Trying Something New...

THINGS HAVE BEEN A LITTLE CRAZY FOR THE EVANS FAMILY LATELY. TREATMENT IS {HOPEFULLY} COMING TO AN END HERE SOON BUT WE STILL HAVE SEVERAL THINGS UP IN THE AIR. DAYS ARE CRAZY AND STRESS IS AT AN ALL TIME HIGH AND POOR LITTLE LADYBUG HAS REALLY BEEN STRUGGLING WITH SOME ANXIETY LATELY. ANYTHING AND EVERYTHING SEEMS TO BE TRIGGERING SOMETHING INSIDE OF HER, A FEAR WE CAN’T GET TO GO AWAY. THERE HAS BEEN A LITTLE ACTING OUT BUT MOSTLY THERE HAVE BEEN LOTS OF TEARS AND FEAR.

RUNNING ERRANDS THE OTHER NIGHT SHE BURST INTO TEARS, SCREAMING AND BEGGING US NOT TO TAKE HER TO THE CLINIC. “NO POKES! NO POKES!” SHE KEPT EXCLAIMING. WE WERE IN NO WAY HEADED TO THE CLINIC, JUST SIMPLY DRIVING BY ON OUR WAY TO THE STORE. A COUPLE DAYS LATER, WITH TEARS STREAMING DOWN HER FACE, AFTER I PICKED HER UP FROM SCHOOL SHE ASKED ME TO NOT TO TAKE HER BACK TO THE DOCTOR. IT TOOK ALMOST THE ENTIRE NIGHT TO CONVINCE HER WE WERE NOT GOING TO THE DOCTOR FOR A COUPLE MORE DAYS AND TONIGHT SHE JUST GOT TO HAVE FUN. SHE’S REACHED HER BREAKING POINT. SHE’S DONE WITH DOCTORS, TESTS, AND POKES!

TO BE HONEST WE’VE ALL REACHED THAT  POINT. WE’RE ALL JUST AT A LOSS. WE’RE TIRED, STRESSED, AND JUST DONE! WITH AT LEAST 3 MONTHS OF TREATMENT LEFT AND QUITE POSSIBLY A LIFETIME MORE OF APPOINTMENTS WE KNOW WE HAVE TO DO SOMETHING TO WORK ON THE WAY WE ARE ALL DEALING WITH THIS DIAGNOSIS. SINCE HER DIAGNOSIS WE HAVE BEEN ON THE GO, NEVER REALLY TAKING A MOMENT TO STOP AND WORK THROUGH HOW ALL OF THIS HAS CHANGED OUR LIVES. WE HAVE JUST BEEN GOING THROUGH THE MOTIONS OF LIFE, TRYING TO HOLD ON FOR DEAR LIFE…

AFTER MEETING WITH THE GENETICIST AT LADYBUG’S ANNUAL EXAM A FEW WEEKS AGO WE BEGAN RUNNING THROUGH DIFFERENT SCENARIOS TRYING TO FIGURE OUT WHY HER SLEEP HAS BEEN SO OFF LATELY… IS THERE ANOTHER MEDICAL ISSUE TO CONSIDER? DOES SHE HAVE SOME SORT OF SLEEP DISORDER? WE WENT THROUGH A FEW DIFFERENT SCENARIOS AND AFTER TALKING WITH A FEW OTHER NF FAMILIES AND DOING A LITTLE OBSERVATION OF OUR OWN IT BECAME APPARENT THAT MAYBE SOME OF OUR ISSUES MAY BE THIS SITUATION, DEALING WITH THE FEAR OF THE UNKNOWN. THESE LAST FEW MONTHS HAVE BROUGHT A LOT OF CHANGE AND UNCERTAINTY TO OUR LITTLE FAMILY. IT IS HARD PROCESSING ALL OF THIS AS AN ADULT, AS A TODDLER… YOU CAN IMAGINE HOW SCARY THIS MUST BE FOR HER. WE HAD A FEW SUGGESTIONS AND RECOMMENDATIONS TO SEEK OUT A PLAY THERAPIST, SOMEONE THAT CAN PLAY WITH RYLIE AND HELP US TO FIGURE OUT THE BEST WAY TO EXPLAIN THINGS TO HER WITHOUT COMPLETELY FREAKING HER OUT.  WE WERE NOT COMPLETELY SOLD ON THE IDEAS AT FIRST, MAINLY BECAUSE WE DIDN’T KNOW A LOT ABOUT IT. SO, WE DID SOME RESEARCH… READ ABOUT PLAY THERAPY, LOOKED FOR REFERRALS, AND CONSULTED OUR MEDICAL TEAM. MORE AND MORE THIS SEEMED LIKE AN OPTION WE SHOULD CONSIDER. BASICALLY, PLAY THERAPY IS A FORM OF COUNSELING THAT USES PLAY TO COMMUNICATE WITH AND HELP PEOPLE, MAINLY CHILDREN. IT IS USED TO PREVENT OR RESOLVE PSYCHOSOCIAL CHALLENGES. IT IS THOUGHT THAT THIS TYPE OF THERAPY WILL HELP THEM TOWARDS BETTER SOCIAL INTEGRATION, GROWTH, DEVELOPMENT, AND EMOTIONAL OR TRAUMATIC RESOLUTION… THIS WOULD BE SOMETHING THAT COULD HELP US ALL TO BETTER DEAL WITH THE STRESS TREATMENT BRINGS.  IT’S SOMETHING THAT COULD HELP RYLIE DEAL WITH HER DIAGNOSIS FOR MANY YEARS TO COME. GIVING HER A SAFE PLACE TO RELEASE HER EMOTIONS, THOUGHTS, AND FEELINGS.

