Week 28

Hello from the Robinson family!  So much has happened since my last post, this will likely be lengthy…..so get a cup of coffee and kick back, this is going to take a while.

First I’ll update you on Davis’ treatment as I’m sure you are eager to hear how he is doing.

Davis just completed week 28 of 43 weeks of treatment.  He has made it through so much, and yet has so much farther to go.  We have been in and out of the hospital due to fevers.  His feet hurt daily due to the neuropathy, and his gait is unsteady.   We believe that the compounding effect of having to endure so much in his little body, he is becoming more negatively effected by treatment.  Thankfully he still recovers eventually, and we are able to experience some good times in the midst of his rigorous treatment schedule.

About 5 weeks ago, I was in the clinic speaking to his oncologist.  I was talking about my dreams of week 43, when treatment would be behind us, removing his port, traveling whenever we possibly could, running through crowds of people, touching public elevator buttons without disinfecting afterwards, you know the life we knew before.  When I was sharing my hopes, my oncologist’s face shifted and my stomach turned with it.  I know that hesitance, that shift in affect says bad news is coming.  She then informed me that she had been advocating with her team of oncologists that Davis undergo a 6 month maintenance chemo protocol following this 43 week treatment plan. 

I wept.

Since this initial blow, we have learned the studies done in Europe for Intermediate – High Risk Rhabdomayosarcoma patients have shown a higher chance of survival and lower chance of re-occurrence with this extended treatment.  In fact, the overall survival rate with only the 43 week treatment plan is 77% but by adding the maintenance protocol it increases overall survival rate to 87%.  This is good news!

My stomach turns to even type statistics.  There is a deep pit in my stomach that carries the weight of holding my child’s likelihood of survival around in every day moments.  Regardless of statistics, it will either work or it won’t for Davis.  So we just hold hope that it’s working.  Nothing is telling us otherwise.

So as you can imagine this change in his length of treatment comes with good and bad.  Even if it raised his chances by 1% we will do whatever we can to get Davis through this.  I’m heartbroken that he will have to keep his port in, and have to continue pumping poison throughout his body, and it will keep him immunity compromised.  But, he will be able to go back to school, he will get his hair back, and there are far less symptoms during this maintenance period.   See, good and bad!

Davis is such a warrior.  As he endures more and more of this intense chemo protocol, his body is getting tired.  Symptoms are more frequent, trips to the hospital are regular, and his energy level is depleting.    For every 6 weeks, we have 2 weeks of Davis feeling good and energetic.  So we take advantage and try to enjoy those two weeks as much as possible before the next treatment brings him down again.

Lily finished her second grade year at Scottsdale Christian Academy.  Considering the year we have all had, this is no small thing.  There were times where I wasn’t sure we would be able to do it all.  In the midst of everything with Davis, Lily still had school, homework, art club, show choir rehearsals, performances, and that’s not even including just a desire to have play dates and be with friends.  Her summer will look different than any other summer we have experienced.  We will be here, enduring the heat all summer, and spending much of our time at the hospital.  Lily is often torn when she has plans with friends because often it doesn’t include her family.  She rarely went to play dates, or outings without our whole family going too.  We suffer from serious cases of FOMO (fear of missing out) often times.  Now, if she wants to go to a movie with friends, swim, or do anything she is often alone with other families.  This can be isolating. 

There is a joke in our house that May is the month of Amanda.  May is the month that holds our anniversary, Mother’s Day, and my birthday, see….Month of Amanda!  I have always loved a good reason for a party and this month was no exception.  Lance and I were able to get away to a hotel here in town for a night, I spent a night at a hotel with some dear friends, we celebrated mother’s day, and my girlfriends took me to a Brad Paisley concert on my birthday.  Good times were had!  And yet, throughout this whole month I have been processing the reality that we as a family will be walking through 6 additional months of treatment. 

6 Months more.  How is it possible we are here?  How is it that Davis’ diagnosis is so significant that he is required to endure such an intense protocol?  And yet, I’m so thankful we have the ability to do something about Cancer.  It’s not a guaranteed cure but it’s something.  I was going through some old paperwork from when Davis was first diagnosed and ran across his treatment plan.   I remember when our oncologist came in to have me sign away our life to his treatment, and on the front page you have to pick what the goal is, and she checked off CURE.  I wept (noticing a theme?).  Cure.  We are committed to this outcome and will do whatever necessary to get Davis there.  Even in this commitment to a cure, it feels vulnerable to ask the Lord for healing.  It’s not guaranteed.  At all.  What if He doesn’t heal Davis?  What if it comes back and we have a nightmare ahead of us of even more treatment.  What if he’s healed from cancer but has terrible side effects from radiation?  What if….What if….What if. 

I’ve been listening to The Bible Project’s series on The Holy Spirit.  If you have not listened to this podcast series, it is a must!   I highly recommend it.  They discuss God’s Ruakh (Hebrew word for Holy Spirit) being the invisible presence of God here on earth.   A very shortened and unsatisfying summary is that Ruakh (Spirit) means wind, breath, God’s spirit, and man’s spirit.  They discuss how the Holy Spirit did three main activities in the Old Testament; empowering people for specific tasks, creating and sustaining life, and re-creating the world and humanity itself.  It is God’s Holy Ruakh that I have experienced deep comfort and empowerment in this unwanted calling. I am a testament to the Holy Spirit having called our family to a divine calling/task, that we ourselves would never ask for or want.  The Spirit is my only source of sustaining during times I didn’t think my next breath would come. My breath has been an ongoing theme that the Lord has reminded me of His presence, love, and intimacy in the midst of my pain and suffering. He is also transforming me into a new creation.  I am no longer who I once was.  I am being re-created with each new task, hurdle, calling, sacrifice, and suffering.  The Spirit is transforming my heart to believe how much more I could endure than I ever thought possible.  I can see that truly in Him and His power I can continue to put one foot in front of the other.  I have more kindness for my emotions.  I am a stronger advocate for the people I love.  I have deepened my loyalty and protection of those whom I live life with.  I have dreams for my family that are bigger than I ever held before.  I have dreams for myself that I never allowed before.  These transformations are the re-creation of my spirit aligning more and more with the power and purposes of the Holy One.  My heart so desperately longs to be more like Jesus.  I strive to be capable of walking through life with His eyes, empathy, mourning, capacity, wisdom, and courage.  I so desperately long for those of you who haven’t had the privilege of knowing Him, to see the richness our life holds when living in relationship with our Creator King.

