June 5, 2012

Kassidy is much better since the trip to the ER that Saturday.  By taking her off treatment for a night she was able to rest for a whole night.   Her nausea has not completely gone away and it seems that every other day she is still vomiting.  :(   But we have seemed to be able to control it a bit better with zofran (nausea pill) and phernergan (another nausea pill).  It just comes and goes, but it's definitely better where she can eat and drink now.  It's almost like morning sickness..... Ugh!

She was able to go back to school last week and made it till Friday.  On Friday, she texted me and said she felt horrible, but did not want to come home because that would mean more makeup work.  School is almost out and she's trying so hard to catch up and finish school with good grades.  So proud of her!  She's one tough girl.  She's so close and then she can rest for summer break.

We are now at 440/40 on her dose, so we have been able to come down 60 ml.  I will keep her at that all week just so she can finish up school this week and her finals.  Then during summer break we can wean a little faster since she can rest at home.  She's just so ansy to get on living life.  She would like to be done faster than 8 more months.

Last week she was able to go to her softball banquet.  She received her 3rd varsity letter in softball.  She was more of a coach this year, instead of a player, but so thankful to her coaches and teammates for allowing her to still feel part of the team.  We are just so excited that she even tried.  At the banquet, our friend Don did a very emotional video of the 2012 season.  It was great to have him there to capture all the special moments.  He will missed by many as he leaves for Connecticut this summer.

Getting her 3rd year varsity letter.

The Fab Five, every year since there freshman yr they take this picture in front of the bulldog.

Last weekend, we did a surprise party for coach Spencer, one of Kassidy's old softball coaches who helped us organize most of the fundraisers we had last year.  I still remember getting a call from him when we were all in Houston in July and he had said "You worry about Kassidy and we will worry about raising the money".  We will never forget all the help he and his wife Karen gave us during the first hardest months of our lives.   We will be forever grateful for both of them and all they helped us accomplish.  They too will be missed as they move back to Texas to be closer to family.

Thank you Coach Spencer for everything!

Yesterday, we had the annual alumni softball game.  In this game the old alumni softball players are invited back to play against the current softball players.  When Ryan and I got there the game was just about to start and guess who's playing first base?  Yep, Kassidy! Ha, we were delighted!!!  She only played the first inning because she started to overheat and we had to place a cold towel on the back of her head.  But almost at the end of the game I see her coming to the plate with a bat in her hand.  I guess she asked coach if she could go hit.  We were jumping for joy!  I tried really hard not to get emotional and scared at the same time.

The smile that's worth a thousand!

Just awesome!

She stood with the bat on the left, since batting right hurts her port site.  And she did it, she hit the ball and made it to first safe!  Great moment for us!!!!!  She looked a bit rusty, but we didn't care.  No one did!!  They all cheered her on.  Sigh!!!  Her smile was contagious and it was exactly what she needed to finish of the season for her junior year.

Kassidy's video of her first at bat since surgery last year!

I can't wait to see more moments like this..... We only hope and pray.

May 26, 2012

We are finally home from the ER!!!  Exhausted once again.

This morning Kass woke up again with extreme nausea to the point that she was so upset.  She had had it!!!  Her frustration broke my heart.  We want it to make it all better.  She has not been feeling well since Tuesday.  She really hasn't even had a chance to celebrate her good news. :(

She has been so nauseous that she hasn't really eaten since Tueday and throws up when she does eat.  She's lost almost 8 pounds.  It's been so hard to know what she needs.  We decided not to change her dose on ANP thinking it was her medicine, but that wasn't it.  We also hydrated by giving her bags of fluids since she was still on ANP, but not drinking as much as she should be.

When we got to the ER they ran a full panel of blood, checked out her pupils, and did a CT Scan to make sure there was no inter cranial pressure.  The CT Scan came back perfect, I happened to have a cd in my purse so they could compare to the last one we had done.  And her blood panel came back normal except the white blood cell count was a little off.  So they ruled that she must be fighting something viral.  Ugh!!!

Ouchie!

Doctor ordered some phernergan (nausea medication) which knocked her out, she was slurring and passed out fast.  Then they gave her 1000ml of fluids and sent us home.

Our baby was out!!!

She still had nausea on her way home, but she is now sleeping like a baby.  We have decided that we will take her off treatment till tomorrow to allow her body to rest and have a good night sleep for once in a long time.  We know that being off can also cause nausea, but at this time we feel that letting her rest is what her body needs.

We pray that she soon finds relief, because we hate to see her suffer like this.  Please keep her in your prayers!!!

