26 March 2015

What a week...

WHAT A MONTH! AFTER A PRETTY TOUGH ROUND OF CHEMO WE WERE A LITTLE ANXIOUS ABOUT LOCK DOWN THIS GO ROUND. WELL, LAST WEEK LOCK DOWN CAME AND WENT. NO MAJOR PROBLEMS, NO ILLNESSES, AND NO TUMMY TROUBLES. WE THOUGHT WE WERE IN THE CLEAR… SMOOTH SAILING FOR THE REST OF THE MONTH….. YEP, ASSUMING NEVER PAYS OFF FOR US! 

THINGS TOOK A NICE LITTLE TURN THIS WEEKEND PROVING THAT EVEN WHEN YOU THINK YOU HAVE THIS WHOLE "CHEMO" THING UNDER CONTROL EVERYTHING CAN CHANGE IN AN INSTANT! WE’VE BEEN WORKING WITH LADYBUG ON POTTY TRAINING A LITTLE BIT- NOTHING SET IN STONE JUST GETTING HER USE TO THE IDEA. SATURDAY SHE SEEMED TO REALLY GET EXCITED ABOUT THINGS, WE HAD A COUPLE ACCIDENTS BUT SHE WAS DOING GREAT! SUNDAY HOWEVER, SEEMED TO BE AN ENTIRELY DIFFERENT STORY. FROM THE MOMENT SHE WOKE UP SHE WAS MISERABLE. SHE WOULDN’T GO TO THE BATHROOM. NOT ON HER POTTY, NOT IN THE TOILET, AND NOT IN HER DIAPER. WE WENT ALL DAY… HER HOLDING IT UNTIL SHE LITERALLY COULDN’T ANYMORE AND THEN AS YOU GUESSED IT WE WOULD HAVE A MASSIVE MESS TO CLEAN UP. SHE JUST KEPT CRYING, TELLING US SHE HAD TO GO POTTY BUT SHE COULDN’T. WE WERE A LITTLER PERPLEXED BUT CHALKED IT UP TO HER NOT BEING READY TO BE POTTY TRAINED. WE THOUGHT WE’D GIVE IT ANOTHER GO MONDAY AND SEE WHERE THE DAY TOOK US… WELL THE DAY TOOK US RIGHT INTO PRIMARY CHILDREN’S. WE AGAIN WENT THROUGH THE SAME SONG AND DANCE… SHE WOULDN’T GO POTTY. INSTEAD SHE SPENT THE DAY CRYING AND WHIMPERING IN PAIN. WHEN WE GOT HOME THAT NIGHT WE ATTEMPTED SOME MORE FLUIDS AND A LAXATIVE TO SEE IF THAT WOULD HELP… NOTHING! BY 8PM SHE WAS IN SO MUCH PAIN SHE JUST CRIED AND CRIED. OUR MAIN CONCERN BECAME THE POSSIBILITY THAT SHE HAD A UTI. SO, WE GAVE ONCOLOGY A CALL AND ASKED FOR SOME HELP. THEY WERE CONCERNED ABOUT THE SAME THING, OR PREVENTING A UTI IF THAT’S WHERE WE WERE HEADED, SO THEY ASKED US TO COME IN. SO, AT 8PM WE LOADED UP AND HEADED UP TO THE HOSPITAL… ER VISIT #4 FOR LADYBUG.





IT WAS POSSIBLY THE LONGEST NIGHT…. EVER! SHE WAS MISERABLE AND WE WERE ALL EXHAUSTED! AFTER 7 HOURS… A BLADDER SCAN ,BLOOD DRAWS, PORT ACCESS, FLUIDS, AND A CATHETER THE DIAGNOSIS WAS IN… SEVERE CONSTIPATION. WHAT?!? YEA, EXACTLY WHAT WE THOUGHT! HOW IS THAT EVEN POSSIBLE?  MOST KIDS ON THIS TYPE OF CHEMO PROTOCOL EXPERIENCE SOME CONSTIPATION BUT LADYBUG IN THE PAST HAS BEEN THE EXACT OPPOSITE. WE WERE A LITTLE STUNNED TO SAY THE LEAST...

HERE’S THE PROBLEM WITH CHEMO AND CONSTIPATION…. YOU CAN’T REALLY USE TRADITIONAL METHODS OF RELIEVING THAT PAIN FOR A BABY OR TODDLER. NO ENEMA’S, NO SUPPOSITORIES… CHEMO MAKES THE SIMPLEST OF PROBLEMS MUCH MORE COMPLICATED. BECAUSE HER COUNTS ARE STILL PRETTY LOW FROM THE LAST ROUND OF CHEMO THERE WAS NOT MUCH WE COULD DO TO HELP HER. ONCOLOGY DID NOT FEEL COMFORTABLE MOVING FORWARD WITH ANY SORT OF ENEMA, THE RISK OF INFECTION JUST DIDN'T OUTWEIGH THE REWARD. SO,THEY PRESCRIBED US 3 DIFFERENT LAXATIVES TO GIVE HER 4 TIMES PER DAY IN HOPES WE COULD GET THINGS REGULATED AND BACK ON TRACK.THE HOPE WAS IF WE ELEIVATED THE CONSTIPATION SHE WOULD START URINATING.