In the same way that God’s Ruakh is sustaining me, He is also sustaining Davis.  Davis has been called to an unthinkable task.  He is being sustained and empowered through the impossible.  Davis will forever be transformed through the cancer process and suffering that he is enduring in this life.  God’s Ruakh in Davis is a mighty force, empowering Davis to move through his treatment with grace, and beauty.  Davis has more courage, tenacity, strength, and will power, than anyone I know.  His spirit is also being recreated.  He will never be who he once was, but is being re-created to reflect more and more of God’s purposes in his life.

I’m not sure which “What If” will be ours to walk through.  They all come with their own sufferings, sacrifices, and losses.   What I do know is the Ruakh that provides  breath in each of us, is the same Ruakh that empowers us to continue to put one foot in front of the other, endure suffering, and continually transforms us to reflect more of Him.  That is a privilege that I desperately cling to in gratitude, that I know each breath will come, because His Ruakh is ever present in my being.  Oh goodness…..here I go again……weeping.

Kristen Adams
Celebrations and Hauntings

It’s been a long 6.5 weeks. The schedule for radiation was grueling and quite frankly annoying. Radiation required that Davis not eat or drink in the morning until after our appointment, because he was put under anesthesia every day. It consumed our mornings either packing up for the hospital, or staying by Davis’ side so he didn’t sneak in any water or breakfast. Sometimes our appointments weren’t until 11:45 , so it made for long days. Throughout the past 6 weeks his Chemo schedule continued alongside Radiation. There were two weeks where every day we went to both hospitals. Through it all Davis was such a strong boy. He wasn’t happy about the schedule, yet he was resilient and continued to change his attitude and heart to make it as tolerable as possible. He got the job done!

Because our prayers have been answered, we have made it through without any significant skin break down. We are praising God that so far, his skin’s response has been manageable and not painful. The biggest physical side effect we have been battling is nausea. Radiating your entire abdomen is really hard on your organs, and causes significant nausea. He has decreased how much he eats over the weeks, and thus has dropped in weight. Buddy Boy gets to eat whatever he wants whenever he wants. We are hopeful now radiation is over, in two weeks we will see an increase in his appetite. 

As we went to todays’ final appointment I noticed I had to choose to celebrate it. Funny thing, I’ve never experienced resistance to celebration. Lance always teases me that I have a “birthmonth” celebration, rather than just a birthday celebration. I’ve always wanted to do special things to honor milestones, birthdays, even “just because” celebrations. Today’s celebration was different, just like every experience I’ve had since Davis was diagnosed, different. I have anticipated today and tried to think of what we should do. I bought a cake yesterday, but couldn’t bring myself to go to the party store to get streamers and party hats. I woke up this morning and my mind was racing that I should get him balloons, he loves balloons, so I left and bought them at Fry’s at 7:30 AM. Today was worth celebrating because with everything Davis has been through, this is his first “last” in the process, our first time completing an aspect of his treatment. We are so thankful for that “win”. My celebration also comes with mourning that he even has to endure this, that he was ever diagnosed, and fervent prayers against long term effects of radiation on his body. The Radiologist came in to celebrate with us that it’s his last treatment. She said congratulations, and then continued to let us know what his life long follow up process will be with Mayo. Ugh. We discussed how often we will be back to monitor him, looking for side effects, scar tissue, growth delays, walking complications, and of course possible future cancer. So my gratitude for today’s final appointment also comes with the reminder of how cancer has changed my sons life forever. How cancer has changed my life forever. 

When these celebrations come I am committed to taking the time to celebrate. We all need to notice the good amidst the bad, and even if Davis doesn’t fully understand what we are celebrating, my family does and our hearts need it. In these celebrations I am also reminded of the haunting that is Cancer. Cancer lurks behind my every move. So even in the midst of celebration, I’m sitting in mourning, tearful even, over this life. Cancer is a haunting that will follow me wherever I go, even celebrations of victory. Cancer and I are getting acquainted with one another, but I’m not fully sure what to do with this new haunting yet. 

We all have hauntings, something from our story that we carry with us everywhere we go, either consciously or unconsciously. We have experiences in our past that form how we show up in our lives today. For some of you it’s past wounds from spouses, childhood trauma, medical sufferings, betrayal, or even familial wounds. I would encourage you to turn around and look your hauntings straight in the eye. Being blind to our hauntings, often times, perpetuates more wounding in ourselves and those we love.

Cancer is a new haunting that will be with me for a long time. To have ignored this haunting today would have meant pretending that it wasn’t there. The haunting of Cancer is fear of the future unknown. We will live our next years always wondering if/when cancer will show its ugly evil face again in our lives. Today’s celebration was in many ways a reminder of this haunting. I can either try to ignore it, or turn around and look it straight in the eye. In Christ I know I can look at any part of my hauntings and still be ok, because I am beloved, nurtured, loved. So I slowly look at it, acknowledge it’s there, even in the midst of celebrations. Today our celebration also came with tears. That’s ok. I felt the Lord’s presence throughout the day. He is with us and for us. I praise Him for giving us the strength to endure these past 6.5 weeks, and that is worth celebrating. To Him be the Glory!


Kristen Adams
Starting Radiation TODAY

The beginnings of a long day... today Davis gets his nasty cocktail of chemo at Phx Children’s then they will head to Mayo to start his radiation protocol that will go for the next 5 1/2 weeks. 

While chemotherapy works to kill the cancer cells from the inside, radiation works to kill cancer cells from the outside. He will be put under anesthesia and the radiation will target the areas in his abdomen affected by this cancer like a super strong X-ray. 

They will go for radiation every week day on top of necessary chemo appointments and other appointments heading their way. There will be new side effects to manage, hydration to stay up on, and added medications and supplements to keep track of. Needless to say, it is going to be a long and grueling couple of months (as if this whole thing wasn’t already) so we have added some opportunities to help with meals. 