May 24. 2012

So we are finally arrived at home yesterday afternoon completely exhausted emotionally and physically, but still elated with the news we got Tuesday.  It's been a great couple of days!

After our appointment on Tuesday we proceeded to lower Kassidy's dose to 330 ml on Bag 1 and kept her at 40 ml on Bag 2.  She wanted to give it a try, but after lunch she said she wasn't feeling well. :(  She ended up throwing up all her lunch!  She was so disappointed because by lowering her dose that would mean that she would only be on treatment about an hour and half vs. 2 hours and 10 minutes and have a break of over 2 hours between treatment.  A bit more freedom from the backpack.  It just gets tricky sometimes fitting in medicine bag changes, dressing changes, blood draws, and even showers in between her treatment times, since it gives us such a small window of time and sometimes sleep is a bit more important than all those.

We asked her at that first vomiting episode what she wanted to do; if she wanted to go back up in dose or stay at 330 ml like Dr. B had said we could do, but she said she would try to tough it out and try again for the next dose.  But that night after dinner she threw up again!  So we suggested we try 400 ml on Bag 1, not exactly maximum dose, but a bit closer.   So we reprogrammed her pump and in the morning she was feeling worse.  Ugh!

We packed all our things and headed over to the clinic to get her some more fluids since again she had been throwing up everything she ate or drank and we wanted to make sure she did not dehydrate and felt completely bad on the airplane ride.  We decided at the clinic to put her back at maximum dose of 500 ml on Bag 1 and worry about weaning her slowly when we got home.  She's always been so sensitive being on ANP that is just makes more sense to wean her a couple ml a day than too much at once.

So today we are at 470 ml and are hoping all goes well.  We have kept her home today just because she is exhausted and would like to give her more fluids and to make sure she keeps food and water in her stomach.  All this is just a reminder that she is still not out of the woods, that the fight is not yet over!

We are hoping that by lowering the dose, the tumor does not grow in these next 8 weeks so we can continue to keep weaning.  We also hope that eventually the remaining scar tissue is absorbed by her body so it doesn't cause any side effects even when she's completely of ANP.  We know that she can live her life with the scar tissue or necrosis, but in truth it is still a foreign mass that remains in the brain that shouldn't be there and unfortunately can't be operated on.

Dr. B feels that it will probably take another 8 months to wean her completely of ANP if all goes well.  Hopefully less, but we will take 8 months more.  So she will be carrying the backpack for a bit longer.  The great part is that as we lower the dose most likely she will need decadron less and less.  That in itself is success!  Also, she should feel better and better and maybe be able to start exercising, feeling less tired and who knows what else.  WOW!!!  God is great!!

It's been such a great couple of days.  All of you know we got the chance to go to Reno to watch Kassidy's Centennial softball team compete in the State Championship playoffs last week.  Well we arrived last Thursday just in time for the first game which unfortunately they lost, but it was a double elimination tournament and they worked hard through the losers bracket and made it all the way to the championship game on Saturday.  Kass was so excited that she would spend Saturday (1 year anniversary of her diagnosis) watching her team fight for the chance at State Champion.  The hard part of this game is that the team they were playing for the championship was undefeated thru the tournament so the Centennial girls would have to beat them twice back to back.

Can you guess it???  They did it!  The girls all played their hearts our and they 10 run ruled Coronado HS twice.  The first game they won 13 to 3 and the 2nd game they won 11 to 0.  Such an amazing moment to see the girls finally win their State Championship with Kass watching.  Not only that, but notice the final score!  11 to 0!!!  Kassidy's jersey is #11.  WOW!!!!

Final Score 11 to 0

Kass getting her State Medal as the stands stood and cheered!

The Fab Five!

Kass and coaches!

Centennial Softball Girls State Champions!!!!!!!!!!

We were all sooo emotional!  Each girl had again vowed to play for Kass that day.  That this year would be won in Kassidy's honor.  Amazing day!  It was exactly what we needed that day.  Another great blessing from God.

Here is the article in the Review Journal:
http://www.nevadapreps.com//4A-STATE-Centennial-shows-little-mercy-routs-Coronado-for-third-title-152186105.html

Also, that next day on Sunday my aunt Ana from Panama did a walk in Kassidy's honor in David, Panama.  More than 300 walkers walked for Kassidy that day and most of them have never even met her.  Pretty amazing!!!  A prayer was said at 11am for her and I know that God heard.

They carried giant posters of Kass thru the walk.

My cute aunt right behind the poster carriers she organized it all.  She's been one of greatest supporters.  We are luck to have her in our lives.

Prayer time!

All the walkers!  Thank you!!!!

I am writing today with great gratitude in my heart. The joy we feel today; its indescribable.

