Journal entry by Trish Richhart

Grief can be confusing and exhausting.  I have never lost someone as close to me as Samuel.  I often wonder if I am doing this right.  I'm trying to manage my own grief, but also be available for my husband and my children as they walk through this, too.  It's in no way easy.  
"Blessed are those who mourn,

    for they will be comforted."  Matthew 5:4

The Lord walks with us.  Every day I get up early to have my morning coffee with Jesus while the rest of the house still sleeps.  I consider this my therapy because I can pour out my heart to Him and He is a great listener.  He doesn't mind my tears or my complaints and is always there to comfort me.

I have definitely needed quiet space to process Samuel's passing as well as so many of the events of the last few years.  Lately I have been reading old Caring Bridge posts that have been popping up in my Facebook memories from 3 years ago .  These are from shortly after Samuel was diagnosed while he was in his first horrific round of chemo.  That was a really hard time and God really taught me a lot about trusting Him. Things were feeling pretty bleak.   His chemo didn't work as well as hoped, and his body was still full of a lot of leukemia.  On top of that, Samuel was sick with fevers, infection, and appendicitis.   I was having very real worries that it was going to be Samuel's last Christmas.  Then his doctors informed us that they wanted him to start another round of chemo right away which meant him spending Christmas at Riley 140 miles from home and his family.  This was heartbreaking news.  It was in this frame of mind that I wrote these words:
"So, I have been mourning the loss of the Christmas celebration of my expectations.  Christmas will look a lot different this year with traditions having to be adapted and not all of us together for much of it all.  The most important thing about Christmas will still remain.  No matter what, we can still remember how God sent Jesus to rescue a fallen world. I am getting a new perspective of how really fallen our world is - a world where there is sickness and sadness.  So thankful that my hope is not here in this world, but in Jesus our Savior!  That is worth celebrating at Christmas no matter what the circumstances may be."

These words still hold true for me.  This Christmas is also not the Christmas of our expectations.  We expected Samuel to be with us.  We expected to be still deep in the battle, facing hard things, but not this.  Maybe that seems crazy, but God had blessed us with such hope.   We were convinced that Samuel would be healed here on earth.  He was beating the leukemia back again, but the fight had taken such a toll on his body that it couldn't withstand the common infection that took his life.  So despite his long leukemia battle, his passing came as a shock to us.  

There is an emptiness and sorrow putting up Christmas decorations without Samuel.  We hung his stocking and his ornaments, but haven't been able to bring ourselves to set up the train around the tree which was Samuel's favorite.  

Despite this brokenness we feel, the important thing of Christmas does still remain.  God sent Jesus to rescue a fallen world.  We overwhelmingly feel the brokenness of this world with Samuel's death.  But because of what God did, sending Jesus at Christmas, Samuel did not actually experience death.  He passed from this life to the next.  And that is why Christmas matters. 
Jesus came to rescue us.  He came to rescue my son from death.
That gives me a new depth of understanding about why we celebrate. 

In addition, this Christmas as we celebrate Jesus, I am comforted to know that Samuel has the privilege of actually celebrating Christmas WITH Jesus.  That is a beautiful thing!

This grief we are walking through is such a bittersweet thing.  We are so sad and miss Samuel SO much, but at the same time, we are so happy for him experiencing pure joy and perfect health.  When the sorrow seems to be more than I can bear, that us what I cling to.
"For God so loved the world that He gave His one and only Son that whoever believes in Him will not die, but have everlasting life."  John 3:16

Still trusting in His mighty hand,

Journal entry by Trish Richhart

Through Jesus, therefore, let us continually offer to God a sacrifice of praise—the fruit of lips that openly profess his name.
Hebrews 13:15 NIV
 But I will praise and thank you while I give sacrifices to you, and I will keep my promises to you. Salvation comes from the Lord !” - Jonah, from the belly of the fish
Jonah 2:9 NCV
 Today I will chose to offer a sacrifice of praise and thanksgiving.  God is good, all the time.  Even when I am sad.  Even when I am missing my sweet Samuel so very much.  I hear his voice in my head asking me about every detail of the food I am preparing for today.  If he were here, he would be helping me chop and stir.  He was such a little foodie.  These thoughts are so bittersweet - both happy and sad.
 There truly is much to be thankful to God for on this day and every day.  There are blessings of family, friends and comforts.  I will count these blessings that are both here and in heaven.  We will share and cherish memories of Samuel.  There will be sadness, but it will be sprinkled with joy.  Joy over those seated around the table together.  Joy flowing from happy memories.  Joy that comes from knowing where Samuel is and that he is at the ultimate thanksgiving feast.  I'm hoping that heaven will feel just a little closer today as we choose to offer our thanks to God today.

