and sick for most of the week and what little he did eat, he didn’t keep much down. As a result, he’s getting rather thin. He’s lost more than 10 pounds since this all began, so we’re now working on getting him to eat better so he can gain that weight back. They put him on an appetite stimulator and it seems to be working well.

To end on a happy note though, he’s had a lot of fun and exciting things happen to him (we ALL have!) - thanks to our wonderful friends and family, the medical community and complete strangers. We can’t tell you enough how much every kind word, deed, prayer, gift, smile and hug means to us. It is what’s carrying us through each and every day. We are constantly amazed at how lucky we are to have this sound support system - we don’t take any of you for granted for even a moment. Everything that has been done to make this nightmare a little more tolerable has given us the chance to spend less time worrying and more time smiling and laughing with you all. Not every day is rainbows and butterflies, but the fact that there are still days like that is a gift.

I’m not certain how long we will be training, but I probably won’t be back until after that. In the meantime, please remember that we appreciate you all and hope that you are having a fabulous week!

Love,
Michelle

Monday, July 14, 2008 3:53 PM CDT

Hello!

I'm sitting next to Ben while he plays unlimited PS2 games during his dialysis treatment. We have time limits for that at home, but when we're here, it's a free for all. He takes advantage of that opportunity! It's one of the perks of having no kidneys. :)

We had a nice weekend. Ben was able to spend an overnight at Grandma Lansing's house. We figured we better get one last sleepover in before he's doing peritoneal dialysis every night. Grandma and Grandpa Ellis and Uncle Mike are here as well, so we were able to have a nice family dinner all together last night. That doesn't happen as often as we'd like since it seems we're split up in different directions lately.

He had kind of a rough start to the day today. He woke up feeling pretty wiped out, and his face was puffy from retaining fluids over the weekend break from dialysis. When we got here, we went to his first radiation treatment beforehand. It was a quick appointment and seemed to go fine. Shortly after we got settled into the outpatient room for dialysis, he got sick. They started the treatment, but his catheter wasn't working very well. They then put some medicine into the catheter, which had to sit for an hour before they could restart the treatment. In the meantime, he got sick two more times, so they gave him some IV anti-nausea medication. It seems to have worked, because he's doing much better now. He started to get another headache a couple of hours into the treatment, so I gave him some Tylenol, hoping to catch it before it gets bad like it had been doing in the past. They changed the dressings on his catheters today too, which he absolutely despises, so he's not very thrilled with how this day has gone. I can't say that I blame him though. Because of the late start, it looks like we'll be getting home around 8:00 p.m. Considering we left the house at 9:30 a.m., I'm not very thrilled with how this day has gone either. This isn't what I had envisioned doing on a beautiful, sunny, summer day while the kids were on summer break. It also wasn't how I wanted to spend my first summer with Max and Ava. This is making me grumpy - I can only imagine how disappointing it is for Ben. Like Ben says...stupid cancer.

Uncle Mike is with us today. I'll be happy to have someone else in the driver's seat tonight. It's nice to have extra company for the day.

Ben's now sleeping off his headache. These treatments drain him. I've been told that peritoneal dialysis will be more gentle on him and he should have more energy. I hope so, or he's going to have a tough time getting through a day of school.

I'm whining, so that's my cue to wrap this up. Hoping you're having a great day.

Love,
Michelle

Wednesday, July 9, 2008 2:18 PM CDT

Hello again,

It was a decent night last night, so we are officially released from the hospital. Shortly after Ben was discharged, we headed down to first floor for his appointment with the Radiation Oncologist to get him set up for radiation. He'll be receiving a maximum of 20 treatments, assuming he tolerates them well. The treatments will begin on Monday and will be every weekday until he's done. The treatments themselves will only take 5-10 minutes each time and the only likely side effect he'll have from them is some nausea. It seems kind of crazy to be driving 80 minutes for a 5 minute treatment, but at least some of the days we'll also be in for dialysis. Thankfully it's not going to last for a long time.

After meeting with Radiation, we headed right back up to pediatrics in the hospital for his dialysis treatment. He had labs drawn and his potassium is still higher than it should be. It has yet to be in a desirable range since he began getting dialysis, so they are going to make some adjustments with the treatment itself and we'll continue to monitor his potassium intake at home. He hasn't been eating very well, so we don't think the high levels are from overindulging in the wrong kinds of foods.

This time we tried to ward off a possible headache by giving Tylenol early on into the treatment, but he still ended up with one. He was also complaining about some more nausea. He has 1 1/2 hours left on the machine and just fell asleep, so I'm really hoping that when he wakes up, the Tylenol will have done its job and he'll be feeling better.

We'll begin training for the at home peritoneal dialysis on July 21st and they seem confident that we will be ready to be on our own by the end of that week. It will be nice to get everything all wrapped up and a new routine established before school begins. That's me thinking too far ahead again. He's going to have quite the "What I Did For Summer Vacation" report in the fall.

It's been a long couple of days and we're both really looking forward to getting home tonight. Maybe tomorrow I'll tackle my to-do list that I never got to on Tuesday. :)

Love to everyone,
Michelle

Tuesday, July 8, 2008 8:03 PM CDT

Hello everyone!

Our "day off" today didn't exactly go as planned. I had a lengthy to-do list set up for myself today in an effort to catch up on the many things that I've had to let go over the last few weeks. When will I learn to not have expectations for any day, let alone lofty expectations?!?

Ben woke us up at 1:30 a.m. complaining of his stomach hurting badly. The pain meds that we gave him didn't help, and then he threw up, so we called the doctor fearing he may have peritonitis. We were warned that with his peritoneal catheter, he'd be more prone to that, and the symptoms he was having seemed to be the symptoms that we were told to look for when we left the hospital. His doctor decided he wanted him admitted, so off we went to Marshfield on this lovely, very early morning.