We arrived in Houston on Sunday night. Flight was great, but we did have to administer IV decadron in the ascend because Kass started to feel pressure in her head. We were so worried that she would feel sick, but she did ok. She got a headache on the way down, but after being back on the ground awhile her headache went away. So glad!

Our pet scan appointment was early on Monday morning and she was so tired she slept right thru it which we were glad since she had been throwing up prior to her appointment since she had been off treatment for about 4 hours before. We waited for CDs to be burned so we could walk them over to the Burzynski Clinic and maybe get results right away. We were so nervous and anxious for results. We got to the clinic and we had to do our routine Monday blood draw. After that , we left Kass in the infusion room for a bag of fluids since she had been sick all morning and we met with the radiologist. He tried to evaluate the pet scan comparing it to our last MRI, but he really didn't want to make guess at it before Houston Imaging made an actual calculation of exact activity of the tumor. We were disappointed that we would have to wait another day. Our nerves would have to hang on for a little longer.

Where Hope Exists!

So we went to eat and then headed over to spend the evening with the Geddes family who live very close to the clinic. We met the Geddes last year when their son Gage and Kassidy started treatment at the same time. We have kept in contact almost every day and they have been a great support for us since they have been around the block a few times. Gage has had brain tumors since he was 2 years old off & on, but he is now tumor free! Yeah! We are so thankful for great friends.

Today was the big day! Results day! We got to the clinic and not one of us could really eat. Our stomachs were a mess. Right before our appointment we met with the Heil family whose baby girl Alynn of only a couple months is fighting a ganglioglioma on the left side of her head and Catherine who is fighting lymphoma, it's her 3rd fight with cancer. We all decided we would go to lunch together after all of our appointments.

Kass & Catherine whose battled breast, kidney & now fighting lymphoma.  It was her 2nd day of treatment.

Kassidy & baby Alynn, she too has a ganglioglioma and she's been on treatment for a week and half.

Celebration lunch!!

We then sat in the glass office and waited for doctors, our hearts beating so hard I swear could be heard thru our chests. Not long Dr. Burzynski, Dr. Acelar, & Dr. Marquis came in. First thing Dr. B mentioned how good Kass looked. She smiled! He started off by saying that by looking closely at the tumor that it looks negative! WHAT! We were shocked. We asked to repeat! Dr. Marquis then explained that Houston Imaging took a real close look at the tumor and they said anything below a 3% activity is deemed negative and that Kassidys tumor was well under 3% activity. Oh my gosh! A pet scan allows for doctors to see what part of the tumor still has active cancer cells and which part are dead cells (necrosis). That they carefully measured each one of Kassidys lesions and compared them. That the results took a little longer because Kassidy's tumor is not a single mass but a couple of them and they wanted to make sure they assessed each one correctly. WOW! Dr. B then proceeded to tell us that he would like to lower Kassidys ANP dose right away to 330ml on bag 1 fom 500 ml and keep bag 2 the same for the next 8 weeks. All we could think was " is this really happening?" After the 8 weeks we would do an MRI to make sure there was no growth and if there was not we would lower the dose again and repeat an MRI to make sure the tumor would stay the same size. And to tell you the truth after that we don't remember. Lol!

Dr. Burzynski & Kass almost a year later!  

At that point we could not contain our excitement! Our hearts were jumping for joy in a way I have never felt before. The joy was overwhelming! We thanked all the doctors especially Dr. B and ran out of the office to tell our new found friends that were at the clinic at the time. Then we called a few loved ones so the could spread the GREAT news!

The greatest part of all this is that ANP worked for Kassidy! We are so glad after all she's gone thru this last year. All of it was not in vain. We pray that as we wean down the tumor doesn't come back. That either the remaining tumor completely dies off and the necrosis left behind does not cause any side effects or is later absorbed by her body. We are thinking she will still be in treatment for mother 8 months to complete the treatment, but now we see the light at the end of the tunnel. SIGH!

We are thankful to our Heavenly Father for this blessing! Our faith has carried us thru some hard months and we know that he has always been there holding our hand. We dreamed of this day! It is still so surreal. Kassidy has been so courageous thru all of this, we cannot be any more proud of her. God truly gave us an amazing young lady. One who trusted us to go "outside the box" of medicine protocols to make sure that her quality of life in the future would be spared. Today we know that we made the right decision. That sometimes listening to that silent whisper can make a world of difference, even though not all agreed especially some doctors. We thank each one of you that support us and that pray for us. I know there are many of you. I ask that you please don't give up on us just yet. The fight is still not over! But we are almost there ;) god bless each one of you because without you we would NOT be where we are today. Thank You from the bottom of our hearts!!!!