Still trusting in His mighty hand,

Journal entry by Trish Richhart

Yesterday marked exactly one month since we officially celebrated Samuel's life at church with many of you.  It doesn't even seem like it has been that long.  Lately it has felt like whole world is moving along at a normal pace while I am stuck in slow motion.  It seems to take me way more time than it should to do the simplest of tasks.  I was reading a book I was given about grief which talked about brain fog being common.  Well, I guess I am "normal" because my brain is a soupy mess.  I am clearly not feeling like myself.  Most of my days lately could be defined by weariness - bone aching, mind numbing weariness.  I kinda want the whole world to leave me alone and let me curl up in a corner to get lost in a good book.  But life doesn't stop for grief.  There are all these little people in my home with many, many needs.  So I put one foot in front of the other and step forward doing each next thing.  I may feel so slow and inefficient at even the simplest of tasks, but my children are fed and relatively clean, so we are doing ok, I guess.
We are so thankful that many of you continue to pray for our family and are being so supportortive and encouraging.  It means so very much to us.  If you could expand your prayers to include my mom and dad, I would really appreciate it.  I had shared that my mom has been dealing with a lot of pain, but it was unknown why.  Last Monday the pain reached an unbearable level and mom was barely able to move at all.  She was taken by ambulance to the E.R.  The good news is, she finally knows the reason for the pain.  The bad news is that she has another fractured vertebrae.  She had a fractured vertebrae this summer from a fall in the yard that healed well on its own.  This is a new fracture from a different fall in the yard.  This fracture is much worse. It is also a compression fracture, but this time the bone shattered and there is a shard protruding into her spinal column.  Thankfully she has no numbness or tingling as a result and it appears to be stable.  So her doctor does not think she needs surgury, but instead needs to wear a TLSO brace for 2 to 3 months.  She is grateful to be home, but it is challenging for she and my dad.  The brace is uncomfortable and she has to wear it unless she is laying flat on her back.  She cannot tolerate keeping it on all day, so Dad has to help her in and out of it.  Please pray for quick healing for Mom's back and strength for both  Mom and Dad.
One month ago we officially, publically said goodbye to Samuel.  Of course, for us, we say goodbye and mourn his passing from us every single day.  Every day we are confronted with reminders of Samuel.  They both bring me joy in the sweet memory of them and simultaneously break my heart with their finality.  The realization that we will not be making any more of these memories this side of heaven makes me so sad.  So I cry.  But it's ok.  This is what we need to walk through, this bittersweetness.  We take comfort that this sadness is not shared by Samuel.  He is experiencing perfect joy.  But we here still face this crush of emotions. Thankfully, God is here with us, comforting us, holding our hands and that is how we are able to keep going. 

I have had more than one person recently ask me if it makes me uncomfortable for them to bring up Samuel.  I have to say absolutely not.  Samuel is in my thoughts every day.  For someone to share a special memory of him, talk about him, or remember him makes my heart happy.  I may still tear up thinking about Samuel, but I'm OK with that and I hope others are, too.  This grief is a small price to pay for having had the privilege of being mama to Samuel for 8 1/2 years.  I would not give up one minute of that time to spare myself this sadness we are walking through now.  Samuel is indelibly etched upon my heart and I thank God for that!  So speak his name.  It makes our hearts glad to have him remembered with us.