He's had a variety of tests done today, and it's been determined he does not have peritonitis - whew! If he did have it, we would have needed to stay in the hospital for a ten day course of antibiotics - ugh!! There were a few other things that they were considering could have been causing his pain and nausea, but those things have checked out okay as well. They are thinking that he may have a touch of a stomach virus or possibly food poisoning. Since his body is pretty run down right now, he probably reacted to it more severely than someone healthier would. He is spending the night for further observation though because he's not eating well again, has been vomiting off and on throughout the day, and continues to complain of stomach pain. He's been sleeping since late afternoon, so he must be feeling more comfortable.

Tomorrow we are meeting with the Radiation Oncologist and will hopefully get a radiation schedule soon. We were also already scheduled to be here for his dialysis treatment tomorrow, so we'll be saving ourselves one trip over here. I'm pretty sure he'll be released tomorrow after his treatment.

Monday's treatment went mostly well, but he ended it with a raging headache again. That seems to be the trend for him. I gave him Tylenol before we left for home and he slept the headache off, but woke up to a wave of nausea. After some anti-nausea medication, he was a new kid and had a good rest of the evening.

It would be nice to know what's going on, but I have a feeling we'll still be scratching our heads and guessing tomorrow too. I'm hopeful that tonight will bring lots of rest (for both of us) and healing so that we can keep on moving in a forward direction.

I suppose I better wrap this up if I want to try for a good night of sleep. I may be back tomorrow, depending on where the day takes us. I sure don't want to make (gasp!) plans though! :)

Love,
Michelle

Saturday, July 5, 2008 5:27 PM CDT

My gosh - this week flew by! Every day I meant to get an update posted and every day ended quicker and later than the one before. It's been a really good week though, so no complaints here.

Ben had dialysis treatments on Wednesday and Friday. They went pretty well, although he ended up getting some headaches and was incredibly tired after each treatment. His appetite is slowly coming back, but his doctor would like to see him getting more calories. He lost quite a bit of weight and needs to gain some back. Dialysis days take up about seven to eight hours of the day from the time we leave the house to the time we get back home, so I have to leave the babies behind. We've been fortunate to have enough willing family and friends to take care of them while Dave is at work and Ben and I are gone on those days.

We'll be meeting with the Radiation Oncologist on the 15th to figure out how long he'll be receiving radiation treatments, but from what I understand, it will be shortly after that appointment. We're not sure how radiation will affect how well the peritoneal (at home) dialysis treatments work. We're really hoping that it doesn't create a new problem and force us to use only hemodialysis. I'm still not certain when we begin training for the peritoneal dialysis, but once that has been completed, and assuming Ben remains relatively healthy, we should only be making two trips a month to Marshfield. I'm getting too far ahead of myself though - I have to constantly remind myself to take it one step at a time. When Ben was first diagnosed so many years ago, I remember how quickly the estimated six month treatment plan turned into a year from a variety of setbacks.

Uncle Nick and our nephews were here for the rest of this past week and were fantastic help. I'm guessing they were very happy to be driving out of our driveway yesterday after a long week of baby care, lawn care, house care, and everything in between care. Thanks, guys!!!

Uncle Mike is coming for part of next week to take over the role of Nanny Mike. And on Friday, one of our good friends, Bonnie, is going to come and stay with them. The next week will be a busy one between dialysis, possibly training, and possibly radiation. I'm tired thinking about what the next 2-3 weeks hold. Thank goodness it's summer and he's not missing school. He would strongly disagree with me on that!

Some good friends threw Ben a fun party on Thursday, complete with an incredible fireworks show. It was such a nice, carefree evening - good food, good weather, good friends. It was a boost we all needed more than we may have even realized. I know I’ve said it before, but we are so fortunate to have the family and friends that we do.

As always, thank you to EVERYONE for helping to make this all bearable. Your love and support has come in so many forms, leaving us in awe of your kindness and generosity. We love you all!

Love,
Michelle

Monday, June 30, 2008 10:38 PM CDT

Happy Monday night!

It was a long, but good day, that ended even better. First, our sweet, little babies gave us the best gift ever and slept in until 7:30 this morning. Ava and Max rock! :) After some morning chaos (mainly due to my lack of organizing myself the night before), Ben and I hit the road at 10:45 a.m. Crazy Uncle Nick, along with Hannah and our awesome nephews, Brian and Jack, babysat for us while we were gone. They are good sports! We made a quick stop at Target so that he could spend a gift card that he was given and was anxiously awaiting to spend, then headed to Marshfield. He had a four hour dialysis treatment, but by the time he's put onto the machine and then taken off, it's closer to five hours. We were back on the road around 6:00 p.m. and arrived back at home around 7:30 p.m. Since it was the last game of Ben's baseball season, we hurried over to the field to watch part of the last inning and catch up with his teammates, who he hasn't seen since all of this started. His team is so great and greeted him with a warm welcome - that was the "ended even better" part of the day. We stayed for awhile after everyone left and he played some baseball with three of his friends. He was pushing himself hard, considering he hasn't been active for over two weeks, but he was having a blast. It was the best thing ever to see pure joy on his face again. He was hesitant to go at first, but was happy he decided to. I was happy too - he needed that boost in a big way.

With each treatment that he gets, I learn new things. They try not to bombard me with too much at one time, so they throw me little nuggets every time we're there. I love them for that. There's a lot more to learn, so I'm trying to be as patient with myself as they are.

The day has gotten away from me, so I need to call it a night and just go to bed. Tomorrow is an "off" day, and then we'll be heading back to Marshfield for another treatment on Wednesday.

Hope your week is off to a great start - enjoy the rest of it!

Love,
Michelle

Saturday, June 28, 2008 9:06 PM CDT

Hello...from Almond!!!

Yes, we are home and we couldn't be happier about that. We arrived at our cozy, little house this afternoon and were greeted by family with a clean and tidy house, clean laundry, a nice dinner, a stocked refrigerator, and lots of love. To say we are blessed is the understatement of the decade.

We managed to get everything into the van, although Dave had no rear view due to all of the fun balloons that Ben was given over the past couple of weeks. Ben slept most of the way home, but seemed to be comfortable. He went straight to the couch when we got home and has pretty much planted himself there. He's completely wiped out. I think he's glad to be home, but it's hard to tell because he feels so lousy. We're glad to be home and all under one roof again. Please say an extra prayer for Ben to heal quickly. It's hard to watch his body being so depleted.

