I Was One of the Lucky Ones

I was one of the lucky ones.

I feel the need to share my twelve year journey. It hasn't been easy. It has been filled with tears, frustration, loneliness, defeat, road blocks, perceived dead ends, road diversions, loud voices, baby steps, inspired people, determined people, caring people, new roads taken, different options, tenacious behavior, and too many experiences to list.

I have an eighteen year old that is twice exceptional. That doesn't mean that he is twice 'as good' as the next child. It is a term that is unfamiliar to a lot of people, even educators. I chuckle at a memory I have of sitting in an IEP school meeting. (Individual Education Plan). I don't know if I will ever forget the blank stare of one teacher's face when I said 'my child is twice exceptional, or 2X, as it is often called. The look that I got felt like he was thinking 'oh, you are one of THOSE parents who think your child is SO great”. Yes, I do think my kids are pretty great but that is NOT what it means to be 2X or 2e.

Twice exceptional. The term twice exceptional, often abbreviated as 2e, has only recently entered educators' lexicon and refers to intellectually gifted children who have some form of disability. He has a vocabulary two levels above her peers, but cannot calculate 4 + 6. He can read a symphony but cannot hold a pencil to write his own name. Are they gifted or learning disabled? The answer is, both.

If I haven't lost you yet, I want to share with you a portion of an article from Eduction.com.

Gifted children with learning disabilities (GT/LD) are known as "twice exceptional." Contrary to popular belief, it’s actually a common issue. What is uncommon is recognizing that the child is twice exceptional in the first place.

Until fairly recently, finding a kid marked both “gifted” and “learning disabled” was extremely rare. Mostly because no one was looking for it. In the school environment, where kids are routinely put on a track marked “honors” or “remedial,” “special needs” or “college prep,” evaluators rarely looked for combination children. They didn’t expect a gifted child to have dyslexia, or realize the child with ADHD might also be brilliant at calculus.

Sally Reis, principal investigator for the National Research Center on the Gifted and Talented at the University of Connecticut, says that “identifying GT/LD children is very hard because they look to the rest of the world like average achievers. Their superior gifts may be compensating for and masking their learning disability.” And in turn, their disabilities may disguise their giftedness.

In fact, although estimates say that as many as 20 percent of students have some form of learning difference, most twice exceptional children are never identified. Parents and educators tend to throw all their strength at “curing” the disability, dismissing the hidden talents they discover along the way. When they do recognize giftedness, they expect kids to “work harder” or “pull it together.” Reis says, “It’s like saying to a blind person, if you really work hard at seeing, you’ll be able to see.”

So how can we help a child we suspect is twice exceptional? The first step is diagnosis. Qualities and symptoms will differ, depending on the disability holding them back, but here are a few signs common in GT/LD children:

• An outstanding talent or ability
• Discrepancy between expected and actual achievement
• Difficulty getting along with peers
• Low self-esteem
• Evidence of underachieving
• The appearance of laziness and an inability to focus or concentrate.

One of the main problems for twice exceptional children is the fact that today’s schools are very heavily focused on reading and writing. Unfortunately, these are two of the most common problematic areas for gifted children with learning disabilities. Quite often it is difficult for them to learn and excel in a heavily linguistic and auditory school environment.

(I have to get back on track and get off my soap box, but if you want to know more in this area, look up this other article too:

Dual Exceptionalities

By Colleen Willard-Holt — Council for Exceptional Children (CEC), Division of Learning Disabilities (DLD)

Updated on Mar 8, 2010

Gifted students with disabling conditions remain a major group of underserved and understimulated youth (Cline, 1999). The focus on accommodations for their disabilities may preclude the recognition and development of their cognitive abilities. It is not unexpected, then, to find a significant discrepancy between the measured academic potential of these students and their actual performance in the classroom (Whitmore & Maker, 1985). In order for these children to reach their potential, it is imperative that their intellectual strengths be recognized and nurtured, at the same time as their disability is accommodated appropriately.

OK. Now if I haven't lost you....continue with me.

I have SO many memories swirling through my head, I don't know where to start. Most of them are not great ones, but filled with frustrations and uncertainty.

When my last son was born, all seemed to be normal. It was a normal pregnancy, normal delivery, normal everything. EXCEPT, he didn't start to talk until he was three years old. I thought this was due to continuous ear infections, with tubes in and tubes out, stays in the hospital because of contagious infections. He was in isolation for about four days during one hospital day. Tonsils out, adenoids, out....All the challenges of non-stop ear infections. We had early intervention specialist in our home, teaching us/him sign language so we could communicate, trying to relieve frustration from communication challenges.