Still trusting in His mighty hand,

PS:  If anyone is interested, either because you were unable to attend or just want to see it again, Samuel's Celebration of Life service is available for viewing.  (See below)

Journal entry by Trish Richhart

This photo showed up on my phone this morning.  It said, "On This Day in 2014."  I can't stop looking at it.  I had forgotten about this exact moment.  It was about 7am on a Friday morning.  We were preparing to leave Lutheran Hospital in town where Samuel had spent the last two days.  This is where we had learned that he had leukemia and our lives were turned upside down.  We had been told that Samuel would need to go to Riley Hospital in Indianapolis to be treated.  He had a 10:30 am appointment and would be admitted.  We had packed in a hurry, our minds distracted and distressed.  As we were ready to walk out, we realized that we had somehow forgotten Samuel's coat and it was cold outside.  Barry placed his jacket on him and declared it just right with a smirk. This is Samuel's response -  this look which is a cross between amusement and annoyance.  He really did not want to wear the coat, but couldn't help seeing the humor in the sleeves that nearly touched the ground and us telling him how perfect it was.
When I look at this photo I can't help but be transported back to that moment and wealth of overwhelming emotions I felt.  There was the suffocating fear.  Fear of cancer.  Fear of the unknown.  Fear of losing my son.  Fear of this tearing our family apart in the process.  All the while, I was trying desperately to pretend I felt calm for the sake of Samuel, hiding my emotions in an attempt to spare this sweet boy from this same awful fear.
So we laughed and we joked with Samuel and appealed to his natural sense of humor.  I thank God for his sweet and silly disposition which helped him face so many hard things.  Samuel's expression in in this photo takes me back to so many precious memories of this very look.

Journal entry by Trish Richhart

Sorry if this is a little too raw and real.  I'm going to be transparent.  I have many asking me how we are doing. Often, I don't know how to answer.  It's a weird mix of emotions. We are OK, but not, if that makes sense.  But this weekend we are approaching anniversaries, not happy ones, and that is rough for me.  Three years ago today, I took Samuel to the doctor for an infected sore on his tongue and asked her about some weird bruising he had.  She ordered blood work and the next day we received the call to rush him to the hospital.  Monday will mark the three year anniversary of his official leukemia diagnosis.  Tomorrow it will be exactly one month since Samuel passed from this life to the next.  I'm feeling sad and emotional.  So many questions for God run through my head.  Because I can't make sense of any of this; I don't understand why we must walk through so much pain.  
One of my questions in my Bible study this morning was, "What does your life reveal about your faith and expectations of God?"  Expectations.  I am struggling with my expectations.  I had very different expectations than what my reality is.  I felt like God led me to believe that Samuel would be healed here on earth.  Perhaps my own desires clouded my perception.  I trust that God has indeed healed Samuel.  I trust that God's ways are better than mine.  But I also feel like NOTHING in this life is secure or sacred.  Anything and everything can be taken away.  Well, except for one thing, and that is God.  He promises that He will never leave or forsake us.  I can say that in our experience, this is true.  He has never left our side, but instead walked us through everything, holding our hand at times, carrying us at others.  
The trust that God will never leave me should be enough.  I know this in my head.  But if I'm honest, I feel insecure.  I wonder what else might be ripped away from me and that leaves me anxious.  So I am sad and anxious and praying constantly for the strength and the courage to put one foot in front of the other and carry on.  Thankfully, God has been giving me that. 
I step forth into the unknown not knowing  what this should look like.  I may fumble.  I'm also trying to carry my children as they grieve, as well.  My right hand man is, of course, grieving, too.  We constantly remind ourselves that this is our sadness, but not Samuel's.  He is good.  He is not missing out on anything; he is experiencing better things.  This is our comfort and we can look forward to our reunion.  Many days I just wish heaven didn't feel so far away.
I have had several people say they hope I keep posting here so they know how to continue to pray for us.  Thank you.  Your prayers are appreciated and effective.  We certainly have challenging days ahead of us.  Our shock and protective numbness is slowly wearing off.  That numbness has been a gift and I pray that it falls away gently.   As we begin to walk through the upcoming holiday season we will be faced with so many memories of times with Samuel.  They will bring joy, but also sadness.  We can't avoid this, we just need to walk through it and process it and I know it will be challenging.  I am still trying to figure out our new normal and what that looks like.  We need God's wisdom for this. 
Also, I would appreciate prayers for my mother.  She is struggling with a lot of pain, but doctors have not been able to determine its cause.  However, it has knocked her completely off her feet.  She needs healing.  Please pray that her doctors have eyes to see the problem and wisdom to relieve her pain.  I hate to see her going through this.
Through it all, we are still trusting in His mighty hand,