This is going to be short - I want to go and spend time with everyone. And I plan to go to bed very early tonight, with the hopes that Ava and Max will sleep very late tomorrow morning. That last part might be a stretch, but a girl can dream!

Love to all,
Michelle

Friday, June 27, 2008 3:25 PM CDT

Hello!

It's been kind of crazy around here, but I finally have some quiet time to update while Ben sleeps during his dialysis treatment.

His fevers went away yesterday, as did the pains that he was having. The culture for colitis came back negative, but I was told that sometimes they can get a false negative result, so it doesn't completely rule that out. Because he seemed to improve with the antibiotic, they've decided to keep him on a full course of it anyway.

He ended up going to Pet Therapy in the afternoon and he really enjoyed himself. He was only able to get through half of it though before his back started hurting enough for him to want to go back to the room. He had his picture taken with Callie, the dog, before we left. I'll try to remember to post it some time.

He's been switched over to all oral pain medication as of this morning. They started last night and the meds made him very, very sleepy, so this morning they reduced the dose. He seems to be doing really well. The dressing on his peritoneal catheter was changed today and he saw it uncovered for the first time. I could see the disappointment in his eyes to see yet another tube hanging out of his body. We uncovered a few more tape blisters during the dressing change, but the old ones seem to be healing well.

Because his fevers didn't return and he seems to be tolerating his pain well with oral medication, they are working on getting him released tomorrow - hooray! As much as I'm looking forward to going home, it's also daunting to think of how much more is ahead.

Once we get home, we'll be returning to the hospital Monday, Wednesday and Friday for a couple of weeks, until we can access his peritoneal catheter. It needs to be completely healed and the skin needs to be sealed around the catheter tube or it could leak during a treatment, which is a huge infection risk. During the next couple of weeks, we'll have his peritoneal catheter flushed and the dressing changed when we come in for the hemodialysis treatments. We'll also be meeting with the Radiation Oncologist to make a plan for radiation treatments. He'll probably go once a day for two weeks, beginning around week three, post surgery. Once we are ready to use his peritoneal catheter, we'll go to the dialysis center to train for that 6-8 times before we're on our own. Once we are doing that at home, we'll need to take him in to see the Nephrologist twice a month. Chemotherapy hasn't been ruled out, but is unlikely because there are no known drugs that we haven't already tried for his type of malignancy. I'm hopeful that everything will run according to schedule and that we don't have any bumps in the already bumpy enough road.

Last night, Dave and the babies were brought to us by good friends (thank you!!), so our day ended well. We were missing Hannah, but she was busy having some fun down time with Auntie Sarah. Since she has another softball game tonight and they aren't able to visit, our friends are bringing the babies to us again tonight. I know that it's not an easy task juggling all of that, but it means so much to me to be able to hug and kiss them every day. They have already grown so much in the two weeks that I've been away from them - I hate missing that. I am incredibly grateful to anyone who is willing to bring them to me!!

Ben's morale is improving greatly. Yesterday he was feeling mischevious and played a little prank on the nurses by pressing the call light and playing a musical card into the call phone. He got a kick out of himself doing that. His nurse had him do it again for the next shift too. He had a few other tricks up his sleeve for the night shift nurses, but being sleepy from pain meds foiled his plans.

He was told yesterday by the Child Life Specialist that there was something special being sent to him from Washington. He decided to let it be a surprise, but is asking "hot or cold" questions until then to try and figure it out. Hmmmmmm...should be something fun for him to ponder over the next couple of weeks.

Well, I need to update his medical book and get a couple of things done before Max and Ava arrive. Thanks for checking in on us!!

Love,
Michelle

Thursday, June 26, 2008 8:36 AM CDT

Good morning!

I meant to update the site yesterday, but the day was incredibly long and by the time I really sat down to do it, the clock was showing midnight. My head was spinning and I just needed to shut down for the day, so I figured it was better to wait until this morning. I've been trying to do this for over two hours, but with almost non stop interruptions starting at 6:45 this morning, I'm wishing I did just do it last night.

Ben ended up getting a good night of sleep for the first time in many days. And when Ben sleeps well, I have a fighting chance to get some rest too.

Yesterday started off a little shaky, gradually got worse, then turned around and ended well. Roller coaster days seems to becoming the standard lately. I'm just glad it ended well.

He wasn't feeling well and started to develop fevers. They did some cultures to see if he has some kind of infection, but it's too early to know the results. It's suspected that he may have colitis, so they began him on antibiotics until they know for sure. He has greatly improved since beginning the antibiotics. He was feeling pretty miserable and finding it hard to even get comfortable by mid day. Rightfully, he was very frustrated.

Auntie Sarah brought Max, Ava and Hannah in the afternoon, which gave Ben a huge morale boost. As soon as he saw his brother and sisters, his disposition shifted and he brightened up. Usually after everyone leaves, he goes back into his shell, but this time he stayed fairly upbeat and was more open to conversation with me for the rest of the evening. What a relief to see a sign that the Ben I know is still there!

I met with the dietician and have a slightly better idea of how to feed Ben. Thankfully there are a lot of foods that can still enjoy - we'll just really have to keep close tabs on labels and portion sizes, and educate him so that he can make wise choices when we're not there to help him.

Yesterday he had a four hour dialysis treatment. Since he had a fever when he began the treatment, they infused his blood back at a little cooler temperature. It made him feel very cold and he was shivering. He wasn't very happy about that.

I don't know when we'll be leaving. Since he began getting fevers, I'm fairly certain that we won't be home by the weekend like we were thinking. I'm hopeful that we will be getting some more answers today on what the plan is once we do leave and he has recovered from surgery. We're still waiting to hear what the plan is and I'm beginning to get impatient. The change in the pathology report has likely changed the approach that was being considered, but we haven't been told how. If this morning doesn't bring us some kind of direction - even if it's "we're still thinking and need more time", I'll be making certain that this afternoon does.

