Make- A-Wish Trip

Well as you can see from the title, Chloe's wish was to go "see Cinderella". We left for Florida on September 5th and got to stay for a week. We stayed at Give Kids the World in our own little villa. It was themed to look just like Candy Land. It was so kid oriented and just a magical little place! Every night they had some sort of activity going on, and every day the "Gift Fairy" spoiled our kids with a pile of presents! They had an ice-cream parlor there, where you could get ice-cream whenever you wanted! My kids LOVED that, and definitely took advantage of it!

 

We also got tickets to Sea World, Universal Studios, and of course the Walt Disney Parks! The first day we got to Florida, it was already 7ish, so we ate dinner and explored the villa. They had a Winter Wonderland party going on that night with Santa! So fun1 They let the kids pick out any toy they wanted! They were LOVING it!!

 The next day, we asked Chloe what she wanted to do first and she wanted to see the dolphins, so off to Sea World we went! We went to go watch the Shamu show and made the mistake of sitting in the front row, all of our kids were crying when they got drenched! It was too funny! It started to rain about 3:30 that day, so we ended up going back to the villa for the night, and went to the party going on for that night.

The next day, we decided to go to Universal Studios. It was SO much fun! We went to Dr. Suess Landing. It honestly felt like you stepped into the books! IT was really cute and perfect for Chloe! She LOVED that whole area of the park, so we were there most of the day! Universal was amazing with her, and really treated all of us with so much kindness!

The next day we went to Disney's Magic Kingdom! It was SO hot and crowded that day so we ended up leaving after a few hours. We decided to go back to Give Kids the World and swim, and enjoy the villa activities. Colin was in heaven because there was an arcade room!

The next day, we were all SO tired! We hung out at the villa and swam some more. Around 3ish we all decided we wanted to go to Magic Kingdom again, so we got ready and went. It was perfect timing! The sun wasn't as harsh and it was a weekday so it wasn't as crowded.Chloe was able to meet Merida from Brave, Ariel, Belle, and some other characters.

The next day we decided to do Universal Studios again. We visited the Harry Potter area, it was amazing! Just like you are in the movie! We visited Suess Landing again, went to Marvel area of the park, and rode just about every attraction. We ended the night with dinner at Bubba Gumps, YUM!

The next day, was our last day. We ate breakfast and decided to head to the beach before we had to catch our plane. Cocoa Beach was awesome! I wish we would have made more time for the beach, because our kids really loved it! After a few hours, we got cleaned up at a near by car wash..yep a car wash lol. we couldn't find ANY public showers, so we sprayed off our sandy feet and legs at the car wash! Then we headed back home. The entire vacation was just truly amazing1 I can not fit every little detail, because there was SO much! We feel truly grateful for Chloe's wish granters Caroline and Irene. They gave us such an amazing experience that we will remember forever!

 

Making a Wish

Chloe recently got contacted from Make-A-Wish. She got referred to come to their Wishing Place to get a wish granted! They mailed her a key to unlock the wishing tower, where she will "declare" her wish!! So excited for my buggy!!

Life goes on... :)

This past year has been full of exciting things for our little family. We welcomed a new baby to our family on February 7th. His name is Logan Michael. He has been such a blessing to our family. The kids absolutely love him. Chloe is starting to adjust to being a big sister, and wants to help us out with him.
          Chloe has been doing great. She is feisty and smart.  We call her our little sour patch kid because she can be such a stinker, and then  the next second can melt our heart with her sweet little voice and face. She loves to ride her scooter with her sister. She LOVES to play dress up and dance around the house. She definitely keeps us on our toes, and that is a GREAT thing!! We have been going in every 3 months for her scans and check up with her oncologist. This past visit, her scans showed a decrease in the size of her remaining tumor. We feel beyond blessed! It is such a miracle that her little body has done so well since her last treatment a year ago, and now to get the news that her body is fighting off her tumor on its own is just amazing to us. She is our tiny little sassy fighter!

