266TH District Court

Hello again.

Sometimes it is really hard starting one of these blogs as I've said before. I know what I want to convey, but doing so without the vehemence I feel, is trying. Up to this point, Cheyenne had undergone an extensive surgery on Good Friday 2015 to remove her thyroid which contained a cancerous lesion. They also removed a lymph node to check for metastasis (disease that has spread outside the tumor.)

The tumor had been found completely by accident or divine intervention, as we believe, after a softball injury and subsequent testing. Thankfully, her spine was okay and she had no fracture, but a nodule had been seen on CT in the ER. The doctor had recommended checking into it after Chey's neck injury healed. Of course, we didn't wait, at all, and we are fortunate my inability to let things ride took over and we went ahead full steam. We did more testing, at our family doctor's office, and within a week of the accident, we were scheduled at Texas Children's Hospital in Houston. Their Thyroid Tumor Program was ranked third in the nation and we liked their philosophy of a team approach instead of seeing different specialists in different locations and practices.

It was a whirlwind time, that is for sure! Discovery of the nodule on March 7th and removal on April 3rd made our heads spin. Cheyenne had no intention of letting this diagnosis slow her down anymore than necessary and she was back at school within a week after the procedure. Fatigued for sure, but battling all the same. She is an amazing young woman, then and now. It is just too bad the damn school wasn't more focused on that aspect and following the Commissioner of Education's ruling than on trying to ruin her life.

I am still amazed that grown men and women would stoop so low and treat a student this way. I understand, in hindsight, that they had to - and still do. They cannot allow us to show our physical evidence. I (along with several others) believe they will do anything to stop that from happening. I was often afraid for Cheyenne's safety, especially after the bullying on campus and the obscene sexually explicit attacks on Yik Yak.  More so, it was the lack of authorities protecting her and seriously investigating that fed that fear.

We met our lawyers, Susan and Keith, at the courthouse. We chatted a bit and then proceeded inside. Cheyenne was ill and I had already made her a doctors appointment for later in the day. She was having chills and some fever, but it was imperative she be present. Now, I want to make sure that it is clear to you all as to why we were in court in the first place. I must remind you all that over the previous two years, we had followed the school's grievance protocols. We had done everything the policy required, absolutely everything spelled out in that policy, eventually filing a Petition for Review with the Commissioner of Education. A side note here, (on the record at the Level III hearing with the school board), the school's attorney said we had no recourse to do anything further if they voted to uphold the previous decisions. 

It is a good thing that I can read, huh? It still mystifies me that the attorney for DISD could also be the "impartial moderator." How could someone, on their payroll, who was accepting a fee for services rendered AND giving them advice be impartial? Answer: they can't.

But, on the other hand, it incredibly sad that most of the board member's don't check the laws themselves and instead, rely totally on said advice. This I believe is one, if not the most critical, problem with school board's. Any Tom, Dick or Harry (no offense Tom, Dick and Harry's out there) can get on one if they have enough friends to vote them in or to appoint them to vacated positions-regardless of education, intelligence or ability. In my opinion, this is more prevalent in small town settings. Now, there are exceptions to this trend. I have seen people that are willing to stand up for what is right and just, even though they are outnumbered from the get go. People who are there for what is best for the students, not necessarily the district in itself. It is a sad fact that all to often, they are squeezed out.

Anyway, after following all the guidelines, the Administrator at Level I had thrown out our grievance on an "untimeliness" basis. Basically, he said we filed outside the time allowed, which I believed we did not. After the initial denial, each level followed suit and summarily denied the grievance. It is noteworthy here to mention that the School Board's decision was not  unanimous, they upheld the previous decision by a mere 4-3 vote. My personal opinion is that those votes against had decided the outcome long before the meeting and nothing that was presented would change that.

The Petition for Review was docketed, reviewed and decided-in OUR favor-with the Commissioner ordering the district to hear the merit of our grievance. The final decision was given in January of 2015. Now remember, two long, grueling years had passed since this had begun.  Three full months had passed since the decision was given without a meeting being scheduled, AND graduation was right around the corner. The school had been given a directive from the head of the education system in the state, and they were just sitting on it! We had not been afforded full and complete due process through the grievance proceedings and had no recourse but to file a request for temporary injunction through the court system. Hence, the reason we were in court.

Hopefully, that clears up any questions in regard to why we were here.

We were not the first case of the day, so we sat and watched the other proceedings and Susan handed us a large bunch of papers she had just been given by the opposition. (Apparently, they gave much more to the judge, who was not at all thrilled.) In those papers, the school had alluded to some impropriety on Chey's behalf. We were all totally bewildered as to what they were referencing, even though we were completely convinced they would do ANYTHING to discredit her. (What else could they do? They had to deflect the fact they had yet to comply by any means possible...Even if it had nothing to do with the grievance.) All we could do was shrug our shoulders and wait.

Eventually, the time came and we moved from the stands to the arena. Picture that you are facing the judge and there are two large tables between the benches and his podium, just like on TV. We were on the left side and they were on the right and my, they had a huge constituency of followers with them. Many were recognized and several were not. My how dangerous we must have been...to warrant such a group. We, on the other hand did not have a large group. Only a few friends had come to support us. Thanks to them forever!! You really learn who your true friends are when you are in the lowest places. There were also a couple of other individuals supporting us that the DISD's lawyer tried to run off but, alas, they were not so faint of heart and stayed!

The four of us, (Susan, Keith, Chey and myself) sat down at the table. Chey was very pale and still had the steri-strips on her neck from surgery. She was also chilled so she had a lap blanket on. I was adjusting this, at one point, and noticed one of the local preachers enter and slide into a seat at the back of the room. It was a very curious site, I figured out later, he had political aspirations....

Susan and Keith had all their papers organized and we waited to start. Keith was there as our local contact in this jurisdiction to assist us since Susan's practice is in Houston. He ended being much more than that, when all was said and done. He is a very special man in my book--he rates right up there with Atticus, as does Susan!