Today will be pretty laid back. I'll work on getting him out of the bed more and hopefully we can get him to eat. He's currently in isolation until we know what's causing his latest symptoms. If we get the green light to leave the room, taking a walk will definitely be on our to-do list. Today is Pet Therapy, so I'm hoping that he can leave the room. He'd be pretty motivated by that to do some walking.

Last night was the first night in about a week that Ben felt like reading guestbook entries. He sure does enjoy hearing from everyone. Thanks to everyone that has signed in, emailed, sent snail mail, visited, called, and helped out in so many different ways. This has been quite a ride and there's no way we could be sitting here still (somewhat) sane and in tact without your support. We love you all!

I'll be back when I know more. Hoping that's soon!

Love,
Michelle

Tuesday, June 24, 2008 9:25 PM CDT

Hello,

It's been a very long day. A mixed bag of the good, the bad and the ugly. I'll start with the ugly and work my way to the good, so that I can wrap this up on a positive note.

The ugly. I was informed today that the pathology report indicated evidence of microscopic disease in five of the seven lymph nodes that were removed with the tumor. Yesterday, Ben's surgeon was sent a pathology report indicating that all seven nodes were negative, so that's the information he passed on to us. Pathology then sent a new and revised report today with this news. I don't know exactly what happened, and to be honest, I'm not up for the task of finding out why that happened because it doesn't change the result. The histology of the tumor is still favorable. I'm meeting with Ben's Oncologist tomorrow to talk about a radiation schedule.

The bad. Ben's mood has continued to decline. He's sad and withdrawn most of the time. Not that I can't understand why, but it's lousy to not be able to find the kid I left home with 11 days ago. I'm hoping that it's situational and will gradually resolve itself with our help and with getting back home. He's talking with the Psychologist again tomorrow.

The good. We had a bunch of visitors - greatly needed for both Ben's and my morale. First, my parents brought the rest of my brood to me, which made my day. Ben really enjoys seeing his “other halves”, and I can't get enough of them. The goodbyes are painful, but if that's what it takes to see them, then I'll deal with that. Then five teachers from the Almond-Bancroft Schools surprised Ben with a visit, lots of smiles, laughter and fun presents. I don't think he knew what to think, but that was one of the bright spots of his day and where I saw the most smiles. The District Administrator of the school popped in unexpectedly as well. I had stepped out of the room for a few minutes during the time that he had arrived. When I walked back in the room, Ben had a look on his face like he had been called into the Principal's office or something. He certainly appreciated the visit and felt like a star. Thank you, everyone, for taking the time to drive over here and help to cheer him up.

The healing process seems to be picking up today. He was up and out of bed three times. Granted, the first two times were very short lived, and he was not happy with any of us all three times (rightfully so), but he stepped up and did what he needed to do. It was hard and very painful – I'm really proud of him. He has also begun eating and tolerating small amounts of food. Pain control was better last night and now they are working on getting him off of the epidural. He's currently on an IV medication, but there's a possibility that he may switch over to oral pain medication completely by the end of the day tomorrow. They're looking at possibly releasing him on Friday. I think he made some big strides today.

Tomorrow could be another busy day. He'll have a dialysis treatment sometime in the morning, and it sounds like I'll be meeting with the dietitian to learn more about how to feed our little man with no kidneys. He'll be meeting with the Psychologist, I'll be having that meeting with the Oncologist, and the surgeon wants to wrap things up on his end because he's leaving for vacation on Thursday.

He's sleeping comfortably as I type. Here's to an uneventful night filled with many, many hours of sleep for both of us, and to even more progress tomorrow!

Love,
Michelle

Tuesday, June 24, 2008 2:25 PM CDT

OK, I know Ben & Michelle are having a busy day today so I will let you know the little bit I know for Tuesday!
Grandma, Grandpa, Hannah, Max, & Ava were heading up for a visit at the hospital today.
There were also plans for a group of surprise visitors today, I'm sure Michelle will have lots to tell about that!
The pathology report on the tumor came back yesterday as FAVORABLE! Woo-hoo! That's awesome news. Most Wilms tumors do have favorable histology, which greatly improves the cure rate. But you still like to know for sure, so that was good.
Ben's doing pretty good. Pain is getting more manageable, he was again off oxygen, and they may take his epidural out today. There were also plans for him to take a walk today.
So if all those things happen today, he should be pretty tired by the time he's done.
I'm sure I've missed a few things, but hopefully Michelle can fill in the blanks of what I missed.
Love,
Dave

Monday, June 23, 2008 8:05 AM CDT

Good morning!

Ben had a decent night last night. He might not choose 'decent' as his descriptive of how he's feeling, but according to the doctors, it was decent and he's recovering well. His incisions are causing him a good deal of pain when he moves, but the pain meds are doing a good job keeping him relatively comfortable most of the time.

He's having a reaction to the dressing and now has a bunch of tape blisters. They were able to remove some of the dressing to let the blisters air out, but have to leave the catheter covered to prevent infection, so he may get more blisters in the area where dressing remains. He's never had that kind of reaction to dressings before, so I'm not sure what's up with that. I hope it doesn't lead to an infection.

The pain medication was causing him to feel really itchy last night. They tried giving him Benadryl to offset it, but it didn't seem to help. They ended up giving him a prescription strength antihistamine, which did the trick. Except that it made him really sleepy, causing his oxygen level to decrease enough that they needed to put the nasal cannula back on. After we got all of that squared away around midnight, he slept better.

He started the day off with a bang today. A poke for labs at 5:00. A sponge bath at 6:00. Changing bedding and clothes at 6:30. Removing part of the dressing at 6:50. And three exams from three different departments before 8:00. He's snoozing hard right now. He's been such a good sport through all of this.

From what I've been told, he'll probably be moved into one of the oncology rooms today; we'll know more after rounds. He will be getting a dialysis treatment sometime this afternoon and is getting his menu upgraded to real food after dialysis. He's doing a great job taking the steps needed to get home, even though some of those steps are rather unpleasant.

