Journal entry by Trish Richhart

September is Childhood Cancer Awareness month.  It is also Leukemia Awareness Month.  These are two things that are now very near and dear to me.  While many people know about Breast Cancer Awareness in October as the world is flooded with pink ribbons, very few hear anything about childhood cancer.  Perhaps this lack of awareness about childhood cancer has something to do with the lack of funding for researching cures and treatment for it. The American Cancer Society directs less than 1% toward childhood cancer research.   Less than 4% of government funding for cancer research helps children.  To put that in perspective, prostate cancer alone gets 6% which is more than ALL childhood cancers combined.  That seems wrong.
Childhood cancers are different than adult cancers.  While new protocols and drugs are constantly being developed for adult cancers, there are practically none being developed for children with cancer.  Kids like Samuel pay the price.  He faced harsh chemo drugs, some that were developed in the 60s.  There are literally no tested protocols for the type of leukemia he had.  None.  His doctors had to make educated guesses on what would be the most effective against his leukemia.  Ultimately, it was Samuel's treatment, not the leukemia, that killed him.  
Childhood cancer is on the rise and there needs to be more research into better treatment for our children.  Please help me spread awareness.  If you are looking for a good place to donate funds and be assured that it will actually find it's way to childhood cancer research, you can support Alex's Lemonade Stand, St. Baldricks, or Rally Foundation.  Closer to home, donations may be made to Riley Hospital and designated for research.  Even more importantly, pray.  Pray for for the children and families affected by cancer and pray for cures to be discovered.

Still trusting in His mighty hand,
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Journal entry by Trish Richhart

Photos like this one regularly show up in my Facebook memories and Prime Photo memories.  Today, I looked at this one and it just seemed so surreal.  As I go about my busy day tending to kids and managing the home, just as I have done for much of my adult life, the memory of this moment reminds me that for three years there was a pause to this normal.  It was a time when the mundane became a struggle as everything was put on hold to care for this dear boy with cancer and hold our family together through it.  It almost feels like a dream.  Except the boy is gone and I am left with just these memories.  There is not a day that goes by that Samuel does not come to mind, but I wish I could be telling him to brush his teeth and pick up his mess and all the other motherly things I still do with his siblings.  This morning during our family devotions we were reading about John's Revelation of the end of time in the Jesus Storybook Bible.  It is a time when "God will make all the wrong things come UNtrue." I am anxious for that day when our whole family will once again be reunited and there will be no more death, or sickness, or tears.  Until then, I will put one foot in front if the other and continue to trust in God's good promises.
Still trusting in His mighty hand,
‘He will wipe every tear from their eyes. There will be no more death’ or mourning or crying or pain, for the old order of things has passed away.”
Revelation 21:4 NIV

Journal entry by Trish Richhart

Happy Birthday, Samuel!
Today you would be, should be, 10 years old. Double digits.  Two whole hands.  That's a right of passage.
But you are not.  Instead you are forever 8. 
I see other kids your age and it is easy to imagine you right there with them having fun. I'll let my mind wander and think about who you would be and what you would be doing right now if cancer had never touched our lives.  You would be one of those little boys running and dancing across the stage in the theater group all your siblings are in. I'm sure I'd still be finding your latest boat creation floating in my bathtub. Or would they have outgrown the tub by now? You would probably be in the kitchen beside me learning how to make all your favorite foods. 
But you're not.
And I have to stop myself from these daydreams because they make the Samuel-sized hole in my heart ache all the more. However,  I realize that this ache is my reality, but it's not yours.  You are dancing across a much more glorious stage, living a life that makes my imaginings look pale. Though the selfish part of me would love to wish you back so I could bring you one more birthday breakfast in bed and light 10 candles on your cake, the truth is  I never would even if I could. Your birthday party in heaven is so much grander than anything we could ever do on this side of it. We were blessed to share 8 birthdays with you here.   Eight birthdays were exactly what God planned for you. I have to trust in that and hang on to the hope that one day it won't feel like this.  One day God will wipe every tear from our eyes and my heart will be restored to wholeness.  In the meantime, your family is going to enjoy some sushi in your honor, think of you, and continue to trust in God's mighty hand.
Happy Birthday, my sweet Samuel!