CureSearch Walk

Thanks so much for everyone that donated in Chloe's name and those that came out to walk in honor of Chloe. It means so much to us! I went last year to this same walk for a friend's little girl and never in a million years did I think I would be doing the same walk in honor of my own child. People think "not my child" but it CAN happen. My baby girl was happy and healthy before she was diagnosed. She wasn't premature or have any health problems. She was a typical thriving baby girl. Before getting introduced to the cancer world I had no idea just how many kids right here in Utah are fighting for their lives. I was naïve and thought cancer was rare for children. There has definitely got to be more CHILDHOOD cancer awareness!!  Chloe is the reason I walk!

3 Month Check Up

Chloe had her first check up since being off  treatments a few weeks ago. I can't believe how fast time flies when we're having fun!
 She had to go in for  a CT scan and a MIBG scan.  The CT scan was to check on her tumor. Since there is still some of it in her, they check for any changes in it. The MIBG is a scan where they inject her with a dye and it will specifically look for her cancer. She no longer has her broviac so she had to get an I.V. put in for her sedation. That was really hard on her. She is talking so well now, so for her to tell me it was hurting and to stop was really hard to hear.  I had a feeling it would be harder this time because she is no longer the little baby she was when we first started this cancer journey. She has an awareness of whats going on around her now, and it was really tough:(

After her scans we went up to meet with her doctor about the results. He let us know that everything looked great! There was no changes that they could see, so we are hospital free for another 3 months!!

Chloe has been doing great these past few months. She has started getting her hair back, it is so fluffy and soft, she reminds me of a little duckling! Her eyelashes came back with a vengeance, they are SO long! She has gained a few pounds on her little body. She seems SO full of life! I can hardly keep up with her some days! She is such a little talker,  loves to dance to any music she hears, loves her baby dolls, loves Elmo and Mickey Mouse, and can keep up with all the kids she's around!  I tell her everyday she is my lil miracle, and she really is!

Isn't she the cutest!!

As you can see her brother and sister LOVE her!!  In this picture she was showing us her muscles!

My sweet baby girl with her bald little head!  I honestly cannot get enough of her!!

Chloe Update!!!

     Chloe had to go in for her scans and tests this week. Her hearing and EKG (heart) test came back great. Her  MIBG scan is one that checks specifically for Neuroblastoma and it showed no traces of the cancer in her bones anymore!  The bone marrow  aspiration showed zero traces in her bone marrow. The CT scan on her chest did show her tumor was 87% percent gone.Which means there is still 13% of her tumor that is still in her chest, but her doctors felt very confident on just watching it every few months. They said from previous cases like hers, if the majority of the tumor was gone, then the tumor usually stayed "stable" and didn't grow or cause symptoms. IF by chance it did change between appointments then we would probably start up chemotherapy again or possibly surgery. They had explained to me that too aggressive of  treatment on her could cause just as bad side effects, so they try to do what is necessary, and kind of the "protocol" and if she doesn't respond, then they go to the next plan. They decided with her surgeon that doing surgery to get her remaining tumor out was too risky because of its location in her chest. It is very close to arteries and nerves...So with that news we had her broviac ( central line) removed. The surgery was SO fast and simple, she did great. and even was running about an hour or so later!  We go in for her appointment the end of June, and I am pretty anxious for it because I am SO paranoid with her. Every little sign that something is "off" stresses me out. I know I will probably always be this way with her, because she technically still has her cancer, but I am just taking each day as a gift!  She is seriously my wildest child, I love it! She has been running through the sprinklers, and taking lots of baths, and getting messy! Things she hasn't got to do since diagnosis,and life has seemed pretty normal around here. No more home health nurses coming over, no more meds everyday, and appointments every other week. It has been SO nice!  We feel like we have our lives back and we are definitely living them. LIFE IS GOOD here at our casa!!

Last round of chemo!! YAY!

