A little catch-up and update on our family

It's been over 17 months since my last blog post.  So much has gone on in our family in that time frame, and I know a lot of you want to know what is going on and how we are doing, especially now.  So I decided to do a little quick catch-up and then try my best to keep you all better updated on our progress through this journey we are on.

Let's start with Nathan.
Well, since July last year, Nathan started crawling at 8months, walking a week before his 1st birthday and now running, jumping, climbing, and chattering up a storm at 2 years old.  We've referred to Nathan as our little dude since day 1 and that he absolutely is... a Little Dude!  Just 33" tall, about 23lbs, and a spitting image of his daddy!  Every day he amazes us and continues to bless our lives with him here, our precious little miracle!  Since I've changed computers, I don't have all of his pics on here, but here are a few to give you an idea on his fun, free-spirited, goofy, and loving little personality.

CLICK HERE TO VIEW A FLICKR PHOTOSTREAM

So what do you think?  Nate sure is the little dude, right?!  I just love how much he looks like his daddy, but taking on his own personality, being his own person.  We tell him constantly how much we love him.  He's such a loving boy, and gives the sweetest (and sometimes silly) kisses.  Every night when he's ready to lay down to bed, he gives daddy nite-nite kisses.

Roxanne
Well, I've really been enjoying my time with my boys.  Having lost my job after maternity leave has been difficult financially, but taking on my new job as a Work-at-home-Mom has not only been amazing, so much less stress, makes me happier, but has such amazing rewards to be able to teach Nathan things and watch him grown, learn and become a little dude.  I cannot believe my baby is 2 years old!

My Snuggli Bebe boutique has grown substantially over the past few months.  I've been using my Marketing and Business education and putting that to work networking with other WAHMs and bloggers. I just started a wordpress blog for Snuggli Bebe and eventually, as I learn more about WP, I will open a dot com store linked there.  Some of my products have began to take presence in local parenting stores and boutiques across the country and in Canada!

Did you know I do digital design, too?  I started rDesignStudio in Jan 2010, and I've really enjoyed doing birthday invites, thank yous, baby shower, bridal shower, and weddings.  I've worked with 4 brides and am currently working with 2 right now.  I also do business marketing like biz cards, promotional material, etc...  You can see my work at www.rdesignstudio.etsy.com in both my current listings as well as sold listings.  Here are a couple clients I've done recently...

CLICK HERE TO THE FLICKR PORTFOLIO PHOTOSTREAM


Tom.
I know you've all been wanting to know how Tom has been, what's all been going on, and what's to come.  Tom is a fighter, a loving father and husband.  Last summer he enjoyed disc golfing with his buds, hanging out for football games, including the annual super bowl party at Greg's, going to a few games, snow blowing last winter, more disc golf this past spring, all the while continuing to go to his regular check-ups for his skin cancer.

This past spring, in May, a small hard lump appeared just under the surface of his skin on his right hip side.  He had it check, excised, and it came back full of melanoma.  This was done at the dermatologist office.  He met with his surgeon at Theda and he said he wouldn't operate until he saw a CT scan because this same hard lump had shown up in the same area last summer.  Well, the CT scan did how a lymph node light up deep in his groin area where he had previous surgeries in 2005.  Outpatient surgery was June 9th to remove more skin from the infected area as well as dissect the lymph node that had shown up.  As a result from that surgery, the entire lymph node was unable to be removed.  Tom's oncologist here referred us to a melanoma oncology specialist in Madison at the UW Health systems.

The months of June and July we spent going back and forth from Neenah to Madison, with Tom's surgery on August 20th.  We met with the Oncology specialist who all he does is specialize in treating Melanoma and working on clinical trials and studies.  We also met with his Oncology Surgical specialist who walked us through the CT and PET scans of Tom showing us and explaining the difficult locations of these lymph nodes.  oh, three new lymph nodes had shown up after the surgery in June, by the way.  So, together, the Drs had a plan and two of the top surgeons worked on Tom on Aug 20th.  Surgery lasted about 4 hours.  They wanted to be sure and get absolutely everything they possibly could because they knew this would be the last surgery Tom can ever have in this right groin area.  The difficulty of the surgery was grand because of the location of the lymph nodes sitting right along the major artery and nerve that go down your leg, underneath 2003 hernia surgery scars, as well as all of the other previous surgery scars since 2005 in that same area.  Post-op, Dr explained that once they got to the site, the lymph nodes were much larger than they had expected based on the CT scans.  They melted down and removed everything they possibly could, but the likelihood that microscopic cells would be left behind was high.  It is just physically and scientifically impossible to detect microscopic cells.

