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
Posts
