A number of you have offered to connect to resources or people you know who may have ideas for treatment so let me share the very little we know about the cancer. He has been diagnosed with Atypical Teratoid Rhaboid Tumor (ATRT). It is very rare and occurs most often in children younger than 3. Given that is so rare, there is not a standard treatment for it but rather the best luck is often found in clinical trials. But truth be told, the success rate is nothing to discuss. In addition, the fact that it is so aggressive and Kai’s has already spread throughout his brain and his spinal cord means that any treatment would have to be widespread and just as aggressive and this would be to maybe extend his life by some months. We are seeking out what experimental or clinical trials may be out there because we need to make an informed decision but I wanted to let you know what we are having to consider.
It is wonderful having Kai home, but he is still very sick. He rested the best he has in a while but he still can not sleep very long and this morning he’s struggling quite a bit. And as silly as it sounds, I hate medicine time – he’s not really eating/drinking much today so it’s hard to get it down and we have to restrain him and force it and to be honest I’m a little nervous if we’ve even been able to get the right dosage in him. I can’t imagine what this is going to be like for him to suffer more. We don’t know what to do. We’d give both our lives for him not to suffer. I ask for your prayers for peace for him and joy and for strength and wisdom to make the right.
And as you’re praying I’d like for you think of the life this little boy has. Yesterday when we told him we could go home, we said we can go home with Daddy and Mommy. And then Kai said “and Maya too” … Kai loves his little sister. He is such a kind and caring big brother and Maya lights up when she sees him. Maya’s little squeaks were one of the only things that can sometimes get him to open an eye or two. So I’d like to share some pictures of these joyful two little nuggets. Kai this morning told me that Maya wanted her owl to play with and that she needs her water cup – he’s always looking out for someone. 
Thank you again so much for your help, prayers, connections and countless other things – we are so blown away and humbled by your generosity and overwhelming kindness.
15 Comments on Diagnosis part two
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Always looking out for someone indeed…and now so so many people are looking out for you, Kai. But One in particular is with you always. May He help you to find comfort and continued strength thru these tough times. Love you Tai Tai.
Continued love and prayers for you all.
Beautiful pictures of your precious babies!! Their joy is priceless! Thank you for being so honest with us all and for sharing the burden of your decision. My prayer is that God will give you peace concerning whatever course you choose.
thanks for all these updates. we are going to do everything we can to look out for Kai man like he does for Maya. We will let you know any info we can get, and don’t you know we will be trying our hardest. all our love.
We all continue to pray for your strength and wisdom, and Kai’s health. May He give you the wisdom to make the decisions you need to make and the peace in knowing they are right. “May God grant me the serentiy to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference” This is what I pray for you as you walk this difficult path. Hang in there, we are all sending lots of prayers your way!
What precious pictures! May God continue to hold you tight Kai during this time.
Continue our thoughts and prayers for you…
Beautiful children. Praying for wisdom and still praying and believing for Kai to be healed.
We are praying for strength and grace and deep peace for you Shawn and Aki, Kai and Maya as you work through this process as a family and know that all of you and your family’s are held in love and prayers .
Praying for your sweet family from Littleton, CO
Our nephew was dx with a rare and aggressive form of cancer 2+ years ago, we know the heartache, but also experienced the compassion and genuine kindness others bestowed on my family. God is bigger than all of this.
Much love and many prayers being said for Kai and your entire family
Hi,
My name is Lisa and I’m am a colleague of Autumn Matus who told me about Kai’s story. My 9 year old daughter is a cancer survivor, so I can relate to some of what you are going through. While my daugther’s situation was very different, I would like to offer what resources, information, and advice I know of that may be relevant to Kai’s situation.
For starters, here are some things to consider:
– Dell Children’s has an increadible heathcare team with services available to support all aspects of Kai’s care. Our daughter received 100% of her treatment at Dell Children’s so we are very familiar with the facilities and the healthcare staff. Take advantage of it. Don’t be afraid to ask for help. If you are concerned with your ability to give Kai the right dosage of medication, let your doctor know. Ask if there are alternatives. They don’t always offer alternatives up readily, so you may be supprised by what you find out when you ask. They also have access to resources or can give you guidance on where you may find credible information to learn more about Kai’s cancer and related support groups.
– Don’t be afraid to ask for help from friends and family. They WANT to help, but they don’t always know how. I was terrible at this at first but I learned quickly that I had to get over the fear of asking for help.
– Don’t be afraid to ask for a second opinion. We were there at one point in our daughter’s treatment. We hit a crossroad and needed assurance that there weren’t alternatives that needed consideration. Our doctor at Dell Children’s was very open to helping us find an expert in her cancer that could offer his assesment of her situation.
– Check with your insurance company to see if they offer any special programs that may provide you increased support during this time. We were fortunate engough to have insurance that offered a program free of charge to help us manage all the insurance claims and maximize our insurance coverage. It can’t hurt to ask.
– Pray often. And ask others to pray. You are right that faith is so important. Prayer will keep it front and center no matter what. And know that more people than you will every realize are praying for you. I will be one of them.
Autumn has my contact information if their is anything I can offer to you. I will check my resources for relevancy and post what I think may be helpful.
Lisa Pacheco
Hi
I’m Cheryl Sauls. My daughter Ashley and Richard have been friends since 6th grade. (band). Ashley works at the hospital where your son is being treated. The doctors there are among the best. My heart and prayers go out to you, your family and especially your little boy.
I have been so impressed with your openness and willingness to share about your journey up to this point. I have lots of thoughts, but few words at this point! My family and I and many here in Utah will continue to pray for Kai and you and Shawn. I can only imagine the difficulty of the decisions that you have to make! Whatever you decide, I hope you find joy in your sweet boy! Enjoy every moment, take lots of pictures, make memories, and continue to strive to have that faith, even if it is just a tiny bit! God has a plan for you and your family! Trust in him and know that our ways are not always his ways! Our Savior, Jesus Christ, knows all your pains and sorrows (Isaiah 53:4). He suffered them also and understands you and wants to provide you and your family peace during this difficult time! Allow him to! Allow him to strengthen you and your family (Philippians 4:13)! You can do this!
Aki you are strong woman and thank you for sharing ur journey with little boy . You Have my prayer and love for you and your family.
On our knees praying for healing, strength, peace, and wisdom