I loved being home with Hannah, Ava and Max. It hurts my heart to be separated from everyone for so long. I really, really, really miss our old life. I miss our whole family all being in one spot, enjoying each other, teasing each other, playing with Ava and Max together, laughing, and well, let's get real, even fighting a bit (a bit??). I even miss being annoyed when Ben would pretend to pop Hannah's "personal space bubble" and try to claim it was okay because he wasn't actually touching her. And she would react with a good old fashioned freak out...exactly the kind of reaction a little brother is looking for. I especially miss starting my day off with Dave's cheerful smile and sunny disposition...he always gets us going on the right track. He makes it well known to each of us how much he loves us every single day...we're so very lucky that he's our main squeeze. I know that all of this will be back soon (even the popping of personal space bubbles), but I would love to fast forward to the next phase of adjusting to this new way of life at home. One step at a time though. Today is a day of rest, recovery, getting out of bed, dialysis, eating some food, and possibly packing up the moving van again (we always haul way more stuff here than is necessary!). We'll tackle tomorrow, tomorrow.

I guess that's about it from our side. We hope that everyone is getting the chance to enjoy the warm weather. Play outside for us!

Love,
Michelle

Sunday, June 22, 2008 9:57 AM CDT

Good morning!
Well, Ben had a very good night's sleep last night and is doing pretty well. They took his arterial line out this morning and may also be taking his epidural out today. He is getting pain meds through his IV now as the epidural wasn't working great yesterday.
He did four hours of dialysis yesterday, so that cleared up his labs as far as phosphorous, potassium, etc. Will do that again on Monday.
He will be getting out of bed today to sit in a chair and a commode (as measures have been taken to assure the latter!). Hopefully tomorrow he will check out of the Peds ICU and into the Peds oncology area.
Michelle and Hannah went home yesterday to reunite with the babies, so that is precious time. She will be coming back later today so I can go home and be on hand for the work week. Would have worked out better if he could have been out of PICU for tonight as parents cannot sleep in here, and being up all night isn't a great way for Michelle to start another week here. We will have to do something to get her a nap! I've been here the last two overnights and have discovered the joys of the 2:00 am to 4:00 am cafeteria meal service for the night shift. In fact I got down there at 4:03 Saturday AM and scored a free brat as she could not charge me for it after 4:00! Bonus! This morning I got down early and had a hamburger and soup. I think I owe my body some healthy food and a bit of sleep. It will get it sometime!
So overall Ben is doing very well. He's not anxious to push things and get out of bed but it must be done as a step toward home.
Thanks for checking, enjoy the beautiful day that we are seeing outside our window!
Dave and Ben

Friday, June 20, 2008 10:38 PM CDT

Saturday afternoon:
Ben had a pretty good night, we are working on coughing up the gunk that settles in your lungs when you have surgery. He had dialysis today, so now his labs are looking good. They are working on getting his incision pain under control but that's just tweaks here and there. He's doing well. Blood pressure has creeped up a bit but that is because he couldn't get his meds this morning because dialysis would have taken them right out. He got them about an hour ago. Michelle went home to finally spend some time with the babies, she will be back tomorrow afternoon. Grandma L and Hannah just left for home after I finished my second nap of the day. Boy's night again!
Love,
Dave

When you go to place a new journal entry on the CaringBridge website, you go to a screen called "author sign in." There are two sign in options, one for "new" CaringBridge web sites and the other for sites created prior to 2005. It reminds me of just how long we have been on this journey when I click my info into the pre-2005 sites. This has been our lives since 2000, which Ben's surgeon Dr. Thomalla reminded us of today. He mentioned that today's surgery was nearly eight years to the day of his first surgery. Eight years does not seem like much in some terms. When I think of how fast our children put eight years under their belt, or of myself being eight years younger it seems like the time has flown.
But when I reflect on the journey of Ben's health, it seems like 100 years. Many people comment that they don't know how we do this, how we handle all that has been put in front of us. The answer is NOT that we are extraordinary people with superhuman abilities that allow us to fight this fight. The answer is that we do this because well, what other choice do we have? Ben doesn't have a choice, so we don't have a choice either. You deal with the obstacle in front of you, then you deal with the next one. You can't do it in any different order, you can't worry about the fifth obstacle down the line because you really don't know what that is. Even now, with a bigger than we could have imagined tumor out of his body we don't know what the next obstacle really is. It could be dialysis, but it could also turn out to be a histology report on that tumor that isn't what we hoped it to be. We can only deal with what comes up along the way.
I am so proud of our family, even before the developments of the last week. No one has ever questioned why these problems are given to us, we just get through them together. You meet a girl, you like a girl, you love a girl. So you marry that girl when she answers yes. Then you start a family. No one ever thinks that their perfect picture of marriage and family might someday include a challenge like Ben's health, but what can you do? Michelle is a tireless advocate for her "little" boy. I wonder daily at how fortunate I am to be the one that she loves.
Hannah is a wonderful big sister who has never complained about all the times her parents couldn't be there for her because of the time we have spent at the hospital with Ben.
Our families and our friends are unspeakably wonderful and supportive. We wonder how we can do this, but we can do this because of the support and sacrifices of our family and friends. We can never "repay" all that you have given us in terms of your time, your thoughts, your prayers, your concern, and your generosity.
I struggle with all that has been given to us, not knowing how to accept such generosity. I struggle because "thank you" is only two words, when it seems that there should be something more. I struggle because I can't even thank everyone. The only thing we can really do is to be there for someone else when their time of need arises and help in any way we can. It's just that it doesn't seem like enough!
So here's what I want to say - THANK YOU! Just know that when we say that it means more than just two words!!!
By the way, it's midnight now and another day has passed. Ben is awake and watching TV, complaining of a dry mouth, and complaining of some pain. But he is doing very well, we are moving rapidly toward recovery compared to some of the other surgeries. So far so good, we wait and see.
Love,
Dave

Friday, June 20, 2008 7:03 PM CDT

One last update before I call it a day...