May 16, 2012

So I sit here with an upset stomach and anxiety as I think of what's to come in the next couple of days.  I can't help, but be worried about things I cannot control.  I pray that God gives us peace and strength to face whatever is in store for us in the future and that everything will work out.  I've learned that faith carries you a long way and we leave the future in God's hands.

We have seemed to have stalled in the weaning of the decadron, we are stuck at a 1/2mg in the morning and 1/4 at night.  I guess that it's just what her body needs right now.  Baby steps! She's been doing well on this dosage, but has been having a hard time with the heat.  It seems that the Vegas heat drains her and also dehydrates quite a bit.  Thank goodness our doctor has upped the hydration bags per week, which is kinda a hassle for Kassidy because she is hooked up to either an IV fluid bag or her ANP medication for a lot of part of the day for 2 or 3 days a week.  She is not getting her almost hour and 45 minute break in between treatment like she usually has. She has to roll her IV pole while on the IV fluid bags and she feels she looks way worse off than she is while rolling that pole around the house.  She says she looks like the sick cancer kid with the pole.  We assure her that all this is temporary.

We are just thankful that Vegas has not gotten any hotter yet especially since the Centennial Softball girls made it to Regional playoffs; so this past week they played almost everyday which wore Kass out.  But she was excited to be there to watch her team win Region.  Ryan kept her home last Friday to just give her fluids all day which got her ready to watch her team to victory on Saturday since I was in Boise picking up Kyle from college.  Our boy finished his first year of college!  We are so proud of him.

All smiles!

Coaches Celebrating Region Win!

Region Champs!!!

Each girl kissed the trophy person that broke! Ha not sure why.

When Kyle and I got home Saturday evening, Ryan proceeded to tell me that he needed to tell me something, but not to friek out.  Oh oh, this is never good news!  He said that morning while Palo Verde was warming up that one of the girl from their team tripped and threw a wild throw into the dugout and hit Kassidy right in the back of her head right by her incision.  OH MY GOSH!!!  He said her team members and coaches all ran to her.  Ryan immediately checked her out and other than a headache seemed ok.  They checked her throughout the whole game and she even mentioned that evening that she hadn't felt better in days.  Wheewwww! It could have been worse.  Man of all kids to hit in the dugout......

We want to thank everyone that helped out with Kassidy's fundraiser two Saturdays ago.  We had planned a car wash, but the Texaco on Durango and Centennial wasn't allowed to do a car wash so the volunteers stood the corners and also sold Kassidy's Army gear.  It was a great success and we are so thankful to each one of you that volunteered and donated to our girl.  Always so great to see all those to come out to support; coaches, parents, cheerleaders, dance fusion girls, softball teammates, and whoever I missed.  It was also so great to see some of the Foothill softball girls make the trek all the way over to our side of town to spend the day with Kass.  Thank you!

Softball Girls!

Girls working hard!

Kass and her friend Pamels that made the trek across town.

This week the Centennial softball girls are on their way to Reno to play in the State Championships.  I feel almost dejavu.  This was the case last year, but the first day of playoffs last year, Kass was in a hospital in for brain surgery.  This year she gets to be there for her team.  We leave tomorrow for Reno so she can be part of their great accomplishment, she's so excited.  I hope they make it all the way to the championship on Saturday.  It will be a great way to celebrate one year since she was diagnosed.  Oh Saturday, please be kind to us.  Cause I know this mama will be a mess.

Yes it's a crazy week, so on Sunday we leave for Houston.  I am asking for a prayer request for Sunday at 11:00am.  I ask everyone who prays to please say a prayer for Kassidy on Sunday at 11am Pacific Standard time for our little girl.  This trip to Houston is so important and can change our world.  Thank you in advance!!!

April 30, 2012

 May commences National Brain Tumor Awareness Month!  Here are a some pediatric tumor facts:

• Brain tumors are the deadliest form of childhood cancer and the #1 cancer-related cause of death for children 20 years of age and younger they can be malignant or benign, but in either case life-threatening.
• Brain tumors can occur at any age, but are most common among children ages 3 to 12, and adults ages 40 to 70.
• There are 130 different types of brain tumors, making diagnosis and treatment very difficult.
• Pediatric brain tumors aren’t like those in adults and thus require different treatments.
• Even though survival rates for some pediatric brain tumors have increased over the years, survivors often suffer from lifelong side effects of treatments, including physical, emotional and learning challenges that will limit the quality of their lives all the way into their adult years.
• Research that focuses specifically on pediatric brain tumors is crucial to saving the lives of these children.
• The funding for pediatric cancer trials has declined every year for the past eight years.
• At this time, brain cancer research is underfunded on a national level and the public remains unaware of the magnitude of this disease, largely because brain cancer in children is one of the most difficult cancers to treat and because it is relatively rare when compared to other cancers.
• The cure rate for most brain cancers is significantly lower than that for many other types of cancer.
• 1 child out of 5 who is diagnosed with cancer dies; only 33% of all patients diagnosed with brain cancer will survive five years.
• Only two new brain tumor treatments have been approved in the past 25 years.