I must admit, it is somewhat intimidating in this atmosphere due to the formality of the proceedings. I knew this case forwards and backwards and needing no prompting to remember every, ugly detail that had occurred to this point but I ran over everything time and time again. The opening statements were given and the judge tossed the large bundle of papers the opposition had sprung on him, to the side (with some vehemence may I say.)  It seemed that he was not amused such a quantity of information had been given to him right before court. I can't blame him for that!

Susan was brilliant! She stated the facts of the case as to what had brought us to this juncture. Basically, she explained that there has to be a recourse when an entity gives a directive and it is not complied with! That is what democracy is supposed to be, right?

Ms. Leon gave her presentation and then BAM!!

She told the judge that they, (DISD) didn't even know if 'the student' was going to graduate. She said that Cheyenne had something like a 15 in the grade book in her dual credit English course and it was highly unlikely that she would graduate. My heart was instantly pounding and it took everything to keep my butt in that chair and my mouth closed. All I could think was "What the holy hell was she doing?" Chey had been out on medical leave with freaking cancer and your pulling this! Jeez, we all know grades are often lagging when students are ill and they are given extended time to complete assignments and Chey was certainly ill. All Chey whispered to me was, "Just wait until my grade comes out, that will show the truth."

Susan pushed her chair back very quickly and stood up. She told the judge exactly that! They went back and forth for a while and then the subject turned to the school's due process rights...really? We had been waiting for TWO YEARS on "due process" and all we got was dragging feet! Now they wanted "due process", I couldn't believe it!  Ultimately, Ms. Leon informed the judge that they had filed for a hearing in Travis county or were about to. (They feel the Commissioner erred in his decision) The judge decided he could not make a decision without giving them their time in Travis County and we would/could follow up after that hearing. What else could we do? A few other things transpired also, but that is for another story or book-after we settle this whole mess.

We went on to the doctor afterwards. After speaking to Cheyenne's dual credit teacher's, I found out that the DISD counselor had not even disclosed Chey's illness to them-Cheyenne had done so herself. Cheyenne ended up with a high A in that class after it was all said and done. They had opened all the modules so she could work when able. Often times, she would complete several assignments at a time, then she would sleep the days away but, she did complete them and actually excelled. It is amazing what can be accomplished with a bit of understanding and compassion. The school's case is still pending in Austin at this time, as is ours, in Erath. Oh well, all we have is time right....

Time, we still didn't know what it had in store for our child though,

Next time, Pathology woes,

XXOO Make Everyday Count,

Bonnie

LIFE'S TRIALS

Being a parent of adult children sometimes is so much more stressful than when they were young. Especially if they have a mental health diagnosis, doesn't matter if it's major or minor. It is hard on the entire family. I cannot imagine living with it personally, but I can say it is hard to live with watching a loved one. It is also hard on the family dynamic.

I look in my mind's eye and see this beautiful, brown-eyed imp who would laugh at so many things we thought mundane. He could lay on a blanket and watch the clouds and just giggle. He also loved to watch Abbott and Costello and Ray Stevens videos (over and over again.) He was always having a ball and we rolled watching that pure joy streaming out of his soul.

I remember once when Papa Jerry had gone hunting at the farm in Downing and came home to tell Mammaw (Loretta) that he had shot a coyote. That wonderful, smart little boy of about three said, "Papa, you didn't shoot the roadrunner too, did you?" In total seriousness with those little fists stationed on his hips. We all just died laughing.

We had such high hopes, as parents, for his future (and still do.) I think most parents do and if they don't, shame on them. Everything he did was amazing, of course, but he had his idiosyncrasies. He didn't like to cut or color with other kids. It frustrated him to no end that he couldn't stay in the lines and he didn't want the others to see. He was so bright, and even then, had no filter. Daycare operators had a time because those usual things you could con kids into, did not wash with this one. Most of the time it was funny but it also could be a nightmare.

One day, when my boy was in Head Start, I went to pick him up and he was in hysterics. The lady in charge would not even look me in the face. I remember trying to calm him down and asking, "What is wrong baby? What happened?" He had obviously been crying for some time because he had those hiccup sounds, that we've all experienced at some point, going full force. I was down on my knees holding him and he finally got it out - that woman had locked him out in the back area in the total darkness as punishment for some ridiculous thing a 5 year old had done. I was livid, how does a person who is supposed to have a background in education lock a little kid in a dark room? That (word I can't print) should have been fired and in today's world may have suffered monetarily also. I contacted everyone I could and I don't think anyone gave a crap! The result was a changed child. He suffered nightmares, couldn't stand to be without either myself or his Mammaw for sometime. I really don't think he has ever fully recovered....and it haunts me to this day.

From an early age, he had a distinct understanding of right and wrong. (That doesn't mean he always practiced what he preached) but, he knew injustice when he saw it and abhorred it! He would go out of his way to help someone else. I remember when he was in elementary school, he came home one day and told me that a little girl in his class didn't have a coat. "Momma, do I have enough money to buy her a coat?" (Okay, so I'm bawling now.)

I had responded, "Surely, she has a coat and just forgot it." I was hoping to appease him, surely this child had a coat. I know we are in Texas, but it still gets very cold.

Instead he said, "She must forget it everyday then, 'cause she doesn't ever have one on."

I could see the hurt in those huge chocolate eyes and couldn't resist his need to make things right for him. "Yes, I think you have just enough." So, we went to the store and he bought his friend a coat. These type episodes happened over and over again.

Many times he would want to correct things, or people, and it wouldn't work out so well. One time, I remember there were adds on TV about the detriments of tobacco smoke. Sean was so adamant about no one smoking, he swatted a cigarette right out of Grandpa Clyde's hand. That did not end so well for my boy. He couldn't comprehend why someone, especially someone he loved, would do something so obviously bad for them. He is still pretty much the same today. Doesn't have much tolerance for people that abuse themselves or others.