Please keep praying! We are so deeply grateful for the smile you see but we also know that a battle is still waging inside of his body. We praise God for the glimpses of light through this darkness and still bring Him our pleas for complete healing. 


Kristen Adams
From Amanda

I apologize for the delay in posting.  It seems that even if we have intentions of posting every week, it ends up getting away from us.  I can’t imagine why?!?!

The stress that comes with this new life feels overwhelming.  One day I’ll be motivated to do what I need to in the house, the next I don’t want to get off the couch.  The waves of depression and anxiety come rushing through my body and mind, leaving me to figure out how to keep moving forward and help support my family in the ways they need me to.  Because it is only fair that I do what I would tell others to do and attempt some sort of self care, I have started going to hot yoga.  That’s right, you read that correctly, HOT yoga…and I love it!  I am also starting individual therapy, Lance and I are going to couples counseling, and the kids will go to a play therapist.  The added appointments in our life were enough to keep me away from making these appointments for the past three months, but it is time.  We need help; we don’t know what we are doing.  Every scenario between my personal life, professional life, mom life, wife life are all new and unfamiliar.  It is humbling to say the least.  I officially don’t have my shit together.

I wanted to share about marriage and trauma/crisis, but first it’s important that some of you get to know me a bit before I start sharing what it’s like to be married to me these past three months.  Pre-cancer I was a very independent and opinionated woman. Pre-cancer I loved my career as a therapist, its part of who I am.  I was driven to do better for my clients, and continue to grow in my career.  I loved running Heritage Women, our women’s ministry at Heritage Church.  I would spend hours in meetings and conference calls, all while putting on awesome events for our women to know Jesus more.    All of this didn’t require much of Lance, and my emotional needs were fairly managable.  I needed his support and love and flexibility for these experiences, but generally I could get through much with asking little from him.

I think one of the biggest adjustments in our marriage since Davis was diagnosed is my need for Lance.  I am fragile and weak.  Lance has many times looked at me as if to say, “I have no clue what to do with weak Amanda”, I get it babe, I don’t even know what to do with weak Amanda.  Weak Amanda is unpredictable, emotionally dis-regulated, short fused, tired, disconnected, and sad daily.  I have never asked more of him in these past three months than our entire marriage combined.  It’s been hard.  I’m sure there have been requests that were unfair, unloving, and selfish at times and yet he shows up.  Even if he shows up angry or frustrated, he shows up.  That’s what I admire about him.  It takes a man with grit to be married to me.  I, myself, am tenacious and it takes a lot for me to let things go.  He stands with me and for me.  We don’t know what we’re doing.  It’s been ugly at times.  We have fought, cried, been disconnected, been each other’s verbal punching bags. And then sex……although not absent, it has seen some significant adjustments these past few months. When there is nowhere else to put our emotions we put them on one another.  I can officially say that I understand why so many relationships don’t make it through significant trauma.  It hasn’t been pretty. We love each other, profoundly and deeply. So much so that we will hurt each other the most.  It’s our most vulnerable relationships that we hurt the most and neglect the most.  All out of a deep fear of rejection or being unloved.  So due to all of this, we are going to counseling.  We are both eager to have a space that is a scheduled check-in with each other, and a support for our marriage.  We are committed to one another, and will do what it takes to get through this as best we can.

My heart has been broken regarding Davis’s side effect of neuropathy in his hands and feet from his weekly chemo Vincristine.  When this all started I wouldn’t have been able to predict the depth of loss and the continuation of loss throughout this process.  We have lost so much.  Our most recent loss we are all mourning is Davis having feeling in his feet and hands.  He can’t feel them.  He shuffles his feet and requires leg braces when we go out walking.  His hands are curled in and his fingers are limp.  He is still using them but is incredibly limited in strength and fine motor skills.  They are cutting his dosage in half to try and repair some of the damage his nerves have experienced.  It is expected to all return at the end of treatment.  Thank you Jesus!

Grief is ugly.  It knows no time limits, it’s waves come unpredictably, and it can be all consuming. Any time I consider his hands I cry.  I’m just not accepting of it.  I dream of storming in his doctors offices and screaming at them that he won’t be getting that chemo anymore.  I cry even now as I’m typing because I’m just so heart broken.  My baby can’t feel his hands and I could scream I’m so sad about it.  I want him to have a carefree play date, I want him to be able to run outside without fear he will trip and fall and land on his port. I so badly want him to be able to pick up legos again, and push hard enough to connect them.  And yet that isn’t his story.  So instead I will show up to his doctors appointments respectfully advocating for him.  Asking as many questions I can think of, and finding out all the options we have.  Instead, I will cherish the times he holds my face and his fingers are folded in and he caresses my cheeks with the outside of his knuckles.  All the while saying “I love you mommy.”  I will always remember the many times I’ve seen him climb things that in my mind I think, you aren’t going to be able to get to the top, and he proves me wrong.  He’s a fighter.  He is more determined to get to the top than to give into the limitations that his chemotherapy has given him.  This will get him so far in life.  He is my hero.

I know my describing myself as weak probably sparked in some of you an inward desire to fix that for me.  I’m sure some of you have an urge to text me and encourage me that I’m strong. I so appreciate all of your love and encouragement in this process.  There is no text, email, or voicemail that hasn’t gone unread or not listened to. I have no shame in saying I’m weak.  I am.  I am created by the Divine and living in the fallen.  My physical self is limited, but my God is limitless.  So whatever you perceive in me as strength know this…the strength is only coming from the Holy Spirit.  The times I’m able to do the laundry, go to appointments, smile, know it is only in Christ that I am able.  So I’m ok acknowledging my weakness.  I’m trying to become more comfortable with my weakness.  It is only then I can point and give Christ the Glory He has always deserved.

Kristen Adams
Thank you, Chick-fil-A Paradise Valley!