Journal entry by Trish Richhart

I awoke this morning to this beautiful scene.  While it was dark and stormy looking in the distance, the sun was shining golden upon our yard.  This contrast between light and dark actually makes this all the more beautiful.  I  realized that this pretty much sums up my emotions right now as we celebrate Jesus' birth at Christmas.  There is this contrast of emotions within me.  Last night we celebrated our Christmas Adam tradition. (We call December 23rd Christmas Adam because Adam came before Eve.) For probably a dozen or so years we have all slept in the living room around the Christmas tree together on this night as a family.  We haul down mattresses, blankets and pillows from the bedrooms and make our cozy nest all together.  We eat chili cheese fries and watch a Christmas movie.   Then everything goes off but the lights of the tree and we talk before going to sleep.  It's a lovely time of family togetherness.  It's the golden sunshine.  But all evening, I couldnt stop thinking about the one missing.  The dark clouds of grief were there, too.  We were blessed to have 8 Christmas Adam's with Samuel.  Despite long hospital stays, he never had to miss one.  I am grateful, but my heart longs for more.
So there is this contrast of emotions.  There is definitely joy, but it is tainted by grief and longing for one we love and miss.  I recently read this that sums it up well:
"Believing that the real work of the human heart and mind is learning to hold complicated feelings simultaneously. To feel breathless gratitude for our life and loved ones, while also feeling the deep bruise of grief for those who are no longer here. To pause and take in the beauty of warm-white holiday lights, while also holding the ache of loss for whoever and whatever might be missing from our lives." (Lynn Shattuck, "Surviving the Holidays While Grieving")
We don't often think about it, but Christmas, itself, is a picture of contrasts.  The Light of the World left His glory and was born in a dark and dirty stable.  The same God who could orchestrate a census of the entire Roman world to fulfill prophesy and create a star just for the occasion certainly could have made His appearance on earth in much better surroundings.  But He didn't.  He could have certainly healed Samuel from leukemia, too.  But He didn't.   The mind and the heart of God are unfathomable.  I may not understand His ways, but I do feel His love.  Just like He did on that first Christmas night, He enters into our dirty mess.  Because of Him, I have the hope that this grief is just a temporary condition.  That tips the scales and shines just a bit more golden light on things.  
Hoping that as you celebrate this Christmas, the golden light of His love outshines all the dark clouds in your life, too.
Still trusting in His mighty hand,

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Journal entry by Trish Richhart