SO, WE CONTACTED A PLAY THERAPIST IN OUR AREA THAT CAME HIGHLY RECOMMENDED, SPOKE TO HER ABOUT OUR SITUATION, AND DECIDED WE SHOULD GIVE IT A TRY. SO NEXT WEEK WE’RE GOING TO DO JUST THAT… WE'RE GOING TO TRY... TRY TO KEEP AN OPEN MIND, TRY SOMETHING NEW, AND SEE IF IT HELPS US ALL TO FIND A BETTER WAY TO DEAL WITH A TOUGH SITUATION. IT MAY NOT HELP, BUT THEN AGAIN IT MAY. FOR OUR GIRL ANYTHING IS WORTH A TRY! 

FOR MORE INFORMATION ON PLAY THERAPY VISIT THE ASSOCIATION OF PLAY THERAPY

What If...

LATELY I FEEL LIKE OUR LIVES HAVE JUST BEEN FULL OF “WHAT IFS”. LADYBUG HAS REALLY BEEN STRUGGLING LATELY AND HAS REALLY GOTTEN GOOD AT FLEXING HER INDEPENDENCE, ALL THINGS THAT CAN BE “NORMAL” TWO YEAR OLD BEHAVIOR… BUT MY HEART AUTOMATICALLY SINKS EACH TIME AND I DRIFT TO A PLACE OF WHAT IF! WHAT IF THE TUMORS ARE NOT STABLE? WHAT IF THEY’VE STOPPED RESPONDING TO TREATMENT? MAYBE THAT’S WHY SHE DIDN’T EAT TONIGHT… MAYBE THAT’S WHY HER SLEEP HAS BEEN SO OFF… MAYBE WE HAVE A PROBLEM…… OR MAYBE SHE’S JUST TWO?!?

IT’S A CONSTANT STRUGGLE. JUST WHEN WE GET A HANDLE ON ONE ISSUE IT FEELS LIKE ANOTHER ONE POPS UP. WE’RE ALWAYS ON GUARD, ALWAYS! EVERY MOMENT OF EVERY SINGLE DAY WE FIND OURSELVES TRYING TO SORT THINGS OUT. LADYBUG DIDN’T EAT DINNER; IN FACT SHE REFUSED TO EVEN LEAVE OUR BED, SHE JUST WANTED TO LAY THERE AND RELAX? IMMEDIATE PANIC SETS IN… IS SHE SICK? CHECK HER TEMPERATURE. IS SOMETHING WRONG- MOUTH SORES? DIAPER RASH? MAYBE SHE JUST WANTED TO WATCH FLICKA?!? IT DOESN’T MATTER WHAT “IT” IS. YOUR HEART ALWAYS SINKS AND TAKES YOUR MIND TO A PLACE IT SHOULDN’T GO. IT CAN BE THE SIMPLEST OF THINGS… COUPLE DAYS AGO SHE STARTED POTTY TRAINING HERSELF, TWO DAYS LATER… SHE’S REFUSING TO GO. IMMEDIATE STRESS AND PANIC SETS IN… ARE WE GOING TO HAVE TO FIRST HIGH SCHOOL SENIOR NOT POTTY TRAINED? HOW DO YOU POTTY TRAIN SOMEONE WHO SPENDS HALF THE MONTH IN THE HOSPITAL AT APPOINTMENTS? SHE’S ALMOST 3 AND EVERYONE KEEPS ASKING IF SHE’S POTTY TRAINED… MAYBE WE HAVE A PROBLEM? OR MAYBE SHE’S GOING THROUGH A LOT AND WE SHOULD JUST CUT OURSELVES A BREAK……

