February 17th, 2009 - One Year Ago Today

Today is February 17th, 2010.

I've been thinking about today, realizing that it is a very special day, for some time now. One year ago today my oldest daughter, Bobbie, had a brain tumor removed. It was one of the longest days of my life. So many fears in both of us, all of us. So many complications that could have come of it.

One possibility was that she would have severe permanent memory loss. This had not happened. She has mild blanks in the past few years and wonders how her daughter grew up so fast but other than that she woke knowing who we all were that day. (This was my greatest fear I think, besides death,

her not recognizing me.)

Another possibility was seizures. She is on an anti-seizure med and was told she would be for a minimum of one year and they would see about it after that. This may be a med she will have to be on for her entire life. At this point we still don't know. I'm happy to report she has not had one seizure the entire year. At least not one that we know of. WooHoo!

Another possibility was paralysis on one side. The day of the surgery and most of the day after this looked possible. But then she moved a toe and her stubbornness was still intact and she moved the leg, then the next day the hand started twitching. She now has weakness on the left side but is not paralyzed. She has to be careful on bad days how she steps or what she attempts to lift but other than that she is mobile and usually without her cane.

Bobbie still has a few obstacles to overcome or keep in check but she's doing wonderful. Her weight is down and she has that thick head full of hair back. Her diabetes is under control and she seems happy. She even seems to be able to know when her panic attacks are coming on better now and will warn the person she is with or just head home quick. If you suffer from an anxiety disorder (Bobbie is still bi-polar, but it is under better control) you know how scary this can be. She is hearing her bodies signals now. I think before there was so much going on in her head she couldn't concentrate long enough to understand the suttle signals the body will give us to let us know we are about to hit that panic button inside ourselves.

What a blessing God gave us through all of the many folks that prayed for Bobbie and through the surgeons hands. I thank you all and our Great Lord in Heaven every day.

I've been home sick and even sick I cannot just sit and one can only sleep so much. Especially with me taking prednisone, it wires me out. Like a mega dose of caffeine. (I'm so sweaty I bet I stink, and that's 10 minutes after a shower.)

OK so for the past few days with the approaching date I've been doodling in my journal. Journaling or journal doodling is a quiet activity which is what I needed and the word chaos kept coming to mind. Then the words noise, voices, sounds, headaches, fear, confusion and more. All of the many things that Bobbie was able to finally express to us that was going on in her head. She was living in chaos inside her mind and around her. I spied a bracelet that Bobbie had made me on my dresser vanity and the journal page came together nicely, as did the idea for this post.

Here I share the journal page, it is a 2 page layout:

I am not sure if this center doodle is a butterfly or a heart. It may be both.

Here is a close up of the left side:

And here is a closeup of the right side:

Bobbie at one point decided to try her hand at making jewelry. I believe that the tumor was already growing at this time of her life. She was already displaying weird signs, behavior, activity (falling down, always sleeping, fleeing, paranoid, dropping things, etc.) that later we learned were effects of where the tumor was (right frontal lobe). Bobbie knows that I like pearls. As a child wearing pearls made me feel grown up and as an adult they make me feel classy. She also knows I like mother of pearl with silver. Mother of pearl has such an iridescent quality. It is white, yet not completely just white. I love it, sometimes I think even better than pearls.

Bobbie made the following bracelet with a brain tumor in her head:

It will always be a special piece of my girl for me. Knowing that even when chaos was going on inside her mind she loved her mom enough to know what to make for me that would be special to me. I love this bracelet and I love that she made it just for me.

Happy Day Bobbie, Congrats on one year proving them wrong. They thought you'd have that seizure or seizures, you didn't. You've done good taking your medicines and on time. You've done good getting to know your little girl all over again. Keep it up honey. Don't worry about those things, those days, that you don't quite remember fully and just live in the moment for this day and the next. Give her the precious time you have now to make new and better memories. Help her build better memories of mommy so that the scary ones when you were so sick will gently slip away to fun and fantastic memories of her mommy spending time with her and loving her with all her might. Momma loves you sweetie, always have (even through the rough times) and always will.

Thank you all, my blogger friends, for listening and sharing in this glorious day with us. Today I am reminded that

This is the day that the Lord has made,

Be glad and Rejoice in it.

Be Happy, Be Healthy, Be Yourself,

Tess

A Quick Update on Bobbie

February 3rd, 2009

Greetings all,

First, thank you for the many prayers for Bobbie. Please keep them going/coming.

Yesterday was a long and tiring day. We made it safely to Topeka for the MRI and a friend of Bobbies in the medical field that knows his way around St. Francis arrived shortly after we did and before the MRI. Which turned out to be a blessing as the double Valium dose pretty much made her limp. The MRI people were "little" and would not have been able to handle lifting her. Tracy and Robert were able to assist with getting her into position. She did move some during the MRI but the neurosurgeon said with her tremors he could not fault her that. The images were clear enough for their purposes and he went forward with his evaluation, findings and suggestions. During his check-up with her he detected a weakness in her left side. The tumor is on the right frontal lobe just past the forehead to mid top of the head and from the hair part to the right about half way towards the ear. She thought her brain looked like lasagna. The nurse had to give her coffee to wake her up, and it did, so that the doctor was certain she understood everything. The mass is about the size of a golf ball and has no tentacles. One core area at the bottom of the mass otherwise it looks smooth. This is a good thing from what the surgeon indicated. She has been put on dilaudid and he thinks she is having mini seizures and plus seizures are a possible result of any type of brain surgery. She will stay on it until at the least six months after the surgery.


The soonest date available for both doctors was Feb. 24th. Dr. Eberling will be her attending surgeon and Dr. Fritz will be the assisting surgeon. Dr. Fritz operated on my husband in Dec. of 2007. This seemed to make Bobbie happy and I have to admit I was glad to hear he will be with her too as a trust has already formed with him as he helped Chuck. The surgery is scheduled for February 24th. They are going to try for sooner but we are to assume at this point that is the date. The kids have no medical insurance and thus far the type of treatment they have received I have been ashamed of. We are told the hospital here never should have let her leave the E.R. when the ct scan showed a tumor. No one seems to understand why she was continually given meds and more meds, psychotropics and pain pills, without further tests ordered before now. (That is all said and done and we must move forward.) At St. Francis they were treated with kindness, respect and told that "the non-insurance situation can be dealt with at a later date, first we've got to concentrate on getting Bobbie better". I highly recommend this hospital as twice now I've had a loved one there for evaluation and received exemplary care both times.


Bobbie is barely able to write her name let alone keep a journal, however I did purchase her a small notebook and decorated it up a bit. I added some quotes, stamped flowers and stickers throughout and we used it yesterday to write notes in and dates, meds, etc. Robert and I will continue this for her throughout this ordeal so that she will have something to look through in later years and see what all she went through that she may not remember. She was going to show Raven all the things in the notebook today. I expressed to my granddaughter last night that it is mommies journal, not hers. She is a scared little girl as they have now told her what is happening with her mommy. I guess the journal was more for me in a way as it was a distraction on Sunday night and Monday morning while waiting for the time to pick her up and head to Topeka.

Please continue to pray for Bobbie and pray that God will be guiding the surgeons hands....

Many Hugs,
Tess