Our Hero!
Kassidy's plaque from www.wallofcourage.com

I can't believe that it's May already!  This month will be a year since Kassidy's diagnosis on May 19th; the date is practically around the corner.  Time has flown by!!!  Last year, May was just another month full of kids activities, sports, and just everyday life events.  How everything changed in a blink of an eye.  I can't tell you that we knew anything about childhood brain tumors except for watching the St. Jude commercials with the heart wrenching bald babies asking for donations. Funny, how we become aware really quick when someone close to us is affected by a disease.  We never think it's gonna happen to us.  I almost feel that we were living inside a bubble, completely unaware of the realities of life itself.  I would almost say a selfish way of living.

This past year has definitely not been easy, but we have learned valuable lessons that sometimes take a lifetime to grasp.  We have grown as individuals and definitely become a closer family.  We have also found that friends and family are extremely important, that their support is vital to dealing with the ups and down of cancer.  We are so thankful for all of you!  More than you know.

I know that all of you know, we have decided that a pet scan is necessary to see where we stand in Kassidy's tumor progression or regression.  We will be traveling to Houston on May 20th to get a pet scan and afterwards meet with Dr. Burzynski, Dr. Marquis, & Dr. Acelar to go over the results of the pet scan. The pet scan will show if Kassidy has stopped responding to the ANP treatment or if it's killing the cancer cells and just leaving scar tissue behind that we cannot see on an MRI. We will also discuss at that time if we need a plan B or if we just continue treatment. SIGH!!!!!  The thought of all this terrifies us.

We are currently still struggling a bit on the weaning of the decadron, we are only at 1/2 mg in the morning and 1/4 mg at night, but when we lower it even 1/4 mg she has bouts of nausea and vomiting a couple days after.  We have been trying to lower the dose during the weekends so she doesn't have to suffer through the side effects of the weaning while at school.  Even though, she has experienced some effects during school time last week.  She tries to stick it out and takes her zofran (nausea medicine) and most of the time just finishes the day.  We are so thankful she only has 2 classes per day especially days like that.

Kassidy enjoyed playing with baby Thiago last weekend!

Also, it's been great that her local doctor here is now prescribing IV fluids every week so I can administer those during the weekends and replenish her electrolytes, potassium, and calcium here at home.  She feels so much better after them.  We are learning what Kassidy's body needs to withstand treatment.  Her labs every week have stabilized for the most part and happy to report that her hemoglobin keep coming up every week, something we struggled with quite a bit, a couple months ago when she almost needed transfusions.  We have learned the vitamin supplements she needs, that cloro oxygen drops have brought up her hemoglobin numbers, natural anti-inflammatories helped with lowering her decadron dosages, elimination of milk has helped with her allergies, and most of all her diet.  So amazing how the body works!!!  You have to give it the tools to help fight!!!

All in all everyday is struggle, but she's pretty positive most days. There are days when she gets tired of it all and just wants her life back which we don't blame her.  She gets tired of all the pills, sleepless nights, backpack carrying, not being able to play the sports she loves and do the things she used to.

I think sometimes things are put into perspective of how lucky she is and that everyday is precious.  Last Friday, we got the news that Jaxson Piro, the Las Vegas boy fighting a brain tumor whose walk we participated in March passed away. He won his battle against brain cancer and earned his wings.  Jaxson was only 11 years old!  Our hearts broke for the parents of this boy, Meghan and Steve.  I could not imagine the pain they are feeling.  How does a parent ever get over loosing their child?  I don't want to think about it.  I do know that Jaxson is now free of pain and suffering and that he will look over his family as a guardian angel.

RIP Jaxson Piro!

April 17, 2012

Tumor is STABLE!!!!!

We are glad, but antsy to know if the tumor is even active anymore.  We have decided we have to go to Houston for a pet scan.  Our local oncologist has suggested we go somewhere else since Vegas pet scan are a bit outdated and quite expensive, $3,500 here in Vegas and in Houston only $1,400 and newer equipment.  A pet scan will allow us to find what parts of the tumor have died if any and what parts are active; something that a MRI cannot show.

