Kameron Treatment Update

We were disappointed to learn, after many weeks of effort, that the University of Texas MD Anderson will NOT be seeing Kameron for a second opinion for his osteosarcoma. Long story short, after lots of calls back and forth to the insurance company, (MD Anderson) Houston, and our doctors offices-- we found out our insurance will not approve us for in-network benefits. Their reasoning was that Kameron can be seen at a more local (in-network) cancer center-- Huntsman Cancer Center in Salt Lake City, Utah. To say I am frustrated about this development, is putting it mildly. After hours of our own research, MD Anderson is nationally ranked #1 in treatment for osteosarcoma with the best rates of a cure. This has been a tough blow for us to accept. 

We are now pursuing a second opinion in Utah. We are tired. And we are having to start over in the referral process with a new hospital. Please be in prayer that this can be facilitated quickly.

As far as we understand right now, Kameron will undergo additional rounds of chemotherapy each week for the next 2-3 weeks. He'll be hospitalized for 3-4 days at a time (each week) as the oncology team administers a 3rd kind of chemotherapy medication. Kameron graduates from high school later this month. We are excited for him and his accomplishments, and also nervous as COVID restrictions relax around us, because selfishly those protect Kameron from potential exposure to possible infections (ie: colds, etc).  He'll be at the height of his treatment and most at risk when he walks for graduation.  

Kameron's hair is falling out. His white blood cells that help fight infections are at a critical low, due to the chemotherapy. That means he can catch infections much more easily than usual. And any slight fever will send him to the ER. However, his spirits remain good and his resolve to kick cancer's butt remains unwavering. He has the same sharp wit and good humor. 

Thank you to those who've mailed us notes of encouragement, ding-dong ditched donuts at the door, taken the younger boys to play with friends or assisted with childcare, sent money for Kam snacks, brought him Chinese food, etc. It has meant a lot to us. It has taken a village. <3<3<3

Kameron's First Week of Treatment

After 3 days in the hospital, Kameron is home! As you can probably imagine, after undergoing his first round of chemotherapy, he has been quite tired and feeling under the weather. It has been a whirlwind couple weeks since receiving his osteosarcoma diagnosis. We are sorting out our new normal and what Kameron's treatment/appointments/expectations will look like over the next months.

This week (Tuesday) we met again with the local oncology orthopedist. At the 10 week mark, Kameron will need to undergo surgery to remove the tumor in his right femur. The doctor explained what his surgical plan would be for removal. It would require an oncological resection of the tumor with wide margins, utilizing cadaver bone, and instrumentation that would look like a fancier (more entailed) knee replacement. However, surgery is more risky for Kameron because of his chemotherapy, which makes him immunocompromised (ie: susceptible to infections). Infection is a big concern. As well as blood clots.

We also checked in this week with his oncologist (cancer doctor). Kameron has always had intermittent bloody noses, but the chemotherapy has made that worse for him. They helped us navigate plans to manage those at home and prevent them. They have been wonderful about navigating social programs and secondary insurances that will help cover Kameron's extensive medical needs. Their program made this complex process easier to understand and navigate in a clear, step-by-step process. It was so wonderful to see a system work so well for its patients! 

We are doing what we can to support Kameron as he fights osteosarcoma. He has had to go on a low-microbial diet. Which means, no sushi. That was a bummer. Basically, it's super important we keep hot foods hot and cold foods cold, and wash the heck out of anything fresh he eats. We also got him a gamer's laptop that he'll be able to take with him to his treatments (which we learned will require an inpatient hospitalization every time he has a chemotherapy treatment). The treatments really affect his appetite, so we have been diligent to make him or get him whatever he is feeling up to eating. Somedays, it's mint chocolate chip ice cream for dinner! He has been loved on by friends and had snacks, blankets, Chinese food, and activities brought to him to fight boredom. He was able to video chat with dad during his hospitalization and go "virtual shopping" for snacks at the Asian Market, which he seemed to enjoy.

We would appreciate continued prayers as we continue to navigate getting a prior authorization/approval from our insurance company to go to University of Texas MD Anderson in Houston, Texas. Our doctor wrote a letter for us on Tuesday asking them to expedite our request to be seen out-of-network, as their sarcoma program has better than the national average odds for Kameron's specific kind of cancer. We are wanting the best/most promising treatments possible for him. We are currently in a waiting pattern for approval, and this can take 72 hours. We are hoping for answers on this soon. 