We were in a program with other families of children, mostly boys, that weren't speaking. We tried every avenue that I could find. I remember I knew something was different when we were at a 'wet/dry table playing with different textures. This certain day was spaghetti. He was about 2 years old and would NOT touch that for any bribe I would try to give him. I recalled when he was about that same age, shopping at SAMS and I would place ground beef in my shopping cart. He would take one look at it and then lean over his seat and vomit on the floor. I knew he had a problem with textures. I couldn't get him to wear certain clothes because they 'bugged him'. I remember telling my husband to 'choose your battles', if he didn't want to wear a belt, or certain pants, or shirts that buttoned down, let's choose another battle to conquer.

Now, my brain is REALLY swirling with memories. I think I need an editor to help me put all this down properly. LOL.

Let me summarize some things to make this story go faster. By the age of three, he finally started to talk.....and started reading at the same time. I thought he was just able to memorize easily, but he was reading three grade levels above his age group. Elementary school was a challenge for us. I knew something was different but didn't know what it was.

I WAS ONE OF THE LUCKY ONES. He was placed with a Kindergarten teacher that knew about love and touch. She knew exactly how to calm him down when needed, how to start to direct me in getting some needed guidance. MARY ARNOW, I will be forever grateful for our paths crossing.

In third grade, I was ONE OF THE LUCKY ONES. Adam was placed with Melodie Larsen. She was a veteran school teacher with years of experiences. It was this year that we were able to set up our first IEP. She taught with such patience that I finally had hope for my son.

Sadly, that didn't last. The next year, we decided to move our family from South Ogden Utah to Hurricane Utah in Southern Utah.

New struggles started again. I was continually frustrated with the school principal and the teacher assigned to Adam. He had a great speech teacher but that is the ONLY thing I can say good about that school. I got absolutely no where with the school principal. I don't know why he ever went into teaching or administration because he was among the worse that I had ever ran across.

So, I tried home schooling. That lasted three years, two for both of my boys. Then I put my oldest one back into public school and continued on with Adam for another year alone at home.

Some things worked, some things didn't . The thing that worked was I was able to take him off all the medications the doctors and teachers seemed to think he needed. No medications were working. Diagnosis: Oh, he is ADD, or maybe ADHD, or maybe he has high functioning Aspergers, or...whatever they thought.

It took EVERY ounce of patience that I had to keep going. And, I admit, some days I didn't do too well. When I got to the point of screaming, I had to leave the room. Adam could not do the grade level work required of him and there was no way to customize the lesson plans to meet his educational needs. He hated math because he couldn't do it. His brain just could not compute where needed. However, he did pretty good with language and reading.

Let me insert a comment here. Adam went through a few IQ/Abilities testing. A Test called Woodcock and Johnson was one of them. Adam always scored 'off the charts' in the reading and language but hardly even 'made the chart' in math skills. He couldn't write physically. We tried the key board and head phones and dictation and me doing his writing. We had him tested for occupational therapy classes. We tried big pencils, and smaller pencils. We tried pens and markers. He just couldn't write/print well at all. It was a constant battle.

By his Freshman year, I was physically and mentally exhausted. I felt as if I had given it my all. I couldn't home school anymore. I was making myself physically sick. Without any options left, I put him back into public school. I felt as if I had failed him.

BUT, I am one of the lucky ones. His sophomore year, we were given a miracle in the form of a teacher name of Suzan Ort. And his Junior and Senior years, the second miracle was named Sarah Beth Gibbs. These teachers saved Adam's life. School was NOT easy for him. These two Special Ed-teachers were able to make accommodations that no other teacher even suggested. This is where I will say that the PUBLIC school system could have failed my son BUT these two teachers DID NOT. These teachers did not give up on him the years they had him.

They understood the term 'twice exceptional' and knew how to go about forming a team of support by communicating with other teachers, working on less stressful lesson plans, making adaptation of time schedules, test schedules, stress relief situations, and anything else they could think of that he needed during these years.

I have to say that Ms. Gibbs is totally responsible at seeing my son receive his high school diploma. At least, that is how I feel. Without her, Adam would have been lost in the system. He would have been overlooked in the general population.

For two years in public school, Adam did not have ONE friend, did not attend one activity, did not attend one dance, he was NOT included in anyone's activities nor did he get invited to join in anything. Why? Because he was 'a bit different'.

The ONE highlight of Adam's high school years was when he competed in the Christmas time talent show. When he asked me if he could participate, I hesitantly said yes and asked him what he would do. When he told me 'play the guitar' I responded with 'do you know how”. And he answered 'yes'. And when I asked him 'how', he told me that 'I taught myself'. I had no idea that he even had picked up my old guitar. I found out that he could listen to a song on you tube and he could pick out the notes and play them. He won the contest that year. The next day was the beginning of Christmas break.

His junior year, that was the only thing is participated in. After Christmas break, no one remembered that he had won and life went back to the lonely stage, where kids would push him in the hallways, bump into him and laugh, try to run him over in the parking lot. And the lists go on.

