Category: Guest Bloggers

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September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Joanna Morealle-Veghts

On July 4, 2011, we received the awful news no parent wants to hear, “Your son has leukemia.”  And not just leukemia, but mixed type leukemia, which is a combination of ALL and AML.  The next day we were meeting our new “team” at Comer Children’s Hospital and learning the new cancer language.  As we spent the next few months dealing with chemo, spinal taps, ports,  fevers,  and anesthesia (Nicholas would always try to bounce around on the table- even though he was out like a light!), our goal was to get rid of the cancer.

In August, 2011, school starts!  We made it to third grade and he had the sweetest teacher in the world.  She would do just about anything for him and us.  Nicholas still didn’t like going to school, but loved his friends and showing off his new bald head!

In November, 2011, I heard the doctor say the word ‘remission’ and I looked at my husband and thought “YES, we did it!  We are in the clear!”  We still have years to go, but no more cancer cells in that little body anymore, YAY!”   We had a quiet Thanksgiving after Nicholas had some words with the doctor to let us go home on Wednesday night.

A week later the fever came…..

What we thought was a normal neutropenia fever turned into so much more.  We headed down to the hospital for labs and prepared for the two day stay and hoped that all the blood work came back clean.  But our journey to the PICU was just beginning ….

I received a call from my husband on night two that Nicholas was coughing and having trouble breathing.  We weren’t sure what to do and we were having trouble getting a straight answer from the doctors because his labs weren’t showing anything unusual.

Nicholas was transferred down to the PICU that night so they could keep a more watchful eye on him and control his breathing.  During that night he was on many different breathing machines, all of which were very uncomfortable for him.  I rushed my daughter off to school the next morning and sped down to the hospital to check on Nicholas as fast as I could.

I walked off the elevator and onto the 4^th floor PICU and was searching for my “Bud!”  I was stopped before I walked into his room and his nurse introduced herself and tried to explain what was going on but I was not prepared in any way for what I was about to see.

Nicholas was attached to a CPAP breathing machine and he seemed to be hallucinating while in and out of sleep.  And these machines were not helping at all, so we were given the news later that afternoon that he would have to be intubated or he might not make it.  All I could think of was, “They are going to put my baby in a coma, on purpose,” and the only thing I could do was stand by and watch.

Nicholas had a very rough first night with the intubation tube.  The docs were in and out of that room all night while I sat and watched and cried from the couch.  I heard from one of the doctors a couple weeks later that she was very surprised he made it through that first night.  This kid was a fighter and we would not give up!

The next couple weeks were a blur.  Nicholas was intubated, but they were trying to decrease some meds to get him to come out of the coma.  Finally, as I was talking to him, I got the hand squeeze that I had been waiting for.  The joy that we felt was short lived.

The next morning, when he should have been moving and waking up more, he was doing even less.  They took him down for an MRI which ended up showing bleeding on the brain.  In order to reduce the bleeding they had to do a surgery which requires your blood counts to be up, but as a cancer patient, his blood counts were down.  The team had to do many infusions very quickly in order to get him to surgery before more damage could be done.

After the surgery, we were thrilled Nicholas made it through, but the scans showed a lot of fluid in the lungs due to the mass quantity of blood they had given to him in a short amount of time.  Now a chest tube had to be put in to release all the fluids that had built up.  We were also dealing with an aspergillous infection and a massive amount of antibiotics.

By now we are in our first month in the PICU.  Our favorite nurses and staff were taking care of Nicholas and sometimes us! They were reducing the sedation drugs and getting ready to work on weaning him off the ventilator, but with every step forward we seemed to take 3 steps back.

The team had tried to wean Nicholas off the vent too fast, which did more damage to his lungs. He was put on a different ventilator, which dod not allow him to be moved, along with more of the sedation.  Back to square one.

The next few weeks were difficult ones, as we had many setbacks.  Finally, in February 2012, we were so happy to see Nicholas open his eyes and spend some time with us.  He was able to be moved and we had the physical therapist coming in and working with him to get those joints moving again!  We knew we were going to have a rough road ahead getting him better and we were exhausted, but ready!