IT’S STILL A WORK IN PROGRESS, SHE’S HAD A REALLY ROUGH LAST COUPLE OF DAYS, BUT SHE’S FINALLY GOING TO THE BATHROOM AGAIN! HER TUMMY HURTS AND WE’RE ALL EXHAUSTED BUT WE’RE GETTING THERE… ONE MORE ROUND OF CHEMO. ONE MORE ROUND!!!



16 March 2015

Chemotherapy- Round 11

SO happy to have round 11 done! It was a doozie! 

LadyBug's chemo appointment this month was scheduled nice and early... So we packed up our favorite friends and headed up to the hospital. 


Amazingly there was no traffic so we got up to the hospital a little earlier than expected. So we grabbed some breakfast smoothies and settled in to watch the light show in the lobby- always LadyBug's favorite! 


After breakfast we headed up to Oncology. LadyBug's got this routine down... We get her blood pressure checked. Temperature checked. And then her height and weight measurements. Then... we play! The first part of the morning is all check-ups and chatting with mommy and daddy so LadyBug grabs some toys and plays with all the new and exciting things. She's pretty spoiled up there so this is probably her favorite part of the day! 











Then things changed.... About 5 minutes after we snapped this picture all hell broke loose. Chemo has finally, after 11 months won the battle. Our poor girl went through about 15 tortorous minutes of throwing up, gagging, and throwing up some more. After 11 months of thinking we've finally got this routine down the biggest wrench was tossed into the mix. Our poor baby was throwing up like crazy and all we could do was stand there in complete and utter confusion. In 11 months nothing like this had ever happened- we had NO clue what to do! We were kind of Frozen in fear. I think we were both ready to grab her and take off running! She was sick and we couldn't do anything to help her. We had no extra cloths, the iPad was covered, everything was a mess!  I think the entire thing caught LadyBug by surprise as well... After about 15 minutes of constant sickness she finally caught a little break and just burst into tears. Everyone around her was hustling to get her cleaned up, her doctors were paged, and the nurses were quickly getting us moved over to a clean spot... All the craziness just seemed to scare her even more. In the midst of the craziness LadyBug looked up at me and with the saddest face said "I'm sorry mommy". Holding it together at that point flew right out the window. Tears just flooded from my eyes... Here she is going through complete torture and she's apologizing to me! The unfairness of the entire situation just broke me, shattered my heart into a million pieces. Here we were so close to the finish line and everything seemed to be spinning out of our control...

Because of the allergic reaction and now the puking the chemo infusion was slowed way down and we had a few more hours added to our day. So, we snuggled up and enjoyed one of her favorite movies. 



In an effort to bring a smile back to her face we hitched a ride to the car in a wagon...
 
Then we jumped in the car and headed home to rest! 

                     Puke duty... 

The rest of the week we settled in at home snuggling and giving LadyBug a chance to rest and recovery... Get her energy up a little before lockdown! 

#EndNF with the Utah Grizzlies

We had one of the most amazing weekends (last weekend)... Started off with a little Disney on Ice action with the family....



Then it was off to the #EndNF Night with the Utah Grizzlies! Honestly one of the best nights... Fun with all of our NF buddies... Can it get any better than that?!? Our fellow NF Hero T and his mom work hard every to get an NF night set up with the Grizzlies. Last year we were in the midst of the {{{TUMOR}}} battle so we didn't make it out, this year it was the perfect pre-chemo family fun night! 

LadyBug was SO excited! She was literally counting down all morning... And the day did not disappoint! Late Friday afternoon we received a call from our friends inviting LadyBug to help two other heros drop the puck right before the game! We were really excited but we had no idea she would love it as much as she did! The Grizzlies sure know how to make a kid feel special- they literally roll out the red carpet for them. She talked about it all night- telling anyone and everyone that was sitting next to us... Showing off her puck with pure joy. She has carried that thing around with her all week! 

   Pre-Game fun with cousins and friends 

  Waiting in the tunnel for her big moment


                Cutest little NF Heros! 





               Smiles all night long! 










           Popcorn and French Fries!!! 





A great big shout out to the Utah Grizzlies for hosting such an awesome event! Your kindness and generosity will be with these kids for years and years to come! 

#EndNF