He is so gifted intellectually, witty and really a good soul. As a freshman in high school, he won both the English and Science awards (I still carry those two charms with me today.) I sometimes look at the picture of the award recipients from that year. He was dressed in a red vest and fingerless gloves with a Yu-Gi-Oh bag hanging from his shoulders. He looked absolutely miserable that day.

I hate to see how miserable he is at times. You kind of get into a rut and just cannot get out of it, I guess. It happens to us all sometimes, mostly though, we can recover much faster. We always say there is someone out there who will see how much of an asset he would be to their company, if they can see past the idiosyncrasies, and give him a chance. He's just an amazing guy.

It has been like a war at times.  He seems to focus most of his anger towards me, when it surfaces, and that's okay. I know that people usually lash out at the ones who love them the most because those are the ones that always remain, no matter how ugly it gets. He is a man now, but he will always be that little imp that helped me bake. The guy that made jack-o-lanterns and went fishing with me and looked for his treat from "Ms. Freda" at the bank drive through. The boy who will always have my whole heart.

As he embarks on a new journey in his life, he may be a little Shelden-like but he's mine, forever and always and to the moon and back....

I love you Binks,

Mom

From Bad to Worse...

Well, here we meet again.

The last couple of posts have been a bit off topic. I guess I have been avoiding reliving horrible memories, but here goes anyway. We were very blessed that Cheyenne had made it through her surgery! We were also blessed that the surgeon didn't think the cancer had metastasized (spread to other areas in her body) and we were home!

Cheyenne had been injured in a softball game sliding into second base in March of 2015. From a CT scan in the ER, a nodule was found on her thyroid that eventually was biopsied as Papillary Thyroid Cancer. This has been our story....

On April 7, 2015 Cheyenne returned to school, a mere four days post-op, after complete thyroid removal. She was determined to make it as always and she did. She even went to support her teammates at their softball game (which they won) and readied herself for FFA dairy judging the next day. She accomplished that also! It took her sitting in a lawn chair at each area, but she did it. She was exhausted both physically and mentally, and cratered if she sat for more than a minute or two. Most people don't understand how much your thyroid affects your overall health until they experience it. Many people experience feeling colder, being fatigued and suffer from forgetfulness and depression. So, besides just having a major surgery, Chey was having many of these symptoms. Regardless, she kept on plugging along doing the best she could before all hell broke loose on the 9th.

We had been in an ongoing grievance process with Chey's school district since her sophomore year. We had followed the procedure to the "T" as outlined in the policy, yet, the school had refused to hear the merits of our case. Instead, they had stated we filed untimely. Ultimately, after going in front of the school board and losing that Level III appeal-by a 4 to 3 vote, we appealed to the Commissioner of Education, Michael Williams, and on January 16, 2015 he released the decision.

His decision was in a multi-page document, stating "After due consideration of the record, matters officially noticed, and the foregoing Findings of Fact, in my capacity as Commissioner of Education, I make the following Conclusions of Law:

1. The Commissioner of Education has jurisdiction over this cause under Texas Education Code section 7.057(a)(2)(A).

2. Respondent (DISD) cannot reasonably interpret its grievance policy to require Petitioner (Holts) to file a grievance within 15 days of not receiving a report card, when Respondent's teacher told Petitioner that the report card was delayed to add extra credit.

3. An informal grievance policy that encourages a student or parent to meet first with a teacher, principal, or other campus administrator to discuss the problem tolls the timeline for filing a formal grievance until the conclusion of the informal grievance process.

4. Petitioner engaged in the informal grievance process under Respondent's local policy and timely filed a formal grievance within 15 days after the conclusion of the informal grievance process.

5. Petitioner has pled a viable claim that Respondent has failed to adopt or implement policies that meet the requirements of Texas Education Code section 28.022.

6. Petitioner's appeal should be GRANTED, and the case should be REMANDED to Respondent for further grievance proceedings on the merits of Petitioner's claim."

As of April 9, 2015 (and today) the district had not granted that hearing. So we filed for a temporary injunction to prevent the school from calculating and issuing class rankings until a fair hearing was held, as ordered by the Commissioner. We had tried for two long years to work with the school and their policy and felt they had drug their feet hoping Chey would graduate and it would all go away. The hearing was scheduled for Monday April 13, 2015.

This information was included in an article on theflashtoday.com "Holt Family Takes Dublin ISD to 266th District Court in Erath County." The article also stated that the DISD had filed documents in Travis County "because they say the first grievance hearing was held on the student's merits and the grades, not on timeliness." (If you read the transcripts, the school's lawyers clearly and repeatedly remind everyone present that the hearing is strictly on "timeliness" not merit or grades.)

Anyway, Chey had been bullied and ostracized since early on. Many kids said to her and us also that we were "suing the school." We were not, we were following the grievance policy the district had established. Chey often sat alone and the bullying was both in person and online. Of course nothing was ever done. I even had the AD tell me it was my fault because I "put a target on her back."  Unbelievable response!!

When we found out Chey had cancer, I kept thinking, 'Maybe, they will show some compassion and finally do the right thing, have the hearing and put this behind us all.' Some of the kids attitudes had softened, a bit, since her diagnosis, I hoped the adults had too. Boy was I wrong! When the article posted, the few that had thawed were back with claws out. You know how a wild animal reacts when it smells blood? They attack. That's what happened with Chey. Even though the merit had not been addressed and people did not know the story, they judged her as guilty. Sadly, complete strangers seemed to have an easier time, at least, giving her the benefit of the doubt.

I think there is a mob mentality in many small towns and when the school is the biggest employer, it is even worse. I think people are often fearful of retaliation. No one likes to talk about it, but we all know it happens. Our lawyer, told us not to read the comments but how can you not? Thank goodness Chey was too tired to bother, but I had to read them--well at least in the beginning that is.