Journal entry by Trish Richhart

It has been 17 days since we had to say goodbye to our sweet Samuel.  It seems like yesterday and still feels very fresh.  Last week we were focused on planning his Celebration of Life service.  This kept us distracted and busy and reminded us of so many sweet memories we all have with him.  We are so grateful for everyone who supported us with your prayers, your presence, your cards and your gifts.  Thank you.  
There is a bit of relief over having Samuel's service and the calling times behind us.  Barry and I felt a burden to do that well - to celebrate both the life he HAD with us here on earth and the life he now HAS in heaven.  Thankfully, God gave us the strength to get though that.  
Now we face a new week and are challenged with the question of what next. It is hard to know how to step forward. Part of me wants to jump with both feet back into our busy schedule and bury myself in distraction. Then there's the other part of me that feels bruised and wounded. That part of me feels overwhelmed by everything and would like to curl up in a ball and wallow in self-pity. That is not really an option, though. I have 7 other children who I love no less than Samuel who still have many needs. So we will figure out some sort of middle ground with enough routine and schedule to keep us from wallowing, but filled with enough grace to rest and heal our aching hearts.  I keep praying for God to give us wisdom, strength, and courage to move forward.
In case you were unable to attend the service last week, Barry and I have decided to share here what we stood up and said.  Know that we prayed about and wrestled with what words to say.  

Samuel's Celebration of Life
Thank you.  Thank you all for coming tonight and honoring our son, Samuel.  We are humbled and grateful for the outpouring of love and support we have been given.  There are no words adequate to express our thanks.
 As we began talking about this service, we asked ourselves what it should look like and we didn't know. To be honest, we had never thought about planning a funeral for Samuel. That was never our mindset.
A traditional funeral did not seem right for our sweet boy.  While we are utterly heartbroken, we do not want to focus on just our grief.  There is a bitter-sweetness about this day.  Bitter because we feel such a profound loss of Samuel, but sweet because we know he is not actually lost.  We know exactly where he is.  He is alive with Christ in heaven, living the good life.  And we will see him again.  And that is worth celebrating.
So we decided to have a Celebration of Life for Samuel.  We celebrate the life he HAD with us here and the life he HAS now in heaven.

Samuel was a unique member of our family.  I would always classify him as my content child.  He could easily occupy himself playing with a few simple toys alongside the rest of the family.  No matter what we were doing, he wanted to tag along and be with all of us.
And we loved him tagging along because he was fun.  He liked to be silly and make up his own jokes.  They may not have been the best jokes, but he would laugh and be so amused with himself that you couldn't help but laugh with him.  He so loved to laugh and would often beg to be tickled.
At a young age, we noticed that he liked to build things.  It seemed like he always had Duplos or blocks in his hands and was putting them together.  After Samuel was diagnosed and spending lots of time in the hospital, he was introduced to Lego kits.  It is shocking how many he has put together over the last few years.  His nurses at the hospital are in the habit of asking their patient if they need anything before they leave the room.  Samuel's standard reply was "Legos."  They quickly learned to preface their question with, "Is there anything BESIDES Legos that you need?"
Samuel also had a fascination with floating things in water.  Often I would walk into the bathroom to discover the tub filled with water and bits of interesting pieces of nature (bark, leaves, seed pods) or scraps from around the house as he experimented with what would make a good boat.  This habit continued even in the hospital where he would make boats to float in his sink out of medicine cups, syringes and tape.   His poor art therapist at Riley tried so hard to get him to draw or paint with her.  It wasn't until she brought him popsicle sticks and glue and they began building and engineering boats and other projects together that they connected and ultimately formed a very special bond over the last 3 years.  
We also called Samuel our routined little old man.  As an example, this summer he began getting up with the sunrise at 6 am.  He would get dressed and diligently brush his teeth, then shuffle out to the reading room and curl up on the chair across from me.  I would make him a cup of (dandelion) tea and he would turn on his Bible radio and take a little catnap while his tea cooled.  Then when the rest of the house woke up and joined us he would drink his tea as we began our day.
Even his palette was more like that of a man than a boy.  His favorite foods were sushi and fish.  He was always a bit of a foodie.  He would even watch Food Network at the hospital with me.  He enjoyed planning meals and cooking with me.  
Samuel spent over a third of his life battling leukemia.  Remarkably, he never asked, "why me" or said it was not fair.  When you think about all the really hard things he faced, it is shocking how little he even complained.  Samuel's contented personality definitely helped him in all that he had to face.  His biggest sorrow and struggle through it all was not the harsh treatments he endured, but was being so far away from home and his siblings for so very long.  He handled it with strength and courage.  He learned over time that this did not need to come from within himself, but when he was weak, that God would provide strength and courage to him.  After his first relapse, he began wearing a bracelet that said "courage."  We taught him to remember Joshua 1:9  when he saw it which says, "Have I not commanded you, Be strong and courageous.  Do not be afraid; do not be discouraged.  For the Lord your God goes with you wherever you go."
And God HAS been with Samuel.  We have seen that in so many ways.  