What a hugely successful night we had at Chick-fil-A Paradise Valley praying for Davis and the Robinson family, being together with this sweet community, and eating lots and lots of chicken and waffle fries. It was a good night, but underlying it all, our hearts continue to ache in the reality that only half of the Robinson family could be there tonight. Davis’s little body continues to fight at home, his immune system so compromised that he was once again turned away from his chemo treatment this week. This process involves so much waiting. Waiting and lots of unknowns. And so we turn to God’s Word —

“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” -2 Corinthians 4:16-18

The suffering this family endures is producing an eternal weight of glory to come. So like them, we must be joyful in hope and fervent in prayer. Because there is a point and a purpose.

“And the point is not that the afflictions merely precede the glory; they help produce the glory. There is a real causal connection between how we endure hardship now and how much we will be able to enjoy the glory of God in the ages to come. Not one moment of patient pain is wasted. I do not lose heart . . . for all my troubles are producing for me an eternal weight of glory beyond all comparison.” -John Piper, Desiring God

May the reality of eternity be present on our hearts, and may we be so thankful tonight that we can pray and gather in a public restaurant with our people. We love Chick-fil-A and the people of Chick-fil-A Paradise Valley — you guys are a real gift. ❤️

Kristen Adams
A Special Day and Then Delays

Written by Alison Robinson

This last weekend Davis was feeling good and his counts were stable. We’ve come to find that there aren’t many times that his counts are good enough to be out and he feels good at the same time. And even if that happens at the same time, there are still risks of being out and about. But last weekend everything seemed to line up and we had a special opportunity to go visit a friend at Phoenix Fire station #4.

From the moment we got there to the moment we left, the fireman made our kids feel so special; with no detail left out. When we got there they gave Davis his own REAL fire helmet to keep! I think the helmet weighs as much as he does but he loves it. After getting a full tour of the station and trucks they took the kids, Amanda and I for a ride on the big ladder truck. Davis got to ride shotgun and had full control of the horn. Not sure all the neighbors or anyone driving in front of us thought it was as much fun as he did! All the kids had headphones to talk to each other and it was so fun to sit back and listen to their conversations when they thought no one is listening. Once we got back to the station they set the ladder truck up so we could go up in the bucket. Davis got to go first all by himself with the fireman. Watching him smile and wave down to us was so sweet — just a little boy enjoying himself to the fullest. After Davis was done, the other kids and I got to go up. Wow, what a view — but super wobbly!! Can’t image climbing that ladder in full gear. It was such a fun few hours. Watching Davis just be a kid hanging with Lily and his cousins was so refreshing. I’m so grateful we got to enjoy this special time together because...

As things seem to go on Davis’s journey, come Monday morning they got discouraging news. Davis’s numbers weren’t high enough to do his Chemo this week. This next round of Chemo is a big one where he gets treated every day for 5 days. As you can image lots of preperation went into this week, being that they would be at the hospital everyday for chemo. So when they were sent home to wait another week and try again next Monday, it was very discouraging. This is the first delay Davis has had in his treatments. This is something the doctors said would happen and probably happen a few more times. So now we sit here in this week of waiting. We are reminded once again that Davis’s journey is not in our hands. We are reminded how hard his body is fighting all while having a joyful smile on his face. We are reminded to continue to be thankful for all the joyful moments. We are ultimately reminded to continue to bind ourselves with Christ as He is the only stability is this unpredictable journey.

A song I had never heard before came on the radio Monday as I was driving and thinking about the news of the delay in treatment. It spoke right to me. Here’s just a part of the song-

Yes I will, lift You high in the lowest valley
Yes I will, bless Your name
Oh, yes I will, sing for joy when my heart is heavy
All my days, oh yes I will
I count on one thing
The same God that never fails
Will not fail me now
You won't fail me now
In the waiting
The same God who's never late
Is working all things out
Is working all things out

“Yes I will” by Vertical Worship

So as we sit in this week of waiting, please pray that Davis’s white blood and bone marrow counts will be high enough to do chemo next Monday. Please pray that his body would continue fighting hard, and that he would continue to laugh and experience joy-filled times just being the spunky little boy we all know and love. Pray for Lance, Amanda and Lily as they rearrange another week to hopefully pick up where they left off with the chemo schedule next week. And please…lets continue to celebrate and be thankful for the news we got last week of a clear scan!

Kristen Adams
Christmas and Cancer

As I’ve learned to expect in the world of cancer, these past couple of weeks have come with some ups and downs. Let’s start with the blessings because those are what remind us that God is so good in the midst of such darkness and sadness.

Our blessings…

  • We were able to go to Lance’s family and my family’s Christmas celebrations. Davis’s white blood counts were up and he was doing so well, so they said we could go and be with family as long as they were healthy. The biggest miracle was that all 8 adults and 6 kids were healthy through Christmas. Praise Jesus!

  • We were able to attend the Christmas Eve Service at our church, Heritage Church. My plan was to come late and leave early. Davis wore a mask to prevent airborne germs and it seems to have worked as he hasn’t shown any sickness symptoms.

  • Lance was interviewed by Glenn Beck on his international podcast/radio show in order to share Davis’s story. The feeling that thousands of people were asked to pray over Davis and Lily made my heart explode. I was so proud having listened to my husband articulate the most difficult thing we have ever experienced in such a beautiful way. I wept as I listened, and wept as we experienced the response of prayers, notes, cards, and generosity of giving.

  • This cancer life comes with many fears, one of the biggest being financial. We are so thankful and blessed by the amount of generosity that has been given to us financially. Thank you from the bottom of our hearts. We were able to buy Christmas gifts, and have been able to get Davis all the naturopathic supplements that he needs. Thank you for loving us in such a tangible way as this is just the beginning.

  • God continues to amaze us with Davis’s strength and resiliency in this process. God has been given glory over and over through conversations with doctors, nurses, and even in you all having conversations where we are all asking hard questions. God is ever-present even in the scary and difficult spaces.

  • We have the dearest of friends who blessed us with “12 days of Christmas” leading up to the big day. They knew that our Christmas experience would be limited compared to past Christmas celebrations. The kids would wait every day by the windows hoping to catch the “little elves” that were dropping off all these fun Christmas activities. We made gingerbread houses, had movie nights, went on a Christmas light scavenger hunt, did Christmas crafts, had lovely hot chocolate dates under blankets by the fire, and so many more. Thank you to everyone who blessed us with these experiences. You made my kids Christmas so much more special!