Kameron has another off week of chemotherapy treatments, this coming week. He will see his oncologist again next week and he'll have more lab work to closely watch how his body is handling treatments. His type of chemotherapy requires three different medications. These can cause damage to his heart, kidneys, hearing and peripheral nerves-- which is why they watch him so closely in the hospital. 

Because Kameron is so susceptible to infections with his treatments, we are limiting our outings and exposure to others. We ask if you are sick, you respectfully keep your distance, to keep Kam safe.

Thank you to those of you who have reached out. For those continuing to hold up our family in prayer. We know Kameron isn't battling this alone. And many of you have come alongside our family and supported each of us, loved on each one of us, and helped carry and encourage us when the load gets heavy.  Thank you doesn't seem like enough, but right now, it's what we have. 

Kameron Update: A New Challenge

For those of you who have been following our journey, and for those who are newly joining us, we recently announced a devastating medical diagnosis we received for Kameron. As you can tell, it has been quite some time since we last posted here on our adoption blog. Kameron has been doing great. He is an incredible son. So funny. He literally has all of us constantly cracking up. He has handled the COVID-19 pandemic, all the challenges that have come with it, and anything high school could throw at him like a champion! He is getting good grades and has dreams to join the Air Force some day and fly the drones.

About 3 months ago, Kameron started complaining of some minor right knee pain. He didn't injure it or anything, it just showed up. For those of you who don't know our family, I (his mother) am a Physician Assistant. When I examined his knee, other than some minor swelling things seemed fine. I tried a neoprene sleeve and Ibuprofen. These helped, but his pain did not go away. After 6 weeks of persistent pain, I called our sports medicine doctor, and made him an appointment during Spring Break. 

We met with the doctor and he did a detailed knee exam and took an x-ray. The doctor agreed, his exam was normal. He looked really close at the x-ray where Kam said he was hurting and noticed a slight irregularity to the bone. The radiologist favored it to be benign (IE: no big deal) but advised we get an MRI, out of an abundance of precaution. Two days later Kam had his MRI. We learned quickly after, that the MRI was concerning for a primary bone tumor. What we didn't know was which kind. After a whirlwind couple of weeks he had a bone scan, bone biopsy, and a CT scan of his chest, abdomen and pelvis. It took a week and a half for Kameron's pathology results to come back from the Mayo Clinic:

Osteoblastic Osteosarcoma- High Grade. 

For more information: (https://www.hopkinsmedicine.org/health/conditions-and-diseases/sarcoma/osteosarcoma)

To say we were devastated by this news, is a given. Thankfully, as far as we understand, Kameron is considered in the earliest stages-- Stage II. No cancer has spread to a detectable level. 

This past Monday we met with his oncology team. He has the kindest of doctors and support team. We had met his lead oncologist, Dr. Hansen, almost 11 years ago to the date, as he was the on-call pediatrician when our son Toby was born. I remember him joking as we took our newest son home, "Well, I hope I never see you again." We laughed. And we hoped so too. Fast forward, and as we meet him again, he says, "I am so sorry you have to meet me again." 

We learned that Kameron would be admitted to the hospital the next day (Tuesday). He will need to undergo extensive baseline testing, chemotherapy, and a surgery. The plan is he will undergo 10 weeks of chemotherapy, surgery, then additional chemotherapy. Yesterday, he had a port-a-cath placed which will help deliver him medicine to help fight this cancer. Today, Wednesday, they have fully hydrated him and are beginning his first round of chemotherapy.

Our family has decided to pursue a second opinion. Not because our team out here isn't great. They are wonderful! We know the general national odds of successful treatment for Kameron's type of cancer are about 66% or so. University of Texas MD Anderson in Houston is known for being the national leader (#1) in cancer treatment and research. Their sarcoma program is 80% successful. At some point, once we can get all the insurance hoops aligned, we will travel out there for further evaluation. 