Ben's doing pretty good. His blood pressure has been high, as has his blood sugar and potassium, but they seem to be coming down with medications now. They are trying to avoid giving him a dialysis treatment tonight, but are prepared to do it if things get worse. He's opened his eyes briefly a few times, but since he has no kidneys to break down and filter out the anesthesia meds, it's taking him a lot longer to wake up than it normally should. The pain is being managed well with medication, so I'm glad he's comfortable. One of the times that he woke up, he even signaled that he wanted to play a video game. :)

The next couple of days will be relatively quiet. He'll get dialysis tomorrow (unless it's needed tonight) and hang out in the PICU to recover. As soon as he's recovered enough here, he'll be moved over to one of the oncology rooms for a few days. We should be getting the pathology report next week sometime, and are anxious to hear those results. Radiation will start as soon as he's recovered from surgery. Since he's exhausted all of the chemotherapy drugs that are known to help with Wilm's tumors, we won't likely do more of that.

Obviously he'll be needing a transplant, but we haven't been talking about that in detail quite yet since we're just trying to get over these hurdles first. From what we know, he'll need to be cancer free for at least a year (maybe longer) before he can qualify. Sounds like Madison has an excellent transplant team, which is great because it's only about 2 hours away from home. And my sister and her husband live there too, so we'd have family nearby.

Hannah's been a trooper. I think boredom is setting in a little, but she's determined to stay. She and I will be camping out at the Ronald McDonald House tonight. Dave's napping over there right now in preparation for a very long night with Ben, since you're not supposed to sleep in the PICU rooms. If Ben has a really good night tonight and everything looks stable in the morning, I may steal away for a day or two and go home tomorrow.

Ben will continue to have hemodialysis until his new peritoneal dialysis catheter is ready to be used, which will be about 3 weeks from now. We will then be trained on that (gulp) and he will have more freedom. We'll also be learning more about his new diet restrictions over the next couple of weeks and be making some major changes in our menus.

Before surgery today, Ben was talking football (of course) with the medical team and disclosed, much to their dismay, that he was a Seattle Seahawks fan. They told him that they were going to put something in his IV that turned him into a Packers fan. :)

That's all I have for now. Hoping for an uneventful night with steady improvement. I'll be back tomorrow - sleep tight!

Love,
Michelle

Friday, June 20, 2008 1:43 PM CDT

BIG sigh of relief...

He's all done!! They had a tough time getting the tumor and kidney out, so it took about four hours. The surgeon ended up calling in another surgeon for extra help. It was very large, maybe the size of a cantaloupe. He lost more blood than the doctor was anticipating. The catheter was placed and seems to be working well. He'll be able to use it in about 3 weeks. The doctor won't speculate how long he'll be here recovering. We haven't seen him yet, but hopefully we'll be able to get in there soon. They brought him right to the PICU. I'm so relieved that it's over - thank you for your thoughts and prayers all morning!! I'll be back with more later, but just wanted to get this out as quickly as I could.

Love to you all,
Michelle

Friday, June 20, 2008 10:43 AM CDT

In progress update:
The OR nurse just called and said he is doing fine, they will probably be in surgery until noon. He had called previously and said they had found a good spot for the dialysis catheter. Don't know if the kidney is out yet or not, but he assured us Ben was doing fine so far.
We will let you know more as we do, thanks for checking on him.
Sincerely,
Dave

PS-I really liked reading Michelle's last journal entry, I hate to write over it!

Friday, June 20, 2008 8:04 AM CDT

Good morning,

Ben just left for surgery, and since I couldn't update yesterday, I thought I'd use this anxious waiting time to update now.

Yesterday was another busy day. He had dialysis again, which went very well. It was only two hours long this time, so he played video games pretty much the whole time. I played with him and he kept chasing my ATV around the track and crashing into me on purpose. Stinker! Our good friend, Mary, stopped in during his treatment and hung out with us for a few hours afterwards. It was nice to see her again. She can hold her own in conversation revolving around football, which is always a good thing since my knowledge base is limited, at best.

After his treatment, he got a surprise visit from his buddy Colton. When he first saw him standing at the door, his face lit right up and he just looked at him as if he were a mirage. It was Hospital Bingo day in group time, so he was thrilled that he had a friend go and play with him. They were very silly and giddy. When we got back to the room, we were both incredibly tired and fell asleep - hard! While we were snoozing, Dave and Hannah arrived. Hannah and I then checked into the Ronald McDonald House, ate a quick dinner, then headed back to the hospital for some family time. We hung out and played a couple of games before Hannah and I had to go back to the Ronald McDonald House to get some sleep. It sounds like Dave and Ben had a good time last night. He wasn't able to eat past midnight, so he was calling for Corn Flakes at 11:45 p.m.

This morning has been a whirlwind of activity. He did really well during all of the pre-op stuff, which can be a little overwhelming with so many different faces and questions. Hannah is able to be with us throughout the whole process, which has been good for both she and Ben.

Just got word from the waiting room volunteer that surgery has begun. Here we go. Please pray hard.

I will do my best to post an update as quickly as I can after surgery. Thanks for the encouragement...Ben's enjoying reading the messages being left.

Love,
Michelle

Wednesday, June 18, 2008 12:32 AM CDT

Good Afternoon!

I wasn't able to get an update posted yesterday. I tried to start, but there were so many interruptions, so I finally just gave up. It's very distracting here, so my updates may seem a little scattered at times and probably don't always make a lot of sense. I'm sure I'll be repeating myself too.

Yesterday he had the bone scan done and I'm thrilled to say that there is no evidence of disease there. Whew!! So it appears at this time, that the cancer is isolated to the kidney and renal vein. Hopefully taking this kidney out of there will get rid of the cancer altogether, but that's not necessariy the answer, as there could still be lingering cancer cells elsewhere that just haven't begun growing yet. Only time will tell.

Once the kidney is removed, we think he will need to be cancer free for at least a full year before he can be considered eligible for a transplant. We're told to anticipate approximately two years of being on dialysis.

