How This Nightmare Started

Just one month ago, Chris and I brought our fifth baby home.  We were still a little stunned that we actually have five children, but fell in love with Alex immediately and most of our doubts, reservations, and fears were calmed.  We could do this.  We may be a super-sized family compared to many, but we realized that this is the life God wants for us.  And so, we toasted our new adventure with a glass of wine, and a baby bottle, because of course, we were interrupted by the newborn.

Alex was born on March 28.  About 2 weeks before that, Eli started having on and off fevers.  He was a little cranky during this time.  Didn’t want to go to school.  Experienced some headaches – those made him extra cranky.  Like the time he started yelling at me (I mean YELLING) in the middle of Costco because he had a headache and just wanted to go home.  I was thinking it was a weird virus, and every time I got ready to call the doctor, the fever would disappear.

When our pediatrician showed up at the hospital to check on Alex the morning after he was born, I mentioned Eli’s symptoms to her and asked if he should come in.  I was beginning to think he had strep.  My mom took him that day, and as it turned out, he did have strep.  He began amoxicillin on Tues. March 29, and was on antibiotics for 24 hours before we brought the baby home.

My previous experience with kids and strep is that they become “good as new” after about 2 doses.  By Thursday of that week, Eli was still experiencing high fevers and just was “off.”  He was whiny, cranky, tired, would only play for a few minutes and then wanted to just sit on the couch or on my lap.  He really only wanted me.  I was tired, and honestly, a little bit annoyed.  I just had a baby and I was having a hard time juggling.  We went back to the doctor on Friday, because I just felt like something was wrong.  A different doctor in our practice saw us and recommended we wait it out through the weekend, thinking maybe it is just taking longer to kick in for him.

Nothing changed the next week.  Fevers.  Cranky.  Irritable.  Tired.  Not himself.  No energy to play.  Wanted mom all the time.  All. The. Time.  Waking several times per night just moaning.  But he could not tell us what hurt him.

And then he started limping.  Just out of the blue.  So, now I’m thinking this is just weird and something is just wrong.

Thurs.  April 7.  We went back to the doctor.  Our pediatrician spent an entire hour with us, thoroughly examining Eli from head to toe. And could not find the source of his pain.  Urine test was normal and ruled out kidney/bladder infections.  Our doctor was concerned.  Something was wrong.  From that appointment, she sent us over to the other clinic where Eli had blood work and an X-ray of his hips (for the limp).

This was the beginning of the awful scans and tests to come.  Eli does not do well with these kinds of procedures.  He gets very stressed.  Asks over and over “will it hurt?” and “wait, wait, wait…what are you going to do?” and repeat several times.  Let’s just say that he was traumatized by the X-ray and blood draw.  We took a trip to the local toy store for being so brave (Silly Williz in Pewaukee – you have to go!  We love it!) and then back home to rest.

The phone call came that evening.  Our pediatrician was very concerned about what she was seeing from his blood draw.  She had contacted both orthopedics and oncology at Children’s Hospital of Wisconsin.  (Imagine me almost throwing up when I heard the word oncology.)  She quickly assured us that at this point in time, the oncology doctors did not think this looked like leukemia.  She wanted us to go for an ultrasound of his hips, because he could have a possible infection.  The infection would either lead us down a path of immediate surgery or IV antibiotics for several weeks.

Off to Children’s Hospital.  Again – the stressful procedure with lots of questioning and crying.  This time Chris and I were together.  Ultrasound results came in and they were completely normal.

Fri. April 8.  Now he needs an MRI of the legs.   He would be sedated for this procedure due to the length (1.5 hours) and the need to lay completely still.  At this point, we are praying so hard that this is some kind of weird infection and not cancer.  When the MRI was over, two doctors walked into the room.  I almost passed out when I glanced at their name badges and saw “oncology.”  I mean…I really almost passed out.  My heart was beating so fast and I was trying to stay calm and listen to what they were about to tell us.

There was concern about Eli’s bone marrow.  His scans showed inflammation in his bone marrow in his right hip, right femur, and a small amount in his left femur.  They were very careful to tell us that we didn’t know YET if this was cancer.  They were calling it inflammation.  (Chris and I are not naive.  We have been down his road before with cancer and diagnosis. They can’t tell us it’s cancer because it hasn’t been confirmed.  But, it was the cancer doctors sitting there talking to us.  And this just felt all cancery.)  For the next two days, Chris and I were praying so hard.  SO hard.  Let this not be cancer.