Last week I took Chloe in for her 8th round of chemo. I cannot believe we have finally reached this point. At diagnosis when they told us she would have to come in every 3 weeks for 3 LONG days of chemo it was SO overwhelming and scary. Thankfully our strong baby girl has done extremely well through all of it. She has the most amazing spirit. There have been those days that you can tell she doesn't feel well, but she refuses to relax. She just wants to keep up with her brother and sister. I am SO thankful that she is such a fiesty little girl, it sure has helped her through this crazy cancer journey. In a few weeks we have to go in for a CT scan, X ray, a bone scan, EKG to check her heart, an audio test for her hearing, and a back poke to check her bone marrow...if all come back favorable ( at least 95%) then they will schedule her surgery to get her line removed. I am so happy to be near the end of this. I want to be able to get back to our life and let Chloe enjoy her childhood. This cancer has stolen so many moments from her like her first birthday party, family Christmas parties, many other get togethers, and small day to day things like playing at playgrounds or just splashing in the tub. Because Mike (Daddy) works out of state 20 days at a time it makes me the primary parent trying to do it all for all 3 kids, which unfortunatly hasn't worked out so well the past months. My other two kids have had to be sent to sitters, and I have missed some milestones in their schooling, which has made them and me sad. So needless to say this can't be over soon enough!

Round #7

So we took Chloe in for her 7th round of chemo a few weeks ago. The days leading up to it were SO hectic. She was scheduled to go in for more scans before chemo, but somehow they were scheduled wrong and got cancelled. I was really upset, because I felt that since the receptionist didn't do his job right, Chloe's wasn't getting all the necessary care and attention she needed. I was SO nervous to meet with her oncologist, because I was afraid I wouldn't be able to control my frustration and anger, But thankfully he was so apologetic about how unorganized and crazy the scheduling had been for her. I explained the concern of not getting the scans, since I was told that she needed them. He explained that usually she would not have gotten the scans, but since she has been doing so great and her tumor has shrunk significantly, they were wanting to see if they could stop her chemo, after this round...round number 7. As I mentioned before that with neuroblastoma, only 90% of the tumor needs to shrink, and they will "monitor" the rest of it. Her doctor said that usually the body can fight off the rest of the tumor on its own, without any chemotherapy, or surgery....YIKES! I am REALLY scared about a "cancer tumor" just chilling in her chest, hoping her body fights it off. I told him this and he tried to assure me that it will be OK, and that they are very confident that her body will fight it off, but to ease my mind they said they will just go through with the 8th round they had planned on. I asked him about it not going away on its own, and he said they will keep a very watchful eye on it and if it looks like it is not, then we will try more chemo, or radiation or surgery. He said with such a small child they have to do a balancing act with therapy, meaning they want to get rid of the cancer, BUT too much chemotherapy can cause much worse side affects for her, so they try to let the body fight it off on its own when they can...
Not gonna lie, it freaks the crap out of us. When we were told our baby has cancer it turned our world upside down, but now we have adjusted to all the chemotherapy, blood transfusions, home health visits, and scans because we knew we were headed to recovery for her, now that she is almost getting to the end, and there is still a little of it in her still, we are SO nervous, probably more nervous than when we started this crazy cancer journey...I really just hope and pray she keeps being the feisty little fighter she has been and fights this. We go in for her 8th round next week, and then she does all her scans and tests that she had done at diagnosis. These will determine where she goes from here. Again thanks for all the support and prayers! We will keep you posted!!

Round 6 and Great News!

**Playing catch up***
So we went in for Chloe's 6th round of chemo and her checkup with her doctor. Chloe is physically doing pretty well considering all her little body is going through. She has gained a few pounds ( which is pretty uncommon with cancer cuties), almost never acts sick, and is developing like a "normal" one year old, like wallking, talking etc. While meeting with her oncologist before chemo he went over the results of her ct scan again. He said when he initally told me the results he only had a 2D image, and since had gotten it in 3D, so he was able to see it all around. The 3D showed a great reduction in her tumor, great as in 85%!!! Also there was hardly any traces of it in her bones. We were SO relieved and grateful that she is doing SO well. With neuroblastoma they like to have at least a 90% reduction, so being that her scan was done half way through and it has shrunk that much, she really is doing so so great! We are on cloud 9 with our sweet little fighter!