We'll know for sure what type of dialysis he can be on after the surgery on Friday. He's scheduled to begin surgery at 7:30 a.m. If there isn't too much scar tissue, the surgeon will be able to place a new catheter for peritoneal dialysis (which is the type that we can administer at home) in his abdomen. We'll keep the current catheter in his right internal jugular vein that's being used for hemodialysis, until the other catheter has healed and is functioning well (about a month). Looks like we'll probably be here for a week or so after surgery. When we get home, until we can begin giving him his dialysis treatments, we'll be going back and forth to Marshfield three times a week for treatments. Those treatments are only about four hours long. This isn't exactly what we had planned out for summer adventure, so we'll have to try to find little, fun things to do to spice up our clinic and hospital visits. Time to get creative!

Oh my, this is getting lengthy. I'm actually sitting next to Ben right now while he gets his dialysis treatment (he's sound asleep - it makes him really tired), so I have plenty of uninterrupted time finally do this. I guess a lot has happened since Monday! Normally he would have another treatment on Friday, but since he's having surgery then, they will give him another, but shorter, treatment tomorrow, and again on Saturday. I'm not sure if I wrote this in the last update, but he will have treatments every Monday, Wednesday and Friday while he's doing hemodialysis.

Yesterday my mom (God bless her!!) brought Ava, Max and two of Ben's buddies, Jacob and Colton, to come for a visit. She is such a good sport - thank you, Mom!! She and my dad have been amazing with the babies. And Hannah has been like a second mommy to them. We're are so very lucky to have all of the help that we have. It's terribly hard to let go of their daily care, but it's been made easier on me knowing they are in such good hands.

Ben's morale is pretty low. He's sad most of the day. The things that have cheered him up the quickest have been phone calls, guestbook entries, mail and visitors. I think distraction is the best for him. The more down time we have, the more down he gets. It's awful not being able to cheer him up as easily as I could when he was little. There's just so much for him to process right now, so hopefully time will give him a more positive outlook.

Hannah seems to be doing okay. She really misses our house being whole. She wants to be here on Friday, so we will have her here with us. She had a softball game last night and her team won the game. Dave, Ava, Max and my parents were able to go and watch. I'm really proud of her.

Ava and Max are doing wonderfully. It sounds like they are taking it easy on Grandma and Grandpa...as much as four plus month old twins can anyway. :) I loved spending time with them yesterday. They are great therapy.

As always, thank you to everyone for all of the help. So often I hear, "I don't know how you guys do it". We are not doing it alone - you are doing it with us. That's the only way we could get through this. So thank you!!

Ben's treatment is done now, so I'm signing off. I will try to be back tomorrow - maybe if he falls asleep during his treatment again. Until then, take good care.

Love,
Michelle

Monday, June 16, 2008 9:23 PM CDT

Another day has passed, and wow, it flew by. Ben and I have had a busy schedule today. He woke up, played video games (he got the day off to a good start!), met with the surgeon, had a CT scan, met with the Nephrologist, had four hours of dialysis, met with the Child Psychologist, met with the Oncologist, had an echocardiogram, met with the surgeon again, had a surprise visit from Grandma Lansing, met with the Oncologist again, and then had Dave, Hannah, Ava, Max and friends Erin and Josh visit. It was a great way to end the day! It's awful saying goodbye to everyone.

He was feeling really down in the dumps most of the day. He's very tired most of the time, bored, frustrated with being here (especially because summer break just
barely started), scared, and just plain mad at cancer and everything it's doing to his body. He is enjoying hearing from people, whether it be through messages in his guestbook, email messages, phone calls, or visits. The
distraction is so good for him. He was clamped pretty tight and didn't want to talk about what's going on a whole lot. We can understand that so we're trying to respect that, and watch for his cues for when he's ready. It's so hard watching him go through all of this.

The big decision that was made today was that we are going to go ahead and get rid of that kidney once and for all. There was some debate on whether or not the kidney had enough viable tissue to warrant trying to remove the tumor. But the tumor is so large and is located right in the middle of the kidney, as well as a second tumor is growing into the renal vein, so there is nothing the surgeon can do without leaving tumor behind. That, among other factors, pretty much narrowed down our options
to one. So surgery is scheduled for Friday sometime. I have no idea what's going on in Ben's head. I could see him holding back the tears when he heard, and then he kind of shut everything out. After our visitors tonight, his spirits lifted tremendously.


It looks like he is going to be able to have a type of dialysis (peritineal dialysis - ignore my spelling) that will allow him to get his treatments at home. During surgery, they will put in a different catheter - this time in his abdomen. Once everything has healed in about 2-3 weeks and we've been taught how to administer
the treatment, he'll be able to receive treatments at home while he sleeps. The treatments take about 10-11 hours, so if we do it during the night, he'll still be able to go to school and do things during the day. If we
were to continue with his current dialysis (hemodialysis), he'd have to receive four hour treatments in a hospital setting, three times a week. I'm not thrilled with the idea of either choice, but doing it at home will give him more of an opportunity to just be a kid.

We're finding out more about his new diet restrictions, but have a lot of learning to do on that still. I wish that we had a dietary department at home sending precalculated and premeasured trays to his room - it would make it a lot easier! :) Thankfully, there are many things that he can have, so it's not going to be too restricting. More restricting in the sense of watching
quantity and keeping track.

I'm not sure what tomorrow will bring yet, but his next dialysis treatment is scheduled for Wednesday. He's had high blood pressure since he arrived, so that's another thing they've been working to get under control.
He's on some medication for it and hopefully we'll see some improvement there soon. He's pretty wiped out, so I'm sure he'll spend most of the day sleeping all of this off.

I'll try to be back with another update tomorrow. Thanks for keeping tabs on Ben!

Love,
Michelle

Sunday, June 15, 2008 1:42 PM CDT

Hello everyone,

First of all, a note from Ben:

Thanks for the notes that you've sent me. It makes me feel good.
Love,
Ben

Sorry I wasn't able to update yesterday - the day kind of got away from us. Ben has been moved from PICU to one of the oncology rooms on the floor. He's now in room 361. He had another dialysis treatment yesterday and was able to complete it this time, so we were happy about that. They've decided to hold off on a treatment today and do another one tomorrow. Today is a day to just hang out and get some more rest. Tomorrow the three specialists will be having a meeting together and trying to work out some kind of a plan. What it boils down to is that we have three potential options and hopefully by tomorrow we will all be able to agree on which approach to take. They aren't the most fabulous options, but they are options and we like options! I won't get into everything until we have a better idea of what direction we're going in.