I was amazed at how people, totally removed from the situation, basically crucified my child, while knowing she had been diagnosed with cancer, no less. They had no idea at all as to what had happened and yet their comments were horrible! I was also amazed and ashamed for those that were acting like our friends to not have the backbone to be upfront. Instead, they would go in and "like" the horrible comments while telling us how much they support us. We are including preachers and teachers in that lot. Boy did it open my eyes to the callousness of others. Having said that, there were a few brave enough to openly support us and we will forever be grateful.  (Love ya, Jim, Carol, Rachel and the work bunches) 

The adults have no excuse, period, and I realize that kids are as fickle as the Texas weather so I could cut them a little slack, but only a little. It didn't seem to matter to any of them that Cheyenne had taken and passed, a polygraph in regard to the issue at hand. When you are a follower, you just jump on the bandwagon because you cannot think for yourself or lead on your own-that is just a fact of life. Very sad, but very true. I guess it is how they try and make up for not having the gifts others do and the drive to succeed. To this day though, I really wonder where their compassion is, if they even have some. I eventually stopped reading the comments and have learned people are basically mean and most are two-faced. Their lives are governed by trying to do more than the Jones' and trying to avoid their own shortcomings and failures by attacking others.

I am also amazed, that my beautiful daughter can still be civil to these heathens. She waits on them at her job and is always as polite to them as she is to any other customer. That to me speaks volumes to the kind of person she is, it is very, very hard for me though. My kids will be better than their momma.

I have said multiple times I am certainly not the best Christian, but I am always up front with everyone. You get what you see and I will tell you my opinion to your face. I am not one to wear one shirt inside the church doors and another when outside those doors. It upsets some, but it is what it is. The way Chey was treated at school is a big part of our story so it will be included in that context. I do not say much about it anymore as we are just in a waiting game, (they usually tell their lawyer when I do and then they call my lawyer.)  Eventually, we will either have a date set in Travis County or we won't, it's that simple.

Chey slept an enormous amount over the weekend. More so than just the thyroid, she was coming down with something to boot. It was par for the course, though, with court bright and early Monday morning.

Next time, Alice and the Queen of Hearts,

XXOO Make Everyday Count,

Bonnie

Home Again, Home Again Jiggity Jig

Well, it sure seems like time just flies right on by and doing this blog gives it a tailwind! I guess that means we are having fun OR I'm getting old...no need for feedback on that one.

On to our story. I have been sharing the journey we have been on since our teenage daughter was diagnosed with PTH (papillary thyroid cancer) inadvertently, after a neck injury while playing softball. At this point in the story, Cheyenne's tumor had been removed, along with her entire thyroid and a lymph node, on Good Friday 2015. We had returned home jiggity jog and we were all exhausted.

With the holiday just having passed, I would like to take a minute, again, to thank those people that helped us be able to concentrate solely on Cheyenne and not the finances. Thanks to Mr. and Mrs. David Conner, owners Dublin Golden Chick and all patrons that participated in their fundraiser. Thanks to Papa, Granny and Double N Cowboy Church for the yard sale fundraiser. Thanks to Jeanette Luckie and all my co-workers at CCMC for the lunch fundraiser. Thanks to Missy Taylor and KB Enterprises for the lunch fundraiser and to all those who donated to Chey's medical fund at Dublin National Bank. We will always hold ya'll dear to our hearts.

Even with insurance, there is always the deductible, co-pays and out of pocket expenses that have to be met annually. You add in the cost of transportation, housing and food and it doesn't take long to drain a savings account, IF you are even lucky to have one in the first place. I count our blessings every day for both Ed and I having good jobs and the help we received. We consider ourselves very lucky.

Some families, like Luke Nelson's in Stephenville, have absolutely unimaginable cost for the treatment of their child's cancer. In Luke's case, it's Neuroblastoma. He has undergone so many tests, procedures, bone marrow aspiration, months of antibody treatment, feeding tubes, morphine drips (because the pain is too much for this 4 year old to handle), in-patient stays, cost of meds for the treatments and not to mention his parents time from work and travel costs. I cannot fathom how they stay as positive as they do...Mia does an amazing job!!

Anyway, we have been very blessed,  and I want to give a little plug for them. Luke lives in the community over from us and they have a GoFundMe account set up to help with expenses www.gofundme.com/lukenelson. If you feel the need and have the ability, I am sure they could use some help...

Coming up next time:

We knew the next few weeks would be trying, we just didn't know how bad they were going to turn out....

XXOO Make Everyday Count (Happy Easter)

Bonnie

On To The Galleria, Maybe...

Sometimes when I'm writing, memories just pop into my head, I'm pretty sure I've told you this before. Usually there is some kind of trigger, like music, a smell or something someone says.  This morning as I was driving to work, I saw a lone cardinal on the side of the road. I actually have seen several of the red birds of late, but this particular one brought a face into my mind's eye's focus, Aunt Winnie.

When I was young, she was special to me. She always wore dresses with aprons tied around her waist and a bandana tied around her head. I sure loved that woman! My younger sister, Terri, and I would get to spend weekends with her often. She reminded me somewhat of Mrs. Olsen, the Folger's Coffee lady in the old commercials, except she was fluffier around the middle-you know the post menopausal look. She had an accent, or so I remember, maybe German-or not. She was the first person I ever knew that practiced xeriscaping, which is landscaping and gardening that reduces or eliminates the need for supplemental water from irrigation. Of course, I had no idea then what that practice was back then. I just knew her backyard was wilder than anyone else's around and it just thrived. Her yard was made entirely to support birds and other wild critters without much tending to. She had birdfeeders out and would put feeders of suet out in the winter. There was long grass and flowers everywhere just growing where ever they pop up.