  • Also - we bought a dog! This puppy has been a welcomed relief and emotional comfort for us all. Lily and Davis are so excited for this family addition. Welcome to the family Jingles!!!

Our struggles…

  • The day after Christmas, first thing in the morning, Davis was scheduled to begin his 3rd big cocktail of chemo. This reality was looming over us throughout the days leading up; knowing our time of him feeling well was coming to a close.

  • I am officially a cancer patient mom because I’m able to disconnect Davis’s “tubies” on my own. I’m doing things that in the beginning of this I swore I wouldn’t do, like flush his port, put Heprin in it (to prevent clotting in his port) and then cap it off. It’s amazing what you will do for your kids comfort in an attempt to make their life as easy as possible, attempting to prevent more hospital time with every ounce of energy you have.

  • This last round of chemo has come with more side effects than previously. He has been nauseous, vomiting, had diarrhea, and been very tired. However, these symptoms seem to have subsided already. So even though there were more, it seems to have been short lived.

  • The doctors refer to chemo as medicine to Davis. This has proven to be a problem. He has now associated that “medicine” actually makes him sick. So it has been a battle to get him to take his meds at home. He insists that medicine will make him feel worse. We now intentionally separate the terms chemo and medicine in order to make it clear which is which. As we all know, chemo is poison and he isn’t wrong in realizing how it makes him feel horrible. I wouldn’t want to take that “medicine” either. It takes both Lance and I to coerce him to take meds at night. If any of you have experienced Davis’s anger, you have a picture of the battle we face when it’s medicine time.

  • I’ve debated in my head how to share this last struggle. So here goes nothing……I continued to find my mind asking whether this would be my last Christmas with Davis or not. I’m not naïve in knowing that we could all die at any time. We actually never know whether our holidays will be our last ones with our loved ones. I found myself holding my breath many times throughout the Christmas activities trying to will/demand the thoughts and tears to go away. At one point I snapped at Lance begging him to not ask me what’s wrong because if I say the words out loud, I would break.

It’s amazing the amount of fear we all hold regarding death, regardless of faith, if we really allow ourselves to sit in it. I don’t believe these considerations take away from God. If anything, they highlight Him more. There is no time I have ever had a deeper need of my Savior, Jesus Christ, than in this life I’ve lived since Davis’s diagnosis. Cancer is evil and yet God is good. Even though this might have been my most painful Christmas so far, it will be marked for me as a Christmas where I experienced the depth and vulnerable helplessness of what it means to need Jesus. I’ve never been more thankful for Jesus’s birth, death, and resurrection than I am today.

I can’t help but wonder, if we don’t allow ourselves to consider our deepest vulnerabilities, do we really believe we need Jesus? If we fool ourselves that we have everything figured out, or that we are unaffected by others, then we fool ourselves from truly believing we deeply need salvation. Don’t shy away from your vulnerabilities, because ultimately it means you are shying away from Jesus.

We continue to thank God for His blessings amidst the struggle for we know that the blessings remind us of who He is and the struggles refine us to be more like Jesus. Thank you for walking this journey with us.


Kristen Adams
Glenn Beck Interview

Glenn Beck is featuring Davis’s story on his radio program TODAY! It already aired live online and it will air on the radio again tonight at 7PM! Listen to the clip here.

Kristen Adams
Silence and Solitude

This life is still so surreal. I’m sitting in a hospital room that I’ve learned to make my home. I know where I want my things and how to organize our stay. It’s now familiar. My soul hates that it’s familiar. Every time a piece of this normalizes my spirit gets so angry. Eventually the anger dissipates into gratitude that one less thing is dysregulating. Overall, I hate this.

I’ve come to sit down and write a few times over the last two weeks, and when I sit I have resistance to it. It’s like my body is holding the depth of all my emotions and I can feel it wanting me to recoil. I can feel the urges in my body to just hide, withdraw, and pull away. And yet I know in my heart that would be against who I am, what I stand for, and how I know God calls us to walk the road of suffering. To walk in suffering is to be reminded of our deep and vulnerable need for a Savior; the opportunity to draw closer to Him in true deep need.


Even the joy comes with suffering. There are little opportunities we have to enjoy our time through singing, playing, and going to movies they show here at the hospital. I sit and laugh and experience the happiness of those things, all the while my heart is heavy and aches that my points of happiness exist in the throws of cancer. Cancer is all consuming. It absorbs into every fiber of your awareness, act, thought, and perspectives. It is a fight to think of something else. It has to be a deliberate choice of self-care, to set it aside and think of anything else.

We did a conference with Heritage Women in the beginning of the year. Our focus was on Spiritual Disciplines and I chose to practice Silence and Solitude. Little did I know that was my boot camp preparing me for war. There is a war raging in my mind. A war that wants to overcome, invade, and take over my every thought. But I have practices that are getting me through. Practices of mindfulness to help me to fight to be present with my family, friends, and circumstances. Spiritual discipline practices to help remind me of the Lord’s ever-presence and His unfailing comfort. I’ve sat in more silence and solitude in the last 4 weeks than I ever have in my life. I now have comfort in that space that I wouldn’t have had before. I have experienced an intimacy with the Lord in those spaces I have never experienced otherwise. There is always opportunity to be with Him; it’s just us learning how, and practicing.

When I am with the Lord I’m not whole. I don’t want to paint a picture that I’m sitting with Him put together and open-handedly inviting His will. I’m carrying deep anxiety. I walk with my stomach in knots 90% of my day. So when I’m trying to do my skills and spending time with the Lord, it’s in my brokenness. I bring my anxieties with me and just sit with Him in it. Fortunately, God doesn’t need us to have our shit together. Because I certainly don’t.

What I rest in today is that Davis has had minimal side effects of his chemo so far. We are on day 3 of a 5-day medicine. He is tired and nauseous, but nothing like the terrible side effects the doctors prepared us for. Praising God for this and so thankful for the many prayers holding his little body up before the Father.