Nicholas was getting feisty again (pinching his nurse as she was trying to give him a bath!), and watching his favorite movie, Cars, over and over, but his stats were not getting any better, and his lungs were not doing their job.  He was not able to get on the lung transplant list due to his leukemia.  We did the best we could to keep him as comfortable as possible and celebrated his ninth  birthday early with our family and friends.  Nicholas even let his sister give him a big hug, although she squeezed him a bit too hard and he mouthed OWWW, but then gave her a smile.

We spent Nicholas’ last few nights talking to him when he couldn’t sleep.  We learned all his favorite things before we had to say goodbye.

On February 28, 2012 Nicholas Robert earned his wings.   I am sure he is always watching over us.

Team Nicholas was formed to honor his memory and keep his giving spirit alive.  We help other families with critically ill children in our community and make monthly donations to the Comer Children’s Hospital Child Life Department.

Please join us on 9/22/13 for the Team Nicholas “I’m Possible” 5k in Joliet.

If you’ve missed any posts in Childhood Cancer Stories:  The September Series, you can find all of them catalogued HERE.  

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.

http://embed.newsinc.com/Single/iframe.html?WID=2&VID=25195296&freewheel=90921&sitesection=chicagotribune&height=281&width=500

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Kimberlee Armstrong

Three and a half years ago, on February 8, 2010, our family was changed forever. Tyler was a typical boy, into typical boy mischief. Suddenly, he began to change. He was tired. He started having stomach aches and hip pain. We thought it was medication his neurologist had put him on for his ADHD, but we were wrong.

Finally, after a long discussion with the neurologist, we decided to take him into our local ER. We checked him in and got ready to wait. After 15 minutes of waiting, his Grandma came in with difficulty breathing. She got put in one room and Ty got put into another (on the other side of the ER of course). My husband was switching between rooms, making sure both his son and mother were taken care of.

We found out that evening that Tyler had some form of leukemia. Our minds were spinning out of control and we were taken by ambulance to the children’s hospital. He was poked, poked, poked. He would cry when any nurses or doctors came in his room. After a few days, he stopped crying. He stopped doing anything. He wouldn’t speak, talk or walk. He was a totally different child. He had Acute Lymphoblastic Leukemia.

Ty’s treatment was set to be about 3 ½ years. The first year was the hardest. He was almost done with treatment, just 4 months to go, and they found leukemic blasts in his central nervous system. Ty officially relapsed on December 3, 2012.

We are in the thick of relapse treatment and it’s hard. So very different than the first time around. I think because we know so much more now. He’s seen so many of his friends die. And sometimes I don’t know if he will make it, but I will do everything I can to give him a special and memorable childhood. I don’t want cancer clogging up all of his childhood memories, so in the face of the unknown, we do, we go, and we see everything we can.

Hang in there, Ty and family.  We are choosing hope and pulling for all of you.  

If you’ve missed any posts in Childhood Cancer Stories:  The September Series, you can find all of them catalogued HERE.  

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.

http://embed.newsinc.com/Single/iframe.html?WID=2&VID=25195296&freewheel=90921&sitesection=chicagotribune&height=281&width=500

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Kelly Green Erlain

“We think she has leukemia.”  Huh?  But, she’s only three months old.  I’m still confused as to why an oncologist is in the ER with us in the first place and now he’s saying my baby has leukemia.  I can’t make it work in my head.  He continues, “Forget everything you know about leukemia.  This isn’t that kind.”  They think she has about a 20-45% chance of survival.

It is late afternoon on a Friday; Halloween, to be exact.  We’re in a children’s hospital and everyone is dressed in costumes.  The festive mood is surreal.  I think I’m crying loudly as we walk to the ultrasound room so they can get more pictures of Reese’s abdomen.  Apparently there are so many leukemia cells in her body that her blood can’t hold them anymore and they are inside her liver and spleen, swelling them to a dangerous size and smashing her other organs.

Nurses are in costumes and they stop to smile at Reese as we go by, until they see our faces. We’re not celebrating anything.