Another Round Down

Last week we had to go in for Chloe's CT scan so we can see how well the chemotherapy is killing her cancer. If any of you have had the pleasure of having to take a one year old in for a procedure like this, you know how awful it can be. We had strict instructions on not giving her anything to eat after midnight, then nothing to drink after 3am..which means I was up at 3am for the day, since she didn't go back to sleep after she woke up to nurse and got denied :(... well we get to the hospital and wait forever, still with a hungry crying baby, and finally they come back to start her I.V...She has to be sedated because she is so small and moves around everywhere. The nurse tried both hands and finally her foot before they got a vein they could use...talk about torture. Then back we went. They told me my doc would call me about the results.
The next day she started round 5 of her chemotherapy, I met with her doctor and he told me that her tumor is shrinking! Not enough to do surgery just yet. He told me that we will continue with the 8 rounds of chemo they had planned for, and at the end of these we will rescan and see what comes next.. it might be more chemo, chemo and surgery, just surgery..etc., he really couldn't tell me for sure what the plan would be, but seemed confident that her treatments are working. I was a little upset that there was no exact time frame as to when this nightmare will be over and my baby will be well again, but I just have to have faith that all will work out and her doctors know what they are doing, so until that day comes we will just keep loving each other and praying for her..that's all we can do.

# 4..Half way there

Well we are on the down hill, Chloe had her 4th round of chemo this week. This time was different then all the other times because we were outpaitent with her chemo, which means instead of staying 3 days at the hospital we got to go home each night. She has been really sick this round, and just keeps throwing up all her meds, so I am not sure I really like outpaitent, but they have now given me meds to put through her broviac, so hopefully it helps. I am still debating if next round will be inpatient or not. While I love coming home to my kids each night, I think Chloe does so much better inpatient:(...Chloe has done her 4th cycle of chemo and so we will be doing all her scans again to see how well her body and her cancer are reacting to her chemotherapy, and to see if we can schedule her surgery to get her tumor out. I am so overwhelmed with emotions. I am scared that it isnt working, then nervous for her surgery if it is, then relieved that we are half way through, etc. I can go on and on....going crazy I tell ya;)

On another note, Chloe is starting to walk all over! I had been so nervous about her not walking because of all the stuff she has been going through, and also that she has to get her neupogen shots in her legs every night ( the med. makes her bones and joints hurt) but she is coming along great!! She has lost most of her hair, but there are still a few areas hanging on..I am too afraid to cut those pieces off, because the clippers look like they would hurt, so she will keep them until they go on their own. She is absolutely in love with her daddy, she yells for him ALL THE TIME! and he loves it:)

We have had so many people show support, kindness, and love.We appreciate you all so much. As much as we try to stay postive and composed, there are definately hard days, and it has been nice to have your support, love,and help. THANKS SO MUCH! Love Mike and Mary:)

Round 3..

Last week we were back up at PCMC for 3 days for round 3 of treatment. Chloe as usual did pretty well considering what her little body is going through. The first day we are there we spend most of the day getting fluids because the chemo meds that they give her (carboplatin, and etoposide) can cause damage to her liver, so they put fluids in her and moniter how much urine she is producing before they will start her treatments. After she has had enough wet diapers which is usually about 4 hours after then they start her chemo meds. She usually gets 3 different kinds ( carboplatin,etoposide and cyclophosphamide) and they run for 1 hour each, after those have ran for 3 hours, they give her fluids for the rest of the night and into the next day, which they give only the etoposide, and on the 3rd day the etoposide again. The first day we are there Chloe usually does pretty well, the biggest challenge of that first day is making sure she doesn't step on her I.V. and yank it out of her, so I spend the whole day holding her and keeping her entertained. That first night into day 2, I can definitely see that she is not her happy self. She sleeps ALOT, dry heaves and will usually not eat anything, day 3 she doesn't act sick as much, but you can tell she still isn't feeling well, and will sleep alot. This time we were up at the hospital my mom had Colin and Paige, so she decided to bring them up to see her. Chloe really needed them, she literally hopped up from her hospital crib and started grinning ear to ear and squealing when they walked in her room. It is AMAZING how much joy my kids bring to each other. They were able to hang out until we were discharged, and they came home with me. I was glad they were able to finally come up to the hospital to see what goes on when mommy and chloe are gone at the hospital. We have been home for almost a week and Chloe is doing pretty good. I was told by the nutritionists at PCMC that I need to fatten Chloe up, she is in the 2% for her weight, so I have been giving her lots of goodies, she is loving it! Her home health nurse came and drew labs yesterday and her blood counts all look good. I still have to give her neupogen shots every night, to help bring her white blood cells up which kinda stinks because they make Chloe sore, but for the most part she is being a trooper like always.