While many patient's facing such a hard diagnosis feel isolated, we have been blessed, supported, and loved on by so many in our community. Y'all have been inventive and wonderful despite COVID precautions making things extra difficult these days. Bless you. We have felt your love. For those asking what they can do to help, we genuinely don't know yet. But we have put you on our list of people to reach out to when needs arise. It takes a village, and we love our tribe deeply. You showed up and continue to show up! Please continue to pray for Kameron and our family. We firmly believe that prayer is what moves the hand of God. We have one heck of a tenacious fighter in Kameron. 

How to Make Hot Pot

I've been asked by multiple fellow China adoptive momma's on how we make Kameron's favorite meal, hot pot. Let me assure you, it is surprisingly easy! It just requires a lot of gathering/locating ingredients. I think of it as "Asian fondue" except there is no dairy-- but you can mix and match and create your own. It is definitely spicy, but incredibly yummy as well. So without further ado....

How to Make Hot Pot

The biggest amount work is locating an Asian market with all of the key ingredients. Some things you can get from your local grocery store, but finding a good/authentic hot pot sauce is difficult unless you order it online (expensive!!) or can find it at a local Asian Market.

Hot pot sauce packet

The hot pot sauce gives step by step instructions (usually requiring minced garlic and water to add to the oil and spices enclosed). We used our electric fondue pot to make our hot pot, but a large electric skillet or pot on the stove will work as well. Stir that up!

Once that sauce is boiling, you get to add whatever you want!! We tend to add the following, as this is what our son enjoys:

-- Carrots, thinly sliced.
-- Cabbage, large hand sized pieces
-- Asian mushrooms *Asian Market find. (Side note: grocery store mushrooms work too, but "aren't as good," according to our son)
-- Thinly sliced and then chopped up beef.
-- Pork meatballs *Asian Market find.
-- Tofu (cubbed)
-- Fish balls or shrimp balls. *Asian Market find.
-- Shrimp
-- Noodles (Our son prefers rice noodles). You can also add Chinese donuts, if desired. (Our son did NOT desire). *Asian Market Find.

Asian mushrooms



Frozen shrimp (or fish) balls

Rice noodles

Pork meatballs

Shrimp, a cheap Walmart find

Cubbed tofu

Chopped thinly sliced beef
  

 Once you have all the ingredients ready, you add them in. I usually add the carrots and other ingredients that take the longest to cook (IE: beef, noodles, raw veggies), and save the shortest to cook to add last (IE: tofu, shrimp, etc) so they aren't as soggy.

Hot pot starting to boil

And now it is ready to eat.. and Mmmm.. it smells so GOOD!

Lastly, serve in a bowl and preferably with chopsticks! Enjoy!

Hot pot, ready to eat!

Thriving

School is officially out for EVERY Maddux boy for the 2015-2016 school year! Kameron has completed his last day of summer school and 7th grade, and he absolutely rocked it! Turns out summer school is much more laid back, more individualized for each student's unique needs, and the best part is that the kiddos earn prizes and candy! Kameron came home with a 30 dollar gift card today. He was so proud! And we are sure proud of all of his hard work!

Kameron's English is coming along very rapidly. Last month, he not only could pick out words in songs in English that he recognized, but actually points out words he doesn't recognize and asks what they mean. We were told that for most older international adopted kiddos that recognizing words in songs in English that they recognize, takes about a year. He has been home 7 months now. He really is one smart boy!

One of the very first things we learned about Kameron, was that he loved babies. He loved to play with them, to hold them, and was always very gentle with them. He has been a good big brother, but particularly so to our littlest Noah. This week he helped mom and dad out when Noah wouldn't eat his dinner by turning it into a game "Noah, you are a monster. Now open up and eat the train.. here it comes!"

Kameron feeding "the monster."

Carrying a sleepy baby into the store

Kameron and Jesse Jay both got straight A's (or the elementary school equivalent for that) this last semester. Toby got very good grades and perfect attendance. Both Jesse Jay and Toby are starting to read rather fluently. And Noah is loving having all these people who can read him his books! Kameron has started reading some books to Noah (in English) as well.

