Wednesday, October 26, 2011

Rejoining the Living!

Becky again.... Things are looking up at the Schlappi / Bodrero household!  Yesterday Tara only had one Percaset (pain med) and today I don't think she had any!  She is tolerating light and noise much better than last week  - (last week was zero tolerating of light and noise) and she's able to focus some also.  She got out of bed yesterday and did more than just take a bath for the day.  She actually focused on sewing some quilt blocks for at least 30 minutes until she spotted a scorpion (a DEAD scorpion) which so freaked her out that she ended the sewing process.  AND, she helped some friends and I do a marathon quilt project last night which started at 9 pm - Tara lasted til midnight. Totally amazing!  She is smiling more (although smiling hurts her jaw muscles which are always cut during surgery) and doesn't talk with a weird voice (due to the trach tube in her throat during surgery).  She is acting happier; but I think she's also trying really hard to be happy (or at least "look" happy).

She still is in pain - but I don't ever know how much because she doesn't like to tell me.  I do know it still hurts; however.  She can't bend down without her head hurting and she still needs to sleep in and rest often. After all, there was some "sawing" that went on in her skull - which causes pain for sure! But, she is a fighter, and she's fighting through this one and we will make it! She is still my hero and the "princess on the hill" as Collette would say... (Scott's sister)

I have heard from so many people this week that Tara is still in your prayers every day.... I am so amazed by that.  It humbles me and makes me realize how sometimes I don't see outside my own "box" sometimes and need to remember all those out there who are suffering and have trials.

Monday, October 24, 2011

Going home today!

This is Becky.  Tara is going home today! (this was written last Friday) Yippee!  I hope the only other surgery on Tara's horizon is a minor one to remove her port.  We have 3 items of good news.

LOVE our anaethesiologist!  Tara did not throw up once until last night; and we think that was from the Percaset.  She has never been able to eat the first night before; and his concoction worked!  Yea!  We will keep him in the charts and use him for the port removal surgery.  Her eating this surgery has been better than all the others this year.

SURPRISE VISIT from Uncle Mike!  Can you believe it?  He was in town to speak at a convention in Scottsdale for the day; and had his driver re-route him to the hospital instead of the hotel for a few hours!  We were so surprised and LOVED it.  It's impossible to be blue when Mike is around.  He wheeled right in and brightened up our dark room (Tara hates light and noise for awhile after surgery).  We ordered lunch out from a favorite Italian place close instead of eating hospital food and had a little party!

NO CULTURES GREW!  That means prayer #2 was answered!  I am so grateful to our Heavenly Father who is still watchful of Tara as she goes along this brain tumor pathway. Tara will be on antibiotics for 2 weeks as a precautionary measure only. They will be in a pill form - NO IV ANTIBIOTICS!  They should not upset her stomach as much.

She will still probably be expected to go through her last chemo treatment that she skipped this week.  She will do it in about 3 weeks after healing has happened.  So, our expected news about finishing chemo was a little premuture; but all is good because it's still just one more treatment!  Now, we just need to pray that Tara's head heals quickly enough that we can go on that cruise in December.... but if not, we will remain positive and plan a different trip....

Thanks all for your prayers..... we feel them strengthen us so very much!

Wednesday, October 19, 2011

Surgery 6 report

This is Becky.

Well, fans, I just spoke with Dr. Joganic - surgery #6 is about to wind itself up.  I am sincerely hoping and praying this is the LAST, the very LAST surgery!

Tara once again headed through the double doors all smiles and sleepy.  She remained positive all last week as she prepared for surgery.  I am the only wreck around who mopes and cries.  I did successfully not cry this time as she went through the double doors - just fought to hold back tears and this time I succeeded.  Tara's smiles once again carried me along.

Dr. Joganic said the reason for the hole in the head was that the hole was where there was a bone screw or something like that which was putting pressure on that area of the skin.  He talks fast and I would need to record it or have him say everything again; so I'm doing my best to hurry and type what I know.  He said the collagen cells have already turned on to healing (how does he know that?) He said they usually take 13 days; so there is a chance she can even heal faster than the last surgery.  The biggest dilemna to healing is that her skin never will be the same since radiation last year; but the INSIDES of her head are looking good.  He did a small bone graft - put some bone material in where they drilled some bone out. Dr. Smith was the bone driller, and Dr. Joganic was the one in charge of the skin.  So, Dr. Smith drilled out some bone tissues; smoothed it all out, and then the graft with some webbing (titanium) was placed over the bone material.  This will make Tara's head all smooth and pretty again and therefore reduce the pressure of the skin stretching and therefore pull off a LASTING healed head.  At least, that's the plan.  Her bone did not look infected - that's ONE answer to prayers - he said as they drilled to just smooth it out; the blood and bone tissue looked really good.  Her tissue cells have healed from last time and he was generally pleased with her insides.

So, for my second prayer - no antibiotics - the verdict is still out on that one.  I was really, really moping and frustrated because the seizure med takes away Tara's appetite; and the antiobiotics are just horrid on her stomach; so I was very blue about this whole surgery.  Dr. said he did not see signs of infection (YESSS) BUT they sent some tissue off to pathology just in case.  In other words, we will know in 2 days if she "grew" any infection or not.  I pray she does not have any little tiny traces of infection; because if she does; those doctors will slap those antibiotics in her system pretty fast.

The anaethesiologist used a different mix of stuff today hoping to help Tara's nausea.  We'll see how that goes.  She's headed to recovery now; so I'm going to sign off so I can be with her.  I'll post more when I can.