Kristen Adams
Gearing up for Round 2. Week 1.

Davis will be admitted to PCH on Wednesday to start his 2nd round of chemo treatments. He is on a 3-week treatment cycle, with the 1st week being a large cocktail of medications and the 2nd and 3rd weeks being 1 medication. They are unsure of how Davis will respond to this week of treatment. The doctors will be introducing a new medicine to his little body too this week.

Prayer Requests from Amanda:

  • “Pray the Davis has minimal side effects.”

  • “Prayer for Lily as we are not sure how much we will get to see her this trip. It’s so hard to be separated. It makes us all so sad and feels like salt in the wound. If Davis has minimal symptoms we will hopefully have her come see us every day.”

  • “Prayers for continued health. And thanks to everyone who has kept their distance due to germs. So far we have managed to not get anything 🙌🏻”

We have added a few NEW needs to the LotsaHelpingHands site:

  • Postmates Dinner for Thursday, Saturday and Sunday. Lance and Amanda have a Postmates account that we’ve set up so they can place their own orders directly to the hospital. If you would like to provide a meal for one of these days, please sign-up for the specific day on lotsahelpinghands.com and then donate here and the money will go directly to their Postmates order.

  • There is currently a t-shirt fundraiser going on through the end of this week (4 more days!) over at bonfire.com if you would like to purchase a shirt in honor of Davis. We are also looking for 2 more people who would be willing to buy a shirt for Lily and Davis so they could have one to wear too! You can sign up on lotsahelpinghands.com for that too.

We have also added a RECURRING GIFTS option to this website.

This is going to be a year-long process for the Robinsons and their financial situation has changed dramatically because of it. Please prayerfully consider giving on a monthly basis to help offset their loss of income for this next 12 months. Your donations will help ease the burden during this time.

Lastly, Davis has NOT forgotten its Christmas!

Amanda recorded a video of him singing during his chemo treatment 2 weeks ago. Davis is still full of joy, even in the midst of all he’s endured. Enjoy this……“Jingle Bells” by Davis Robinson.

Kristen Adams
A Message to Heritage Women (and everyone else) from Amanda

As many of you know, the Robinsons attend Heritage Church in Phoenix, AZ and this last Friday we had the opportunity to host a women’s Christmas event as a kick-off to the Advent season. Amanda was scheduled to speak at the event, but because of all that has happened with Davis, she chose to step aside and allow a long-time friend of hers to speak in her place. She was still able to attend the event, and at the end, stood up to say a few words to our women. Her message was a powerful reminder that life, especially this season, is meaningless without Jesus. That investing in relationships and living in community is always better, because God says so. That He calls us to bear one another burdens for a reason. And that life continues on, even in the midst of awful circumstances and all the unknowns. We still show up to worship, pray, read God’s Word, and give thanks to Him like always, because that’s what He wants us to do. We know that our Father is the great Comforter and that He promises to be with us through it all. His presence and promises are hope and comfort all year long.

Jesus. Immanuel. God with us.

We felt that Amanda’s message to our women was too powerful not to share. Please let is sink down deep this season.

The Robinsons are preparing for Davis to be admitted to PCH starting on Wednesday for the 1st week of his 2nd round of chemotherapy treatment. I will be posting another update tomorrow with specific prayer requests and needs for this upcoming hospital stay. Please continue to pray and support the Robinson family.

Kristen Adams
A new haircut

Little buddy’s hair started falling out on Friday. So Saturday dad brought his clippers and we shaved it off. It was so surprising how much this affected him. Even though we fully explained it to him, he still accused his dad of “tricking him”. Today he woke up and asked where his hair was. Then he just moved on and kept playing. One more reminder of our circumstance. I pray the medicine that took his hair will take the cancer too!


#prayfordavis #baldy

Kristen Adams

After a week of our new normal around the Robinson house, we had our second chemo appointment set for yesterday, Wednesday, the 21st of November. Although Davis was very anxious and scared to go back to the hospital, Lily, Amanda, and I were all able to be there for support. It was actually really sweet to watch Lily hold Davis’s hand in the car on the way to the appointment. The process goes like this — they call us back for his appointment and take the usual vital information, and after that, the nurses access his port, take blood cultures and blood samples for testing. If all of his info looks ok, they give us the go ahead to receive his chemo treatment. The actual chemo this time took about 5 minutes to be infused through his port, which is amazing. In the future that won’t always be the case; but this time it was pretty quick.

During the appointment, Amanda and I had a chance to talk to his main oncology fellows, Dr. De La Maza and Dr. Williams, and they both seem to be really fond of Davis. We actually received some really good news while meeting with them. In the case of Rhabdomyosarcoma (RMS) there are a few different mutations that they look for, alveolar and embryonal being the most prevalent. The good news...actually great news...is that after genetic testing of the tumor, they have determined that Davis has embryonal type RMS, which is the less aggressive form of RMS! Praise God for this victory along the way! The crazy thing is that in terms of embryonal RMS, we were told that he is 1 of 9 cases that have ever been recorded with RMS presenting in the location of his major tumor. Only NINE ever...absolutely crazy! We also found out that his ANC (white blood cell count) was very low at his appointment. His ANC was 120 prior to the infusion. To put this into perspective, the normal healthy ANC is 1500+, so his ability to fight other infections is really low. Although I internally freaked out upon hearing this, Davis’s ANC will fluctuate rapidly after all his chemo treatments and it is not abnormal to get very low.  

After getting home from the appointment, we found out the power of Zofran. Davis was doing fine until about 10:30 when he woke up in pain and was very obviously ill. The Zofran helped him get back to sleep, and he was fine the rest of the night. Praise God for good sleep!  