Pics from the White House lawn:

Unfortunately, there were microscopic cells that had remained and a CT scan 6 weeks after surgery showed they had grown enough to appear the scan.  First of all, Tom had elected to take part in a clinical study at UW-Madison and the randomizer had chosen him for Arm1 (which meant surgery first, then 3 1-wk in-patient chemotherapy treatments).  Arm2 would have been 1-wk chemotherapy treatment, surgery, then the last 2-wks chemo.  However, since the size of the lymph nodes was so much larger than scans had depicted pre-surgery, the Drs, along with a radiation oncologist specialist for melanoma all agreed the best best step to advise us would be for treatment focused on that groin area to reduce/minimize the growth of those lymph nodes.  This meant Tom would no longer be able to be a patient part of the study.

Schwandt Family Sept 2010

Before starting radiation, we were able to use my parent's timeshare and go to the only resort within driving distance for a week of family time, just the 3 of us.  We went to Spirit Lake, Iowa.  To say the least, we had fun together for the first part of the week, but the resort and surrounding tourist area was just boring as could be.  It was "off-season" and nothing was open, there was nothing to do and we were stuck in a little studio condo.  So we checked out early and took off headed to Minneapolis to visit my sisters!  Wow, we had a WAY better and so much more fun time when we got there!  There are pictures in the above flickr photostream of the Apple farm we went to one day with my sister Suzie.  That was a lot of fun.  Then one day we spent at the Mall of America with my sister Sasha.  It was great to get away from home and spend some good quality family time together!

Shortly after returning home, Tom started 6 weeks of intense radiation the beginning of October, and concluded 6 weeks later, just before Thanksgiving.  We were aware of all of the possible side effects from radiation including swelling, nausea, reduced appetite, fatigue, and sterilization.  We already have our miracle baby, so we aren't concerned about trying for another baby because what is most important right now is Tom's health.  Let me tell you, Tom did such a wonderful job going to radiation everyday, first patient of the day at 8am Monday thru Friday for 6 full weeks!  Nathan and I joined him a few times and met the nursing staff, whom Nathan graciously showed off for, and even another patient who followed Tom's schedule gave Nathan a little Christmas pound puppy.  How sweet!

It's been tough trying to figure out what to make for lunch and dinner.  Since radiation, Tom's appetite has been very up and down; mostly down.  After radiation, Tom had to have another CT scan and blood work down to find out where we stood now with the cancer in his body.  Unfortunately, the radiation did nothing.  It should have at least diminished it or inhibited growth, but the results of the CT scan actually showed more lymph nodes infected, larger in the groin area and growing up to just under his lungs.  It has not surpassed the lymph system, is not in any organs or his blood stream.  However, at this point, the cancer is no longer treatable by surgery, thus deeming it terminal.  Average time frame we've been told is one year.  That's not to say there aren't exceptions, and we are hoping and praying that Tom is above the exception.  There is no cure for cancer, and we know this cancer will eventually take Tom's life, but not before we fight like hell!

The next step is to start a chemo pill, called Temodar, that he can take at home.  We wanted a second opinion and to touch base with his oncologist in Madison, so we saw him Dec 17th.  He agreed the next step would be Temodar.  There are other intravenous chemotherapies available (administered in Eau Claire or Milwaukee), but before those are administered, a patient needs to have tried the Temodar first because they have seen good results from this drug.

Next came Christmas and we sure had fun this year!

Nathan had lots of practice ripping off wrapping paper at his birthday, so he was no stranger to ripping it off Christmas gifts!  We had bought a Santa costume to have Tom's dad dress up as Santa and bring Nathan some presents on Christmas eve.  It was SO much fun!  Nathan liked Santa because he let him hold and ring his jingle bells.  He went to show Santa some presents he had opened, but he didn't really want to sit on Santa's lap so much.  It was so cute and a lot of fun!  Here are a couple pictures....

