Quinn's Surgery

Quinn had his cleft lip repaired yesterday and he did great! My heart broke seeing him in pain post-op, but we were able to get the pain under control and from then on he continued to improve. By evening he was feeding (tentatively) with a regular bottle. He is a tough little guy. As you can see (picture to come) he is pretty swollen but already the repair looks great. I am so relieved that he still looks like our old Quinn! He will be getting his stitches out on Monday and until then he has to wear splints on his arms (they call them No, No's) which is hard to see but he is being a pretty good sport about it. Thanks to everyone for all of your prayers!

Cora stayed at home. We missed her terribly (we had to stay at the hospital overnight) but I am sure she enjoyed her alone time with grandma and grandpa!

Happy Easter

Happy Easter to all who celebrate it! We all got dressed up and went to church. As you can imagine, Cora and Quinn received lots of attention. Who could resist them in their Sunday best? Certainly not us!



Opening Day!

Quinn and Cora had fun their first Opening Day - and the Tiger's managed to win 15-1! I think their shirts were good luck;)

Overdue Update

As usual, this update is overdue. I am happy to report that I have completed the course of chemo/radiation. The last couple of weeks and week following were rough and I had to be hospitalized for infection and low blood counts (Hgb 6.7 and WBCs 1.8 for those who care) but over the last week I have started to turn a corner. The biggest problem is my fatigue and the many sores in my mouth which are going to take a long time to heal. In several weeks I will have another PET scan and we will go from there. Please pray that all of the cancer is gone and my treatment will end! I can't wait to get back to normal activities. I want to thank everyone who has been so generous with their time driving me to treatments and helping watch the babies - THANK YOU!

Cora and Quinn continue to do great. Quinn (aka Porkchop) is now over 12 lbs! Cora (aka Lambchop) is a more petite 11 lbs but quite a spitfire. No one will boss her around! Each day they continue to amaze us with their development. I can't believe how fast they have grown.

Quinn's surgery is scheduled for April 21. He should only have to spend one night in the hospital. Tim and I are very nervous for him but I am sure he will do great. Talking to other parents who have been through the same thing, it will be much harder on us than it will be on him. Thankfully, he won't remember this. Selfishly, we are going to miss his cleft. We have become quite attached to his triangle lip!

Hope all is well with you and Happy Easter to those who celebrate it!

Surgery Postponed and Tumor RESPONDING!!!

Well, we had a suprising turn of events. Friday at about 3:30 pm we were given word that my surgery was going to be postponed. We had no idea that this was a possibility so it was quite a shock. My apologizies to everyone that requested time off of work to help us out this week.

The decision was made for several reasons. First, I had another MRI that morning which showed that the tumor has decreased in size by about 60-65%! Judging from the reactions of my radiation oncologists I gather this is much more than they expected. Since this treatment is working, why fix something that is not broken? Additionally, there were some complications to performing a completely effective implant. Due to scar tissue and growth of the tumor along my tonsil, I have limited ability to open my mouth so it would be difficult to accurately place some of the catheters. Also, the tumor is pressing against my carotid artery (which is a pretty important structure:) and they would like it to regress a little more so that it does not get damaged from the intense radiation. (Have no fear, we have already discussed a surgical option to combat this if it does not completely regress, but I am really hopeful we will avoid any further surgery.) So all in all, this change in plans is a good thing.

Below are several new pictures of kiddos. Don't they just make you smile?

God Bless and please keep the good thoughts and prayers coming,

Kathryn



Well, we've got some good news...and some bad news

Hi Everyone

Well, this update is long overdue, but as you will see (or already know) we have a lot on our plates right now. And as before, this ended up being a lot longer than I expected so settle in and grab a snack (or just skim:)

First and foremost, on January 8th we doubled the size of our family! We are proud to introduce Cora Elizabeth Schneider (5 lbs 1 oz) and Quinn Jameson Schneider (5 lbs 0 oz). Quinn has a cleft lip that will be surgically repaired at 3 months. Otherwise, they are both healthy and only spent several hours in the NICU. We were all able to come home from the hospital at the same time:) We are so blessed to have such healthy children (especially considering the circumstances as you will see below). They are absolutely perfect – we couldn’t be happier.



Just click the images to see them larger.