God has stopped me in my tracks this week and made me take time to for remembering. 
Recently, a friend of ours, K., took the hand of Jesus and went home to heaven.  Her passing has made us reflect upon her life and the impact she has had on us.  She was especially supportive during Samuel's cancer battle.  When Samuel first started chemo, she even chose to shave her head. She herself had experienced hair loss through cancer treatment and shaved her head in solidarity with Samuel.   I know that every time she saw her reflection in the mirror, she probably prayed for him.  She is a person who has taught me much about what it means to be a prayer warrior. Last Sunday was her Celebration of Life service and Monday, the very next day, Facebook Memories brought up her bald image from four years ago.  What timing! It also brought up the image of Samuel from that day.  The effects of  the chemo had kicked in full force.  He had spiked a fever, had a rough night and woke up with his face swollen, throwing up and having diarrhea.  That was also the day that his hair started falling out all at once.  We all know it's just hair, but there is something so disheartening about that.  Samuel was upset about it.  I was sad because it made the leukemia, the chemo, and just how sick he was all the more real. What made K. shave her head on that very day? She had no way of knowing that she had perfectly timed this to provide special encouragement for us.
I'm transported back to that week four years ago.  What a week that was!   It had started really good.  A group of gracious prayer warriors from our church had traveled down to Riley with me.  The "Prayer Posse," as one of my daughters called them, had felt compelled to specifically pray over Samuel.  We were so blessed by this and it had given me such hope.  I felt poised for God to work a miracle and heal Samuel.  But that's not what happened.  Actually, the opposite happened.  Samuel got worse and by the end of the week we learned it was more than the chemo and the leukemia making him sick.  In addition to all that, his appendix had ruptured.  Appendicitis can be very serious in a healthy child and Samuel was not a healthy child.  He literally had no measurable ability to fight any sort of infection.  I wondered if this was a death sentence.
We watched Samuel weaken before our eyes, too sick to eat and feeling miserable.  Much to my dismay, he also became angry at God.  If I'm honest, I did, too.  I could not understand why our prayers lifted in earnest faith were being ignored by God.  I could not understand why my boy had to suffer so.  Thankfully, God is big enough to handle all our frustrations.  For me, my internal railing against Him came to a head on Thanksgiving day.  I knew I should feel thankful, but I was not.  I felt alone in the hospital with my very sick boy while my family was eating their Thanksgiving dinner 140 miles away without us.  But actually, I was not alone.  God was very near and He taught me a lot about trusting Him even when things felt very wrong.
You see, at the time I thought that God wasn't doing what He was supposed to do.  We had prayed and the opposite of what we had prayed for happened.  It felt like God had failed us.  God didn't answer my questions and accusations, but instead made me decide if I was going to trust Him anyway.  Would I trust Him when nothing made sense?  When it came right down to it, I knew I had to.  Where else would I go, if it wasn't to God? I knew He was our only hope.
Thinking about my friend, K., and what she did has made me go back and remember  that hard week.  It is amazing how hindsight brings new clarity.  At that time, I was praying and expecting God to show up in a certain way.  When He did not, I felt disillusioned.  Now my perspective has changed and I can see now what I struggled to see then.  God did indeed show up, just not where I was looking.  He not only showed up in mighty ways, but His timing was perfect.  Samuel's life-threatening appendicitis was not a surprise to God.  He had called the Prayer Posse to action so that we could all pray over Samuel just before it happened.  I can see that he was spared a lot of pain and complications that could have caused.
The Bible tells us that God even numbers the hairs on our head.  He knew exactly when many of Samuel's would jump ship and called on K. to encourage us in a meaningful way at just the right time.  It is amazing to realize that God was continually at work behind the scenes.  
I can now look back on that awful week with gratitude.  I am thankful that God has opened my eyes to see how He showed up and cared for us in those hard, hard circumstances.  It also encourages me as I look forward.  God has shown us how He walks with us through the worst of times.  He is unchanging and I am confident He will continue to walk with us no matter what.  
This year I won't need to spend Thanksgiving separated from my family.  We can be together this year with the exception of our sweet Samuel who has slipped beyond the veil.  He is so missed.  I wish I could hear him again questioning me about every detail of the food prep.  Micah and Rose have taken up his position at the kitchen island asking questions about what we are making, stirring the pots, and begging to lick out the bowls.  I wonder, are there bowls to lick in heaven? If there are, I'm sure Samuel is right there and ready for his. This separation from one that I love so much is hard.  I don't want to celebrate a holiday without him. However, I am thankful for those that I do get to be with.  We can celebrate here in thanksgiving with the knowledge that Samuel is celebrating even better in heaven.
Hoping that all of you reading this can find much to be thankful for, as well.
Still trusting in His mighty hand,