This morning everything was going well. Davis still seemed to have a bit of an upset stomach, but we were doing ok. While watching the Macy’s Thanksgiving Day Parade and playing on the couch, he started to feel warm. We checked his temperature, which was over 101, and off we went to the hospital. Our instructions from the hospital are very clear — a sustained temperature of 100.4º for an hour and we come to the hospital. If the temperature ever hits 101º, we immediately come to the hospital. If we have to come to the hospital, we are almost guaranteed to be admitted and have at least a 2 day stay, which is where we are now. Upon arrival, the emergency department immediately accesses his port, takes blood samples and cultures, and starts him on antibiotics. In order to go home, we have to be at least 24 hours with no fever, and if his cultures are positive for some form of bacterial infection, they have to be confident that they can clear it with oral antibiotics prior to us leaving. His ANC also has to be north of 200 and climbing, which seems like a long stretch from the 20 that he measured when we got here today, but apparently these numbers can rise quite fast at times so we are hopeful for that.  

Although I have a lot of optimism about our new normal, the past few weeks have been incredibly hard as well. We have been struggling though family decisions that we have to make for the next year. Both Amanda and I have had different days of being depressed and even sometimes downright angry. On top of this, I am trying to assimilate back into my work, which is a huge challenge for a lot of reasons. One of the hardest things in this season is that my dad and Davis’s namesake, Brent Robinson, died from cancer the day before Thanksgiving 6 years ago. It is really troublesome to be in or around a hospital during this time of the year for many reasons now. But as I’m writing this, it is Thanksgiving, and there are many things that I am thankful for. I’m thankful for friends and family. I’m thankful for the support of our community at Heritage Church, as well as the tons of support we have received from the greater Church community as a whole. Your prayers and emotional support have been palpable in our house, and we are blown away by the financial support that we have received. I’m also thankful for all the staff at PCH that help to calm our worries during these visits. Most of all I am thankful for the hope that only comes from knowing that God is in control of my life, and my family’s lives. No matter what happens in this life, God is in control; and as He has been teaching me lately, the choice that I have to make is whether or not to be dependent on Him. Thank you Father, for showing me that you are in control once again!


Kristen Adams Comments
A new normal

We are home now. It became a joke with the doctors that I didn’t want to leave. The hospital feels so sterile, secure, and safe. The care that Davis received was so intentional, loving, and competent. And here we are, stepping in to care for him from home as best as we can.

I can only speak for myself, but coming home felt so odd. It was similar to driving home with your newborn child. The home is the same and yet everything is different. I still struggle to articulate how it feels. It’s just…..different.

Davis has somehow made it through his first chemo treatment without any symptoms or side effects. He is in good spirits, sweet as ever, and only occasionally angry. I’m thanking God daily for this. Praise!

Lily has gone back to school. She seems to be acclimating well. I check in with her teacher often, who is sweet enough to engage my check-in’s in order to calm my spirit and worry. Lily is such a strong, compassionate, and nurturing girl. She has impressed us so much with who she is this past week.

Lance went to his doctors appointment and they decided, due to the placement of the herniated disc, to not do surgery. They suggested it is best if his body can heal on its own and referred us to a pain management center where he will receive an epidural/spinal block to relieve the pain. So we are still praying and waiting for some relief for him and his extreme back pain. He has had to adjust to not doing anything and everything he wants to physically. If any of you know Lance, this has been a rude awakening to how mortal he truly is.

And then there’s me….I feel like just today I came out of my fog. I have found myself this week walking in circles around the house. I get into a room and for the life of me can’t remember what I went in there to get. I still negotiate in my mind if last week really happened. Did my son really get diagnosed with cancer? Am I really going to take him next week to get chemotherapy? Man, life is so different. I talk to God a lot. I tell him all the ways I’m scared, upset, nervous, and overwhelmed. Sometimes I don’t want to talk to Him at all. So I don’t.

One of the hardest losses for me is the thought of my career stepping back and slowing down. I had momentum. I had dreams and hopes of where I was going as a therapist. It’s amazing the things we lose in life. No matter how much I love my job, Davis is worth the loss of any dream. It’s only temporary. God is allowing me to put my dreams aside temporarily. I’m going to try and do what I can with clients and work, but overall, it’s all come to a screeching halt.

What is God wanting to do through all this? Where is He taking us now? I can almost feel the anticipation as I ask that question, peeking from around the sadness and loss. I don’t have clarity of where we are going, but what I do know is God has something big waiting. Something big for my baby boy. There have been so many interactions with doctors and nurses where it was obvious that Davis was being a light for Jesus with them. I have seen God glorified firsthand through this experience. He continues to be our sustainer; He continues to be our foundation.

Kristen Adams
Good results and going home

The bone marrow scan was CLEAR. Praise the Lord!!! What a WIN. This is a HUGE relief and so so positive for Davis. Continue to pray that his treatment would eliminate the remaining cancer cells without damaging his good, healthy cells! So far he has had little to no side effects from the chemo treatment so that is also a WIN.

Davis’s next appointment for chemo is Monday at 10:30am.

We are happy to report that Lance, Amanda, Lily and Davis are ALL HOME now and sleeping under the same roof tonight! Davis is in good spirits and Lily is very happy to be back in her own space…although she did know her way around that hospital pretty well.

As you can imagine, this adjustment has been overwhelming for Lance and Amanda. Being back in their own home brings up so many intense emotions. Things around them are the same and yet, everything has changed. In the coming days and weeks they will have to make huge life decisions and financial adjustments that are weighing on them big time. They also have to learn and adjust so much of their life around cancer life now. They have to learn all these new medications and maintain schedules and keep watch over Davis for chemo symptoms, while doing what they can to make sure he doesn’t pick up any other sickness from the outside world. They are used to being on-the-go and around people so much. This new life will be a stark contrast.

Please pray….

  • Davis would continue to have little to no side effects from chemo.

  • Davis would remain as healthy as possible and that friends and family would be diligent and respectful of his compromised immune system and keep sickness AWAY.

  • Lance would be able to see his spine doctor and schedule surgery QUICKLY. For his pain to subside until then so he can be present for his family.

  • Lance and Amanda can remain personally healthy, so they can be with Davis and strong for him.

  • Lance and Amanda would be united in the tough decisions ahead of them while adjusting to their new normal. Pray they would quickly find rhythm and margin where needed, both together as a couple and separately for themselves.

