2025…Here We Go!

Well, 2025 is off and running isn’t it🤣

We are very grateful that Hutton could stay healthy enough to spend Christmas and New Year’s at home. Because trying to rush to the emergency room during that time did not sound like a good time. We were concerned about New Year’s since that was after her 3 Day Chemo treatment because as we have said before that is the hardest on her little body. 

She was able to make it through the new year doing well but having issues with food tasting good (which always happens after her 3 days). Other than that no real problems. So, on Thursday, Steph took her in for her labs to check her levels. The tests showed they were low, but what the doctors were more concerned about is there were no platelet numbers. So another lab was ordered for Friday. Hutton did an amazing job dealing with getting “poked” twice in two days. Unfortunately, her numbers had gone down, so off to UCLA to get platelets. Since I was at work, Steph and her mom took her up to UCLA for a platelet transfusion. While up there they took her temperature which was 100.1º which technically isn’t a fever but because her numbers were so low it could cause a serious issue without warning. Now here is where the adventure begins:

With the temperature they wanted to admit Hutton for IV Fluids and antibiotics as well as a blood transfusion, but there were no beds available at UCLA in Westwood so they transferred Hutton (and Steph) by ambulance to UCLA Santa Monica. At this time Steph’s mom took her car and returned home, while I got off work, went home, gathered all our hospital stuff, and headed up to meet them. 

Hutton was in good spirits and received her transfusion. More importantly, she was able to finally watch Mufasa 🤣

As we were preparing to go to bed, we were told that a bed opened up back at our UCLA Westwood so they would be transporting her back for the remainder of her stay so she could stay under “her team”. Transport arrived around 2:30 am and we were in a room by 3:30 am. Luckily Hutton was already asleep and pretty out of it for that entire time.  

Labs this morning have shown a slight improvement in her numbers and she hasn’t had a fever over 100 since last night. All good things!  And on that positive note, we got our favorite hospital room when we came back to Westwood!  Yes, that may sound weird, but when you spend as much time as we have in the hospital staying in all the different rooms, you find one that you like. We were also joking with the nursing staff about how being at a different facility felt weird and we felt like we were back “home” once we came back to Westwood. 

Hutton has a big week ahead of her with an appointment to meet with her surgeon on Monday(not sure if we will still be here or have to drive back up that morning), she gets re-admitted on Thursday for her 5-Day Chemo treatment and ends that visit with a PET Scan. Please pray that she continues to stay in good spirits during this long week. She has been putting on a brave face and staying resilient and strong, but it has definitely been taking its toll on her. 

Thank you all for your love, prayers, and support. 

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And don’t forget to order your Hutton Strong Shirts and hoodies!!!

ORDER HERE!

Hutton Strong Shirts

Many people have asked if we would create t-shirts to purchase to show their support for Hutton. With the help of some amazing friends, we finally have a way to make this happen!

If you want to purchase a shirt or sweatshirt click here or select the Hutton Strong Shirts button on the home page.

Orders will be taken until January 12, 2025. Once we have received all orders and payments you will be contacted when your order is ready for local pick-up and/or has been shipped. (Lead time is approx. 1-2 weeks)

Pricing (+ $10.00 for shipping):

• Adult t-shirt: $25.00 ea.

• Kids t-shirt: $20.00 ea.

• Hoodie: $40.00 ea.

Cash or Venmo will be accepted. Venmo information will be provided via email once you have submitted your request.

• In the Messages section below, please indicate the number of shirts and/or hoddies and size(s)

  • Local pick-up will be available. If you need your order shipped please include your mailing address

    • Example: 2 Adults: 1 Large, 1 Medium | 3 Kids: 1 Large, 1 Medium | 1 Adult hoodie.

    • Shipping Example: 2 Adults: 1 Large, 1 Medium | 3 Kids: 1 large, 1 medium | 1 Adult hoodie. Mailing Address: 123 Main St, Anycity CA 78910

We are working to have them available for everyone who purchases one to wear while participating in the Stripes of a Warrior’s Super Warrior 5K Run.

All funds raised through sales (excluding shipping costs) will go directly to the Duenas Family to aid in medical bills and other expenses related to Hutton’s treatment and care.

Merry Christmas!

Sorry for not posting an update since Hutton’s last treatment date….but that was intentional. You see, I was reluctant to write and post an update after she was released and before Christmas because I did not want to jinx anything. Is that superstitious…yes. Was I thinking logically….no. Is the end result simply confirmation bias…probably. 