Back to Tom's update.
Just yesterday, Wednesday Dec 29th, Tom had a port implanted.  Since he has to have so many blood draws, IVs for scans, etc... and his veins have become so small, the nurses have a very difficult time getting in them.  Tom's been poked and prodded and there's only so much any one person can take or should have to take.  Since we know there are plenty more times ahead of us that he will need blood draws, scans, and possibly intravenous chemotherapy, the doctors agreed to have a port implanted.  What it's called is a Power Port by BARD.  Click that link to see what it looks like.  The purple port is implanted just under Tom's skin in his upper left chest by his collar bone.  The catheter goes into the artery there at delivers blood to the heart.  All Tom will have to deal with is a teeny tiny poke thru a little skin into the port.  He's healing yet, and we can't take the bandage off to change it until Saturday, but all it looks like is a bump.  It's nice there isn't anything protruding hanging off his skin to deal with.

What's next?
So what's next is Tom started Temodar last night.  I've written up a drug chart so we can keep track every day with what meds he needs, when he took them and make sure we keep on top of everything.  The Temodar works like this... Tom takes 300mg (3 pills) every day for 5 days of a 28 day cycle.  After 2 cycles, he will have a CT scan which will tell us what needs to be done next.  If it shows improvement in diminishing the cancer and preventing growth, he will continue on Temodar.  The drug is quite tolerable, unlike the chemo Tom had in-patient in 2005.  Still, though, his appetite is very low and constantly fatigued due to the side effects from pain meds and such.  I've learned some tricks from the nurses, but still I wish the doctors would give better advice on what foods to eat, to avoid, what helps, etc....  It's very difficult blindly figuring this out.  Sure there are resources online, but I almost feel like I need to go to pharmacy school and nutrition school.  Anyhow, if the CT scan does not show improvement from 2 cycles of Temodar, then we will explore options for intravenous chemotherapy.

Fun news!
We are very lucky to be able to be taking another family vacation between Tom's cycles of Temodar. Tom really wanted to get the heck outta dodge and this cold weather, go somewhere warm and fun for Nathan for us to make memories together.  Thanks again to my parents for their timeshare points, and Thanks to my flight miles, we are taking a trip at the end of January to Florida!  Kissimmee/Orlando area! Yippeee!  We will be staying at the Holiday Inn Club Vacations Orange Lake Resort.    This place is 4.5 square miles large with like 7 pools, a lazy river, a man-made beach/board walk, and a whole little town all within itself!  We are SO excited for this amazing opportunity to take the most cheapest vacation EVER!  My sister Sasha will be joining us for part of the vacation, so it will be nice to have her there that she can stay with Nathan while Tom and I go have a nice dinner just the two of us, or go for a little walk just the two of us.  Sasha also plays cribbage, so Tom will have her to play with, cuz I just don't get that game at all! lol:)  Thanks to our family for being so gracious and giving, we will be able to take Nathan to the Magic Kingdom one day.  I know Tom won't be able to walk the park, even though it is the smallest park of Disney, I am fully prepared to rent him a wheelchair so he doesn't have to miss out one moment of watching Nathan's smiling face.  Tom has never been to the state of Florida, so he has no clue what's in store for him, and I know he is going to love it.  The crowd, maybe not so much, but just the magic of Disney and seeing Nathan enjoying his favorite characters will be a gift in itself.  Can you tell I am excited!

Thanks.
Thank you all for your patience, kind words, support and love.  I know this post was lengthy, with lots to update, and I know I'm forgetting something, but I think you get the gist of what The Schwandt's have been up to the past 17 months.

I do plan on coming back to post updates on us and Tom's situation as time permits.  I am a busy mom and wife these days, so my time blogging and working my hobbies/business all happens during nap time or after bedtime.

We greatly appreciate all of your prayers, for adding us to prayer chains at your churches, and passing along to other friends to include us in their prayers.  We know our good Lord works in mysterious ways and we have proof of the miracles He performs, so we are praying for a miracle for Tom.  Please pray for his well-being, tolerance, and quality of life.

Much Love,
Roxanne