Ms Gibbs didn't forget however. She praised him and talked to him about his music and really cared about Adam. Adam,the person, Adam, a human being. Adam, himself. She understood what it meant to be 'twice exceptional'. Adam was.

The other life changing event that took place during this same time period was that Adam was hired on at our local movie theater. This is where he met his PUBLIC life saver. His new boss was/still is Rick Moser. He saw something in Adam. Adam blossomed when he walked into this theater. While at school, when Adam was getting bullied almost every day, he found refuge at work, where people treated him with respect. They talked to him. They included him. He was a person. He was a human being.

Again, I was one of the lucky ones having these two teachers and this one Boss enter into Adam's life.

Adam's senior year started out challenging, but by the second semester, Ms. Gibbs had a balance of online classes and a few in house classes that FINALLY were working for Adam.

Another challenge that Adam faced with courage and triumph, was in January (2018) his dad had to undergo a stem cell replacement for multiple myeloma cancer. Adam stayed alone for the 6 weeks that we were gone to Salt Lake City/Huntsman Cancer Institute for treatment. He did his own cooking, got himself up most of the days for school and got himself to work every shift assigned to him. He had Angel neighbors eyes watching out for him, his grandmother came for a week and stayed with him and his work was his safe refuge.

Last week,(thursday April 12th) Ms. Gibbs called me and said that Adam had almost all the credits needed to graduate. He now had two options. He could stay on the 'A' schedule classes and attend them the rest of the school year or he could finish up two online classes that he had already started. One was 70% complete, the other only 30% complete. I was sure that Adam would take the option A but to my surprise, he chose the online classes. One was a government class and the other an Health class. He told this to Ms. Gibbs on Friday, April 13^th.

On Monday , April 16^th, Adam put a certificate on top of my lap top. I am going to try to attach it at the end of this story. It was a certificate that he made the third quarter Honor Roll. This was mainly the 6 weeks we were gone for cancer treatments. He had a 3.7 GPA.

Yes, I was completely caught off guard. BUT, not as off guard as when he came to me Tuesday morning, April the 17^th and said...”I'm done'. I thought that he meant, he was done with school/ fed up. And he said, with this Cheshire looking smile on his face, “No, Mom, I'm done WITH SCHOOL'! I was in complete shock. SO much so, that I did not tell him, but I called his teacher to confirm this. ! Lol. Adam has worked almost non stop ALL weekend long completing his two online classes. Yes, He is done.

Twelve years of school, done. Twelve years of IEP's done. Twelve years of specialist and testings and everything else....he was done. His teacher did tell me that he needed to finish one more IQ/Competency testing, the Woodcock-Johnson testing.

He did that on Wednesday, April 18^th. She called me with the test results. I. WAS. STUNNED.

She said, I have to tell you about the results. He was 'off the charts' on everything except this one small section of math skills that he struggled with for 12 years. His reading, language skills, comprehensive were above two plus years of COLLEGE. She reminded me that his IQ was extremely high, that his scores were outstanding. You still can not read his writing, he still has terrible dexterity skills, except he can sure play a mean guitar.....all self taught, of course.

Yes, he is 'twice exceptional'. If you are reading this and this sounds like YOUR child, I encourage you to FIGHT with everything in your might for your child. DON”T give up. Work until YOU find the RIGHT thing for him/her. You will have to fight the school system in many areas!! MANY, MANY times I wanted to give up. I know this story is long in reading, but I have only SCRATCHED the surface of the amount of meetings, lectures, classes, articles, etc that I researched. I stuck my neck out. I was put down by some educators, Ignored by principals. Thought of as 'one of those mothers' who thought their child was the best. I can not even begin to tell you the amount of tears I shed, the sleeplessness nights I had, the weight I gained. The gray hairs, I have. I can't tell you how many times, I wanted to give up, to even run away, to escape, etc. BUT, I did not.......

Adam does not want to walk with his classmates at the formal graduation. He doesn't have good memories of his high school years. It is so sad to me, I wished that one classmate would have found a connection with him and included him, but not one did. He is done with those twelve years.

But.......

I was one of the lucky ones. I have had a few great adults that crossed paths with me and my son that have made all the difference in his life.

I will be forever grateful.

A card for Ms. Gibbs.

The certificate that certainly (pleasantly) surprised me.

Matthew, left would read to Adam, left at a very early age. 

Adam, April 2018

At the talent show his junior year. 

Softy and tenderely, Jesus is Calling......