I wanted to do everything I could to set her up for being able to spend the holiday(s) and Christmas as “normally” as she could, which meant her not having to go back into the hospital for any reason before she needs to and especially so that she was not in the hospital on Christmas. Which is what we prayed for every-single-day. 

I know I have written before about focusing on the things I can control and trying not to think about the things that I cannot…and it helps 99% of the time, but it is still stressful and taxing going to bed at night, and not knowing if I am going to wake up to Hutton having a fever and needing to run her to the ER. I can only liken the feeling to being deployed overseas and “crossing the wire” or every day working as a police officer (IYKYK). You try not to focus on the unknown that could happen and lean heavily on all the preparation, training, and planning prior to increase the odds of a positive outcome…but the thought, the knowing, the worry, is always there in the back of your consciousness. And I literally prayed every single morning that she would stay healthy and strong throughout these 12 days before Christmas. 

It is now Christmas.....so to update everyone (Fair warning this is a long one):

Hutton was released from her 5 day treatment around 10pm on December 14th. Her blood count was on the borderline low, so she had a blood transfusion prior to being released to get those numbers up and hopefully be able to last the 12 days she would be home. Well, she made it and was in great spirits!! She has been eating well (on a Wendy’s kick) and is being her normal crazy, wacky, and sassy self which is such a huge blessing.  She had to get labs done mid-week to check her numbers, which she was not happy about. We chose to take her to Quest, which meant getting “poked” to draw blood, rather than making the drive up to UCLA and having them access her port. She was very anxious because she does not like getting poked (what child does) but she was very brave and did an amazing job. We are so proud of how much bravery and strength she is developing being put through everything she has had to go through. 

I came home from work one day and she was very excited to tell me how she scared her mom, so of course, I tried to make it worse, and told her she should set up her iPad ad record her scaring her mom. Well that completely backfired, and now, every day when I come home she tries to record scaring me on video. Little prankster 😍

The Saturday before Christmas, her Gymnastics gym did a “drive-by” Christmas celebration for her. Before their annual Christmas Team Party, they met up, decorated their vehicles and then drove by the house to wave, say hi, and wish her a Merry Christmas as she watched, bundled up, from the bed of my truck with her coach. It was very sweet of them and she enjoyed seeing the love and support from her Vibe tribe. 

 Though she initially wanted to keep her Christmas-Eve-Eve sleepover tradition with Kiki, we decided that may be too much and instead said told her that she would be able to go and hang out do ALL the Christmas traditions she normally did for Christmas-Eve-Eve, but then would need to come home rather then spend the night. A week before, she told Steph she had changed her mind and didn’t want to do that anymore. We think she was probably nervous and anxious as she did not really know what to expect and I am sure the fact that she spends 99% of her time not at the hospital at home, we think leaving the house like that may make her nervous. So we adapted and instead of her going to Kiki’s, they came to us and she was able to salvage some resemblance of her Christmas tradition and they were able to watch the gym drive by with us. 

Now it is Christmas morning and praise be to God Hutton made it through these last 12 days with zero issues. She has been eating like a champ, and acting like her crazy, sassy self. It was an absolute blessing to see her acting like a “normal” 9 year-old. This morning started off with a little hick-up. Right before we let Hutton go down to see the tree and presents, she began crying saying that she was just sad she had to go back into the hospital tomorrow. We had a quick discussion about how blessed she was to be able to spend Christmas at home, while some kids are currently in the hospital. She said she understood and is happy she is home for Christmas, but still sad she has to go back into the hospital tomorrow….which is completely understandable. Now we plan to spend a nice relaxing Christmas Day together, as a family, home. 

Tomorrow we will go back into the hospital for Hutton’s 3-Day treatment, which is always the roughest on her little body, and also hopefully get her PET Scan and MRI to get an update on the size of her tumor and get an idea as to when her surgery will take place. 

Thank you all for the continued support, love, and prayers. God has definitely been making his presence known during these trying times. As I think of all of you who have continued to pray for Hutton,  I am reminded of Matthew 18:19-20:  Again I say unto you, That if two of you shall agree on earth as touching any thing that they shall ask, it shall be done for them of my Father which is in heaven. For where two or three are gathered together in my name, there am I in the midst of them.