Journal entry by Trish Richhart

Today I have marked on my calendar "D-Day." That term may mean something very different to others, but for us it is "Diagnosis Day."  This date is a dividing line in my life.  Whenever I look at photos or think about recent events in my life, I think in terms of whether they are BC, before cancer, or AD, after diagnosis. This was one of the life-altering, game-changing moments in my story.
Four years ago today, Barry and I were led into a conference room with a doctor and nurses to be told that our son, Samuel, had leukemia.  We were told it was AML (acute myloid leukemia) which was the more aggressive type of the two most common leukemia types.  We sat quietly and listened as we were told in very general terms what treatment would look like.  Samuel could not be treated locally, but would need to be transferred to Riley Hospital in Indianapolis.  He would receive 4-6 inpatient rounds of chemo which would take around 8 months to complete with barely a break to come home.  It was overwhelming.  The idea of my child having cancer was overwhelming.  The logistics of him needing to be away from home for the better part of a year was overwhelming.  How could we do that? There were 6 other children at home, one of which was a nursing baby.  
They asked if we had any questions and we sat in stunned silence for a moment.   Then Barry asked if this hard path was Samuel's only option for treatment which was the question in my mind, as well.  The head nurse in the room looked at him like he was crazy and said "Yes, and if you don't do it, charges WILL be brought against you." She could have slapped us in the face and we would have been less shocked.  Did she think we wouldn't treat him for leukemia?  
What we didn't understand at the time was that there are very definite treatment protocols for many childhood cancers, leukemia in particular.  We also didn't understand that despite living in the land of freedom, as a parent, you do not have the freedom to choose your child's treatment, at least when it comes to cancer.  Doctors choose the treatment based on known protocals.  We get to sign consent forms for harsh chemotherapy whether we agree that it is best for our child or not.  
Interesting enough, after transferring to Riley and having a bone marrow aspiration and spinal tap, we learned that Samuel's leukemia treatment would not be so clear cut.  After this further testing, we discovered that the leukemia that looked like AML from the blood, was actually an even more rare and aggressive type that was a combination of AML and ALL called biphenotypic acute leukemia.  I can remember the doctor that came in to talk to us about this saying the leukemia actually looked about 70% ALL.  We instantly felt hopeful because we had been told that ALL was easier to treat and had better odds for survival.  The doctor looked downcast.  No, it didn't work that way.  Biphenotypic leukemia is much harder to treat than even AML.  It is trickier and even more aggressive.   Because it is so rare (Samuel had higher odds of getting struck by lightning than getting this) there are not tried and true treatment protocols.  The doctors were going to have to consult other doctors from all over the country to figure out the best plan.  The devastated look on the doctor's face said it all.  
Four years ago we entered into a season that, in looking back, I would describe as both brutal and beautiful.  Brutal for obvious reasons.  It was so very crushing to watch my child suffer and wonder if he would even survive.  But it was also beautiful because we saw God step in.  He never left us, but walked by our side carrying us through this hard, hard time.  Some of my sweetest, most intimate moments with my Lord were sitting in Samuel's hospital room as I poured my heart out to Him.   I am not the same woman I was four years ago.  Those encounters with Jesus changed me.  I wish that I did not need to go through the refiner's fire of cancer and death with Samuel to be changed so.  However, I  am grateful that God does not waste suffering.  God can even redeem the worst of circumstances for good.  Thank God for that.
Still trusting in His mighty hand,