     Driving in the car today, heading toward the pharmacy to pick up yet ANOTHER prescription for Gus, this song came on my CD player. I had to keep hitting the replay button. I listened to it all the way to Walgreen's and back home again. I think I needed to hear this today.....
     Softly and tenderly, Jesus is calling.......
This has been another crazy week. Tomorrow, March 17th, St. Paddy's day to some, will be our Day Plus 50!!!!. Gus will be 50.... ( ok, of course his immune system will be.) 50 DAYS old. We are half way to the goal day 100.
    THE day.. Half way to the mark of when he can do certain things again without so much precaution, like play in the dirt, aka gardening,  swim in the pool, eat deli sliced meats, not have to wear his mask ( even though half the time he forgets to wear it now), nuzzle the dogs, stay in the room when I vacuum, and the list goes on.
     So, you are probably asking "Well, how is Gus doing now?". He has gained TEN very needed pounds. He is eating better and still struggling with getting enough fluids in him. He has been coughing a lot lately, so we went to the Doctor today for a culture. It came back POSITIVE for Influenza B. Google tells us that "influenza B is less common than A but still causes outbreaks of seasonal flu. The doctor has started him on Tamiflu, which doesn't cure the virus but will cut down on the length of the illness time. He has already taken his first dose. Guess I will get out the Lysol wipes again. And the spray. And the....etc. .well, you get the idea.
     Adam and I have seen a change in Gus' personality since this stem cell treatment. I try to tell Gus about it and it makes him very angry at us. He doesn't act out in front of other people but I see him lashing out at Adam and me more frequently. He still is forgetting where he puts the keys, or his shoes, or his wallet, or many other items. I understand that it is frustrating to him. I am literally praying that I can find a way to cope with this behavior. He is demanding of my time.... get me this, get me that, go do this, etc. I know it is because he doesn't have the strength to do it all himself. Some days he tries, and then he is down for 2-3 days.  On this past Tuesday, I went to help a friend all day. I came home and Gus and his friend had cleaned out all MY stuff from the garage. I just sat down and cried. It might have been junk to someone else, but I had new stuff in that area that they had just thrown out or taken to the DI (donated). I am still upset over it. Nothing of Gus' was gone that I could see. He told me he was doing it for me 'so I could park in the garage'. Hurrump......I am still parking in the driveway. And now I am looking for my bike cover (gone) and a new spring wreath to go on my front door, since my other new ones were thrown out. Arrgg...... It is probably just a mom thing.....oh well......
   Anyway, this has been a stressful week all in all. On the bright spot, we have received some much needed rain in our desert area. Today it is still cloudy and hopefully, tonight or tomorrow we will get some more rain.
     I understand the pressures on the caregiver of those that are ill. It is a balancing act to meet his needs and my own needs. I have cried more this week than any week yet. I think that is why when this song came on my CD today, I had to listen to it over and over and over.
I think it was a good reminder of where I need to place my burdens, and Who it is that will carry those burdens for me. And Who it is that will get me through these very changing life situations.

     Softly and tenderly, Jesus is calling.... Calling for you and for me. Patiently Jesus is waiting and watching, watching for you and for me! Come home, come home! Ye who are weary, come home! Earnestly, tenderly, Jesus is calling. Calling O sinner, Come home. 2) Why should we tarry when Jesus is pleading---pleading for you and for me? Why should we linger and heed not His mercies...Mercies for you and for me?  Come home! Come home! Ye who are weary, come home! Earnestly, tenderly, Jesus is calling. Calling, O sinner, come home!!  
     I KNOW where I need to turn for strength........

And our journey continues.........

   

   

The School of Life and Journey Update

I watched this episode of 'Music and the Spoken Word' this morning and thought it was very applicable for our life right now. I wanted to share this as the beginning of this post. Of course, the highlighted areas are my markings. 


The School of Life - Sunday, March 4, 2018
Have you ever thought of life as a school? There are some obvious similarities-both give us many opportunities to learn. Both provide teachers and tutors to guide our learning. And in life, as in school, we have experiences that could be considered tests, and they are rarely easy.
In life, the tests may come in the form of pain, sorrow, and disappointment. Despite what a student might tell you during final exams, academic tests don't usually require so much suffering. But if we think of life's hardships as a kind of test-as part of our education-we might find more purpose in them and even find them valuable.
A religious writer from the early 20th century said this about the school of life: "No pain that we suffer [in life], no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable…. It is through sorrow and suffering, toil and tribulation, that we gain the education that we came here to acquire."

As difficult as it sometimes is, the curriculum of life is perfectly suited to teach us what we need to learn. Life can teach us wisdom, refine our desires, and soften our attitudes. It can stretch us and help us grow and improve. And while life might seem a lot easier if it were pain and trouble free, it would not be sweeter. We know the sweetness of life because of-not in spite of-the bitter. We know happiness because we know sorrow. We appreciate light because we have experienced darkness.

That doesn't mean we welcome such tests. But when they come, as they do for all of us, it helps to see them as opportunities to learn and grow. After all, the most meaningful learning takes place outside of a classroom, in the school of life.