After explaining to Kassidy that her tumor was stable this time she asked if we could find out, and to tell you the truth, we as well are curious.  This tumor could be dying and we just don't know.  Her body might not absorb the dead tumor and just leave like scarring that can show on a MRI as tumor like.

We also would like to meet with Dr. Burzynski and hear his plan for Kassidy and ask his opinion, we respect it and he knows what is best.  So we will keep you posted on when we decide to leave and go meet with him.  I am just glad our little girl has been feeling really well lately!!!!!!!

Keep the prayers coming!!!

April 16, 2012

Well, today was the dreaded MRI day!!!  Yes, this day has always been so hard on all of us, but always extra hard on Kassidy.  This morning she got her morning dose just like always, but after 11:30am she could not have a dose of antineoplaston till after the MRI.  I tried to prepare myself mentally the day before to watch Kassidy suffer thru the rest of the morning and while in the tube of the MRI machine.  Last MRI was such a nightmare and the worst she's ever felt.  But to an amazing surprise she felt great all day!!! :) :) :)  Can you believe it??  Kass was even suprised.  This has not happened since she started treatment last July!

When we got to Steinberg, we couldn't help to be silly.  We joked about everything.  She tried to hide from me in the main waiting room, we changed the channel of the master tv in the MRI waiting room when the nurse stepped out for a minute (HA!) , and we even joked about the questionnaire we have to fill out everytime we go in.  My heart literally was jumping for joy.  I was so excited to see the change that I could almost not contend my happiness.  I thank God for the amazing gift today!!!

We are not sure what is different or why the change, but deep in our minds we hope it's a great sign for things to come.  We are hoping that the news are stable or reduction.  We have noticed quite a change in Kassidy in the last 2 weeks and half; for the better.  Yeah, yeah, yeah!!!

She thoroughly enjoyed her Spring Break.  She got to help out at the Spring Jamboree Softball Tournament her team hosted at Majestic Park, sit and watch ALL the games her team played in the tournament, and even had a great Easter.

Kassidy's Bunny Lala inspecting her Easter basket that the Easter Bunny left her.

Our baby girl leading the pack of Centennial Softball girls!

This week also I'm happy to report that she is only on 1/2 mg of decadron morning and night and by God's grace she will be weaned and completely off by next Monday!!!  This is big for Kass!

The only disappointment we've had since I last blogged, was last Friday when someone broke into Kass's car and stole so many of her belongings.  She was devastated and felt so violated, but again we know that it its just "stuff" and "stuff" can be replaced.  That day we were all so angry, but by the next day it just seemed like such a small thing to worry about when there is far more important things to worry about in this world.  Plus, we truly believe in karma and that person will get it's own.

Karma

April 2, 2012

It's 3:00am on Monday morning and I'm wide awake.  Earlier this evening I was so tired that I guess I set Kassidy's pump wrong.  Thank goodness she was awake when both bag 1 & bag 2 of her medication were going at the same time so she came to wake me up.  Crap! She shut her pump off and we got it going again. Whewww!

I noticed that it's been awhile since I've updated the blog.  March has been challenging one and when I actually write down what is going on in Kassidy's world it just makes it that more real. It's been full of ups and downs, but we all are still trucking along.

The week of the broviach line scare (btw had a scan and the line is fine) was the same week high school softball officially started.  Centennial played Foothill high school as a scrimmage game at their home field.  This amazing group of young ladies and parents gave Kassidy an amazing surprise.  All of the JV team were wearing Kassidy's Army shirts with "11 Strong" on the back and at the Varsity game, the parents were wearing theirs.  What a great homage to our girl!  Their team has dedicated their season to Kassidy and will be painting their dugout with Kassidisms.  This melted my heart!  Thank you Foothill girls!!!!!

11 Strong!

Thank you Foothill Team!

Our own Centennial Softball also surprised Kass that week by hanging a sign in the outfield showing support for Kassidy’s battle.  Such great group of coaches and girls letting Kass know that she is not alone.  Thank you also Centennial softball for all you do for Kass!  This meant a lot to her, especially that week.  She had a bit of frustrating couple of weeks and the reality of this journey thus far had gotten to her.

Centennial HS Softball Outfield Banner

Watching her most favorite game in the world.

That Wednesday Kass had her bowling banquet to attend.  At the banquet she received her white letter for lettering in 3 consecutive sports in a row and also received the “citizenship award.”  Take that cancer!!! We were so proud of her.  We are not sure sometimes how she does it!  I know there were times during the season that she was not feeling well and still muddled through her bowling matches.  Ryan and I were so glad she could actually be an active member of the bowling team again this year and help her team get 4^th in the Region.