As you can see, they are both getting big. Ironically, despite his lip, Quinn is our big eater!



Now, for the not-so-fun news. One week after delivery I had a PET scan. Unfortunately the cancer had come back “with a vengeance” – there was a large area of recurrence on the back of my tongue with involvement in one of my lymph nodes. (At least this explains the significant amount of pain I was in the last few months of the pregnancy). The following several weeks were filled with consults, tests, biopsies, scans, and more consults and scans. The tumor is too large to resect and maintain functionality, so we are attacking with aggressive chemo and radiation.

I started treatment at U of M immediately, and already am in my fifth week of chemo (carboplatin and Taxol) every Monday with external beam radiation Monday thru Friday. Dr. Eisbruch, my radiation oncologist at U of M, is world-renowned for his work with IMRT. IMRT stands for intensity modulated radiation therapy, which focuses the stronger beams on the tumor and attempts to spare some of the salivary glands. Dry mouth is one of the long-term side effects of head and neck radiation and it is wonderful if you can get any of that back.

Next week I will be inpatient at Beaumont Hospital in Royal Oak Monday thru Friday. On Monday I will have a 3 hour surgery where Dr. Chen will insert catheters into the bulk of the tumor. I will then get radiation treatments through the catheters twice daily. I am bummed that I will have to be trached again, but this treatment should really attack the bulk of the tumor. It is already responding to the lower-dosed external beam, so we are really hopeful that this will zap it.

Overall, I am tolerating my treatments pretty well. I am tired of course, and I have had some problems keeping food down with the chemo but we keep fine-tuning the meds and mostly have that under control. The radiation is more bothersome (but is also what is really blasting this thing, so so be it). I have lost all sense of taste (or it tastes bad), my saliva is very viscous (on the way to drying up completely) and the mucositis (sores in my mouth) are increasing daily. As a result, I was having great difficulty eating so I got a PEG tube several weeks ago. This tube allows me to put food directly into my stomach, so I now have more energy and have stopped losing weight. I am starting to get some radiation dermatitis so the lower half of my face and neck are quite red. I swear it is not a suntan! I am also losing some hair (but not all) so I got it cut (see picture below). Luckily bobs are still in style:)



The hardest thing about this is spending so much time away from Cora and Quinn. All of this would not be possible if not for my amazing family and friends. My parents and in-laws split the week and someone is at our house all of the time. In addition, my brothers Ryan and Patrick stop by several times each week and dove right in to feeding and changing diapers. I also want to thank everyone who has taken sitting and driving shifts – you have all been so generous with your time. I wish this were not happening, but this experience has strengthened my appreciation for each and every one of you and I have spent time with everyone that I otherwise would not have. And last, but certainly not least, Tim remains amazingly patient and supportive, and I will now add super-Dad to his title in addition to super-husband.

Because things have been so crazy, the few spare seconds I have I tend to fall asleep. I have gotten very behind on my thank you notes and email responses. I want you all to know that I appreciate every thought, prayer, message, card, gift, and flowers. Thank you!

Overall, we feel extremely blessed to have these two wonderful, healthy babies who prevailed during maternal surgeries and the recurrence of the disease. Helping create and carrying these two perfect little people despite this is my greatest achievement. God watched over my babies, and now He can watch over me.

Well, I think this has gone on long enough. Hopefully we will start updating the site a little more frequently so the next entries will be briefer. As before, writing this has been therapeutic.

Thank you and God Bless,

Kathryn

34-week Ultrasound

We had another ultrasound today and both of our babies passed there bio-physical profiles with flying colors. Our little boy weighs approximately 4 lbs 8 oz and our little girl weighs about 4 lbs 13 oz. Does this look like only nine pounds of baby?

The New Nursery

We finished off the nursery for our little ones. It was several months in the making but its finally done. The carpeting was installed on Saturday and Grandpa and Grandma Q. were over late Saturday and Sunday helping with the finishing touches. We got lots of beautiful things at the showers and it really shows now. The built-in shelves Grandpa S. built are great for storing linens and displaying books and other knick-knacks. You can see the beautiful quilts in the picture as well. These were made for us by Suzanne and Tom's (Kathryn's mom and dad) friend Becky Murphy. She did a wonderful job on them. You can't tell here but when they are unfolded there are pairs of different animals quilted into them in a Noah's Ark theme.