-Lloyd D. Newell

1. Orson F. Whitney, in Spencer W. Kimball, Faith Precedes the Miracle (1972), 98.

Isn't this great words of wisdom? When I heard it, I thought to myself 'I need to read this so I can remember this more'. So, I thought if I included here, I can refer back to it often. 

 

     A lot of people are asking 'how are you doing'? I wanted to give you some more information to help you understand more what is going on in our lives. 

     Even though Gus is home from the hospital, he is far from recovery. Living and caring for yourself at home after a stem cell transplant requires special care and attention for the first 100 days AFTER the transplant. Infection is one of the biggest risks patients face after a bone marrow or stem cell transplant. The treatments received before the transplant temporarily disable your immune system. It can take up to ONE YEAR for the immune system to recover completely. 

     Everyone carries germs on the skin and inside of the body that do not cause problems UNLESS a person has a weakened immune system. Transplant patients are at high risks for infections caused by these usually harmless germs. 

     Crowds of people raise exposure to harmful germs and viruses. Construction sites and homes that are being remodeled are also hot spots for bacteria that can cause pneumonia. Some of the activities that Gus CAN NOT do are the following: 

He can't clean up after the dogs. He CAN NOT sit on grass, logs, or dirt without a blanket. He CAN NOT allow his skin to have contact with soil, lawn waste or compost. He CAN NOT change the water in flower arrangements or even handle plants. 

     I found it enlightening that while in the hospital the nurses aid came in EVERY TWO hours to change Gus' drinking water. Even though it was  'good' drinking water, they did not allow him to drink anything that had sat at room temperature for more than two hours because of the possibility of bacteria growth that could occur. 

     Here we move to Southern Utah for the sunshine, BUT the chemotherapy that he received predisposes him to skin cancer, so he MUST avoid getting sunburned. He needs to avoid the sun, both indirect exposure and through windows. 

     FATIGUE: Gus will be fatigued more than you would expect, especially for the first few months after the transplant. He has to conserve energy when he can. It is even suggested that he brushes his teeth sitting down as to conserve that little bit of energy. Cancer-related fatigue is different than other types of fatigue. It can be overwhelming. Resting doesn't always help it go away, and it can take a while for fatigue to get better.

     Gus has to wear his HEPA filter mask when he is in crowds for at least THREE months after transplant. 

And this information was surprising to me: Gus will have to receive some childhood IMMUNIZATIONS again... Remember....EVERYTHING was wiped out with the chemo treatments. This certainly makes sense to me, but I hadn't thought about it at first.

      Gus will not be able to clean OR swim in our swimming pool until he is cleared by the Doctor. 

I am pleased to report that Gus is eating a bit better since we have been home. I think there is really something  to say for preparing your own meals. Today we had ribs, and Gus ate 1/2 slab of them. This was WONDERFUL for me to watch. Especially because he has lost 35 pounds during the past two months. 

     We have been given lists of food guidelines to be followed for patients with weakened immune systems. The DOs and DON'Ts are important. Sometimes foods that we eat can carry germs that can put him in danger. I didn't think about these things in the past, but as I read and reread these lists, it TOTALLY makes sense to me ESPECIALLY because of his weakened immune system. It takes me much longer now to grocery shop, because I am reading all the labels......is it PASTEURIZED, is it low in potassium, what is the sodium content, etc.  Small fruits that can NOT be washed are a no-no....like raspberries, black berries, etc. Strawberries are okay because they are large enough to be washed with out being smashed all to pieces. Can you get an IDEA of what it is like to prepared foods for him. I haven't even mention that meats, even pre-packed deli meats, have to be cooked to a certain temperature.  It is a general rule now that if the PUBLIC has access to 'it', such as salad bars, food from bulk containers, etc, that it is a DO NOT USE rule. He can not have anything from the deli that has been sliced because  the meat slicer could carry a left over on it. Also, he can not have SOFT SERVED ice cream for the same cleanliness reason. 

     If someone has been given a flu shot or other vaccine that uses a 'live virus', Gus can not be around them for 6 days. He can not be around someone who  has had the Shingles vaccine for the same amount of time. Of course, he CAN NOT be around anyone with a runny nose, or cough or flu, etc. 

     Gus has to use BABY PRODUCTS on his skin, hands and head. Other products are too harsh for him right now. He can not be in the room with me while I am dusting or vacuuming until 30 minutes after I am done. Everything needs to be as clean and dust free as possible. AND THE LISTS GO ON AND ON AND ON...........LOL.

     Now, maybe you can see the GRATITUDE that I feel from having my neighbors come in and SUPER CLEAN my home. They organized and reorganized, they dusted, and mopped, and wiped, and polished and did more than I can truly explain. It was totally the WORK of ANGELS. I could have never done all that they did. I am eternally grateful for their services.  