From the kitchen window, you could watch all the going's on. She had drawings (mostly by one of us kids) taped up all over the walls of that room.  My brother and older sister were pretty talented artists and owned the majority of the artwork but I wasn't too bad myself, for a youngster. When I was twelve, I sent a drawing in from the "draw me" contest in the TV Guide and won $25. They actually called my mother and wanted me to take their course, but it was too expensive for us and she said no, shucks. I also won one of the contests on one of those scary TV series back then, I was maybe nine or ten. It was like Creature Feature or Outer Limits, one of those old shows anyway, viewers could send in artwork and they would show them at the beginning of each episode. I drew a monster that looked like he was electrically charged.

Anyway, we had a blast at her place. We would get to pick out a Hamburger Helper flavor and help cook it after Sunday church service or she would make chopped beef gravy on toast. For some reason, everything always tasted better at her house. She also had a little buffet with all different kinds of juice glasses that I loved drinking from those. I was easy to please, I guess. The absolute best part was bath time! She would save her Ivory dishsoap bottles and let us squirt each other in the tub. Gosh, there would be water everywhere, but she never admonished us even once.

We didn't watch too much television at her house, she had the little rabbit ears with tin foil wrapped on them for better reception (be honest you remember...and if you don't-you missed it.) We always took turns reading from the Bible every evening before any television and we enjoyed that time also. The last time I saw her, she was only about maybe 90 pounds and on her deathbed.  It was a very sad time but her memory stays with me always.

But back to the story at hand. When we last left off, we had just finished a huge meal after Cheyenne was discharged from the hospital where they removed her thyroid due to Papillary thyroid cancer. The kid was exhausted but since we were close to the Galleria, we had to stop by. Mistake! The place was packed, we couldn't find a parking place so Terri, (my sister who had driven down from Kansas City) paid for valet parking. It felt kind of weird, to be honest, I am too dang cheap to ever do that.  Anyway, there was a Lamborghini parked out there and that was pretty cool. We walked around the mall for awhile, it is pretty neat, what I remember of it anyway I was pretty tired too. It seems like I intended to tell more about this adventure, but today it seems like I can't recall much about it, hmm. Instead, something Chey told me keeps buzzing around.

Chey works at Golden Chick in Dublin. The owner's, Mr. and Mrs. David Connor, are wonderful people. They take good care of my daughter and were very generous to us by holding a fundraiser to help with Cheyenne's medical expenses. Chey is kind of the acting GM right now and it is sometimes a very stressful job. This is really a good thing because it makes Chey realize, even more than she already does, how important a college education is. Even though she gets extremely frustrated at the lack of work ethic some employees have, she appreciates the others that work their butts off. A hard lesson she has learned is that many people don't really give a crap about doing a good job. They are there simply for the money and to do as little as possible, she has to stay on top of these kind of employees. Thankfully, they usually don't stay around too long because she doesn't cut them much slack. She has always been diligent in her life, but after her diagnosis, it became almost a doctrine. Sometimes though, they do surprise her. She came home the other day and told me about one of the girls at work.

"Mom, you know what happened today?"

"Nope," I responded.

"One of the girls said she forgot to get me a cake," she said it very excitedly.

"A cake, why? It's not your birthday yet," I said perplexed.

"I know, right. She said it was my anniversary."

I interjected, "Your anniversary?"

"Yup, she said it had been two years to the day since I was diagnosed with cancer and I was still alive and breathing so we should have had a cake. Isn't that neat?"

I could see in my daughter's eyes that this had moved her very much. The idea that one of her work peers had remembered such a milestone and genuinely seemed pleased that she was here touched her at her core.  Most of the kids in Dublin, (that were her "friends") don't know and really don't care about this wonderful realization. What is even sadder, is that she knows that most the adults don't either. Our problem with the school district had allowed the monster side of many people to emerge en mass. Even though I believe many regret their actions, at that time, I feel they are incapable of admitting that to anyone, mainly themselves. It seems to be much easier to ignore her (or our) presence on the planet than to admit their prejudice and ensuing actions. 

This one little action of this young lady, who wasn't looking for any accolades, had simply made my daughter's day. To be honest, it made mine too! Kindness is at it's best when you aren't looking for it.

Next time, Home,

XXOO Make Everyday Count

Bonnie

Brazil or Bust a Gut! Finally!

As I found myself being temporarily displaced at work, I began looking back through the posts. I was amazed (happily) to see that we have hit our First Year Anniversary of this blogging adventure!! I also noted, that we are nearly at the two-year anniversary of Chey's diagnosis. WOW, 23 posts! I keep pinching myself because I never knew if I could really do this. So, THANK YOU, Shelby and the Good Lord.

Well, for those constant readers that have stuck by me through my huge learning curve, I've been teasing you a little with Brazil or Bust a Gut. Today, I will tell you my recollection. For those new readers, I have been sharing our journey after our teenage daughter was diagnosed with papillary thyroid cancer that was discovered accidentally on a CT scan of her neck following a softball injury. At this point in the story, Cheyenne had just had her thyroid and one lymph node removed and we are at Texas Children's Hospital waiting for discharge--so, the story continues.

After Cheyenne had recovered from the bath ordeal (LOL), she was still a bit grumpy, but she was much better than she had been as she asked, "Mom, how much longer 'till we can go?"

"I'm not sure. We have to wait until the doctor comes in and discharges you." I had answered.

"I'm ready to get out of here and get some real sleep!" She touted.

"I know, I am too." I said in complete agreement.

My sister, Terri, had completely surprised us by coming down from Kansas City the morning of Chey's surgery. Ed (my spousal unit), myself and Chey spent this waiting time chit chatting. Terri, on the other hand, was itching to take us out. She had been on her phone searching here and there for something special. "Hey, have you guys ever eaten at a Brazilian Steakhouse?" She asked.

We answered, "No."

"Oh my gosh, we have got to find one. You guys will love it!"

I could tell Cheyenne wasn't too keen on the idea, she just wanted some uninterrupted sleep time. I tried to casually dissuade Terri, but she really wanted to take us out. The discharge orders were given and we finally released. By that time, we adults were pretty hungry! Chey still seemed like she would rather go on back to the Ronald McDonald House but she never said a word.