Tues, April 12.  Next step – bone marrow biopsy.  We need to confirm what exactly is this inflammation.  Another sedated procedure.  Bone marrow was extracted from some big needle going inside my baby’s hip bones.  I was allowed back to the surgical recovery room to be there when he woke up.  But, either he work up too soon, or they waited too long to get me.  He was awake and hysterical by the time I got back there.  I was trying to calm him down and noticed he was soaking wet.  He had wet himself at some point.  And he was very upset about wearing the hospital pants they wanted to give him.  Since we had to stick around for a while in the day hospital for recovery, my mom ran over to the hospital with new underwear and pants.  (Thank you, Grandma!!!  This calmed Eli down and made him much happier.)  Then we went up to the oncology day hospital for recovery until he was awake enough to go home.

While we were waiting to go home, I threw out my shoulder.  You just can’t make this stuff up.  I mean, why not complicate things more?  Here’s what happened – Eli had to go to the bathroom.  So I picked him up and was trying to get him there quickly so we didn’t have a repeat accident and freak-out.  I forgot that he was still a little loopy and a dead weight from the anesthesia.  I’m not sure which was the cause and which was the effect, but I do know that simultaneously, I dropped Eli and my shoulder popped out of its socket.  So, there is Eli, laying stunned on the bathroom floor and me, doubled over with excruciating pain with my arm dangling at my side, calling for Chris to come help.  I walked back to Eli’s room and our poor nurse had no idea what to do.  I told her this happens to me sometimes, but never this bad.  Usually my arm “sucks itself” back in.  That was not happening.  We get a wheelchair so Chris can get us to the car.  Four times, my arm spasmed, tying to relocate itself, and I am in so much pain.  As we were nearing the exit, Eli grabbed my hand for some reason.  I screamed and guess what – shoulder back in place.  Are you kidding me?!?!  We went straight to the chiropractor.  For the next several days I could not lift Alex.  I was back and forth to the chiropractor for muscle stim and adjustments, all while dealing with whatever is going on with Eli.  Just ridiculous!

Wed.  April 13.  I got a text from our good friend who is a doctor in the oncology group at Children’s and was helping us navigate all of this.  He told us he would call with test results one way or another.  His text message said he would rather meet in person to discuss.  This set off all kinds of red flags and alarms for me.  I was trying so hard to just breathe.  Chris left work early so we could head down to Children’s.  We were waiting and I see our friend approaching our room, accompanied by another doctor – the one who spoke to us after Eli’s MRI.  This is bad.  Very bad.  We last saw this doctor (Dr. Nate) the morning of  the bone marrow biopsy when he explained the whole procedure to us.  The last thing he said to us before leaving the room was “I hope we don’t see each other again.”  And now…here he comes.

They gave us the dreaded news.  It’s cancer.  A very rare childhood cancer called Neuroblastoma.  We talk about all kinds of things that I can’t even remember at this point because I think I was having an out of body experience.  Eli needed more scans so we can understand this better.  I’m crying.  Chris is stunned.  We walked out of Children’s Hospital and drove straight to Abby’s 3rd grade music concert.  What?  Are we really going to a music concert?  Yes.  Because although our world was just turned upside down, life goes on and Abby was excited about her concert and really hoping we would make it in time.  And for 30 minutes at the concert, we put on brave faces, smiled at friends and acquaintances, sat with my mom and our kids, only the two of us knowing that our life is about to change in a HUGE way.  And little Eli was at the concert.  He was feeling well enough to come.  He was sitting next to my mom and every time I looked over at him (which was a lot) my eyes welled up with tears.  Why does this have to happen to my baby boy?  I was just so sad.  And mad.  And frustrated.

Chris and I sat on this news for a couple days.  We were not ready to share with the world yet.  We had to wrap our heads around this. We told our parents, brothers & sisters, and Eli’s godparents, but not our kids.  Not yet.

Fri. April 15.  Chris took off work and we took Eli to the Field Museum in Chicago.  Eli had been asking for a couple months to go see Sue (the T-Rex) and we wanted one fun day with him before his (and our) life was turned upside down.  It was a fabulous day.  There was this underlying sadness, for both Chris and me, just knowing what we knew.  We had to push him around in a stroller because his legs were getting so painful. But Eli made the best of it and was so happy to see all those dinosaurs.

We spoiled him a little too much with a bunch of souvenirs. On the way home, we stopped at a park along Lake Michigan and explained to him why he was going for so many “pictures” (that’s what we called the various scans) and that now the doctors know what is making him feel bad, they know how to help him.  Chris did an amazing job of explaining Eli’s cancer to him.  Eli was sad, especially to find out that he has a lot of doctor appointments and more pictures coming up.  He was quiet.  We sat in silence for a bit and then tried to lighten the mood by talking about our day at the museum.