I also made a video of the new room.


I really like the new room and am very happy with how it turned out. Now there's only two things missing...

November Recap

I am still enjoying work but manage to make it in my pajamas and onto the couch faster and faster each day. I have a lot of pain in my mouth and have been having some trouble eating but the babies continue to do great and are right on track for size. We are so proud of them already!

Their room upstairs is really taking shape. Tim spent all month building custom bookshelves (with the help of Dad S), painting, putting up beadboard, and finishing the trim. I can't believe it is the same room!

We had two wonderful baby showers this month. It was so nice to see our friends and family! We can't believe how generous everyone was. We are going to be well-equipped when the two little ones arrive.

I continue to get bigger...

October Recap

I returned to work full-time. It is good to be back and everyone has been extremely supportive and helpful. I feel blessed that I love what I do. I am pretty tired by the time I get home though.
Tim continues to be a super-husband taking care of me and working on the nursery - walls have gone up, the wiring is finished, and drywall is in place. What a project!

Amazing news - I passed my dermatology board exam!!! My last big test for 10 years. Next summer I will be able to focus on the babies instead of spending it in a library studying. Yea!

September Recap

I started back to work part-time. We also went on a wonderful babymoon to Mackinac Island. Who knows how long it will be until we make it back!

Tim started to work on the babies' room upstairs - quite a project. I layed on the couch and prayed he didn't get electrocuted;)

Early in the month we had our first anatomy ultrasound. We found out we are having both a boy and a girl -we are so excited! At the same time we also discovered that our little guy has a cleft lip +/- cleft palate. We know this is fixable, but hate the thought of our little guy having to go through these surgeries and challenges, especially when he is so young. We would do anything to bear this burden for him, but that is not the way it works. Welcome to parenthood, huh? Amazingly, this is unrelated to my cancer or the surgery. I guess we are hoping to get most of our trials and tribulations out of the way this year...

August Recap

Well, this was not a month for us to remember, but it was great for Teddy! I was home every day and we had tons of visitors. Tim did manage to literally drag me to Chicago to take my dermatology board exam August 11th. It was a spontaneous trip and Tim was a trooper.

And in case you are wondering, Cancer Angels can be furry... July Update

This is a picture I took myself from the pre-op "suite" just prior to my second surgery. With a team like this how could I not do great! From left to right: Tim, Mom S, Dad S, Dad Q, and Mom Q.


My brothers Patrick and Ryan made the long trek to U of M to visit almost every day. As you can imagine they really lightened up the mood:)

Ultrasound Progression

One of the only benefits of Kathryn's cancer was that we got to have a ton of ultrasounds. It never gets old seeing the babies even if it is in grainy black and white. Here is a selection of images from very early on to last week.

Six Weeks
Eight Weeks
12 Weeks
Sixteen Weeks
Twenty-Six Weeks
Thirty-One Weeks

KQ's Survivor Beat

Since this is the first post on this blog I think I should explain a little bit about what we hope to accomplish with it. Ultimately we want a place where we can keep our families and friends updated about our lives and the lives of the twins we expect in a month or so. The next few posts will contain information for everyone to get caught up to right now.

First though, a bit about the journey we have taken to get to where we are now. What follows was written by Kathryn and distributed to family and friends on July 29, 2008.

KQ’s Survivor Beat: An Update on How I Am Surviving Cancer

Hi Everyone

As always, if you are receiving this in error, please delete (no hard feelings) or if you know someone who should have gotten this and didn’t please pass on (I don’t have everyone’s email addresses so no hard feelings on your end please).

Time for another update. Better news this time than last. This is a little long so you might want to grab a snack…

A quick recap for those who may not have heard (if so, sorry!): In short, I was happily married (still am, now more than ever) and pregnant, about to graduate from my dermatology residency June 30 (chief resident this year, but not nearly as tough and cool as Baily on Grey’s Anatomy) and going to stay on at Henry Ford, opening a clinic in St. Clair Shores. On June 9th I found out I was having twins (wow!). That same day I had a biopsy of a sore on my tongue. Two days later (6/11) I found out it was a squamous cell carcinoma (ohmygosh, the proverbial #%&* hit the fan). Needless to say, I am not a smoker, chewer or drinker and this is a very rare cancer for young women (which is why I let it go for too long).

