It's been a while

I apologize for the delay in posting. But, it has been a crazy few weeks. I am currently in Spartanburg and have been here for just under a week because last Wednesday DAD CAME HOME!
We are so excited to have him back at the house. It hasn't been without challenges- he is wheelchair/walker dependent (much more emphasis on the walker), and we are all having to learn his limitations. Even though his physical and occupational therapists aimed to have him able to stay on his own, going from a facility with round-the-clock nursing care to NO nursing care is a HUGE change. But, it is nice to figure this out together.
Dad was so excited to catch up on his news (he is a news junkie and his hospital schedule often had him missing his favorite shows), have some more variety in food choice, and was so thrilled to see Donald the Dog. Donald wasn't so sure what to think about Dad's walker or wheelchair, but is slowly getting more comfortable.

Also, we have confirmed that Dad's diagnosis is officially transverse myelitis and NOT neuro myelitis optica. This is great news in that neuro myelitis optica is more similar to MS and typically paralysis will recur, where as transverse myelitis, while it can recur, typically only occurs once.

This is a picture of Dad moving his foot when we were at his eye exam to rule out neuro myelitis optica. I have one of his face, but he was pushing 3 months with no hair cut, so I'll get an updated one! On Saturday Drew, Mom, Dad, and I all went with Dad to get his first clip. First trip since he'd  been home! Think his sylist thought we were a crazy entourage! If he'll let me, I'll do a before/after post later.

Mom has had a rough few weeks. She had a bad cold and has just been extremely tired. Last week she seemed to be doing a bit better---just in time for her next chemotherapy session last Thursday. This morning she had a CT Scan to determine whether or not that was her last session! We are praying that the scan will show the cancer is gone. She'll get her results Thursday. Her doctors have also discussed her participating in a new study where patients take a drug for a period of time after finishing treatment to see if it reduces remission rates (but the drugs will have side effects). Prayers for discernment about whether or not she should participate are appreciated.

A picture from Mom's Christmas Eve, Eve chemo session. Just watching a little Youtube. Her sessions run 5 1/2 - 6 hours (when she first started it was 7 1/2!

In other news, my niece Sophia has the flu! Please also lift her, John, and Bianca up! Sad when a sweet baby has to be sick.

Thank you to everyone for your continued support. I'll try update again soon.

The Tough Stuff

This week has been extremely encouraging. First, Mom's chemo went smoothly and her oncologist stopped by and said he was very encouraged by her progress. Then, I ran over to see my Dad.  He asked that I come by during his physical therapy so I could see his progress and also because I knew his main physical therapist Dori from high school. While I was there Dad, with Dori's assistance,  took SEVERAL STEPS WITH A WALKER!!!! It was all I could do not to cry like a baby right then and there. I kissed his cheek while he was standing up- so nice to use my tip toes to give him a smooch when lately I have been bending over to reach his cheek. :) So excited and praying that both Mom and Dad continue to progress!

We have done our best to stay positive throughout this process but we definitely have not been without our bumps in the road! So, I thought I would be honest about some of the tougher lessons I have learned and continue to learn since Mom and Dad became sick (emphasis on continue to learn ;)).

First, I learned that people will disappoint you. Friends, family, and people in general have different capacities to handle stress, sickness, and also have different things going on in their own lives. When you are already sad and stressed out, anger is an EASY emotion to resort to, whether or not it is warranted or justified (now don't get me wrong, anger is so, so damaging to the holder and the receiver, but I think it is so much easier to be angry than to be empathetic, sad, or frustrated). I am slowly learning that there is no "right" way to handle situations like these---the responsibilities will never be completely balanced, some folks may not have the emotional capacity to deal with the issues surrounding diseases such as cancer and paralysis, and others just may not have the time- and that is OK. It doesn't mean they aren't giving all they can.  My husband always gives me gentle reminders to focus on what I am doing and not on others- and he is spot on. It helps my focus stay where it needs to be- on mom and dad and makes me  realize that it is a GIFT to be able to spend time with them throughout this process.

Mom and dad are still my parents. I think when your parents are ill and somewhat limited in their abilities to take care of themselves (dad, more so than mom here), it is easy (well for me) to go into "control" mode. To make schedules, plans, and worry, worry, worry and want to be with them every hour of every day. Pretty sure it is SUPER frustrating for parents to be parented by their child, and think it is natural for them NOT to want to ask for help or identify needs. Both mom and dad have had to give me gentle  reminders to calm down and let them make decisions for themselves.  In response, I  shared how down right terrified I was of losing them, and that scheduling and planning was my way of trying to "fix" things. The result? Dad has been much more vocal with me and John regarding the days he needs assistance. Mom has agreed to come to Columbia more just to give us peace of mind. Acknowledging that this is UNCOMFORTABLE for all parties, parents and children was a huge step in figuring out this new situation. We are all able to cut each other a little more slack.

Along those same lines, we are learning how to set boundaries. There are just some things that unless absolutely necessary, I just won't do. Before Dad was in a wheel chair, he needed assistance eating, bathing, etc. We quickly determined what he was comfortable letting his kids help with and what tasks he wanted to leave to nurses, etc.

Finally, it is important to ask for help. In a situation like this there isn't a guide book as to how much time you should spend at the hospital, etc.  My goal is to do what I need to do to take care of myself so that when I am with mom and dad I can give 100%.  John has also had to navigate this balance as he has a baby daughter at home, his wife has had some issues with seizures preventing her from driving, and a job that isn't very flexible. In order to keep the emotional reserves filled you have to rely on outside help. We have been overwelmed by folks stopping by the hospital, visiting mom, bringing meals, calling, etc. And, I can say with confidence, that we wouldn't have been able to get through these past few weeks without you.

Thanks for checking in. Hope everyone has a good evening, I hear there's some football game on tonight....I am really just looking forward to the Glee episode following that game!

Do Blondes Have More Fun? And an Update.

Well, unfortunately, I am not sure if I will ever find out if blonds have more fun, but back in November, when Mom picked out wigs, I did convince her to try on this beauty.  Although she can pull off the look,  she decided to go with her traditional brown/black.  Still, most of the time she wears hats and looks cute as a button.

Today Mom met with her oncologist, and he could not feel the tumor during his physical exam and thinks that she may only need 6 sessions of chemotherapy instead of the 8 that were originally scheduled. First, PRAISE GOD that her tumor is shrinking! Second, if she only has 6 sessions, she could feasibly be finished with chemotherapy by the end of this month! Yahooo! Please pray that her tumor continues to shrink and that she will finish treatment soon!

Dad is also doing well.  After further testing, looks like transverse myelitis is Dad's official diagnosis. The tests for the neuro-myelitis optica came back negative. This past weekend we were shocked to see him moving his legs- huge improvement from a month ago. He has also taken 3 small steps using the parallel bars during pysical therapy. While his brain can communicate to his legs to move, he still cannot tell whether or not they are moving-- i.e. he can wiggle his toes, but cannot tell that they are wiggling. He is still a long way off from walking independently or with the assistance of  a walker, but we are excited about these improvements and try to remind Dad of how far he has come.

I will update again soon as mom has chemo Thursday and I will see Dad then too.