We told our big kids later that evening.  That was heart-breaking.  We barely finished the word “cancer” and all three were crying.  I was just crushed.  How is it that not even three years have passed since I was diagnosed with breast cancer and now we’re telling them that we’re doing this again?  They each handled it in their own way.  After lots of tears and hugs, eventually Owen went and sat next to Eli (who was watching a movie) on the couch.  Abby started making a book/card for Eli.  She wanted each person in our family to write a message on their designated page.  Ella sat with me the longest and then went to her room to be alone.  She came down eventually and put on a brave face, but she was the one who wanted to be close to Chris or me as she cried herself to sleep and woke up the next morning the same way.

Sat. April 16.  We celebrated Owen’s 7th birthday with our family.  No cancer talk.  This was to celebrate Owen.  I felt like I was having an out of body experience the whole day.  I was so sad to see Eli trying to make the best of the day, but too tired to play with his cousins.

Sun. April 17.  Church on Sunday – I was a basket case.  My baby boy has cancer.  And my good friend Shalin died one year ago on this date.  It was a tear-filled Mass for me.  Chris and I took Eli to see Father Tony, our pastor, earlier in the week to be anointed and to pray.  So I needed to give him the update too.

The next week required two more scans.

Thurs. April 14.  CT scan.  On this day, my mom came with us to the hospital.  Chris and I were meeting with Eli’s two Neuroblastoma doctors (the same two from the MRI day) and then he would be having his scan.  While we met with the doctors, Eli and my mom met the Child Life Specialist, and were able to play (so he didn’t have to sit through our meeting).  No sedation for the CT scan, but he did have to drink a large amount of juice, which had the tracer in it, and that took forever.  They put an IV in, and that again, was a little traumatic for him.  But thanks to some “loopy medicine” called Versed, it wasn’t as bad as it could have been.  He was very brave during the scan.

Tues. April 19.  Injection for MIBG scan.

Wed. April 20.  MIBG scan.  This scan is unique to Neuroblastoma, in that the injected tracer will “cling” to cancerous spots and light them up on the scan so we can detect where there is in the body.  To protect his thyroid from the radioactive material that would be injected in his body, Eli had to have Lugol drops, which is basically a drop of iodine.  He needed to take this 2 days before the scan and 6 days after, for a total of 8 days.  We discovered that he was having a reaction of some kind to the drops, so enter Benadryl (which he hates!)  This did help, and the swelling and redness around his eyes disappeared.  The drops, we are told, taste very bitter.  Since he needed the Benadryl, we added the drop to that medicine.  This made the already bad medicine even worse for him, so we had yet another battle on our hands.

Friday, April 22.    Surgery (another sedation) to place his Hickman Line.  The concept is similar to a port, but he has 2 lines and they are on the outside of his body.  After surgery, we immediately checked in to hotel HOT for the next 5 days.  The HOT unit (Hematology, Oncology, Transplant) is where the inpatient chemo is administered.  At about 8 pm that day, our baby was pumped full of poison designed to save his life.  The hospital stay was rough.  He was in a lot of pain from the surgery for the first few days.  He didn’t like all the tubes hanging out of him.  Any time he got out of bed, we had to drag his IV pole around with us.  By the end of the 3rd day and into the 4th and 5th, he started perking up and we visited the play room a few times.  It was a draining and emotional 5 days.  By this time, I was just wiped out from the blur of doctor visits, tests, scans, information from the previous two weeks.  Oh, and that’s right…on top of all of this, I just had a baby.

Tues. April 26.  Home!

Wed. April 27.  We have to flush his Hickman line everyday.  The nurses at the hospital taught us how to do that.  One of the lines appeared to be clogged.  I called the nurse line and they had us come in so they could check it out and also change his dressing.  They flushed it just fine.  But, changing the dressing was a huge ordeal.  Lots of crying, a little screaming even.  It was hard to watch.  This will have to happen every week for about the next 18(?) months.  I assume at some point he will get used to this.  But, it sucks.  I had my port accessed for 6 weeks when I needed IV antibiotics and let me tell you – the tape itches.  It is awful not being able to shower or swim or get it wet.  And he will have 18 months of this.  And it’s worse for him, because these lines literally hang out of his body and rest on his tummy.

After the clinic visit, he went for a PET scan.  This was his 4th sedated procedure in less than 2 weeks.  But it is the last for a bit.  Scan days have been tough on Eli because he can’t eat.  Those seem to be the days he actually wants to eat.  And lucky us, we always seem to get the afternoon scans, so it turns out to be a very long day.  🙁  This time, we had the same anesthesiologist as we did for the bone marrow aspiration.  He is wonderful and I hope we can have him again the next time we need one.  First, Eli had his tracer injected (a little easier this time as they could use his Hickman Line!  That means, no IV, no pokes!)  Then he sat on my lap and slept for about an hour.  The little guy was just exhausted.  After his hour was up, I carried him back to the scan room and held him while the anesthesiologist started his sedation medication through his Hickman.  He fell asleep in my arms and was then transferred to the bed for the scan.  It took about 20 minutes and we were done.  He woke up easily and we got out of there as quickly as possible.