Thank you from the bottom of our hearts for your prayers and we wish you all a Very Merry Christmas. 

TRADITIONS

As a mom, you create traditions when you start a family. At times, especially during the busy holiday season, it seems like sticking to these traditions year after year is more of a chore (especially as your kids get older and don’t necessarily want to participate in said traditions).

I didn’t realize until Hutton started chemo just how different this holiday season would look, and honestly, the last thing on my mind was keeping up with our holiday traditions. This year was just going to be different.  

A lot of our holiday traditions are with Kiki and her family.  Kiki (Kim but Hutton calls her Kiki), is my best friend of 25+ years. She is mom to Bryson (10), and Grey (6). Bryson and Hutton are 6 months apart in age and have practically been raised together, so all of our traditions have both Bryson and Hutton together (then Grey 4 years later).  We were ok with our holiday season looking a little different this year, but in true Hutton fashion she was not going to be ok with that and there are certain traditions she wants to keep. We know that we have to do things around her chemo schedule and how she is feeling, as she gets really overwhelmed, overstimulated, and tired easily due to the chemo.

Well, It just so happened that “Merry Kiss Me” at Dana Point Harbor started on a chemo “off” week and Hutton was in good spirits, so in the middle of November we put on our Christmas shirts and hats and we upheld our Merry Kiss Me tradition, just like every other year. Did it look a little different this year? Yes, yes, it did. But we make it work! That is a box checked off the Christmas traditions list! 

We have let Hutton lead the way and tell us which traditions she would like to try and keep this year. The few she would like to still uphold are - her Gingerbread Party and our annual Christmas Eve Eve sleepover at Kikis house. There are also some she would like to skip, like visiting Santa, which luckily we were going to have to do anyway due to her compromised immune system. Which brings us to what we have been struggling with these first few months of her treatments…how do we try and give her a semi-normal life, allow her to see her friends and how much they love and support her, all while keeping her as healthy and safe as possible so she doesn’t end up in the ER or even worse ICU…because an, “Oh its just a little sniffle” for everyone else could mean disaster for her. 

With that said, we are going to try our darnedest to make it happen, starting with her Christmas Traditions. We are praying that her chemo schedule will not play a factor this holiday, that she will stay healthy with no unexpected trip to the ER, and that allow her to still be able to experience as normal of a Christmas that she can, keeping her compromised immune system, and not being able to be around anyone who is sick or even has been sick it in the past couple weeks. It will be a challenge but we are determined to make it happen! 

Sometimes You Just Have to Get Out of The House!

Hutton’s doctors have said it is alright for her to leave the house, as long as she goes somewhere outdoors, and if she goes indoors she needs to wears a mask. We have been struggling with finding the right balance for her. On one hand, we want to put her in a protective bubble away from anyone and everyone so that there is minimal to no risk of her spiking a temperature or getting sick since she has such a weak and compromised immune system. On the other had, she needs to be able to be able to live as close to a “normal” life that a 9 year-old does and no 9 year old needs to be cooped up in a house only to go out to be cooped up in a hospital. Especially when she actually asks to go somewhere. 

See, Hutton’s favorite places to go are Barnes and Noble (ALLLLLLL the books!) and Nordstrom (the chicken fingers and mac & cheese). Yesterday, she asked if she could go to both those places. So we ventured down to Fashion Island to get out of the house. As an added bonus we got to spend time with Grandma Fifi!  

Grandma Fifi was my “other mom” growing up and I grew up with her 4 sons, so naturally she is Hutton’s “bonus” Grandma and boy oh boy do we love her! The smiles on Hutton’s face today were beautiful! I’m sure being spoiled by 2 of her Grandmas had nothing to do with that! 🤣🤣🤣

We strolled around Fashion Island, looked at the koi fish, did a little shopping at Anthropologie, A LOT of shopping at Barnes and Noble, and ate lunch at Nordstrom. Hutton even wanted to walk around and not be in her wheelchair when we were in Nordstrom which is a huge step!!  

It was just so nice to see her talking, eating, and behaving like a normal 9 year old. To be able to have these moments when she is feeling good in between chemo sessions is such a blessing. We know how fragile her immune system is and in the back of our mind we are constantly thinking if we should be doing this, and worrying that she could touch something and get sick….we don’t want to expose her to anything, but we also know how beneficial these outings are for both her mental health and for her healing, and I definitely saw that today.