The CT scan from yesterday seems to indicate that the cancer has not spread beyond the kidney, however they aren't pleased with the clarity of the results and want to do either a repeat, or an MRI. That will likely happen tomorrow.

Ben's now on a restricted renal diet. We're going to have to make some big changes with what he can and can't eat when we go home. I'm not sure how long that will be for, but probably quite some time. Tomorrow we'll also be talking about potentially doing some dialysis at home, but I won't get into all of that either until we know more.

Ben's doing pretty good. We were able to get him to talk a bit yesterday and he's slowly starting to open up and ask questions. He's scared, sad and mad, but he's been very cooperative and friendly to everyone - we're really proud of how he's handling things.

I'm not sure how long we are going to be here. We'll know much more tomorrow after meeting with the doctors, although I'm not even sure we'll have any kind of treatment plan by then. We're not in a position where we can refer to prior studies since the doctors are not aware of any other cases similar to this with this many recurrences.

I guess that's about it for now. Today we are just hanging out and celebrating Father's Day. My parents are bringing the babies and Hannah this afternoon to celebrate with us. We miss them all very, very much. I look forward to the day when we are all under the same roof again. It's also my dad's birthday tomorrow - Happy Birhday, Dad!!

Dave will be going home tomorrow and hopefully be able to work the rest of the week. Ben and I will hang out here, and hopefully I'll be able to get my hands on the babies and Hannah during the week somehow. I absolutely despise not being able to be home taking care of my three other kiddos.

Thanks to EVERYONE for all of your support. There's really no way to express just exactly how grateful we are, but please know that we appreciate you all so very much.

Lots of love,
Michelle

Friday, June 13, 2008 6:55 PM CDT

I wish that I was updating with fabulous news on how wonderful Ben is doing and how fantastic and blissful life is in the Lansing home right now. Instead, I'm writing to ask for you all to pray like mad.

We just found out this afternoon that Ben's cancer has returned and he is now in renal failure. Everything is happening very quickly and a lot is happening, so this will probably be vague. And, quite frankly, I'm having a difficult time absorbing and processing all of the information being thrown our way. What we know right now is that they are discussing how they want to approach the tumor...whether they do more chemotherapy to shrink it down before they remove it, or if they are just going to get it out right away. He has already had a catheter placed so that he can receive dialysis, and has had his first dialysis treatment. They weren't able to complete the first treatment (not sure I completely understand why), so we'll try again tomorrow. He's getting a CT scan done tonight, so we're anxious to learn more with that.

Ben's trying to be very brave and stoic. He's very scared, and so are we. Hannah's needing some comforting and I wish that I could hug her right now. The babies are safe and snuggly with family and I already miss them terribly. This is going to be an extremely tough challenge, but we know that we have an incredible support system in place with all of our wonderful family and friends out there. Thank you for making that known long before we got to today. We love you all!!

I'll update when I can. For now, please just pray your hearts out that he's going to be okay.

Love,
Michelle

Saturday, April 5, 2008 6:34 PM CDT

Hello! It's been awhile since I've posted anything again, but the days seem to be melting away lately! It's amazing how two tiny people can absorb so much time (and energy!). But they are tons of fun and well worth every last minute of lost sleep. And that's a lot of minutes. A LOT.

Dave took Ben in for his four month check up and everything continues to look great. He gets another four month break before he returns to the clinic. It's a relief to have that day over with. He's doing really well, and we’re so grateful to have that part of his life more in the background than in the forefront. There were times when we wondered if our life would ever return to a more normal state, but here we are! Of course we will forever be touched by this disease and there will always be some underlying fear of its return, but it’s incredibly refreshing when it doesn’t dictate our days and consume our every thought.

Ben and Hannah are thoroughly enjoying having Max and Ava in the house. They are fantastic with them and a huge help for us. Max looks like a carbon copy of Ben when he was a baby - it's pretty crazy looking at Ben's old baby books! Ava resembles both Hannah and Ben.

Ben is going to be participating in a St. Baldrick's Day event to support Childhood Cancer Research on April 27th in Rothschild at the Stoney Creek Inn. For those of you who aren't familiar with it, feel free to check out the website at www.stbaldricks.org. He will shave his head, and this year will be part of a team called "Balding Men of Fire", which is a team that participated last year in his honor. Because of all of the changes in our household this year, I chose not to be part of the planning committee. After five events, I'm looking forward to simply attending an event and taking it all in from a spectator's point of view.

Enjoy the change of seasons - Spring is here!!

Love,
Michelle

Tuesday, January 29, 2008 0:09 AM CST

Hello!

We are all under one roof again, and what a great feeling that is. We are so blessed and grateful that we are here and not having to spend time in the NICU with the babies. Ava and Max are both doing beautifully. Other than having a touch of jaundice, they seem to be thriving.

If you'd like to see their hospital mug shots, you're welcome to go to http://www.ministryhealth.org/display/router.aspx?DocID=24567.

I did post some photos of the newest little Lansings on here as well.

I better try to get some sleep before one or both of them wakes up ready to eat! Thanks for checking in on us and for all of the nice messages.

Love,
Michelle

Thursday, January 24, 2008 6:06 PM CST

Hi everyone!
Well, Ben's new twin brother and sister have arrived!!!
Ava Victoria Lansing arrived at 12:05 am on 1/24/08 weighing 5 lbs 8 oz and measuring 18 1/2" long! She arrived in the traditional style with some excellent pushing by mom.
Maxwell James Lansing arrived later, coming in via C-section at 1:49 am after pushing failed to get him to come down and out...! He was 7 lbs 2 oz and measured 20 3/4" long.
Both babies are doing well, not even a stay in the neo-natal nursery. Mom is doing as good as you can expect for all that she had to go through!
We will post pics soon!
Dave

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