Throughout Samuel's fight against the leukemia, God has brought him through so much.   We have continually seen His mercies.   He has provided healing and protection physically as well as providing peace and comfort emotionally.  And he has grown both Samuel and our family spiritually through this.  
There have been so many times we had asked for some very specific prayers and have seen those prayers answered.  We have been so grateful for Samuel's mighty prayer warriors.  You have carried Samuel and us through so much.  I will never claim to understand how prayer works, but I can certainly attest that it does.  So many of you have prayed right along with us for Samuel's complete and total healing.  And I know there was a trust in God and an expectation of what that healing would look like.  Speaking for us, we were trusting in a miracle until his very last heartbeat.  We did not think this would be how his story would go.  But we now realize the miracle DID happen, just not in the way we had imagined it.  Our son left the pain of this world and was ushered to heaven.  He is completely and totally healed.  He is running and laughing, eating sushi and building boats. Our prayers were answered.
So tonight, we do have reason to celebrate.  We celebrate the 8 1/2 years we HAD with our Samuel here on earth and we celebrate the life that he now HAS in heaven and that one day we will be reunited.
Thank you for celebrating with us.
 Still trusting in His mighty hand,

Journal entry by Trish Richhart

Samuel Allen Richhart, 8, was carried to heaven on Friday, September 29, 2017 after a 3 year battle with a rare and aggressive form of leukemia.
Samuel's story will be carried on by his loving parents, Barry and Patricia Richhart; siblings, Elizabeth, Anna, Patrick, Abigail, Rachel, Micah and Rose; grandparents, Robert and Mary Richhart; and Richard and Patricia Perko; uncle and aunt, Mark and Anjanette Richhart; cousins Max, Simon and Henry Richhart.
Samuel's life was a blessing to all who knew him.  He faced more challenges in his short time on earth than most of us face in a lifetime with great courage and strength of spirit.  He has fought the good fight, finished the race and kept the faith. (2 Tim. 4:7)
Celebrate his life with his family at Fellowship Missionary Church (FMC), 2536 East Tillman Road, Fort Wayne, IN on Thurs, October 12, beginning at 7:00 pm (with Calling before from 5:00-6:30).  Calling times at FMC also on Wed, October 11, from 1:00-4:00 pm and 5:30-8:00 pm.
In lieu of flowers, please consider bringing a new Lego set for us to donate in Samuel's memory to Riley Hospital for Children.
Memorials may be made to Indiana Children's Wish Fund as well as the family to help cover final expenses.

Journal entry by Trish Richhart

This is the hardest update to write.
This afternoon our sweet Samuel was escorted to heaven.  He is truly experiencing the Breath of Life that we have been praying for and has received complete and total healing.
We are so very grateful for his mighty prayer warriors.  You have done a great work.  If you would continue by lifting up our family as we walk through the pain of finishing our earthly walk without him.  We are so looking forward to our reunion in heaven.  But for now, the loss of him feels profound.
Still trusting in His mighty hand,
Barry, Trish, Elizabeth, Anna, Patrick, Abi, Rachel, Micah and Rose.