We are still working on finding a comfortable balance for this, which mainly does depend on how she is feeling and if she wants to be “social”, and we are hoping and praying that she will be able to venture out a little more and have more physical interactions with her friends and everyone who has been showing her so much love and praying hard for her healing. 

A Week “Off”…

Well, yesterday did not go as expected, but once again I am so proud of Hutton dealing with another set back. After the last treatment sessions, we finally think we had everything locked in. We asked for a later appointment time so Hutton wouldn’t have to be woken up so early and we wouldn’t feel rushed the entire morning, we had our packing system dialed in, and I had my truck loaded with almost 45min to spare, which was nice, because Hutton asked for 5 more minutes of sleep (which made me think of what I have to look forward to when she is a teenager :-) ), which we were able to give her. Once she got going, which is always stressful in and of itself, she knew she had to go, but like everyone else in this world, doesn’t want to, after all, who WANTS to spend 5 days in the hospital? But once she was in the car and we were on our way, I could see her mind working and processing everything as I looked at her through the rearview mirror. 

Almost 2 hours later we arrived at UCLA. I perfected the parking situation(yes I know very “Dad” of me 🤣) and everything was smooth sailing…we felt confident, and we felt like we finally had this down. But of course, things out of our control decided otherwise.

The nurse who accessed Hutton’s port was “new”, which we didn’t realize until later. Nothing against her, we all have to learn somehow and she was extremely nice and doing her best, but she had an issue accessing the port and had to get another nurse to come in and move it into the right position, which was unexpected for Hutton and caused her a great deal of pain. As heartbreaking as it is to watch and see EVERY.SINGLE.TIME, she dealt with it well. 

They took her labs and we met with her doctor, got a lot of clarifications on some stuff, and discussed some of the questions that concerned us, he gave Hutton the prescription to eat as much ice cream and milkshakes as she wanted which she was thrilled (trying to keep her weight up which is extremely difficult). We then went to In-and-Out for a shake and fries (she tried a cheeseburger but it was “disgusting”) while we waited for a room to open up. As soon as we pulled into the drive-thru we received more news that was outside of our control. Hutton’s numbers were not high enough for treatment this week, and she needed another blood transfusion. Hutton heard this and was now upset that we WEREN’T staying. Not because she wanted to but because she went through that ordeal with her port and now was going to have to get it removed. Since she needed a transfusion, we were able to explain how this happens sometimes and the port still needed to be accessed. And bless her heart, she started crying and apologizing for her numbers not being good enough for treatment. We had to explain to her that it happens sometimes, that her friend Bradley (who we were representing by wearing his shirt) had the same thing happen to him, that it wasn’t her fault and she had nothing to be sorry for. Again, she was able to take this news in stride and overcome everything. She successfully completed her transfusion, which was finished just in time for peak LA Traffic back to Orange County. ETA 2 hours. Looking at that drive time, 2 things I have been meditating and praying about helped me handle it without getting upset or agitated. 

1. Everything that has occurred so far with Hutton’s diagnosis, doctors, and treatments, has happened so succinctly that there is no way it is all a coincidence. God has had His hand touching this beautiful girl from the moment she was born. Even if we cannot see the “why”, He has placed us at that exact moment and at that exact time for a reason. All we need to do is have FAITH in that. Because who knows, the “setback” today could have protected her from something even worse tomorrow. 

2. I am also reminded of the single most important practice in Stoic philosophy, which can be simply put:  “You don’t control what happens; you control how you respond.”

With all that being said, we got home around 8 p.m. that night and are now looking forward to an unplanned week off from the hospital. Hutton is going to rest as much as possible, eat, and hydrate, and we will be returning next week to continue the fight and stay Hutton Strong. 

Thankfulness

We wanted to take a moment this Thanksgiving Day to express our heartfelt gratitude for the unwavering love and support you’ve shown our family during these challenging times. It’s been only 6 weeks since Hutton bravely began her battle against cancer, but it feels like a lifetime ago, or even a completely different life…B.C. - Before Cancer

In these past 6 weeks, Hutton has experienced a myriad of emotions, from sadness and frustration to feelings of helplessness (asking “Why me?”). However, she has never allowed these emotions to consume her. She’s felt them, processed them, and then emerged stronger and more resilient than before. Despite multiple unplanned hospital visits, the stress of the emergency room, and extended stays, she’s shown incredible inner strength and perseverance.