Thanks soooo much for your prayers!  I am feeling better now.  I really really hope we can still go on the cruise; but I'm not sure about that.  Her head has to totally close up.  Dr. Joganic said not to rule out the cruise; but he didn't exactly say she would be fine...... we have to pray she heals quickly.  If not, we will still keep our chins up and plan some other trip - but we would have to wait til summer and I don't want to wait to celebrate the end of treatment that long!  I'm not exactly the most patient person; although this whole process is teaching me more patience than I ever wanted!!

Love you all so very much!  I will be happy to tell Tara the doctors feel good about this.  We just need to get to the place in her life where we can stop checking the inside of her head every few months!!

Friday, October 14, 2011 cancer is GONE!!!!!!!!!!!!!

My favorite mother feels it necessary that i put a new picture up so I will write under the one she has posted. Thanks Mom! :)  You can't even tell that I am rather thin on the right side of my comb-over is working wonders! 

Okay so Mom filled you in a little with what is going on lately but here it is again. 
Tuesday = MRI day but it was more than any other MRI could potentially be the very last MRI day of treatment! :) I love seeing is amazing how he went from the bottom of our list of favorite doctors to the top. He probably could easily be one of my favorite doctors of all time. I guess I have never known one as well as he! He has seen me more in the last 1.5 years than any other...well he has a rival with Smith...and luckily...we love him too! I am so blessed to have doctors that I love. I actually hug them every time I leave no matter what the news are. They have become a part of my family. I am sure you other fellow doctored people understand. 

Okay so here are the results...

let's just say I asked Shapiro if I could have more medicine and he said NO! :) He said that there was no reason that I would need any medicine right now. My brain looked fine. 

MY CANCER IS IN REMISSION...IT IS GONE FOR NOW!!!!! and hopefully never coming back! Man I knew we could do it. I knew that we could kick this thing to the curb! :) it still does not seem real to me and really I think I am still in shock. I don't think it has hit how big this is. 

I think the main reason that it has not hit me hard is because of what I have known since Friday. Well tomorrow....I am having surgery number 6 on my head. Josh and I have decided that we wanted to have as many children as we did surgeries so it is now urgent that we slow down. We will be lucky to get what we do get :) We would love to have a big family but I think our definition of big goes to rather XL when we go over the 9 children range (just a person thing) so I think my head needs to be done. 
We are not sure why I am leaking yet but I did see Smith (Nuero-Surgeon) and the plastic surgeon again so we will have them both in there to try to solve the problem. They may try to add titanium back in and shave more bone out (infection may be in bone). The really really really good news is that the scan looked amazing so this is just a simple brain surgery. They only scheduled the operating room for 1.5 hours I think which is rather short compared to the last procedures my head has endured.  I wanted to keep that little fact a secret but my Mom brought it out so I guess it is not a secret anymore. She brought it out for good reason. There is always need for prayer but please remember that I am not the only patient of these good doctors. I see so many people go in and out of those doors each and every day. They need comfort too. Especially those little ones... it breaks my heart. 

So here we go...

5 this year but that is Chol and Nate and Lori's favorite number...anyone else??? if not...please pretend tomorrow that it is. 

Last round of chemo - coming up!!

I really hope Tara posts soon; but I felt like I needed to post today; so if she posts also and repeats some things; I know you readers won't mind because I know how much you love to hear from her!  But, I also know she wouldn't post this picture; so I just had to do it!  Isn't she just beautiful??

Good news first..... Tuesday was MRI / Dr. Shapiro day.  Dr. Shapiro said there was NO CHANGE in the MRI. Do you know how good those words are in the brain tumor world?  Really, really good.  Other good news - last night Tara started her LAST round of temodar (chemo).  She said on the way to Dr. Shapiro's office that she thought this day would never come.  First we start with counting down 42 days of radiation; then we progressed to counting down 12 months of temodar treatment (which turned into 15).  We have counted other things, such as days to get off those dreaded antibiotics.  Just to make it through this very long treatment is a milestone!  We are celebrating the end of treatment with a family cruise at Christmastime - Dec 18 to 24.  We are just a tad excited.  As of Tuesday, the doctors cleared Tara for getting in the water and having the time of her life!

Okay, now that I've told you the good news.... we have to remember the good news as we move forward to other issues.... we still need your prayers.  Tara's left arm is not behaving again.  Last week she said when she closed her eyes, she didn't know "where her arm was".  I convinced her to play womens' softball with our church group last Wednesday evening; and she couldn't make her arm with the mitt move to catch the ball.  That's just an example of what it's doing.  Shapiro classified this as "small mini seizures" and Tara has them multiple times per day.  Her arm "comes and goes".  It's not in any pain; but Shapiro wants to get this stopped.  So, he has her taking some more of her Zonogram seizure med (which causes appetite loss for Tara) to try to help this.  We are supposed to call him in 2 weeks and see if it's working.  The down side of this is the appetite loss - Tara really wants to enjoy eating on the cruise in December.

Okay, now for the last thing to pray for - Tara's head started leaking AGAIN this morning. The good news is that it's clear fluid; not green or yellow.  But, it's still fluid and still leaking.  Tara is on her way to Dr. Smith's office now.  (I'm in St. Louis with Scott & Nate)  We really need your prayers that her head will close up; and the fluid will be taken care of. The thought of surgery again is very troublesome to say the least.  We so appreciate all your prayers that we know you consistently send heavenwards.  We've come this far; but we still have more paths to travel on this brain tumor road.  It's testing my patience, for sure!  I had my brave break this morning; but after many tears and a long prayer; I'm feeling better.  Just needed to write this blog and enlist the troops again!  Thank you all!!