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

Never In A Million Years

Never in a million years did we think we would be dealing with something like this, more so involving our little miracle baby. She has always been healthy and strong and we pray that will continue as she battles this cancer.

We are humbled, amazed, and blessed at the outpouring of support she has received. The common theme we have always heard from friends, teachers, and aids is that Hutton has such a warm heart, is friendly, kind, and selfless, and lights up any room she enters. God has put her not just in our lives to change and influence who we are and have become, but also placed her in the lives of others. I have to believe God again uses her as she goes through this journey…I just wish He chose a different method to do so.

Please continue to send good vibes and as many prayers as possible her way.

We want to reach out to every one of you individually to thank you from the bottom of our hearts…but that may take some time as we are helping Hutton battle this disease, and also as we try to find the right words to do so.
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#huttonstrong
#prayforhutton
#fuckcancer