Journal entry by Trish Richhart

You have spent a year in heaven with Jesus!  That is actually really exciting.  I can't even wrap my head around that, but it gives me so much comfort that Jesus has rescued you and is keeping you safe with him.  While we know that you are all good, we still are feeling sad because we miss you so very much.  This week has been a hard one filled with really hard memories of your last days on earth.  We never really got to say a proper goodbye.  Our last conversation was me telling you not to be afraid because the doctors were going to put something in your mouth to help you breathe.  I reassured you that it was ok and that I would be right there.  And then you were given something to make you sleep.  It happened so quickly and you were fighting so hard to breathe that you only nodded your response.  If I would have known that was the last time I would see you awake, I think I would have tried to say so much more.  But I do think you could hear us at some level while you lay unconscious in the ICU and we continued to talk to you.  Your dad and I told you how much we love you and how proud we are of you.  We reminded you of God's promises.  I spoke your verse over you:  "Be strong and courageous.  Do not be afraid, do not be discouraged; for the Lord your God goes with you wherever you go." (Joshua 1:9) We prayed over you.  Oh, how we prayed!   I have never prayed like I did over you that week.  Others came and prayed, too.  Still many more prayed for you from afar.  So many were beseeching God for your healing on earth.  But God called you away from us and to Himself.  I don't understand the ways of God, but He has taught me to trust Him.  I can trust that God's ways are best, while still feeling like your physical death was a big mistake.  I am sure I will understand some day.
Losing you was pretty traumatic for all of us.  God had given us such hope and reassurance that despite all you were up against, you would survive.   We were all shocked when you left us.  I suppose God knew what he was doing, because you wanted more than anything to live the life of a normal boy with your family.  You wanted to be treated like you would live, not die.  And you were.
Today, your family is going to spend the day together remembering you.  Although we feel sad, we have decided to celebrate your 1st year in heaven.  So happy birthday, my sweet boy.  Your story lives on.  It is a story of God's gift of a special little boy and God's faithfulness and mercy in his life.  We will continue to remember it and tell it. 
We love you, Samuel, and we are still trusting in God's mighty hand,

Journal entry by Trish Richhart

I have heard it said that remembering is the hard work of grief. When it comes to my sweet Samuel, I want to remember every little detail.  However, those memories often feel like a knife to the heart.  This week is just beginning and the ache is already so deep.  A year ago today was the last time I heard Samuel's sweet voice or looked into his eyes.  I so wish that wasn't my reality.
A year ago today, I rushed Samuel to Riley with a fever. He had gone through a new round of chemo, and it had done the work of killing off cells, both the leukemia cells and the good blood cells.  We knew his ANC was zero and an infection was life threatening, but God had been merciful and given us the gift of hope.  Hope of his healing, hope that his story would continue and be a testimony to the glory of God.  Because of this, we were blindsided by what came next.
Just the evening before, we had a beautiful evening at home.  We had planned on making homemade sushi at Samuel's request.  It had been a busy day, it was getting late, and we had not even started making dinner.  We talked about saving the sushi for another day or just making sushi bowls which would be quicker.  Samuel was agreeable, but I saw the look of disappointment in his eyes and  mustered up the energy to make the sushi as planned. Samuel sat at the counter talking to me while I worked, hoping for mistakes which I gladly shared with him.  He was SO happy.  Then we ALL sat down to dinner together.  Every one of us, including his busy working sisters, was home and we gathered around our table and ate sushi together.  
That was Samuel's last meal.
I know that if he was given the opportunity to pick his last special meal on earth, that is EXACTLY what he would have chosen.  Exactly that.
What a gift that was from God.
I thank God every time I think about that meal.  I thank Him that He gave me the nudge to make that meal despite being tired.  I thank God that He gave me the gift of no regret.
That was the calm before the storm.  Most of you reading this know what came next and I don't have the emotional energy to talk about it right now.  Suffice it to say, we had a very hard week unlike any other.  But God showed up.  He always does.  We may have been taken by surprise, but God was not.
Please pray for Barry and I and the kids as we stumble through this hard week of memories that are so difficult to process.   We need God's sweet comfort. 
Still trusting in His mighty hand,