We’ve been home since.  Home is good.  He doesn’t have much of an appetite, but we are doing our best to keep him eating.  He has had a few small stretches of having some energy and we are trying to encourage him to move around and play, and stopping to rest when he needs it.  We meet with our doctors again on Tuesday to go over results of the PET scan and to talk about upcoming treatment.  A lot of people have been asking, so we’ll share the plan in another post.

We are praying.  A lot.  We’ve been on a rollercoaster and all of us are experiencing a lot of emotions.  We thank you for your prayers.  We know that a LOT of you are praying for us.  This is going to be such a long road.  We’ve barely begun and we are tired.  But we are trying to stay as positive as we can, knowing God has us all wrapped up in his arms.

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16 Responses to How This Nightmare Started

  1. Laurie Polkus says:

    Vince and I pray for you and your family everyday. And you have 60 choir members and their families lifting you in prayer. God bless you and the hands that heal and care for all of you.

  2. Christine says:

    Jamie asnI read this, as traumatizing as it is/was to all of you….I am thankful. Thankful you “knew” something was off, and even though you were exhausted and busy, you took action. Thankful your pediatrician actually listened to you – and spent an hour (we all know how rare this is) trying to figure out the problem. Thankful the doctor sent Eli in for the correct tests. Thankful you have such a wonderful mom and dad who are there for you all. And lastly, thankful you have Chris and he has you – to lean on, to discuss things with, to share with. Sending lots of love and prayers ???

  3. Marilyn K says:

    Jamie, your writing is extremely informative. Thank you. You and Chris will need lots of strength in the coming months and you can find some in your family and friends. Lean on them if you can, they want to help. Sending my prayers also

  4. I still am just baffled by all of this. I love your whole family!!! Praying for Eli and all of you every single day. Thinking of you constantly.

  5. Saw your family at Maggie’s First Communion on Sat.I was so impressed on how the children helped Chris with Alex, the love and strength of your family unit just shines. God Bless you all.

  6. Anonymous says:

    I don’t know you personally but your story makes me ashamed of myself the way I feel sorry for my little issues in life. God bless you and your family and keep that precious little boy wrapped in his arms. I will pray for you all.

  7. Thank you for sharing this with us…you are so eloquent in your writing…we are able to feel some of your anxiety…I think of you and your family all day and pray to St Jude for all….with Eli coming first in the list…you will persevere through this because you belive in God….he will answer our prayers…he has plans for your wonderful family to do great things… Love and healing blessings…and snuggle that wonderful new blessing for me

  8. Anonymous says:

    Wow Jamie, just wow. I had a real ugly cry after that. Texting, calling, stopping by, just doesn’t seem like I have really any idea how this is and I’m sorry. I’m so sorry. It’s really not fair. I will continue to pray, Wilson sung a prayer at bedtime the other night to Eli. I love you guys and will continue to pray, text, call, stop by and ride this roller coaster with you guys. Thank you for sharing your heart. Julie

  9. Cathy says:

    Jamie, I am so shocked to hear this update. I met you at Shalin’s house a few times. She loved you so much. I will be praying like crazy for the best possible results. I have a friend whose 2 year old was diagnosed with this and after a long road he is a perfectly healthy 7 year old now. Doing great. They would be happy to connect with you if you want. Please text me if you want to connect with them. I am amazed by your strength. (414) 534-5600. Cathy.

  10. Karen says:

    Jamie, Your story was well written and informative. I wish I could take this huge burden from you and Chris. I can’t but I can pray. I saw how tired Chris was on Saturday, I’m sure you are too. If you ever need someone over night so you could just sleep…let me know. Your daughters and Owen are so attentive to Alex. It was wonderful to see.

  11. Marie says:

    I don’t know you….someone liked a post a few weeks ago…I started reading and was pulled in to your story. Had a good cry reading this update. When you have a moment to sit, check out the ibackjack website….as well as G9 ….both started by a hartland family who’s son had neuroblastoma. And having spent days and weeks at CHW with a niece with severe kidney issues, I know you are in great hands. Have spent time on the HOT unit…the nurses are awesome and can be some of your best advocates. Prayers will continue…and sending positive vibes.

  12. Colleen Czajka says:

    Sending our prayers, love, and support each and every day.

  13. Ruth B says:

    Jamie, I just wanted to add that you are an incredible writer, thank you for the updates.

  14. Ruth says:

    Praying for everyone. God gives us strength.

  15. Dana Hansen says:

    Hugs to all of you. Wish we were there to give you a real hug, but we will see you soon.

  16. familyjulez says:

    Stay strong Jamie…I love you. I hate this. I love your kiddo’s and Chris too. When you are t strong, I have wine. And he will blow through this treatment, and he will be ok. You all will. I know this. ❤️

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