It’s truly mind-boggling how a 9-year-old’s mind can comprehend all this. But one thing is certain: adults and society could learn a great deal from these young warriors.

We’re doing our best to explain everything to Hutton and provide her with the information she needs to understand. While it can be difficult to encourage her to focus on the positive aspects of her situation and express gratitude, we can always count on telling her how many people out there love and support her and pray for her. We want her to know that she’s not alone in this journey, and we couldn’t do this without the incredible love, support, and prayers of every one of you.

Every year, as I am sure most of you do, we go around the table and say what we are thankful for. But this year, what we are thankful for the most, we cannot really say out loud to her.  We can’t say, that we’re thankful that she is alive, that we caught her cancer when we did, that we pray every day that next Thanksgiving we will be able to celebrate that she is cancer free and we have another reason to call her our “Miracle Baby”. 

But what we can say is that we are so, so, so thankful for every single person who has prayed for Hutton, who has dropped off a gift for Hutton, who has sent a meal, who has donated to the GoFundMe, who has reached out, who has been there, and who has thought about our sweet girl and our family. We can say that we are thankful that Hutton is surrounded by such a large community of strong, loving, and faithful friends/family.

So, on this Thanksgiving Day, we’re incredibly thankful to be able to spend this Thanksgiving at home. We pray that we can continue to enjoy the next 4 days at home before returning for her fourth round of chemotherapy. And we’re forever grateful for the love, prayers, and support you’ve shown us all.

Thank you from the bottom of our hearts. We are so very thankful to each and every one of you. 

Another Unexpected Stay…

Well, the very next morning after we posted Hutton’s previous update, she spiked a small temperature. Normally we wouldn’t think anything of it, especially because she was feeling fine, just felt a little warm. After calling her medical team they recommended  she come in to get some labs done and a round of antibiotics to be safe. The doctor we spoke to did not expect her to be admitted, so we just grabbed what we needed for the day and left to go back early Friday morning. Well that was definitely a lesson learned the hard way and we will be setting up our “Hospital Supply Go-Bag” accordingly.

Long story short, Hutton ended up being admitted, again and I ended up on a 2 hour drive to go back home to get what we needed and another 2 hour drive back. (Total Time driving including the initial trip up there was about 5 hours)

Though that is obviously not ideal and sucks as much as it sounds, it ended up being for the best. Later that evening Hutton’s temperature spike to 104ºF and we were vert thankful we were in the hospital when it did. What is strange about this time is that all her blood levels were good and she was not presenting any symptoms of being sick, even when her temp was at 104ºF she said she felt fine. 

3 days later, we are finally back home…again. It is hard to accept the fact that we don’t know exactly what “caused” the fever as she had no virus or bacteria, but we do know this is the second time something like this has happened with this particular cocktail of chemo drugs. This is also the cocktail that had such a positive effect on her tumor after just one round, so we can speculate, but there is no definitive reason as to why. So all we can do continue to be extra vigilant when in comes to her after-chemo care and continue to be overly and abundantly cautious. These “unexpected” trips to the hospital are extremely hard on Hutton, mainly because as good as some of the staff is at UCLA ER, it is definitely not a place for a immune deficient child and the atmosphere in and of it self is stressful. We are praying that we can figure out a way to pre-empt this from happening in the future. But the important thing is she got the treatment she needed, she is back home, and in good spirits.

Again, we thank you all for your continued prayers, messages, love, and support. 

Therapy Dogs are the best

ROUND 3:

We’re home for 11 days!!!! 11 whole days!!!  Hutton rocked this round of chemo (week 5, round 3) and we chose to come home late last night right after chemo instead of today.  The chemo meds she got this time are the same chemo meds she received her very first round that had icky side effects and made her levels drop and sent us back to the hospital earlier than expected.   

After going through all of that and tweaking her meds we think we have it pretty under control this time around and pray the multiple antibiotics she is on will keep her levels up so she can enjoy the entire 11 days home and we won’t have to rush up to UCLA again. 

Thank you so so so much for all your prayers, messages, love, and continued support. 

The Real MVP

Mimi is the real MVP in Hutton’s cancer journey!  

Mimi is Steph’s mom and Hutton’s Mimi.  She has a “granny flat” on the back of our house, affectionately known as “Mimi’s Suite”.  It was completed the day Hutton came home from the hospital after she was born, and it is currently Hutton’s favorite place to be.  