Reese is later taken for a bone marrow biopsy to confirm their suspicions.  We’re told it’s a formality.  There is little chance it’s not cancer.  Her white blood cell count is so high and her hemoglobin is so low, they aren’t even sure she’ll survive through the weekend.  They can’t believe she hasn’t already had a stroke.  We can hear her screams through the door.

Reese spends a few nights in the PICU getting stabilized and starting chemo.  Family flies in to be with us since we are on vacation in Arizona.  We need to get Reese on a medical flight back to Chicago and she has to go in the next two days or we’re going to be stuck there for the next year.  We sign forms saying we understand that the treatments will cause damage to her body and brain, and could also kill her.  This is worse than our worst nightmare.  This is something we couldn’t have even imagined.

We eventually get Reese back home to Chicago.  She is taken directly from the airport tarmac by ambulance to Children’s Memorial Hospital.  Reese continues to get sicker and sicker.  Eventually she is asleep all day and all night and in too much pain to even want to be held.  She doesn’t play with us or smile or coo at us.  She is only four months old and when she opens her eyes they are full of pain.  The doctors try to help us manage that pain and tell us that the chemo is working.

That’s the thing about cancer and chemo; you have to get worse before you can get better.

We entered the hospital on Halloween and didn’t leave until the day after Thanksgiving.  We were so excited to go home, until the reality of being home with such a sick baby hit us.   There were boxes of medical supplies and a home health nurse to help us get everything set up.  She was so overwhelmed, she grabbed her head and said, under her breath, “Oh my God, this is so much medicine.”

For the next eight months, we were in the hospital more than we were home.  We always had a bag packed in case Reese got a fever.   These fevers usually came on in the middle of the night and she had to get to the hospital right away.  The oncology waiting room, inpatient unit and outpatient unit were always full.  We always had to wait for a bed. Always.

How did I not know there were so many kids with cancer?

Part way through treatment, her oncologist suggested to us we should consider a stem cell transplant.  It carries much greater risk than the chemo only protocol, but it would increase her chances of survival to 70%.  It was an agonizing decision because it involved total body irradiation, meaning her developing brain would also receive it.  It felt like we were making a deal with the devil, in a way.  Better chance of survival, but a long list of side effects for her to deal with the rest of her life.  During a particularly difficult meeting, her oncologist said to us, “She has to be alive to deal with those side effects.”   We decided to do it and hoped that one day Reese would understand the decision we made for her.

Reese had her first dose of radiation at ten months old.  She would start screaming as we walked down the hallway.  I had to lay her down on a table.  Two techs would strap her down and we would all leave the room, closing a heavy steel door behind us; a door that protected us from the poison in that room.  We did this eight, gut wrenching times.  I still can’t breathe when I think about her screams coming from that room.  Those screams still give me nightmares.

On May 26^th, Reese got her new stem cells.  A mother donated her son’s cord blood at his delivery and those cells matched Reese perfectly.  Four years later, those cells are in Reese’s body, so far keeping her cancer away.  Those cells were literally the gift of life.

I wish I could say I always knew Reese was going to make it, but I didn’t.  We sat in so many meetings listening to and signing papers acknowledging we understood all the ways the treatment – not just the cancer, but the treatment – could kill her.  And if it didn’t kill her we understood all the ways it could and would damage her.  She was so brave and she fought so hard, but she was a baby.  She was a baby who was getting sicker from the poison that was the only way to make her better.  Reese went through hell to get better and it was horrifying to watch.

Fast forward five years.  This year is a big year for Reese.  We’re going to start seeing more side effects of her treatment.  At the same time, we’re hitting some big milestones.  Reese started kindergarten.  She walked into her classroom with her backpack on and quietly told us she was fine, that we could stop fussing over her.  We left with tears in our eyes.  Not tears of sadness that our girl is growing up.  We left with tears of gratitude that we made it to this day we feared we would never see, silently hoping for many, many more of these first days for her.

If you’ve missed any posts in Childhood Cancer Stories:  The September Series, you can find all of them catalogued HERE.  

If you don’t want to miss a single child’s story, you can subscribe to my blog.  Please and thank you!

Type your email address in the box and click the “create subscription” button. My list is completely spam free, and you can opt out at any time.