Getting her "Citizenship Award"

Her White Letter!

Centennial's JV & Varsity Bowling Team with Coach Seiden

On Friday, Kyle came home from college.   We were all so excited to see him home for spring break.  We had already bought his ticket home since we were suppose to go on Kassidy’s Make a Wish trip this last weekend, but had to be rescheduled.  The weather in Australia is already getting cold and their winter is commencing.  Make a Wish wants to make sure that Kassidy has the trip of a lifetime, so we will be going the week of Thanksgiving which is end of spring and beginning of summer.

Sunday, Kyle and Kassidy entered a junior/adult bowling tournament at Santa Fe Casino.  They competed against some pretty good bowlers, but they had a blast just competing together.  It was great to watch!  Little did we know what the next week had in store.  That same weekend we had to have Kassidy’s bowling ball drilled for a bigger hole.  Her hands seem a bit swollen, but we did not think much of it.  We just thought she had been bowling too much.

At the beginning of the following week, Kass started complaining that her joints hurt quite a bit, but after the Shadow game on Tuesday night she came home and couldn’t even walk and right after dinner proceeded to throw up all of her dinner.  L We layed her down in her bed and noticed that her feet, ankles, knees and even hands were extremely swollen.  We frieked out!  We called the clinic emergency line and the doctor had us elevate her legs and told us if she continued to vomit that she would have to come off treatment and we would have to take her into the hospital.  That night we checked on her and iced her limbs.  Also, she only threw up that really long episode. which allowed us to keep her on treatment.

Next two days she stayed home from school and she pretty much slept all day long.  Her swelling went down, but she battled the 24 hour flu symptoms, at first we thought we would need to up her decadron thinking it was more swelling but glad we didn’t have to.  We also took her to the chiropractor that helped her feel much better and by Friday evening she was on the mend.

This Saturday, Ryan and I and a couple friends helped volunteer for the Leadman Triathlon sponsored by Lifetime Fitness.  They gave us the opportunity to volunteer and at the same time they donated to Kassidy’s cause.  Thank you Lifetime!!!  Also, that morning I took Kyle back to the airport so he could fly back to Boise and finish up his first year of college.  Crazy, Time flies!!!!  He too is on the mend with his stress fracture.  He is finally able to go on runs for 40 minutes or less and is doing some physical therapy.  His coach has red shirted him for this year indoor track, outdoor track and next year’s cross country.  This will allow him to run for four more years and give him time to heal.  All of us already miss him, but he should be home soon for summer vacation.

Sunday, Kass has felt great.  She went to breakfast & dinner with friends, dyed Easter eggs and hung out.  Thank you God! We are so glad and hope and pray that she gets to enjoy her Easter and spring break. 

Happy Easter All!

March 24, 2012

We wanted to thank two young men who took on an admirable quest, Ramses Cano & Javier Gonzalez, two ultra marathoners from Panama City, Panama.  These young men ran in honor of Kassidy and a boy named Gabe who is also battling cancer (leukemia).  They started their run in a little town called Volcan then ran up to the highest peak in Panama called the Baru Volcano (11, 398ft) down to Boquete and then finished in a town called David a total of 118 km or 73 miles.  At the highest point in the volcano they knelt down in prayer for both of the kids.  Pretty amazing right!

Javier posing with some my aunt's students at her school.

Thumbs Up!

We want them to know that we will be forever grateful for what they did for Kassidy.  You see we've never met them, but they were inspired by Kassidy's story.  We are thankful that they took this amazing challenge and took Kassidy's name in prayer a little bit closer to God.

Ramses holding Kassidy's poster at the highest peak of the Volcano.

Ramses & Javier,  Well Done!

March 19, 2012

Today started a little exciting.  As I went to flush & draw Kassidy's blood for her routine Monday labs the line was not budging.  I could not flush or get a blood return.  Oh my gosh, here we go again! I tried heparin and the line still would not budge.  I even called the infusion room at the Houston Clinic and nothing worked.  So I called Dr. Bernstein, Kassidy's local oncologist he instructed me to bring Kass in to the office; which I gladly did, but that meant I could not start Kassidy's 7:30 treatment.  She never feels well off.

At the doctor's office, he jiggled the line for a bit and just flushed.  Kass jumped in surprise, but not in pain.  Sigh!!!  He ended up drawing my CBC & CMP tubes for the blood tests I needed to perform and flushed the line with heparin.  Nothing I could have not done at home, but so glad he was there to do it just in case something went wrong.  We were soooooo thankful that the line started working again and that Dr. B was there to help.  Thank you God!