Mimi has graciously given up her suite and moved into the guest room so Hutton can sleep in Mimi’s room.

Mimi has been amazing in this journey and is the true definition of strength, love, and resilience. As we traverse this arduous journey battling cancer and undergoing chemotherapy, she has steadfastly supported us, serving as our rock and keeping us grounded in ways that defy description. She’s not only handling all the little things we can’t keep up with at home, but she’s also taking care of the house, the dogs, and all the “home things” while we are in the hospital; she is keeping everything steady, organized, and running! 

Mimi has always been Hutton’s biggest supporter, but seeing her step up in this way has brought a whole new level of gratitude. She’s the quiet hero, putting her needs aside to make sure we’re cared for, cheered up, and comforted…and she does it all with a heart full of love and strength. 

2nd Treatment Done!

We’re going home today!  5 days in the hospital feels like 8,432,761, but we did it and we’re headed home this evening! 

Hutton did SO GOOD with this round of chemo!  The main side effect she experienced with these specific chemo drugs was feeling sad. She would look at us with tears in her eyes and say “I am just so sad and I don’t know why I am sad because I want to be happy but I am just so sad!”. And was asking for hugs, which we of course gave her in spades.

Since Hutton ended up back in the hospital in between chemo sessions with febrile neutropenia last time, the doctors wanted to do a few things differently to be pro-active and try and keep that from happening again. We are praying that this will work and we can be home fore the full 9 days before we have to be back for her 3rd session of chemo. 

 Thank you so so so much for all your prayers, messages, love, and continued support. 

Round 2:

After almost a full week back home, Hutton is back at UCLA for her 5 days of chemo.  We met with her team this morning before we were admitted to discuss her pathology results. Her diagnosis has changed from Ewings Sarcoma to Immature Teratoma with Sarcoma Overlay.  This new diagnosis will not change this week of chemo but will potentially change her chemo in the future. 

One of the reasons we switched from CHOC to UCLA was that they are constantly testing, researching, and monitoring her.  We have seen this firsthand today and it is reassuring to know there is a team monitoring her so closely. As a parent, you wonder if you are making the right decisions for your child (and in this case for her life) and second-guess decisions. The pieces that fell into place to get us here, and the pieces that keep falling into place reassure us that she is exactly where she needs to be. 

Please pray for Hutton this week as she goes through her 2nd cycle of chemo, for Steph while she holds down the fort at the hospital, and for J’s sanity as he makes the commute to work from Westwood to Seal Beach, and back. 

The hardest thing I have ever had to do…

We cut Hutton’s hair today.  It was without a doubt the most traumatic/worst thing I have ever done in my life.

We have been prepping Hutton that the chemo will make her lose her hair and that since her hair is so long we can cut it and use it to make a wig if she wants. Bottom line is she does not want to lose her hair…but that is not an option with this chemo.

If you see Hutton, you see her hair. Her long, beautiful hair.  We have cut (trimmed) her hair maybe 4 times in her life. She LOVES her long hair.  She loves wearing her hair down.  She is VERY specific about what she likes done to her hair; one braid for gymnastics practice, 2 top knots for gymnastics competitions, 2 French braids when we go camping, down and curled for pictures, and down for school. When she is in the hospital I French braid her hair so that it doesn’t get tangled and it is out of her face.  

I had noticed after her first round of chemo that she was losing a little bit of her hair, nothing too drastic.  After this last stay in the hospital her hair loss was very noticeable.  She took a shower and after the shower asked if I would blow dry her hair.  I said yes, while holding back tears, knowing that this would be the last time I would blow dry her beautiful long hair. 

I have done everything in my power to not let Hutton see me cry.  It took everything in me to not cry as I dried her hair.  As I was brushing it and drying it a lot of hair was coming out.  I knew that cutting her hair was going to come sooner rather than later.  I prepped her that we would braid her hair and then cut right above the braid and she would have short hair like mommy’s. Even with her seeing that she was losing her hair and knowing that if she wanted a wig to be made with her own hair she still did not want to cut her hair. 

To say the experience was traumatic would be an understatement. Last night, I braided her hair and showed her where mimi would cut it.  She was crying, I was crying, Mimi was crying. I am not going to sugar coat it.  It was HORRIBLE.  Hutton and I were holding hands and crying as Mimi was cutting off Hutton’s braid.  As soon as it was cut she immediately said “Get it away! I don’t want to see it!”.  We hugged and sobbed together.  