Journal entry by Trish Richhart

Here I am again writing another update.  First because Samuel has developed another complication, and second because it's somewhat therapeutic and I find comfort knowing that there are others praying for Samuel's specific needs.  
Samuel had a challenging night.  Because his oxygen levels kept slowly dropping, he earned more x-rays of his chest.  He is accumulating air in the cavity surrounding his heart as well as down towards his abdomen.  A lot of doctors have been trying to analyze where it is coming from.   The air in his chest is most likely slowly leaking from his esophagus due the high pressure settings of the ventilator that Samuel has required.  The air that appears below the diaphragm could either be that air from his chest finding a path down there or a separate leak from his gut.  The latter would be very devastating because that would mean he is also leaking fluid and bacteria and he is not stable enough to do surgery to fix that.  It is hard to see clearly on an x-ray which they can do bedside.  It would be clearer on a CT scan, but he is too sick and on too many machines to be transported downstairs for that.  Many doctors have been consulted and the consensus is that this is all related to the air in his chest and not a GI issue.  That is the best news that we could receive in this situatuon.
The plan today is to slowly lower the pressure level of the ventilator.  This has to be an excruciatingly slow process.  Hopefully, Samuel can tolerate this and keep his oxygen levels stable.  
Samuel's other organs, while still very sick, are relatively stable and do not need to be addressed at this time.  Samuel's lungs and oxygen levels continue to be of greatest concern at this time.  
Barry, out of his concern for Samuel, was unable to rest last night.  He kept constant vigil with Samuel and his care team.  I did sneak in a few hours of restless sleep knowing Barry was on watch.  Today, now that rounds have gone through, we have spoken to every doctor, and a plan is in place, I am strongly encouraging Barry to lay down and get some rest while i watch over Samuel.  He is struggling to calm himself enough to be able to do that.
Barry and I respond to all of this differently.  Barry is a problem solver and his mind is always spinning thinking about ways to fix this situation.  While I, too, want more than anything to be able to fix this, I feel helpless and know I just can't.  Even the doctors with all of their knowledge are very limited in their abilities.  I resort to doing the only thing I can.  I have been standing and praying over Samuel and lifting him up to the One who is able to fix this.  I am finding that I am running out of words to pray, that I have used them all up already.  Yet, I still am compelled to continue and lift Samuel up and place  him in God's hands.  
It is noon and Samuel's 24 prayer vigil has begun.  We are so grateful that so many are joining us in praying for him.  I believe Samuel needs a miracle and soon.
  • Complete and total healing for Samuel
  • Samuel's lungs to improve and tolerate lowering the level of pressure the ventilator is putting into his lungs
  • The air leaking into Samuel's body not increase or be a problem
  • Samuel's other organs and functions to remain stable
  • No new complications
  • Peace and patience for Barry and I
  • Protection and care for our family
  • For a family of another little boy from the Stem Cell cell unit who is here in the ICU with us.  Their son, Anthony, is also in need of a miracle.
STILL trusting in His mighty hand,

Journal entry by Trish Richhart

As I have said before, we are on a roller coaster with Samuel.  After a night of making baby steps, we had a day of standing pretty still.  Now we seem to be creeping backwards again.  Samuel's lung health especially is still not good.  His doctors seem unsure of the exact problem and therefore, not confident on how to proceed to help him.  Of course, the lungs are related very closely with the heart.  Everyone is cautious because Samuel's condition is so unstable.  Small changes can cause drastic effects to his health very quickly.  
Barry and I are feeling quite anxious tonight.  We know that God tells us to not be anxious about anything, but instead to pray and petition Him with thanksgiving.  We have been doing the latter, but the anxiety remains. 
The other day I wrote about God giving the Breath of Life.  A couple of people commented to me about a song we sing in church.  The lyrics say, "You're the Breath in our lungs, so we pour out our praise."  Right now Samuel really needs God to be the breath in his lungs.  I have such a great desire in my heart to hear Samuel's own voice pouring out praise to God.
We thank you all for stepping into this with us and pleading with God for our Samuel.  Along with our previous requests, please pray specifically for Samuel's lungs and for God to provide His breath to him.  Pray for his doctors, nurses and caregivers to have wisdom.  Pray for peace and strength for his parents who probably won't be sleeping much tonight.  Thank you!
Still trusting in His mighty hand,

Journal entry by Trish Richhart

As I write this, Samuel is in his fourth day of chemo.  He will have ten days total.  That was a hard thing to consent to do.  The reality of what chemo does is harsh.  However, the reality of what leukemia does is harsh, too.  It would take our little boy's life.  Chemo will be hard on his little body, but the hope is that it will destroy the leukemia leaving him with life.  So far, he is handling it well.  His appetite has diminished, but he is still able to eat and keep it all in his tummy.  He is tired, but has still had the energy to beat his mom at air hockey.  Thank you, God!