Terri had found the place she was looking for, Figo de Chao Brazilian Steakhouse. She explained that it was an upscale Brazilian chain with an all you can eat, meat-carved at your table, experience.

"I hope this is like the one we have at home. They have an amazing salad bar with every side you could imagine." She was just gushing. "They will give you a little card that's red on one side, and green on the other. When you want meat, turn up the green side and they will bring the meat to the table and cut the serving for you. When you don't, just turn the red side up!"

I asked her, "What kinds of meats do they serve?"

She explained that there were usually several cuts of beef, pork, chicken and lamb, "But not sure of this chain."

Now I perked up at the mention of lamb. We had grown up in Iowa and we had lamb chops fairly often and I LOVE IT! Lamb is one of those meats you either love or hate, I've never really seen anyone in the middle. Doesn't bother me though, if you don't like it, that leaves more for me! The bad thing is, Cheyenne happens to love lamb also. Good thing she said all you can eat.

Ed followed Terri's directions and we arrived at the restaurant. I was a little worried that we were underdressed, it was very upscale! We hadn't planned on anything extravagant, all we had thought about was getting that cancer out of our daughter. Terri insisted that there would be people dressed as laid back as we were, she was right.

We went in and the décor was almost more Mediterranean to me. (Lol, not sure what Brazilian should look like.) There were loads of exposed, wooden beams and wines stored in mass. The tables were covered in pristine-white tablecloths and the waitstaff was dressed formally in black slacks with white dress shirts. Terri had stopped and spoken with the hostess as we were being seated.

Wow, Terri had not exaggerated at all! The salad bar was absolutely phenomenal! There was every side you could imagine. There was artichoke, asparagus, couscous, cream cheese grapes (Chey's fav), and olives of every kind. Add, mushrooms, cheeses, salads, prosciutto wraps, shrimp and items we had never seen before. (Personally, I would have been satisfied just with the salad bar.) After filling our plates, we ambled back to our table. The waiter came over and brought plantains and mashed potatoes served family style, in multi-serving bowls. Cheyenne had perked up, by this time, and I think the smells were winning over the fatigue battle and she seemed to be liking the experience.

Right behind this, the carvers came with huge skewers of meat! I really wasn't ready for meat yet, but "What the heck." I turned my card up, as did Ed and Terri, and the gut bust began. My goodness, they brought prime rib, steak, chicken, shrimp, pork and the most scrumptious lamb chops-one after another! Chey eventually turned her card up, as well. We tried a little bit of each meat produced. I was happily surprised, Cheyenne inhaled the lamb and a bit of the others. I had been worried she would not be able to eat. She and I both had multiple servings of the lamb, but Ed and Terri seemed to like the beef the best.

Finally, we were stuffed like ticks, and we turned those cards over and then they had the gall to ask about dessert! There was no way I could eat one more morsel, let alone a dessert, but Chey was game. She settled on some kind of chocolate fudge-filled molten brownie cake with ice cream on the side. When they brought it to the table, we discovered why Terri had spoken to the hostess. In bold red strawberry sauce, they had written "congratulations" along the perimeter of the plate. Terri had told them about Cheyenne's surgery and that we were celebrating her hospital release! It was really a sweet, sweet gesture.

We all sat there, a little shocked, as Cheyenne demolished that dessert. We finished up and slowly made it to the door. There is no way any of us could have moved quickly!

Next time, On To the Galleria,

XXOO Make Everyday Count

Bonnie

Please Stand By

In the midst of an office move at work I am having some technical difficulties with the next post. Please stand by!

XXOO Make Everyday Count
Bonnie

BRAZIL OR BUST (A GUT THAT IS) OR MAYBE NOT

 

Alright, we are going to fast forward here a little bit. I told you I am finding it extremely hard to deal with present day's issues while I'm re-canting the past. When I start to feel I have a handle on things, all those emotions flood over me and it's like we are there again. The emotional roller coaster has to many loop de loops, so we're going to intermingle time. Again, for new readers, I have been sharing my daughter's cancer journey after it's accidental (or God Thing) discovery after a softball injury in March of 2015. 

When Cheyenne had her last doctor's visit, six months ago or so, everything looked pretty good. She did have one lymph node that was enlarged but Dr. Athanassaki (our near famous endocrinologist) said we were going to keep an eye on it. "It's most likely reactive to a cold or allergies," she had told us. "Let's keep an eye on it." 

Our follow up was December 12th 2016.  In that six month span, Chey had found a second node and the primary one had gotten bigger. 

I remember when she found it, "Mom!  There is another one swollen! She had practically screamed.  "What do you think it means?"

I shrugged as I felt it for myself and said, "Um, we just need to let Dr. A know at the appointment and go from there."

"Well, I haven't had any allergies or mouth ulcers, so that's not it. It kinda bothers me," she snipped back.

"I know sweetie, but there isn't anything we can do until we go," I responded.

I actually put a call into the office and asked our new nurse, Jennifer if we needed to go ahead and schedule anything. In the past, with Alli, she had always been so proactive, and due to our traveling five hours to the appointment she scheduled as much as possible in one trip. Jennifer told me there wasn't anything scheduled...

So as usual, the fellow came in the room first, accompanied by Jennifer. This visit we had a very sweet, shy first year who is going to be an endocrinologist. She's from Korea and very soft spoken.  Most of you know, we are pretty outgoing individuals. Chey will say it's all me and that I'm crazy, but we both give lots of hugs and are a bit out there. I guess I just want them all to know how much they mean to us and words just can't convey the feeling. 

Jennifer was giggling as she said, "I warned her it's hugs, hugs, hugs." We all laughed, and hugged.

The fellow asked Chey to go over her history and then examined her. After the exam, Chey was sitting on the table. She said, "Mom I showed her the wrong one, this is the one that's bigger," as she palpated the node.