     As of TODAY,, Gus is day PLUS 36. That means that his immune system is 36 days old, just like a new born baby. Lots and lots of precautions still has to be taken. He still tires easily and has to take multiple naps during the day. He is still on hand full of medications but in two more days, that will reduce by three pills. !! HURRAH....that is a significant when you are taking TEN a morning, THREE in the middle of the day and FIVE at night. And this is a guy that pre-cancer would NOT even take a Tylenol.

     The one thing that I haven't mentioned is Gus' ability to concentrate. His short term and long term memory suffered from the chemo. It should come back. But, I find Gus struggling to find a word or thought at times. He has to be reminded a few times to do certain things....like "drink, drink, drink...Put on your mask, wear your hat. And the most common is 'NO you can NOT do that."  Yes, I have to play the role of mother at times.....

     Thanks for continuing this journey with us.  Now you can see why this thought struck me so dearly this morning:

No pain that we suffer [in life], no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude and humility. All that we suffer and all that we endure, especially when we endure it patiently, builds up our characters, purifies our hearts, expands our souls, and makes us more tender and charitable…. It is through sorrow and suffering, toil and tribulation, that we gain the education that we came here to acquire."

Until next time........

     

How we respond is a CHOICE....

     I almost called this post; "This too shall pass....second time". I realized I have already used this title. But, I feel like we are on a merry go round. Been there, done that. Here we go again.
     Last Thursday, we went in for early morning clinic. I was SO ready to be going home on Saturday. I had even posted it on Facebook (you know, it's offical there), only to be disappointed when instead of being released, Gus was RE-ADMITTED to the hospital. He was having lower GI challenges and all the week since being released the first time, he was going into outpatient clinic getting fluids pumped into him. In so doing, it threw off his sodium, potassium and other electolytes. So they admitted him to balance everything out again. I had to leave the hospital, go back to Hope Lodge, pack a bag of clothes for us and return to the hospital. The rules at Hope Lodge is that the caregiver can not stay there unless the patient is with them. So, back to the hospital I went to sleep on the couch in his room. However, I do have to admit, that it is actually pretty comfortable for being a couch.
     We stayed three nights, Thursday night to Sunday morning and they are ready to release him. They said there was 'no medical reason to keep him'.  I wanted to stay one more night because he has a 7 am. clinic appointment on Monday morning and then a possible Radiology appointment to pull his chest port out. I was a little frustrated.His lower GI problem has not been resolved but I guess that didn't matter to the rounding physician.  We made it back to the Lodge and within 40 minutes, he was throwing up again. He has just rested the rest of this afternoon and hopefully, by clinic time in the morning, he wont be dehydrated again.
     I know there is a lesson for me to learn in all of this someplace.
Elder Dallin H. Oaks has taught: "Healing blessings come in many ways, each suited to our individual needs, as known to Him who loves us best. Sometimes a 'healing' cures our illness or lifts our burden. But sometimes we are 'healed' by given strength to bear the burdens placed upon us.  In Alma, they 'did pour out their hearts to Him in regards to their challenges. In response to their faith and silent prayers, the Lord responded: "Be of good comfort....I will....ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs."  Whatever change in life's circumstance may come our way, and whatever unexpected path we may have to travel, how we respond is a choice. Turning to the Savior and grasping His outstretched are is ALWAYS our best option.
     Elder Richard G. SCott taught this eternal truth: "True enduring happiness with the accompanying strength, courage, and capacity to overcome the most challenging difficulties comes from a life centered in Jesus Christ....There is no guarantee of overnight results, but there is absolute assurance that , in the Lord's time, solutions will come, peace will prevail and emptiness will be filled."
     This is the lesson to myself. Even though I missed the visit from my mom from Fla. and I missed my son, Adam's, 18th Birthday, I will at one point get to make that time up again. I was needed to be with Gus at Huntsman. Even though, the journey has been long and I am soooooo tired, I need to strengthen my faith and leave my burdens at the feet of Christ. I know that He will strenghten me.
     Even though at moments, I have been a bit grouchy, this too shall pass.....a second time. And how I respond is a choice....MY choice.....
     Thanks for traveling this journey with me.

30 days since stem cell transplant.............This is suppose to be the 'magical' number. 

I wanted to add this article to my blog. This is a REAL thing. And Gus has it already. I really do have to watch him like a toddler. Today in clinic, I had to remind him to put on his shoes. Yesterday, he left the orange juice out on the community counter (where you share foods if you want to).

We have joked about chemo brain, but it really is a 'thiing'. He found this paper yesterday, in the cancer library here at the lodge. I wanted to include it because our friends and family need to understand what he is going through. He isn't being an 'air head'. The chemicals in the chemo really do fog the brain. 

So, this is my serious post for the day. 