Since the line has been acting a little funny, on Wednesday we will have a line study to make sure the line is still viable.  We just pray that it is because we really don't want another catheter port to be surgically removed and a new one installed.  The last broviach from January is finally just healing around her chest.

On the way out of the office Kass had to throw up a couple of times and even when we got home.  It's amazing how much better she feels on treatment.  I even hooked her back up while she was on the bathroom floor just to make her feel better.  It took about 45 minutes and she was a different person, so she went to school and then to softball practice to coach the catchers.

A crazy morning ended up being a great day!  God is good.

All of you know that we are always looking for new fundraisers to keep raising money to cover Kassidy's medical costs.  It's so stressful knowing that we still have not raised enough funds to cover Kassidy's treatment for 2 years.  That's why I'm asking for your help!!! We have some big fundraisers ideas in the works.

We would like to again do a Kassidy's Army golf tournament and would love some ideas, raffle donations, & volunteer help.  Those of you that would like to help, just have ideas, or have golf contacts, please email us at ryanandmass@aol.com.

Also, on March 31st Lifetime Fitness is putting on Leadman Triathlon in Boulder City.  They have agreed to give donations for every volunteer that wants to donate their time.  Ryan and I have signed up to help out with Transition #1 or Transition Crew, this is the transition area from the swim to the  bike.  We are excited that Lifetime has given us this opportunity.  Those of you that would like to join us that Saturday morning, please register at the following link and DON'T FORGET to comment you are part of Kassidy's Army.

www.leadmantri.com

Please also check out all the other fundraiser we have ongoing on the left hand side of the blog.

Thank you all for supporting Kassidy!!!!!!  We will be forever grateful!!!!

March 11, 2012

It was a great week for Kass until Friday.  That morning she woke up with a headache and looked so tired.  I kept her home from school that day since it looked like she needed the rest.  We weren't sure if it was an allergy headache or just more brain swelling, so I gave her IV decadron and an allergy pill which was kinda of a bummer because we were on our way to weaning her from the decadron. She hates, hates her cheeks right now. Yes I know is temporary, but so hard to explain that to a teenager.

Also, in between ANP treatments I gave her a bag of fluids till it was gone since it looked like she was a bit dehydrated, her lips were pretty chapped.  She slept most of the day and the headache pain subsided quite a bit by the late afternoon, but not totally.

That evening we were going to celebrate my nieces 15th birthday at one of the casino ballrooms close to home.  Fortunately, we had thought ahead and had gotten a room at the casino which it was being held at, just in case Kass did not feel well.  So glad we did!

The girls at our table.

Kass is not one to enjoy getting dressed up, but she did.  She let me do her hair and we went to enjoy ourselves.  Kass made it a couple hours and then asked to go back to the room.  We were so glad she at least got to enjoy part of the celebration.

The next morning we woke early to go participate in Jaxson's 5k run/1mile walk.  We decided to walk with Kass instead of run, but we only made it 100 yards and we looked at her face and saw pain.  :(  She had instantly gotten her headache back 10x worse.  Ugh! We walked her back under the shade and I administered some IV decadron through her catheter right there, but she broke down.  She had big tears streaming down her face.  My heart instantly broke and I wished that I could take it all away. My poor baby girl! I think it was a combination of headache and frustration that she can't get her body to do what she wants.

Jaxon's 5k run/1 mile walk

We decided to leave, but by the time we got to the car Kass said she felt a bit better and wanted us to take her to Bullhead, Arizona to watch her hs softball team at least play the last game of their tournament.  Bullhead is only a little over an hour away, so we agreed.

At the game she got to sit in the dugout and be part of the team.  It was great to watch. She even got to ride the bus back with the girls.  I can't tell you how much she misses softball!  Softball is part of her, but cancer has taken that away from her.   I hate you cancer!

Such a symbolic picture, the girls still wear the #11 arm band honoring Kass's fight.  Thank you!

That smile!

I love those girls!

This week I ask God to please take these headaches away and give me patience.  I also ask to please watch over all those other kids we know that are fighting as well.  I ask you to keep them in your prayers as well.

Gage is doing well after surgery, but has been battling gait problems.  His parents are anxiously waiting the pathology report results to find what they should do next so the tumor does not come back for a fourth time.

Easton is doing ok this week, but his parents are prolonging his trach surgery till after their vacation so Easton can experience swimming one last time before he has to get a trach.

Jaxson was flown to Boston's Tuft Hospital for pediatric gene targeted therapy (to one of the only dr's in the country doint this, Dr. Burzysnki does it but only adults) because his body could not handle ANP.  He's doing better and under the watch of a hospital staff.