I responded, "It's okay, just show Dr. A when she comes in."

It wasn't very long until Dr. A and the girls came back in and we both jumped up and gave her a big hug. I noticed immediately that she had lost some weight and it made me wonder if she was alright. She was her usual eyes twinkling, smiling, jovial self. I don't know if jovial really fits because she has a very slight frame (even more so today.) Maybe I should say lively, maybe that fits better. Anyway, after we gave our hugs, I sat back down and Chey went back to the exam table. Dr. A sat down on her stool and said to Cheyenne, "So, tell me about these nodes."

Chey explained, "It's the one that was there before, but now it's bigger. There is also another one here." She put her finger on her neck.

Dr. A donned her gloves and began to examine Cheyenne. She turned to the fellow, "Did you notice these here?" The fellow had not.  "Come here and feel these."

Cheyenne's eyes were big as saucers, Dr. A was feeling under her jaw and down low on her neck, and she sat straight up on that table. I probably did the same in my chair. Dr. A said that they could all be reactive for one reason or another, tooth problems or allergies, etc. We both told her that Chey had been pretty healthy, just fatigued.  She had also gained a little weight. Chey also showed them her tattoo (you will hear all about it later) which lightened the mood.

Dr. A spoke at last, as she propped herself up against the exam table, "We are doing a new ultrasound here. It is for mapping of the thyroid and the lymph nodes in the neck. I would like Cheyenne to have one. They are very specialized, so we only do them once a week on Thursday."

She went on to explain that Jennifer would get everything scheduled and we gave goodbye hugs all around. Something was wrong though, she just was not herself and seemed to nearly run from the room.

Jennifer stayed, pulled up a chair and scooted over close to us. She had her schedule book out on her lap and she said, "Well, like Dr. A said, they only do this ultrasound on Thursday. Can you stay and do it tomorrow?"

Chey and I both blurted out "No way." Cheyenne continued, "I have a final tomorrow at 8 am, I can't miss it."

I knew there was no way in hades she was going to miss that final, she's a bit obsessive over her grades. After all the hell we went through with her high school, she was not going to let ANYTHING affect her schoolwork. For those of you who are unaware, we had a grievance with the Dublin ISD beginning in Chey's sophomore year of high school. In January 2015, the Commissioner of Education's final ruling came down in our favor. He had ruled that the school board must have a hearing on the merits of our case (DISD had declined to do so previously, saying we had filed untimely.) As of today, that hearing has not occurred. You can google our case (Texas Commissioner of Education DOCKET NO. 046-R10-02-2014 and select link Child b/n/f Parent v. Dublin Indep. Sch. Dist) if you're interested.

So, Jennifer called to the scheduler and set an appointment for January 12th. We were supposed to hang loose afterwards in case we needed to do anything further. Then she said, "Well, I do have something to tell you."

I asked, "Is she sick?" Meaning Dr. A.

"No, that's not it at all. She wants me to tell you about some changes coming up." Chey and I both sat up straighter in our chairs, this did not sound good at all. "The endocrine department will no longer be overseeing the thyroid cancer patients. All new patients will be seen in the Oncology Department.

"I hate politics in medicine!" I said angrily. "Ya'll have done too good of a job and they want your numbers!"

The main reason we had come to TCH was because of the Endocrine Thyroid Tumor Program and their rating. As a nurse and mother, I had researched endlessly. Thyroid Cancer by all accounts, should and is managed by the Endocrinologists-NOT Oncologists. I was mad as hell.

Jennifer did not respond, instead Cheyenne said, "Why would you change something that isn't broken. Ya'll have done a great job and I don't want someone else taking care of me, I will stay with Dr. A."

Jennifer told us that they were unsure, at the moment, what was going to happen to established patients but we would know when they did. We were all upset! No wonder Dr. A was visibly not herself, what a blow. 

"Well, when does the Family Board meet again?" I asked. "I will certainly give them our opinion on this subject."

I was invited, along with two others, to be the first family members on this board this past Fall. We haven't met again, but I still plan on talking about this change. Chey and I both feel this is definitely not in the best interest of the patients and decided that we will go to another facility, for future care, before changing to oncology.

With tears in our eyes, we gathered our belongings and headed to the check out counter. We were both in shock.

Next time, On With the Gut Bust!

XXOO Make Everyday Count

Bonnie

Recovery and Bathtub Comedy

I want to start of with an apology.  I feel as though I have let you, the reader, down and feel terrible for doing so. I have not posted since October. I have been overwhelmed with friends' diagnoses and an overbearing emotional detachment in our own situation. Well, I'm back! I have decided that I will begin including where we are now, with Chey's illness, so we can get to a current place in time. I believe it will keep my mind and emotions in a much better place. Hope you all are enlightened by, and possibly encouraged by the blog.

Well, we left off last time with Chey leaving the recovery room and being moved up to a room. 

Cheyenne was diagnosed with Papillary Thyroid Cancer on March 18th, 2015 and had surgery to remove her thyroid, on the following Good Friday!! Cheyenne was really out of it from the anesthesia and, to be honest, I think we were too! I know I felt exhausted and everyone else there, supporting us, had to be also. 

My sister Terri, had driven all night from Kansas City (SURPRISE!!) and had not rested yet. We all traipsed upstairs to the room. If you haven't ever been to Texas Children's Hospital, it's worth the drive just to look around the facilities. It's a world class hospital and is geared completely for the pediatric patient! (If you ever find yourself with some extra cash and are looking for a worthy recipient-TCH is your place.) When you walk down the halls there is art displayed everywhere and the majority of it has been done by patients at the hospital or by children that have donated to them. I find it truly amazing that other children take time to make someone else's misery a little easier to handle through this simple gesture.

As a nurse, I noticed all of the boards showing how much these people care about what they are doing. On any given hallway wall you will see notices of how long the staff has gone without incidence of preventable infections of one kind or another.  It is comforting for this parent, to know the nurses care so much about their charges that they are willing to put these stats out there for everyone to see.  From my medical background, not everyone is so forthright!!