Toby with his kindergarten attendance award and certificate

Kameron's eye surgery for his strabismus has been moved up to July 7th. We ask that you please pray for him to not be anxious. He has experienced a fair bit of medical trauma in his life. I have been very impressed with his resolve to get his eye fixed. He has been very great about going to the hospital and is thrilled that they are going to let mom be with him the entire time he is awake (his only request). Of course, the after surgery McDonald's and Dutch Brothers he has been promised doesn't hurt either... :)

The older 3 boys are taking swimming lessons together this past week and a half. Watching them grow and learn together has been so rewarding! All 3 of them are starting to swim without assistance (IE: no swim belts!!). Kameron was very hesitant about having anything to do with pools or swimming for a long time. And now, he jumps in confidently with his brothers and swims for hours! Those boys would swim all day if we let them. And it is such a good way to get their energy out (and man, do they sleep hard!) Seeing the boys faces as they conquer their fears and learn new skills they couldn't do before... takes my breath away!!

Kameron, Jesse Jay, and Toby getting ready to jump in the pool for swim lessons

Many people continue to support and encourage us on our journey. Thank you seems hardly sufficient, but thank you so much for your continued love that you shower our family with! You continue to check in on us and ask how we are all doing. And I couldn't have more joy when I tell you we are all doing very well! A few months back, we had posted that our prayer was "that we wouldn't just survive this, but thrive." And oh, we are thriving! God has been so good and so faithful to our family!

All of the boys relationships continue to grow and blossom. And it has been absolutely beautiful to see. We have mostly good days, and some hard days-- but we are getting through them together as a family!

Boys and their bikes

Playing with friends on the trampoline

Three months ago, things got so difficult, we weren't really sure how we were going to survive it. Things were rough in every way imaginable. If you had told us that we would be doing this well this soon, I'd have said you were nuts! We couldn't imagine our family any other way now.

I love the little things too. This one (see below) in particular. One of Kameron's favorite song's right now is called, "Banana phone." Don't YouTube it. It's one of those repetitive songs that typically drives parent's up the wall. The first picture text I sent Kameron was this one of his brothers. It is so fun having "inside" jokes together.

Banana phones

Happy 6 months with our Kameron!

It has been quite awhile since I last updated on our journey. And I feel it is high time to update ya'll on our happenings. Lots and lots has happened. Our lives are certainly never, ever boring.

I can hardly believe that Kameron has been a Maddux for over 6 months now! In that time he has grown 5 inches, 3 shoe sizes, 2 clothes sizes and 15 lbs. And the personal growth he has had and the healing that has taken place already, has been absolutely astounding!

Kameron has been going to school for 3 months now and he has been flourishing there. He does quite well at school. His teachers all really like him. He is well liked by his peers. And he shares gum, food, and candy like nobody's business. This boy has got middle school all figured out! His language development has been impressive and rapid. Rare are the days where interpretation is needed. In fact, Kameron recently ROCKED his pediatric ophthalmology appointment a couple weeks ago and did NOT need an interpreter whatsoever!!

We received news from the pediatric ophthalmologist that Kameron most certainly has an ocular muscle palsy that he has likely had since birth. And the only option for it is surgery. We have scheduled the surgery for early August. He may need another surgery after that, depending on his recovery and any complications. But we were happy to hear that it is 99.9% that surgery will make his eye near perfect, and most certainly better!

Kameron at his eye doctor appointment. Determined to play the iPad despite his eyes being dilated. He had the entire waiting room laughing.

Kameron has been outstanding about it. I was worried he would be terrified of being in a hospital and with having surgery. He says he is good, just as long as mom can be with him the entire time he is awake. :) I am grateful for a great doctor and pediatric anesthesiology team in Boise who has agreed to let mom go back with him until he is asleep and to be there before they wake him up.

Kameron has had a lot more milestones and firsts I wanted to share (and remember when we look back on all of this one day).

Kameron's first award at school!! So proud of his hard work.

Kameron's first art project that he surprised mom with!

Kameron's 1st family portrait. Don't mind the 2 grumpy faces... :)

Kameron's 1st Big Mac, now his favorite hamburger.

Kameron's first Cake Pop. He says they are GOOD!

We also celebrated Toby turning 6 years old. Did you know that the day you turn 6 years old, you wake up much taller, bigger, and faster?? I had no idea.. but it's the truth! Or so I'm told by our very proud six year old.