She is not used to her new short hair.  To say she doesn’t like is an understatement.  She does not want to talk about it, she does not want to see it, saying “I am never looking in a mirror again!”. She will absolutely not allow any pictures of it, although I did sneak one pic. 

To see your child go through something like this is absolutely horrific. To be so utterly helpless is the worst feeling in the world.  

Finally Home…For Now

After a rough, unplanned 4 days in the hospital Hutton is finally back home and feeling much better. This weekend was definitely a scare. But luckily we had all of your prayers to help Hutton, as well as us through this weekend. 

After multiple blood test and cultures, as well as testing for a multitude of possible viruses and bacterias, everything came back negative. Apparently this can be a common occurrence with chemo patients. Though still a dangerous occurrence, many times doctors can never identify the source of what caused the fever. One thing we know for sure though, is due to this fever, we brought her into the hospital and discovered that her hemoglobin levels were dangerously low, and she was able get a blood transfusion and multiple rounds of antibiotics. 

Now we pray we can spend the next few days enjoying being at home before having to return to the hospital next week for Hutton’s second big round of chemo (5 days). Hutton is already over having to stay in the hospital so we ask you continue to pray for her to have strength and resilience as she continues her fight against cancer and that God will grant her peace and understanding during her hospital stays. 

Not How The Week Was Supposed to End

The first couple of days home were a little rough, but Hutton was showing some improvements. She wasn’t complaining about her leg hurting and was drinking more water and eating more. On Thursday, she complained of some back pain, but we figured that was due to her lying in bed more than normal. Otherwise, she was eating, drinking, watching shows, and laughing. 

That all changed Friday morning. She was complaining that her back hurting more, as well as stomach cramps. Later in the afternoon, she complained to Steph that she was cold. When Steph checked on her she noticed she was warm, so she checked her temperature. Hutton had developed a fever. At about 9 pm her temperature had reached 101°. We had to call the on-call Oncologist, grab some bags with essentials, and head back up to UCLA Medical. When we arrived they admitted her to the ER, accessed her port to take blood to test, took a chest X-ray, and began giving her antibiotics and fluids. 

She was admitted around 0223 and she will be given antibiotics for 48 hours as well. Her hemoglobin showed it was dangerously low, which could be a major source of her lethargy. She will also need a blood transfusion to raise those levels and some other treatments to try and get her levels back to normal. Hopefully, the antibiotics will kill whatever has given her the fever and she can go back home. 

Hutton continues to amaze us with her strength and resiliency. She is definitely a fighter and an inspiration to stay strong.

#huttonstrong💛 #prayforhutton💛 #fuckcancer

UPDATE 6:

After 6 long and strenuous days at the hospital, Hutton, Mom, and Dad, have finally been able to return home from the hospital. Hutton has successfully finished her first round of chemotherapy, and we are back home dealing with the side effects. 

Though she had some bad days at the hospital and her first day home has been a struggle, Hutton has taken comfort in continuing to see the outpouring of support and love from her friends. 

#huttonstrong💛 #prayforhutton💛 #fuckcancer

UPDATE 5:

Yesterday was a rough one for us all. Hutton had two procedures (second biopsy and bone samples) and port installation. She was very brave in the morning, she was asking questions about her port and the procedures she would be going through, and the nurses and doctors were amazing with her. I could tell she was curious about it all and wanted to understand it more so that it wouldn’t be so scary for her. 

When the nurses came in to transport her for her first procedure and anesthesia, everything became real, and she was very scared. We were able to stay with her until she was put under. It is heartbreaking seeing your child crying and telling you she doesn’t want to do something, knowing it is one of the most important things she needs to do, and not being able to tell her the full truth as to why. 

Only one of us could be next to her while she fell asleep, which was Steph. As Hutton was crying and looking her in the eyes begging “No, no, no!”, Steph showed amazing strength and courage keeping it together and being an example of courage and strength for Hutton. 

The procedures (second biopsy and bone samples) and port installation took a little over 3 hours. We were able to be waiting next to her when she came out of it, and that was pretty rough as well. Once she was completely coherent, though it took a while for her to get used to the port being in her. Hutton again showed a lot of strength, resiliency and courage dealing with the pain and uncomfortableness of having a foreign object inside her. She is amazing.