After chemo, Samuel will have virtually no white blood cells, red blood cells, or platelets left.  He also won't have the bad leukemia cells either, and that's the goal.  He can be given platelets and red blood cells (hemoglobin), but he will have to make his own white blood cells.  While he has a low white blood cell count, his body will not have the ability to fight off any infection, so he will have to stay in the hospital where he is monitored closely and can be administered an antibiotic quickly should the need arise.  Once his blood count numbers rise to a certain level, he will be able to come home.  This should be anywhere from 21-28 days after the start of chemo.  Then he can be home for 1-2 weeks before the process will probably begin again.

Because of the unique form of leukemia that Samuel has, the full treatment plan is an unknown.  At the end of this first cycle, he will be reevaluated and a decision will be made as to the next step.  So, there is no way to plan ahead.  If God wants to teach us a lesson on relying on him day by day, he sure has found a way to do it!  So, we do not know what the future holds, but we do know the One who holds the future.

Samuel’s Story

Site created on November 4, 2014

“ For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”  Jeremiah 29:11

So, one day life is “normal” and the next day you get a phone call telling you to take your child to the ER for a blood transfusion.  We had no idea how our lives would change on that day.

Our son, Samuel, is five years old.  He the sixth child in a family of seven children.  He is active like most five year olds, so when we noticed a bunch of bruises on him, we didn’t think too much of it.  However, when a tiny sore on his tongue became nasty and infected looking in just a couple of days, I decided to take him to the doctor.  I pointed out the bruising and she thought it would be a good idea to go to the lab and have some blood work done.  

The next day started normal.  I was reading aloud to the kids when I received a phone call from my doctor’s office.  The nurse told me that Samuel had a critically low platelet count and that I should take him immediately to the ER for a blood transfusion. (They were at 2.)

Barry came home from work and we grabbed up Samuel and took him to Lutheran Hospital.  We were told in the ER that Samuel was to be directly admitted.  We bypassed registration and were immediately taken up to Pediatrics.  I had this horrible sense as we were walking in that he would not be leaving the hospital for a long time.

A doctor came in to speak with us.  The rest of Samuel’s blood work revealed that not only were his platelets low, but also his hemoglobin and white blood cell counts.  The doctor suspected leukemia.  My poor son who had never had blood drawn before was subjected to many needle pokes.  There was more testing, an IV, and a transfusion of both platelets and hemoglobin.

The next day, Barry and I were led into a conference room with a group of doctors and nurses while a Child Life Specialist hung out with Samuel in his room.  Both of us knew that this could not be good news.  We were told that tests confirmed that Samuel had leukemia and it was the less common AML type.  This type requires more intense treatment and is done mostly inpatient.  They told us they had scheduled us at Riley Hospital the next morning for a bone marrow draw where they would be able to better pinpoint the type with more detail and come up with a treatment plan.  

At Riley, the leukemia was confirmed, but with further testing it was discovered that he has an even rarer form of leukemia.  There are two types of leukemia most often seen in children.  The most common type is ALL (Acute lymphocytic leukemia), then there is AML (Acute myeloid leukemia).  Samuel has a combination with both,  biphenotypic acute leukemia (BAL).  It is rare in adults and even less common in children.  The odds of getting struck by lightning are higher than getting this.  

You can imagine that Barry and I were reeling from the shock.  This diagnosis and the treatment to fight it greatly affects our family in more ways than I can even count.  However, what is constantly in my mind is that my God is way bigger than leukemia AND He loves this little one even more than we do.  So, if he is putting him and all of us on this path, he has a purpose and He will use it for good.  

“And we know that in all things God works for the good of those who love him” Romans 8:28

We don’t understand, but we can trust Him.  The big picture looks overwhelming, but we can take baby steps and hold the hand of Him who has the strength to walk us through this.

“ I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do all this through him who gives me strength.” Phil. 4:11-13