It all started with symptoms of weakness and not being able to eat,
Next was random bruises and aches and pains in his stomach, legs and feet.
Before I knew it he had a low grade fever and was short of breath,
I took him to the emergency room where they ran a bunch of tests.
The ER doctor said it was just a bladder infection and sent us on our way,
I knew something was wrong and pleaded for us to stay.
The doctor insisted it was nothing more,
I asked for all the test results as they sent us out the door.
We arrived home around three am,
I put Lee to bed and tucked him in.
I looked at the labs results, and I couldn't believe what they showed
His white counts dangerously high with his platelets extremely low.
To me it wasn't an infection of the bladder,
The results of leukemia rather.
I sat and thought surely, I was wrong,
If that was the case the ER doctor wouldn't have just sent us along.
I couldn't sleep as my mind was everywhere,
Waiting for his pediatrician to open so I could take him there.
The pediatrician took one look at Lee and all the test results and knew something wasn't right,
Dr. Anarumo sent us to Golisano's ER where we underwent more tests until the wee hours of the night.
The ER doctor finally came in after all the tests,
And the look on his face said the rest.
The words he spoke next, I already knew,
He said someone from Oncology will be coming to talk to you,
Next came in the oncologist Dr. Kelly,
I held Lee's hand as my heart sunk into my belly.
She said its cancer, leukemia you see,
We're not sure if its T-cell or B-cell but T-cell is the one you'll want it to be.
In the back of my mind I already knew,
But damn hearing it come from the doctor made it true.
I'll never forget the fear in my baby's eyes as he heard the news,
I just held him and promised that this we would get through.
Eventually I told him I needed to use the restroom,
But really, I didn't want him to see me cry so I needed to leave the room.
It was after midnight now,
I needed someone to talk to, so I called my friend Sal.
As soon as I heard him say hello,
I dropped to my knees and out came the words my baby has cancer in a loud bellow.
At the time I didn't think Lee could hear me,
Until I entered back into his room and he hugged me and said momma we will get through this you will see.
From the ER we were admitted to the fifth floor,
I remember seeing the word Oncology as we exited the elevator door.
I was fighting back the tears,
I was consumed with so much fear.
The nurses and techs greeted us with a smile,
While the doctor informed us, we'd be there for a while.
The next day Lee went for his port placement and bone marrow biopsy,
To see which kind of leukemia it was going to be.
The hours dragged by waiting for the test results,
Its as if time came to a brief halt.
I remember asking if there was a chance, they may not be right,
And they said no, its just a matter of which leukemia we are going to fight.
The results were back and it was confirmed my baby had T-cell ALL,
They said with treatment he has a good chance of survival.
That if he reaches remission in the first thirty days,
He has an eighty-five percent chance of a cure they say.
Dr. Kelly looked a me and said the first ten months are going to be the hardest,
Man was she right, Lee had complication right from the start.
From the start it was a rough go,
Lee experience DIC and caused his port site not to close.
Which meant the port had to be removed,
So now Lee has a wound to his chest too.
The first month was so hard on him,
All the body pain and fatigue started to set in.
I felt helpless because I couldn't take it away,
Wishing it was me instead of him every day.
Leukemia tried to win,
But at thirty days Lee was in remission.
A little over a month and a half in,
A complication arose again.
Lee kept having stomach pain and CT scans weren't clear,
Dr. Minkes took his time to review all the scans and because of him Lee is still here.
This time Lee's appendix ruptured and had to be removed,
This meant another surgery they had to do.
I remember thinking my poor baby can't get a break,
Between the pain, nausea, vomiting, and now this how much more can my baby take?
My heart hurt for him in a way I never knew it could,
Once again wishing I could take this from him because I would.
My baby never seemed the same after this, always nauseous and throwing up and he couldn't eat,
He began losing weight and having trouble walking from being to weak.
It was so hard sitting and watching the side effects of chemo take his quality of life,
Yet my little warrior still chose to fight.
He became so malnourished from the nausea and vomiting,
A nasogastric tube for feeds was the next thing.
We were admitted for what was to be a short stay,
To figure out the correct feeds and then send us on our way.
But Lee started to slowly decline,
I kept praying to God that my sweet baby will be fine.
But that wasn't the case, Lee developed a fungal infection in his blood, the chemo depleted his little body,
I kept praying to our God.
We were headed down a dangerous road,
One that was about to kick me into survival mode.
I remember the day Lee deteriorated fast right in front of my eyes,
He was struggling to breathe, and his fevers were staying sky high.
I remember that night Lee looked at me a said "momma I don't want to die here",
Shortly after saying that Lee thought his dad was near.
But that wasn't possible because his dad passed away,
Lee now was confused and couldn't even tell us his birthday.
Nurse Kate came in and took one look at Lee,
She knew he was in trouble and paged Dr. Kelly.
Stat labs were the next step,
On the couch next to Lee's bed my other children slept.
Labs were back and Lee was being rushed to PICU,
I remember waking my other babies up trying to explain Lee was taken to PICU and we had to get up there too.