On July 2 at the University of Michigan I underwent a partial glossectomy (where they removed a 6 x 2 cm portion of my tongue) with selective lymph node neck dissection (26 lymph nodes removed from my neck). The surgery went well (no radial forearm flap!) but the path report was mixed. All of my lymph nodes were negative (yea!) but a deep margin was positive and there was extensive perineural invasion (boo). So, the trach went back in and on July 9th I underwent further resection. This time, margins were clear.


The second surgery took the wind out of my sails a bit, both mentally and physically. Despite my excellent care and beautifully decorated hospital room filled with flowers and cards, I was thrilled to come home. Since then, my recovery has been slow but steady.


I had a feeding tube in until last Friday, and now my days are spent trying to get as many calories down as possible. (As Tim says, I can slam down a bowl of soup in 60 minutes flat.) Fortunately, enough of my tongue is left that I will eventually be able to talk fairly normally (I might have a slight survivor accent) and eat most foods, but for now I am trying to relearn how to swallow, transfer food in my mouth, handle my secretions and talk. It is amazing how we take for granted the normal workings of the human body (but also appreciate how it can compensate if necessary).

Last Friday I had the big appointment that I was dreading – radiation oncology. Radiation in the mouth is not a walk in the park and worst of all is not compatible with current or future pregnancies. To my complete amazement and pure joy, Dr. Eisbruch did not recommend radiation at this time. If I was your typical oral cavity squamous cell carcinoma patient (aka much older, smoker, chewer) both radiation and chemo are considered the standard of care. However, due to my young age and otherwise excellent health (heck, I used to run marathons) the benefits do not outweigh the risk. As it turns out, my risk of developing a second malignancy from head and neck radiation is very high (10% at 10 years, 20% at 20 years, and 30% at 30 years, then who knows). I plan to still be working at 60! He said that if the cancer does come back, it will come back in the next 3 years locally and I will have the full court press at that time. So for now, I am grateful for every day and pray that it is gone for good (all prayers are still welcome).

Now for the fun part. I have officially entered the second trimester! The little ones continue to do amazingly well despite two major surgeries and narcotics. One of the perks of my condition is that I get tons of ultrasounds (yes, there are a few perks). The two are very active and we are able to see their tiny arms and legs moving around. As Tim says, they are fighting already! Now that the worst is behind us, I can enjoy the pregnancy. We are three little miracles.

Cancer is not a gift – I did not ask for it or want it, I did not deserve it, no one gave it to me, and I cannot give it back (if only!). However, the experience has not been entirely negative and I have grown as a person from this. Here are a few things (in no particular order) I would like to pass on so that you can benefit without having to go through the same. Needless to say, the old clichés such as “cherish every day as you don’t know what the next will bring” and “we cannot change the cards we are given, only the way we play them” still hold true, but I will try to stay away from those.

· All people are good, many just need to be given the right opportunity to show it.
· Don’t sweat the small stuff, it really doesn’t matter (and it’s not worth your time).
· Don’t wait until your ducks are in a row, they never will be. Do what makes you happy now.
· It is ok to say, “No.”
· It is ok to ask for help.
· It can always be worse.
· If life gives you lemons, make a lemon drop martini. Nothing is gained by throwing a pity party. Optimism can only help, but be prepared for every scenario. (That last part is from Randy Pausch but it is how I have always lived my life, heck I used to be an engineer.)
· Never underestimate the importance of family and friends, they will hold you up and get you through the day if that’s what it takes.

In closing, a special thanks to my Cancer Angels, namely Tim, my parents, brothers, in-law’s, and grandma (she handled the news like a champ) who have loved and supported me every second. I cannot imagine this from your perspective but you have all handled this with strength, determination and optimism and words cannot express my gratitude.

Thanks to all of my friends and family for your love, support, prayers, cards, flowers, gifts, visits, emails and well-wishes. I could not have come this far without you.

Thank you and God Bless,

KQ (+2)

For those of you who are still reading, thanks for bearing with me as writing this has been therapeutic. Hopefully I will not have much to report from here on out…