Side note: Gus was seen in clinic today again. He has lost more weight. He is now 150 lbs. He received one liter of fluids. The PA told him he needed more sodium so we stopped and picked up some gatorade. He has been drinking it but diluted it down. The dr said 'no-go'. He needs the salt. So, full strength it is. 

We are back from clinic, had lunch, and he is now laying down. It really does wear him out to go back to the hospital for outpatient clinic. I know we are not suppose to compare, but we talked with a guy yesterday that had an 'allo' transplant. That is one from a donor. He is about 60 days out. Those people have to be here 100 days before being released. This guy was already walking up to 8 miles a DAY. Our jaws dropped. Gus is only 21 days post transplant( he is an 'auto' used his own stem cells) and he still has very little engery. The added fluids are helping but he is a bit slow to recover. Some of this is due to his pneumonia and the high dose of antiobiotic he has to take. BUT, like the Doctor tells us 'just take ONE day at a time'.

So we are.....

I hope you enjoy this article......

Chemo Brain

This information is about adults with cancer. To learn more about the effects of cancer treatments in children (including brain problems), see Children Diagnosed With Cancer: Late Effects of Cancer Treatment.

For years people with cancer have worried about, joked about, and been frustrated by the mental cloudiness they sometimes notice before, during, and after cancer treatment. Even though its exact cause isn’t known, and it can happen at any time when you have cancer, this mental fog is commonly called chemo brain.

The sometimes vague yet distressing mental changes cancer patients notice are real, not imagined. They might last a short time, or they might go on for years. These changes can make people unable to go back to their school, work, or social activities, or make it so that it takes a lot of mental effort to do so. Chemo brain affects everyday life for many people with cancer.

What is chemo brain?

Here are just a few examples of what patients call chemo brain:

• Forgetting things that they usually have no trouble recalling (memory lapses)
• Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”)
• Trouble remembering details like names, dates, and sometimes larger events
• Trouble multi-tasking, like answering the phone while cooking, without losing track of one task (they’re less able to do more than one thing at a time)
• Taking longer to finish things (disorganized, slower thinking and processing)
• Trouble remembering common words (unable to find the right words to finish a sentence)

Doctors and researchers call chemo brain many things, such as cancer treatment-related cognitive impairment, cancer-therapy associated cognitive change, or post-chemotherapy cognitive impairment. Most define it as a decrease in mental “sharpness” – being unable to remember certain things and having trouble finishing tasks or learning new skills

How long chemo brain lasts is a major factor in how much it affects a person’s life. When it starts, how long it lasts, and how much trouble it causes can vary a lot.

For most people, brain effects happen quickly and only last a short time. Others have long-term mental changes. Usually the changes that patients notice are very subtle, and others around them might not even notice any changes at all. Still, the people who are having problems are well aware of the differences in their thinking. Many people don’t tell their cancer care team about this problem until it affects their everyday life.

What causes chemo brain?

Beyond the chemo brain symptoms that start during and just after treatment, there are some cases where brain symptoms start and even get worse after treatment is over. Many cancer treatments, including certain kinds of chemo and radiation, can cause short-term, long-term, and delayed problems.

Studies suggest that there may be more than one cause of chemo brain, especially for the short-term symptoms. Some people with cancer have very real brain problems even though they haven’t had chemo. Still others notice problems when getting hormone treatments, such as those used to treat breast or prostate cancers. For some, problems start after surgery. Along with chemo, many different things can worsen brain function.

For instance, brain function problems could be caused or worsened by any one or any combination of these factors:

• The cancer itself
• Other drugs used as part of treatment, such as steroids, anti-nausea, or pain medicines
• Surgery and the drugs used during surgery (anesthesia)
• Low blood counts
• Sleep problems
• Infection
• Tiredness (fatigue)
• Hormone changes or hormone treatments
• Other illnesses, such as diabetes or high blood pressure
• Nutritional deficiencies
• Patient age
• Depression
• Stress, anxiety, worry, or other emotional pressure

Most of these cause short-term problems, and get better as the underlying problem is treated or goes away. A few, such as depression, can cause long-lasting brain problems unless the cause is treated.

What can you do to manage chemo brain?

