Hello friends. I know its been a bit since I blogged (I start so many of these things with that very sentence). What can I say? I am busy.
I would love to start by saying thank you to all of the people who have reached out to us recently, whether bringing food, prayer, friendship and support. The outpouring of love our direction has reminded us of how very blessed we are.
With so many things going on of late, I thought I would give a brief update on us all.
Mickey- Mickey has recently returned to work after having nearly half of his rectum removed. It was a huge surgery that took over four hours, a robot, several physicians, and 7 incisions to complete. He rocked it out, even getting up to walk that very evening. He was discharged much earlier than anticipated and has amazed us all with his recovery (the mind can be a powerful thing). He did have a brief set back that landed him a weekend in a local hospital, but he also recovered quickly from an infection we never identified.
His final staging was T3N2M0. This means that his tumor was large enough to be considered a T3 (they range T1-T4). He had 5/16 nodes found to be positive for cancer, thus staging his an N2. And we have not found any distant metastasis, so therefore he is an M0. This is not the staging we hoped for. The numbers would say that with surgery alone he has a 50% chance of being alive in 5 years and with chemotherapy after surgery he has a 70% chance of being alive in 5 years. About 85% of recurrences happen within the first 3 years, thus meaning that after 3 years, the chance of it coming back drops down to 5% (which is much better news). The prognosis is much graver than we had hoped, but we all know that numbers are just numbers, and are believing for the best possible outcome. Our family has had the odds in our favor before, right?
Mickey goes back to surgery on Friday this week to have a port placement (a permanent access line placed in his chest), and will start chemo within the next two weeks. It is a 3 day chemo, so he will wear a pump (in a fanny pack) for 3 days every 2 weeks. We will do this every two weeks for 12 cycles (or 6 months). I know he will do awesome with this. We are considering a clinical trial, The research is changing standards of care and we are excited about being a part of that.
He plans to work as much as he can throughout all of this and I know he will do well. The chemo makes you extremely sensitive to cold (and we are living in Kansas, where we were given 11 inches of snow last night). Knowing this to be the case, he took his last opportunity to go sledding with Boy and Bluebird this afternoon.
I know the chemo will tire him, and am anticipating a tiring 6 months for us all. Right now it is still new, and I don't think either of goes even 5 minutes without thinking about the worst case scenario. Many tears have been shed, primarily because we love our children so much and don't want to even consider them losing a parent. I do believe that once we get through this initial grief, that life will start feeling normal again and we will likely only think these thoughts with every 3 month office visit that comes after chemo is complete.
Me- I am still working two jobs. I try to take call for the Greenville Cancer Center every weekend. It helps me not only stay involved with my patients and co-workers, but also provides extra income that we are much in need of. The doctors there have been so helpful in asking about Mickey and helping me to identify clinical trials that he can be a part of, etc. I also joined the local hospital in October, and I am helping to develop a wound care program there. I have always enjoyed wound care and it is very satisfying. I have been fortunate to be a part of healing wounds that people have had for a very long time. I am learning so much and although many aspects of this job are new ventures for me, I know that I am developing valuable tools that will help me lifelong in my career.
Boy- Boy is in first grade and is doing wonderfully in school. He is starting to develop friendships with really sweet kids and it is fun to watch those develop. I am still friends with girls I met at his age, so this makes me smile. He simply amazes me at how well he reads and does math. I think it is fun when my child starts coming home and teaching me new things. He absolutely fascinates us.
Bluebird- Bluebird is in K4 (she missed deadline for kindergarten by 10 days). She is at a school that is all inclusive and she has children with autism and down syndrome and other special needs in her classroom. I am so proud of her every day because she is so caring and kind to her peers. Her teachers always tell me how helpful she is. She is so sensitive to the needs of others. I know this is a gift. AND She still has the best laugh in Kansas and all around.
Buttercup- ahh Buttercup. What can I say? She wears a bathing suit with boots and gloves no matter how cold it is. She likes to watch "Say Yes to the Dress" and she knows all the frozen songs by heart. She still hates the idea of giving up her binky and we usually find her up playing under her bed with a flashlight well after bedtime.
Auggie (I feel like I had a nickname for him, I even thought it started with a "B", but I must have forgotten it, ha). Auggie will be a year old next week. He started walking, but still crawls for the distances. He LOVES to eat. He eats all the time and I have not found anything he doesn't seem to enjoy eating. He is like a little bird, always opening up for more. He is huge and wears 2T clothing (weighs more than Emily) and barrels around the house getting into anything and everything. Like his brother, he loves the Wiggles. He has white hair that sticks straight up on top of his head. He smiles and laughs all the time. He is the coziest snuggler ever.
We are seen tomorrow in Kansas City with genetics (we go to KC often to see vascular docs and pulmonary). We have been waiting for this appointment for many months now. I am unsure if they will be able to provide us with any insight to why he had hydrops or why he has a lymphatic malformation, but we still feel it is important to cover all of the bases so that as future research and information arises, we can continue to make sure he has the best care possible. We are told that lymphedema is "heavy" or "achy". He doesn't like us to squeeze that hand (when walking with him), but he certainly has not let it stop him. We know a past xray showed small pleural effusions (fluid on lungs) vs lung scarring. He has a cough at times but really, if you met him, you would be amazed he was ever so sick. He is such a healthy happy baby boy, and has the most kissable cheeks in the world. We are celebrating his birthday on Valentines day with lots of hearts and love!
Fozzie- This dog is taller and heavier than we ever imagined he would be. He is silly looking and acts even sillier. He loves the snow and dashes out to jump and roll in it. He comes inside with snow dreads and a smile. Yes, if dogs smile, this is a smile. He has a nose as long as a mule and a tongue that is twice as long. He thinks he weighs 10 lbs and sits in our lap, lays his head on a pillow and I've never known a dog until now who has to think about whether or not he is in the mood for steak.
With so many hospital days recently, I became obsessed with two iphone apps. Flipagram and waterlogue. I made a video for each kid, Auggie's is also a tribute to hyrops survival, a video about my parenthood, and one about Mickey (that I posted in a previous thread), I will try to post those soon but having "technical difficulties". I am also posting a few of our recent photos that I waterlogued. ha