Toby loved his poke-ball minion cake and lynchee drinks for his birthday

And then there has been a ton of cuteness and pure adorableness going on around these parts. I am so proud of all of our boys. It has been a tough adjustment the past 6 months. But things are starting to settle out. Jesse Jay is learning how to be a little brother and how to share better. Toby's tenacity and ability to persevere in hard times is absolutely amazing. And Noah.. goodness. He can't help but be absolutely 1000% adorable 24/7.

The 3 littlest Maddux's walking to school

Feeding baby goats

Noah showing off his "Chopsticks Face"

We would appreciate your continued prayers for our family. I (Sarah) have been dealing with thyroid issues the past few months, and it has been a challenge to say the least. Some of our adoption adjustments were complicated by my own recent and sudden health issues-- many stemming from my thyroid going "out of whack." Basically, I have learned that I have an autoimmune condition where antibodies attack my thyroid and cause nodules, and when I am under great stressors this is likely to happen off an on, until my thyroid officially fizzles out (sometime years from now). I am taking steps to get healthier and will soon be starting an anti-inflammatory diet that I have great hope in will soon have me feeling better.

The Maddux Family

The Teacup Story

Throughout this entire process of adoption and working through attachment, this story has been near and dear to my heart. There have been moments that are downright uncomfortable, agonizing, and painful. We have begged and pleaded for an end to our misery.

But God was clear. Not yet.

We have had to remind ourselves that God IS working in our lives. When we have been in the kiln, and the fumes were suffocating and all hope seemed loss, he has been faithful and so near to us.

Over the past few weeks, we are starting to see glimpses of the work he is doing in all of us—and gosh, it is so beautiful! It brings tears to my eyes. Things are slowly and steadily improving. We are smiling more. Trust is being built. Progress is being made. We are overcoming difficulties and hardships, together. There is joy in the journey again. We are becoming the kind of family that God has envisioned for us.

I love this story. And I thought it was so good, I should pass it on. Enjoy.

The Teacup Story

http://www.justbetweenus.org/pages/page.asp?page_id=96825

“Behold, like the clay in the potter’s hand, so are you in my hand.” ~ Jeremiah 18:6

There was a couple who used to go to England to shop in the beautiful stores. They both liked antiques and pottery and especially teacups. This was their twenty-fifth wedding anniversary. One day in this beautiful shop they saw a beautiful teacup. They said, "May we see that? We've never seen one quite so beautiful."

As the lady handed it to them, suddenly the teacup spoke. "You don't understand," it said. "I haven't always been a teacup. There was a time when I was red and I was clay. My master took me and rolled me and patted me over and over and I yelled out, 'Let me alone', but he only smiled, 'Not yet.'"

"Then I was placed on a spinning wheel," the teacup said, "and suddenly I was spun around and around and around. 'Stop it! I'm getting dizzy!' I screamed. But the master only nodded and said, 'Not yet.'"

"Then he put me in the oven. I never felt such heat. I wondered why he wanted to burn me, and I yelled and knocked at the door. I could see him through the opening and I could read his lips as he shook his head, 'Not yet.'"

"Finally the door opened, he put me on the shelf, and I began to cool. 'There, that's better', I said. And he brushed and painted me all over. The fumes were horrible. I thought I would gag. 'Stop it, stop it!' I cried. He only nodded, 'Not yet.'"

"Then suddenly he put me back into the oven, not like the first one. This was twice as hot and I knew I would suffocate. I begged. I pleaded. I screamed. I cried. All the time I could see him through the opening nodding his head saying, 'Not yet.'"

Then I knew there wasn't any hope. I would never make it. I was ready to give up. But the door opened and he took me out and placed me on the shelf. One hour later he handed me a mirror and I couldn't believe it was me. 'It's beautiful. I'm beautiful.'"

"'I want you to remember, then,' he said, 'I know it hurts to be rolled and patted, but if I had left you alone, you would have dried up. I know it made you dizzy to spin around on the wheel, but if I had stopped, you would have crumbled. I knew it hurt and was hot and disagreeable in the oven, but if I hadn't put you there, you would have cracked. I know the fumes were bad when I brushed and painted you all over, but if I hadn't done that, you never would have hardened; you would not have had any color in your life. And if I hadn't put you back in that second oven, you wouldn't survive for very long because the hardness would not have held. Now you are a finished product. You are what I had in mind when I first began with you.'"