Round 2 of Chemo

This past Tuesday was Chloe's 2nd round of chemo. This time was different from the last time because instead of giving her a different chemo med each day for 3 days, they gave them all to her in 1 night, one after the next. Also her broviac site (her i.v.) has been really giving her a hard time. The dressing they use to keep it protected is SO harsh on her baby skin and has given her a nasty rash all over her chest, making it hard for her to relax. This time around it was definitely harder on her little body, but she refused to let it slow her down. I could tell she didn't feel well because she would hardly eat anything, and kept dry heaving. She just cuddled up to me and slept alot when we were at the hospital. We were able to leave the next afternoon though, because she was doing considerably well. She was definitely happy to see Colin and Paige when she got home, she forgot how crappy she felt as soon as she saw them. The past couple days she has been doing well, and is as happy as can be:)

Chloe's story...so far

I will start on how we realized something was wrong....
October 1st 2011..night time, Mike was holding Chloe when he noticed her pupils were different. Her right pupil was big and her left very tiny. We turned on and off the lights to see if they would change but only her right pupil would. We both knew something wasn't right so we took her to the urgent care, from there they told us to go straight to Primary Children's Medical, the urgent care doc told us she had meningitis. WHAT?! So we rushed her up to PCMC emergency room. After being admitted the doc said she did NOT have meningitis, she had zero symptoms of it. OK?! So now we were really confused. We had a CT scan done on her head to see if she bumped her head, but it came back normal. The doc asked us if she had ever had any other eye problems, and in fact she did. Through out the summer I had noticed her left eye droop at times, her pediatrician told me it was allergies. The ER doc said he thought the two symptoms were related. He called it "Horners Syndrome"..he was fairly certain, but referred us to see a neuro- opthomologist at the Moran Center. We went home that night feeling OK with his diagnosis because he said it was most likely something she was born with, and "Horner Syndrome" does not pose any health risks. A few days later we took her to the Moran Eye Center where we did a cocaine eye drop test( yes they put liquid cocaine in my 11 month's eye) and her left pupil did not dilate, her right one was HUGE, freaky huge. We also was pointed out that day that Chloe doesn't sweat on her left side, a perfect line down her head of sweat, and other side dry, another trait of Horner Syndrome...weird. The confirmed she indeed had Horners. They had determined she was not born with it, based off lots of pictures we brought in of her since birth. They believe she aquired it in May or June. So they referred us to PCMC for an MRI to see if there was nerve damage, or a tumor or still possibly nothing. They explained to us that when you suddenly acquire Horner syndrome it usually means there is an underlying problem in the body..Horners is kinda a "side affect" and not the actual problem. So a few days later we go in for the MRI,still fairly confident its nothing serious.... Boy were we wrong. The MRI detected a tumor in her chest on the left side (causing her Horner symptoms because the tumor is pressed on nerves in her neck). From that appt. through the rest of October our days were filled with every scan and test imaginable. We met with an oncologist at PCMC who told us she believed Chloe has Neuroblastoma, a type of cancer that affects the nerves. On October 18th, we went in for her biopsy and bone marrow aspiration,they then confirmed the Neuroblastoma and put a broviac line( an iv placed surgically to give her meds and draw labs). Further tests have confirmed that she is stage 4 because it has spread to parts of her bones. Her doctors have told us that even though it is stage 4, they class her in intermediate risk group due to her being under 1 year old at diagnosis and she doesn't carry a certain gene found in this cancer. They tell us this is VERY good factors and she has a great chance of recovery. Chloe started her first round of chemo on November 2, the day after her first birthday.Not our ideal way of celebrating but if it means more birthdays for her than that's what we have to do. Chloe has handled everything from her scans, surgery and chemo like a champ. She is simply AMAZING. I mean if you've seen her in person, she is the most dainty little girl, but she has proven herself to be a fighter.We have about 6 months of chemo and then they will rescan her to see if they can remove her tumor( they need to shrink it because it is so close to her spine). We have a tough road ahead, but she is worth the fight. Thanks so much for the support:)