You only have what you know and see to compare things too, so as she was freaking out about the port, I couldn’t help but think if we failed in preparing her for it and if there was anything else we could have done to make it an easier thing to accept. But talking to her nurse outside her room, she told me Hutton was doing amazing and being really brave, and dealing with it better then other kids she has seen, and reassured me that the pain and uncomfortableness she was experiencing was normal. She also told me that she thought Hutton was such an amazing and sweet young girl, another example of her light shining bright no matter what the circumstance. It is this light and strength that I guess sometimes makes me forget the she is only 9 years-old. 

A nice surprise that I think really got her mind off of the port and everything sher had gone through that day was a surprise visit from a friend. It may have only been for a few minutes, but they were probably the best minutes out the entire day for her. #huttonstrong  #prayforhutton #fuckcancer 

UPDATE 4:

Last night we checked into “Hotel UCLA” as we are calling it to begin Hutton’s chemo treatments. 

Tomorrow morning she will be having another biopsy as well as getting her port placed. Once the port is placed she can begin her chemo treatments.  We will be in the hospital at least through the weekend.

Hutton has had some rough moments so far, but she has been meeting her team of doctors today, asking them very good questions, and is very excited to spend some time with the therapy dogs.

Thank y’all for your continued support as Hutton begins her journey and fight this week. Please keep her in your prayers and continue sending her Good Vibes.

UPDATE #3:

First and foremost we want to thank you all. The outpouring of love and support we have received for our miracle baby. It is amazing and humbling. It reminds us of how much of a testament she is to God’s love and light.

The common theme we continue to hear from the lives she has touched is that she is a shining example of God’s love and kindness and that she lights up any room she walks into. At only 9 years old, we have to believe that the fight she is in is just part of her story and testament and that this journey and struggle will only increase the love and kindness she has to show the world and we have to have faith that God has a bigger plan for her.

With that being said after 3 weeks we have an initial diagnosis and Hutton has what is called Undifferentiated Sarcoma. Though CHOC has been amazing, due to this diagnosis, we will be consulting with a sarcoma specialist to get a second opinion on Hutton’s treatment options. Though we do not want to delay the start of her treatment, we believe that having a specialist give their diagnosis and prognosis is important to ensure that Hutton doesn’t just start to receive the treatment she needs but that she receives the correct treatment she needs and not just the “standard operating procedure”. Will will hopefully know the what, where, and when of her treatment then. We will hopefully know more after Monday.

Again, we appreciate all the support we have received from the financial, to help with the upcoming medical costs, the gift cards and meals, which takes one more daily decision off our plate, and the Amazon purchases which will give Hutton a much-needed distraction both in and out of the hospital…but most importantly thank you from the bottom of our hearts for the love and prayers you all have shown Hutton.

Please continue to support her in any way you feel called to do so. More than ever before in my life I have been saying, there is no such thing as too many prayers, and I honestly believe that. We know Hutton has a very long road ahead of her and most likely things may get worse before they get better, so one thing we will continuously ask for over anything else is your prayers for Hutton; for her to be given extra strength, encouragement, love, and tenacity to fight this disease and for her to be given the peace, understanding, and strength to stay positive through the difficult times ahead.

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#huttonstrong

#prayforhutton

##fuckcancer

UPDATE # 2:

We met with Hutton’s oncology team today to go over what we know so far and the PET Scan she had done yesterday. We still do not know what type of cancer she has (“normal” cancers have been ruled out and her biopsy samples are now at a 3rd pathology lab for testing), but she believes it is a type of sarcoma growing from her pelvic bone. The PET scan also showed that it has metastasized and is in her lungs as well. Hutton’s doctor is hoping for the final pathology to come in this week so that we will know the specific type of cancer we are fighting. As of now, Hutton will be admitted to CHOC next Thursday to begin her chemo and radiation treatments.

We don’t know how this will look as we don’t know how her body will react to the chemo and radiation but the plan now is a few days in the hospital and a few days home. She will have to be home-schooled during this time (which she is excited about ). We appreciate all your love and support and ask that you continue to keep Hutton in your prayers. This is going to be a very rough and long journey, and though statistically the long-term outcome at this time does not appear to be good, we know she is strong and we have faith she will defy those statistics.

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#huttonstrong

#prayforhutton

#fuckcancer