Day-to-day coping

Experts have been studying memory for a long time. There are many things that you can do to help you sharpen your mental abilities and manage chemo brain. Some examples are:

• Use a detailed daily planner or your smart phone. Keeping everything in one place makes it easier to find the reminders you may need. You might want to keep track of appointments and schedules, “to do” lists, important dates, websites, phone numbers and addresses, meeting notes, and even movies you’d like to see or books you’d like to read.
• Exercise your brain. Take a class, do word puzzles, or learn a new language.
• Get enough rest and sleep.
• Move your body. Regular physical activity is not only good for your body, but also improves your mood, makes you feel more alert, and decreases tiredness (fatigue).
• Eat veggies. Studies have shown that eating more vegetables is linked to keeping brain power as people age.
• Set up and follow routines. Try to keep the same daily schedule.
• Pick a certain place for commonly lost objects (like keys) and put them there each time.
• Don’t try to multi-task. Focus on one thing at a time.
• Ask for help when you need it. Friends and loved ones can help with daily tasks to cut down on distractions and help you save mental energy.
• Track your memory problems. Keep a diary of when you notice problems and what’s going on at the time. Medicines taken, time of day, and the situation you’re in might help you figure out what affects your memory. Keeping track of when the problems are most noticeable can also help you prepare. You’ll know to avoid planning important conversations or appointments during those times. This record will also be useful when you talk with your doctor about these problems.
• Try not to focus on how much these symptoms bother you. Accepting the problem will help you deal with it. As many patients have noted, being able to laugh about things you can’t control can help you cope. And remember, you probably notice your problems much more than others do. Sometimes we all have to laugh about forgetting to take the grocery list with us to the store.

Tell others

Another thing you can do to better manage chemo brain is tell family, friends, and your cancer care team about it. Let them know what you’re going through. You may feel relieved once you tell people about the problems you sometimes have with your memory or thinking.

You’re not stupid or crazy – chemo brain is a side effect you can learn to manage. Even though this isn’t a change that’s easy to see, like hair loss or skin changes, your family and friends might have noticed some things and may even have some helpful suggestions. For instance, your partner might notice that when you’re rushed, you have more trouble finding things.

Tell your friends and family members what they can do to help. Their support and understanding can help you relax and make it easier for you to focus and process information.

Talk with your doctor or cancer care team

If brain problems cause trouble at work, talk with your doctor to try and pinpoint what’s causing your brain fog and what can be done about it. This is especially important for people with chemo brain that lasts more than a year and keeps causing trouble in their daily lives.

It helps a lot if you have a diary or log of the situations you have trouble with. It also helps to know some of the things that make the problem worse or better. For instance, are they worse in the morning or evening? Do you have more trouble when you are hungry or tired? Does it help to nap, walk, or have a snack? Your doctor will want to know when the problems started and how they affect your daily life.

• Write down questions about the problems you have. Take them to your appointment along with your memory tracking log to talk over with your doctor. Ask what may be causing the problems, and find out if there’s anything the doctor can offer to help you.
• Bring a list of all the medicines you take, including herbs, vitamins, supplements, and those you take on an “as needed” basis.
• Take a friend or family member with you to help you keep track of what’s said during the visit. They can also describe the changes they see if the doctor wants a different viewpoint of how your brain problems are affecting you.
• If your memory and thinking problems keep causing trouble in your daily life, ask your doctor if you might be helped by a specialist such as a neuropsychologist or a speech language pathologist. These professionals can test you and may recommend ways to help you better handle the problems. (You may hear this called cognitive rehabilitation.)

You may need to visit a larger hospital or cancer care center to find experts on testing brain function, including chemo brain. Ask if you can get a referral to one of these specialists who can help you learn the scope of your problem and work with you on ways to manage it. You’ll want to find out what your insurance will cover before you start.

Questions to ask your doctor

These are just some of the questions you may want to ask your doctor about chemo brain.

• Are there other medical problems that could be causing my symptoms?
• Is there treatment for my symptoms?
• What can I do to manage chemo brain?
• Is there anything I can do to help prevent chemo brain?
• Should I see a specialist? Can you recommend one?

Can chemo brain be prevented?

So far, there is no known way to prevent chemo brain. For some people, treating their cancer will mean trouble with thinking, memory, planning, and finding the right words.

The causes of brain problems related to cancer and its treatment are still being studied. Chemo brain seems to happen more often with high doses of chemo, and is more likely if the brain is also treated with radiation. But because chemo brain is usually mild and most often goes away in time, chemo that’s proven to work against the cancer should not be changed to try to prevent this side effect.

What’s being done about chemo brain?

Studies are being done to learn more about chemo brain. Some studies are looking to find out which chemo drugs and other treatments are more closely linked to chemo brain. Researchers are also looking at possible ways to prevent brain problems. For instance, there may be certain drugs that can help protect the brain during cancer treatment.

Researchers are studying other aspects of cancer treatment that may lead to long-term mental changes, too. For example, they are looking at the types and doses of chemo the patients had, anemia, other cancer-related symptoms (like tiredness), and genetic differences among people to see if these factors are linked to a higher risk of brain problems.

Doctors are also studying ways to help survivors who are still having trouble thinking.

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The American Cancer Society medical and editorial content team
Our team is made up of doctors and master's-prepared nurses with deep knowledge of cancer care as well as journalists, editors, and translators with extensive experience in medical writing.