I remember my sleepy kids shifting in the chairs trying to get comfortable at the end of the PICU hall,
Completely unaware of what was taking place in Lee's room at all.
It seemed like forever that so many people surrounded Lee trying to stabilize him,
Until we were able to be with him again.
The IV antifungal medicine wasn't working like it should,
To fight the fungal infection that started in his blood.
The fungal infection traveled to his organs causing him to have sepsis because it was aggressive,
Lee was given a three to five day window on if he would live.
I wasn't prepared to see my baby on all those machines,
It's a vision that will never be unseen.
I had to prepare his brothers, sister and cousin to see him that way,
Because we weren't sure if he would make it through those three to five days.
I remember the fear and sadness I seen in their eyes,
See roughly two years prior their dad was on the same machines, but he died.
So, I could only imagine what they were thinking,
They were trying so hard to be strong for Lee all the while their hearts were sinking.
I'll never forget the words my fourteen-year-old son spoke "these machines killed my dad",
Trying to explain to him that the machines weren't bad.
That his dad died from a brain injury from his wreck,
And the machines are helping his brother rest.
I remember thinking what if this is the last time, I can hold my baby and feel his heartbeat and warm skin,
Nurse Eileen always made it possible despite all the tubes and lines for me to lay next to him.
That meant more to me than she will ever know,
There are earth angels and she is proof to show.
With every alarm that sounded,
My stomach would ache, and my heart pounded.
Wondering is this when God is going to take my baby home?
Pleading please don't take my baby while feeling so alone.
On the outside I kept a smile,
Also kept calmness and laughter in my voice all the while.
On the inside I was a complete mess,
But I wanted Lee and the other kids not feel or sense my fear but calmness.
I didn't sleep much out of fear something would go wrong,
But there was one nurse I called Nurse Tina that came along.
She worked nights and when she had Lee,
I felt safe enough to sleep even if it was only thirty minutes maybe.
Lee experienced different issues requiring different needs from his breathing and his liver to his heart and a bad GI bleed.
During this difficult time God sent an angel to look over me.
Her name was Courtney and she was the hospital Chaplin you see.
She came by to check on me and Lee every day,
Encouraging me to take a minute to step away.
She would sit with Lee and sing to him and pray so I could step outside,
Once outside all the tears would flow as I talked with God and cried.
I remember when Lee's liver began to show signs of decline, Dr. Ortega and I were weighing treatment pros and cons,
When he looked at me and said, "its going to be a hard fight but as long as Lee fights we will fight, but ultimately God has your son".
I remember telling Lee as tears streamed down my face that if his body was to tired and he couldn't fight anymore that momma would be okay,
That he could go be with God and his dad and that he didn't have to stay.
I stepped outside a little later,
And in that moment to God my son I did surrender.
I prayed and told God I knew he was in control and if he was going to take my son to please do it now and not make him suffer any longer and that I'd be fine,
But if he was going to let me keep my son to please give me a sign.
And in that moment, I looked up to the sky,
And in the clouds was the word HOPE that I seen through my tear stained eyes.
I knew then that God was going to give my baby a miracle, but it wasn't going to be an easy road,
But to let me keep my son is what God had chose.
I remember when Lee's heart was going into different rhythms,
Dr. Monge chose to stay at his bed and sit with him.
He stayed all night there,
Until they were able to get the right medicines and the rhythms began to clear.
Dr. Mansour became my voice and reasoning,
When fear set in and I lost all clear thinking.
I didn't' like to show that I was scared, alone and in need,
But my best friend Bryan could always hear it in my voice and was always there for me.
Lee spent about three weeks in PICU on life support,
I'm forever grateful for Nicole and Carol for taking care of my babies at home and holding down the fort.
They also made several trips to bring the kids to me,
Because I was to afraid to leave Lee's side in case the worse came to be.
The other kids had to adjust quick from having me all the time,
To barely seeing me and relying on friends of mine.
Lee defied all medical odds,
I give credit to Lee's care team, Lee's strength and our all mighty God.
We finally left the PICU and returned to the oncology floor,
It felt good to go back through those doors.
The doors to the oncology floor that once were scary,
Have now become our calm and sanctuary.
Between the PICU stay and the intrathecal chemo, it took a toll on Lee's little body,
My once independent child now must rely on somebody.
The ability to stand or walk was taken away,
But he is determined and works hard every day.
He never once through this whole journey has complained,
Through Lee, many life lessons I have gained.
He has shown me no matter what life throws at you,
How you react is up to you to choose.
You can choose to let it make you bitter,
Or as he chooses you can let it make you better.
Our journey has with no doubt been painful,
But it's also been beautiful.
We have gained so many precious souls in our life,
We get the chance to inspire and touch others through Lee's fight.
I don't know why my baby has had to go through all that he has and is still,
But I truly believe its part of God's will.
Lee is a living testimony of how our God provides miracles you see,
And I am proof that our God provides us with the strength we need.