WE, OKAY PROBABLY MORE ME THAN ANYONE ELSE, HAVE STRUGGLED WITH THAT A LOT THE LAST FEW WEEKS. YOU GET SO USE TO HEARING BAD NEWS ALL THE TIME YOU’RE CONSTANTLY BRACING FOR IMPACT. PREPARE FOR THE WORST, HOPE FOR THE BEST… YEAH, THAT’S HOW WE LIVE! SITTING WITH SOME GIRLFRIENDS THIS WEEKEND AS THEY TELL ME TO CUT MYSELF A BREAK I REALIZED THE “WHAT IFS” ARE GOING TO TEAR US APART. THEY ARE GOING TO RIP US TO SHREDS AND LEAVE US IN A BROKEN PILE. HELL YES THIS SUCKS! IT SUCKS REALLY BAD! WE HAVE A LOT OF BAD DAYS, BUT DAMN IT WE HAVE SOME PRETTY GREAT ONES AS WELL. WE HAVE AN INCREDIBLY SMART, BEAUTIFUL, INDEPENDENT DAUGHTER WHO GIVEN EVERYTHING SHE GOES THROUGH HANDLES EACH AND EVERY DAY WITH SUCH STRENGTH. SO SHE’S STILL IN DIAPERS, THAT’S OKAY! SHE’S ALSO GOING THROUGH CHEMO AND KICKING ITS ASS! SURE, WE HAVE A FEW OF THE “STANDARD” DEVELOPMENTAL MILESTONES’ TO HIT… BUT WE’RE HITTING OUR OWN MILESTONES! THIS IS OUR LIFE; IT’S DIFFERENT FROM OUR NEIGHBORS, OUR FRIENDS, AND OUR FAMILY. WE HAVE OUR OWN TRIALS, AS DO THEY. ALL WE CAN DO IS GET UP EVERY MORNING AND PUT OUR BEST FOOT FORWARD AND ENJOY THE MOMENT! OUR GOAL FOR THE UPCOMING MONTH… CELEBRATE THE LITTLE VICTORIES AND STRESS LESS ABOUT THE THINGS WE HAVE NO CONTROL OVER!

Chemotherapy- Round 9

WOWZA! Round #9 is in the bag! Done and Done! Things started out pretty well. LadyBug was in a great mood. The stars were alligned...Our favorite nurse was there, getting access was quick and painless (well, as painless as it could be). Everything was going great! This month was a pretty easy month for us, no scans, no additional test. Just chemo and home! We were looking forward to a quick visit! 

Then things got interesting... LadyBug started coughing and coughing. Nothing major. Just seemed like a little cough to us. But, it peaked all the nurses interests. They all came running. Turns out kids have been know to have an allergic reaction to the Carboplatine as the treatment goes on. Everything was halted until the nurses could review her symptoms with her doctors. The nurses monitored her closely, no rash appeared, blood pressure was stable, and her breathing was fine so the medical team cleared us to continue forward.

Didn't last long... within a few minutes of starting back up the cough returned. So, we stopped again and waited to see the doctors. LadyBug still looked fine but the symptoms were worrying everyone just a little...She started getting really cranky and just over all miserable. Good thing we had daddy, Netflix, and a sucker to hold us over until the doctor stopped by for a visit! 

When you're not feeling well you can get daddy to do just about anything :)

We're so close. Only 3 more treatments to go. No one wants to stop this protocol and start a new one... It would mean a whole new treatment plan! NO ONE wants that, and I mean NO ONE! So, we slowed things down this month. This particular chemo takes about an hour and fifteen minutes to get, so we added about thirty minutes to see if that helps. Seemed to do the trick this time. Next month, we will give her a dose of Tylenol and Benadryl before we start chemo and pray this does the trick! With only 3 more treatments to go we just need a little fix, something that will hopefully get us over this last little hump....

After the infusion was all done we packed up and high-tailed it out of there! Ladybug was alseep before we were even out of the hospital parking lot. This little girl is definitely stronger than any person I have ever met! Prayers for next month- we're going to need them!