  • Their community would provide financial support to them so this burden could be lightened. (And THANK YOU to all those that have already made generous contributions!) There are so many things we cannot control in this situation, but one thing we CAN do is be generous with our money and time and pour into them, like they have sacrificially poured into so many of us. Pray that God would prompt people to give.

  • God would give Lance and Amanda medical knowledge surrounding his diagnosis and medications, and wisdom in caring for Davis while at home. Pray that they would become intense learners of him and his diagnosis and be partners, alongside the doctors, in helping Davis to rid this cancer from his little body.


Kristen Adams Comments
Day 3 of Chemo

Well here we are, day 3 of chemotherapy treatment. It’s still surreal. I wake up every time in total shock.  I sleep in his bed because every time we touch I just feel so much comfort. 

We walked away from our life completely on Monday afternoon. Everything stopped. Our room looks out into the city and everyone still goes to work, still goes to restaurants, lives their life, and our life is here now. Our life is in a hospital room that can go from totally chaos one minute to eerie silence the next. 

Davis goes through all the emotions throughout the day. One minute he is sweet, the next he is spunky and trying to pinch the nurse with his grabber toy. Ha! He is the most courageous boy I have ever known. He tells the nurses and doctors what to do. He does not lack assertiveness, that’s for sure!  

Every time the door opens we all feel our stomachs turn just a bit. I’ve learned the schedule of the different doctors that filter in and out of here every day. I can sense in my body when we are getting closer to the next visit. The next visit that I might learn yet one more thing that is different in our lives, one more reality that takes the breath out of me. 

I miss my Lily so much. Every time she walks into the room my heart feels lighter. She feels like home. And then something happens that I have to attend to and our time together is lost. She is being swept up into the chaotic world of cancer; we all have been swept up into the chaotic world of cancer. 

It’s amazing the decisions you face in a crisis like this. Our priorities have changed. We have prepared to make sacrifices that we never imagined. The Lord has chosen us to shift our focus to the things that matter most right now; caring for Davis and Lily with everything we have during this season. 

Everything comes and goes, and so will this cancer. Davis is an amazing strong, healthy, silly, caring, feisty boy who has a temporary cancer issue. Lily is a strong, smart, compassionate, loving, silly girl who has a brother that temporarily has cancer. 

Adding to everything else, Lance has a herniated disk and is facing back surgery. Yes, you read that right. Feel free to go back and read it again. This is our reality. I remember hearing stories like mine in passing throughout my life and thinking “how are they surviving?”, “I couldn’t do it”.  These are lies. God created us to step into our life in boldness and confidence in Him. I’m here to tell you, you can face anything with the power of Christ. Even when my legs don’t hold me up and I’m weeping and mourning, the Lord is mourning this with me. He weeps with us in our sorrows and rejoices with us in our celebrations. 

I ask that when you hear our story you would not believe lies that you couldn’t make it through something like this. But rather consider that God created you in His image. And if that’s the case, then it is endless what you can endure. He is our sustainer and where we find our confidence. He loves Davis more than us, which is unfathomable. 

Philippians 4:13 “I can do all things through Christ who strengthens me”


Kristen Adams
The beginning of chemo

What a day. First round of chemo has begun. 

Davis spent most of the afternoon sleeping as he was coming out of another round of anesthesia. The treatment started quiet and peaceful. The first two medicines only take about five minutes each and the third one takes an hour. We sat with him and prayed over his body as the third and final medicine was given. As it was going he caught a bit of energy, ate a little bit of food, started playing with some toys, and even took a few steps around the room! It’s been so good to see his little sweet and spicy personally come out. 

He’s been doing better keeping his oxygen up, there are no more IVs (everything is now going through his port), no more catheter, and we’ve gotten to see his smile again. 

While this gut wrenching journey is just beginning, today couldn’t have ended on a better note. 

Kristen Adams
From Amanda...


Oncology has confirmed the type of cancer in Davis’s body is a form of Rhabdomyosarcoma which is a solid mass tumor cancer. 

Davis is currently in the process of having his port put in as well as a bone marrow test to make sure it hasn’t spread to his blood. Though his blood work has been normal, they are still running this test to be sure. 

Tonight or tomorrow starts the long journey of chemotherapy. It will begin with 2 days of chemo followed by a day of flushing his system then they are expected to be able to go home. The future at this point looks like at least 10 months of weekly chemotherapy. 

Here we are. One more step has been taken in our process. We now have a name for this evil. It’s amazing how the grief and anger can wash over you at once, all the while having this fighter wake up in you that says we are going to kick cancers ass. We will never be the same after this, for the better. My breathe is still the first thing I lose and yet I still find it by the Lords grace. I’m amazed at the strength of my husband and daughter. They are warriors. My beautiful boy is charming the socks off everyone he meets, in between bouts of “red rage” and exhaustion. This is just the beginning of a new life for us. Thank you for your prayers and support. 

I’ll close with this....

Yesterday morning Davis was in a lot of pain and having a really hard time. After many attempts to provide relief and calm, I started humming How Great Is Our God (his favorite worship song). He immediately calmed and was able to finish the procedure in calm and quiet, steadying his breathe, and exuding courage. We serve a big God and He provides a peace beyond all understanding. 


Kristen Adams
Still waiting for more results

I wish I had more to share at the moment but unfortunately they did not receive the results from pathology today. This is what they are waiting on that will tell them exactly what kind of cancer they are dealing with. 

They have been working hard today to keep Davis’s pain under control and his oxygen levels up so his little body can continue to rest and heal from the surgery as he begins the next fight in this battle. 

He is scheduled to have his port put in tomorrow morning with a potential for a bone marrow test as well. They have been told the pathology results should also be in tomorrow and at that point the doctors will be able to form a treatment plan and get to kicking this cancer. 


Kristen Adams
Prayers please!

Prayer warriors... Davis’ little body is in a lot of pain this morning. His bladder isn’t working right now and going into spasms that are painful. With his cough that he has had since he got to the hospital and being intubated twice for surgery and test, he is having a hard time fully inflating his lungs so there is also worry if pneumonia. He needs some peaceful sleep in order to recover and heal to be ready for the next steps of kicking this cancer.


Kristen Adams