Journal entry by Trish Richhart

Oh, my heart! One year ago today...this photo (below) is of Samuel's hospital room door at Riley during his last round of chemo.  This round of chemo signified him entering a new season of treatment filled with challenge.  The goal was to bring his leukemia levels low enough to have a second bone marrow transplant.  We knew we were entering into a hard season.  This was Samuel's verse.  This had been Samuel's verse ever since he had relapsed after his first transplant 15 months earlier.  He had been given a Mudlove bracelet that said "courage." We pulled it out and he began wearing it and I taught him this verse, "Be strong and courageous.  Do not be afraid; do not be discouraged, for the Lord your God goes with you wherever you go " (Joshua 1:9) He knew Who gave him courage.  He knew Who gave him strength to face the many hard things he faced.  We claimed this verse.  So I wrote it on his door as a reminder to us and as a testimony to all who passed by or entered his room.
This is also the verse that I  whispered in his ear as he lay unconscious in the ICU just two weeks later, even on the day he was ushered into heaven, the promised land.
Monday, I began a new year of BSF (Bible Study Fellowship), a study I have been a part of with my children for many years.  This year we begin our study with Joshua, chapter 1.  As we approach the first anniversary of Samuel's death and I am remembering the events of his last month with us, I can't escape this verse.  Coincidence? I don't think there are coincidences with God.  The promise remains for us while we, too, are waiting to enter the promise land.

Still trusting in His mighty hand,

Journal entry by Trish Richhart

It has been a couple of months since I have written anything to share about how we are doing as a family.  Nothing big has been happening in this time. Although we continue to homeschool through the summer,  I have been intentional about limiting outside activities so we have a break from running around.  That has been good for my spirit.  Having more time at home has also been good for reestablishing habits and routines that were lost over the last few years as we functioned in survival mode so frequently.
Losing our Samuel created a large hole in my heart.  That hole will be there until the day I am reunited with him in heaven.  However, God is good and has been healing and smoothing some of the shattered edges of that hole.  I am thankful for the comfort He provides when I seek Him.
Barry and I just celebrated our 30th anniversary and were blessed to be able to get away just the two of us for a few days.  We have been saying for many years that we were going to go on our first ever cruise for our 30th, but after the year we have had, that just sounded tiring.  So instead we opted for a more restful vacation in a secluded cabin in the woods in Hocking Hills, Ohio.  We were able to rest and relax without responsibilities of home and family for a few days in the midst of some of God's beautiful creation.  We calculated that it has been about 14 years since the last time just the two of us have had a time away.  It was definitely overdue and we were so grateful to have that respite together.
Yesterday, it was officially 10 months since we kissed Samuel goodbye.  In church yesterday we sang the song, "Great are You, Lord."  I really didn't realize the song we were singing until we got to the chorus:  "It's Your breath in our lungs so we pour out our praise..."  In an instant I was transported back to the PICU at Riley during one of Samuel's last days here.  His lungs had been struggling to keep his oxygen levels up despite the high-powered oscillating ventilator he was on.  I had asked for prayer specifically that God would be his "Breath of Life."  Two people had commented that this brought to mind this very song.  So that evening when Samuel was stable and things were more settled I listened to it again with fresh ears.  It was hard to hear over the noise of that ventilator which is very loud,  but I strained my ears and praised along with the song.  The constant pounding of the ventilator melded into the rhythm of the music and I could feel God's presence in that moment.  It strengthened my trust in Him in that hard situation and gave me great hope.  As I stood in worship yesterday, I could see Samuel on the ventilator and could hear it's pounding sound again so clearly.  I could also remember my pleading prayers to God in that moment.  Oh, it was heart aching!  But then as I stood there in tears, God gently spoke to me assuring me that my prayers had indeed been answered.  Samuel now HAS God's breath of life in his lungs.  He IS pouring out his praise at this very moment.  Oh, thank you, God!  For as much as I want Samuel here with me, I want him even more right where he is perfectly healed with God.  I so look forward to the day when I can join with him in that heavenly praise, but God has made it clear that He still has work for me to do on this side of heaven.  So I will continue to live with the grief of separation.   Thankfully we do not grieve as ones without hope. 

Still trusting in His mighty hand,
Brothers and sisters, we do not want you to be uninformed about those who sleep in death, so that you do not grieve like the rest of mankind, who have no hope. For we believe that Jesus died and rose again, and so we believe that God will bring with Jesus those who have fallen asleep in him.
1 Thessalonians 4:13‭-‬14 NIV

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