Sleep Study

The sleep consultation appointment is scheduled!!! I cannot tell you what a sense of relief this brings to us. LadyBug has never been a great sleeper but these last few months have been complete torture. Knowing there may be an end in sight, help for all of us is the most welcome news we have heard in a LONG time! February 12^th cannot come soon enough!

For now we track her sleep and wait for answers…

Lab Results

Lab results are in! Thyroid and the Pituitary Gland look great! All of her levels are within the normal range. While that answers some questions other still remain... The biggest question we need an answer too is where exactly the tumor are located. If they are sitting on the pituitary gland this may explain some of the problem. LadyBug has an MRI scheduled for the first week of February so Dr. Viskochil is going to have a few more scans ran so he can take a better look at things. 

Hopefully within the next month we will be able to figure things out.

Genetics Exam

Last week LadyBug had her annual Genetics exam with Dr. Viskochil. Things went really well! No new NF signs or symptoms! Hip-Hip-Horray!

Our girl did really well. The two week break over the holidays was amazing but it seemed to have spiked a lot of fear and anxiety of our girl. Going to the lab the night before was all out tantrum city. She was terrified to go back to the hospital. As soon as we hit downtown SLC she knew exactly where we were going …tears started streaming down her face as she begged us to take her home. Possibly the worst part of the day-Rips your hearts out when you know it’s what’s best for her, but try explaining that to a two year old. 

HEADING OVER TO THE ECCLES BUILDING

This appointment marked out first appointment at the new Eccles Primary Children’s Outpatient Building. What a beautiful building… if Primary Children’s does one thing right, they sure know how to take care of those kiddos! Everything is geared towards the kiddos. LadyBug had so much checking everything out!

OF COURSE SHE FOUND HER FAVORITE ANIMALS

PLAYED A LITTLE MATCH GAME

After checking in and getting in a little play time we headed back to meet with Dr. Viskochil. We did a quick count of any new spots and moved on to checking out everything else…

First area of concern was Rylie’s height and weight. Little miss is currently in the third percentile. In the last year her growth seems to have stalled out… she hasn’t gained any weight (likely explained by the chemotherapy and its side effects) and has not grown an inch. Oddly she seems taller to us but according to the measurements she has not grown an inch…. NF kids are typically smaller than family history would dictate. LadyBug has always followed that pattern. She has always been under the tenth percentile and has always been below the “normal” growth curve, but lately her growth lines have remained the same. While the weight is easily explained the height is not. Dr. Viskochil is ordering some lab work to check out her thyroid and her pituitary gland. With optic nerve gliomas they usually sit on or close to the pituitary gland causing some issues with growth. Her labs will let us know if there is a problem and how we should proceed if needed in the future.

Second area of concern… her sleep pattern, or lack thereof. Given everything she is going through sleep is very important. We have to figure out a way to get her some adequate rest. She is currently averaging about 4 hours of sleep per night! Which, only results in more break downs and behavioral problems. Hopefully the specialist will be able to guide us in the right direction.

The last thing we spoke to Dr. Viskchil about was the possibility of other NF tumors. This year has been a year full of fear and anxiety. Optic Nerve Gliomas are not the only type of tumors children with NF get. There are so many other types. As we learn more ab0ut NF we feel more prepared to take on this disorder… but it also scares the hell out of us! If I had my way I would scan her whole body every night before bed! The doctors, however, don’t think that’s quite necessary…. That might be the crazy mama bear coming out, or so they say. Dr. Viskochil was kind enough to put my momma fears at ease. More often than not NF tumors are present but require no treatment. As a matter of fact when LadyBug’s tumor was found last February we were told we would likely not have to do any treatment for a few years, if ever. The fact her tumor progressed so quickly is completely out of the normal. Because everything in our lives lately is so out of the normal we are in constant fear everything will be worse case scenario. A few other NF specialist we know of do what is called a baseline MRI, a scan of the entire body to check for tumors we may need to watch for. MRI’s and how frequently they should be preformed are something that is currently hotly debated. Some believe it’s not safe for kids to have MRI’s so frequently, others feel it’s needed to monitor NF signs and symptoms. At this time LadyBug does not show any other symptoms so there does not seem to be a substantial reason to perform such a long MRI… Logically this all makes sense…. Emotionally it’s something we, I, still struggle with. I don’t like surprises. I would just rather know. I would just rather be prepared for any scenario we “may” have to deal with… At this point I guess we see how things go and re-evaluate if we feel it’s needed.

For now... We eat M&M's!