When you come to the floor, you have to go through a screening and must be buzzed into the patient area. If you don't have clearance you will not be allowed to enter. I think it is a great system. Some of these children are extremely ill and their immune systems are very weak so you must be diligent. It is commendable that THC carries this safety issue as far as they do! The rooms are beautiful and spacious to boot. Chey's room had a window area that was the full length of the room and looked out over the medical district. There is a sofa that converts to a bed, (for me), plenty of closet space and a TV with DVD player.  The kiddos can watch regular TV or bring their favorite videos to watch.  Each room also has a private bathroom with a shower and tub.

Like I said, we were exhausted so Terrie and Ed had headed back to the Ronald McDonald House and I planned to tuck in on the sofa for the night. As you would expect, staff came in pretty frequently to check on Chey. They tapped her face, checked the compression leg wraps and they took blood samples often via a finger stick. For small children this is okay, but for my teenager - NO BUENO!  She was not happy with this because it made her finger so sore. She would have much rather had them draw it through the vein each time. Cheyenne slept pretty deeply in between visits, but I did not.  It absolutely had nothing to do with the hospital staff or noise level, I simply kept listening to make sure my child was breathing. For those who know me well, you can probably imagine me sitting in a ball, on that sofa, watching and getting up to tap her face myself! You betcha, I did it over and over and over again.

Morning came and Chey had a light breakfast. Ed and Terri brought mine and while they were en-route, Dr. Paul (another endocrinologist) along with one of the Residents came in to see Cheyenne.  Dr. Paul is a very tall and lanky fella.  He is a mustached-man with his salt and pepper hair swept to the side. There was a twinkle in his eyes and a crease between the brows. He also smiles most of the time. Chey was more awake, but still not herself, and was a little cranky. Now, I love my children very much, but they both have extremely dry (sometimes cutting) sense of humors. When Chey does it, it is very subtle but wicked and you just don't expect it AND when she is cranky - watch out! 

One of the things I love most about TCH, is the way the doctors are able to keep the atmosphere very relaxed. Dr. Paul is no exception, and he has quite a sense of humor himself! Anyway, Chey and Dr. Paul were bantering back and forth about her truck (a '68 Chevy) and Ag things. Dr. Paul asked her something, for the life of me I can't remember, and BAM! She nailed him. The Resident covered his mouth and cracked up, so did I. Dr. Paul never skipped a beat, he drew his imaginary sword and slashed it through the air. We all laughed so hard. Well, everyone but Chey, that is. She just sat there with a little half grin on her face, knowing she had gotten him! 

I love this place like no other, they make our troubles bearable!

After the bantering was completed, they examined Chey and gave us a run down of the plan. As you can imagine, Cheyenne was extremely tired and flat worn out, but she was restless and ready to go home. After undergoing surgery, being poked and prodded, and everything else she had gone through over the last two days - Cheyenne wanted a bath!

Here in America, we take a lot of things for granted. Sometimes it takes a shock to wake us up and realize how really lucky we are to live in this great country and have access to the things we do.  Many of these things are just a given and you don't give a second thought to not having them. Not so true in other parts of the world. Our nurse, on this shift, was from the Caribbean. She was an RN and seemed very knowledgeable about her duties.  She smiled a lot and seemed genuinely concerned about my daughter's welfare but, then we came to the tub....

When the nurse came in checking on Chey, she bent over and was tapping Chey's cheek and I asked, "Do you think it would be okay for her to take a bath?"

She looked at me as she cocked her head to the side and said, "What's a bath?"

I just looked at her dismayed, very briefly, and responded, "You know, in the bathtub." She still didn't seem to comprehend what I was asking. 

Cheyenne looked at me, her eyes wide with wonder and maybe a little terror too. She certainly was wondering what I was going to say.

I tried to explain.  "You know, in the tub. You run water in it and then splash water up on you and bathe, like a shower but sitting down in the tub."

She didn't say anything and turned and left. I know my face was turning red. I did not want to embarrass her or hurt her feelings but I was afraid I had.

My sister looked at us and said, "You've got to be kidding me, she doesn't know what a bath is?" 

And so began our discussion about how other places do not have what we consider basics and how so many things are totally foreign to them. I had gone to Jamaica in my early 20's and on excursions into the countryside, I saw the squalor so many native people lived in. Many of the homes were just little shacks and I don't think they, individually, had running water. Even at that age it just broke my heart and I was much more grateful for what I had.

Having said that, we were all a bit amazed that with her education level she still did not know what a bath was. The only thing we could imagine was that she was envisioning a bed bath, which would have been extremely awkward for my kiddo. After a while, when she hadn't returned, I did what I do and ran a bath. Cheyenne was still pretty wobbly, so I assisted her to the bathroom and closed the door.  I helped her get undressed and into the tub. 

She looked at me as I sat down on the edge of the toilet and said, "Okay, you can leave now!"

Of course, I didn't.  "Are you nuts?  I can't leave you in here alone when you're halfway to the moon." 

She rolled those pretty blues at me but gave up the protest.  It ended up that she really did need me.  She was sore and very worried about getting any water on her incision.  I enjoyed the heck out of it!  The memories of bathing my babies came back in a rush and it was really hard to contain them and not bust out bawling. I just kept talking to her and kept the tears at bay. We hurried along and even so, she was shivering. I helped her out of the tub and swathed her in towels and she finally got to get into her own jammies.

Eventually, the nurse did come back in and told us a bath would be fine. We all just looked at each other, smiled, and said, "Thank you." 

I was relieved the group hadn't spilled the beans that we had already done it!  I know it must shock some people when I just take things into my own hands, but it is the only way I know how too.  If I see something that needs done, I just take care of it. We tidied up the room as Chey napped and waited to see about discharge.

Next time, Brazil or bust...

XXOO Make Everyday Count

Bonnie