Life As We Know It

Dr. Browning told us early on that there would be bumps in the road, delays, unexpected circumstances.  Maybe I was being naive when I thought there was a possibility that we would be the exception.  I mean, there are literally hundreds of people praying for Eli.  I am integrating natural compliments to his treatment.  The change in his energy level has been amazing.  Chris and I often catch each other’s eye in amazement when we see Eli running, jumping, skipping, and just being his crazy little self.  No more fever.  He is happy again.  His belligerent demeanor is not the norm anymore.  He doesn’t need to be 100% on my lap or in my arms.  He is laughing again.  He is eating again.  Surely things are working.   We are cautiously optimistic.  And yet, afraid to be too confident.

We did not get the news we were hoping for this week.  I took Eli to his clinic visit on Tuesday and Dr. Browning made a point to tell me first, that she is really pleased with his weight gain.  Up until 2 weeks ago, Eli was losing weight.  He (and all of our kids) normally hover around the 4th percentile for weight.  Our pediatrician watches that but has not been overly concerned since she recognizes Chris & I are not big people.  But the drop in his weight was concerning. The good news is that he is basically back to where he started prior to diagnosis, which is wonderful.

Lab results indicated his counts were low.  He needed another blood transfusion.  This news meant our clinic visit was about to turn into an all-day affair.  We left the house at 8:00 am and would not return until 4:00 pm.  Luckily, my dad swung by the day hospital with lunch since I came totally unprepared for us to stay.  (And once again, THANK YOU to all the generous people who regularly donate blood.  I hear there is a blood shortage in the Milwaukee area.  We are thankful that Eli was able to receive the blood he needs.)

Dr. Browning also delivered the news that Eli’s bone marrow biopsy did not come back clear enough to do the stem cell collection next week.  As she said this, my heart started beating faster.  And my stomach felt mildly nauseous.  It must have shown in my face, because she immediately reassured me that at this time, she is not worried.  This happens.  Every child is different.  Eli really only experienced one round of chemo before his biopsy, and perhaps we were just too early.  His initial biopsy prior to chemo showed 100% bone marrow involvement.  This last biopsy showed 60% involvement.  Improvement.  (Disclaimer – I was taken aback with this news and was not fully able to process all the information she was giving me as we went back and forth between both biopsy reports.  The above statistics are for his right leg.  I didn’t write anything down for his left leg.  I also was confused about some of the acronyms in the report for other things that were tested.  i.e. clusters and other terminology.  So, it is entirely possible that we will follow this up someday and let you know that what I’ve just written is incorrect.)

Through the disappointment, this is the message my brain received that day and the one I am choosing to focus on: THERE HAS BEEN IMPROVEMENT.  CHEMO IS WORKING.

Dr. Browning reiterated what she has told us in previous meetings: the goal of induction chemo is to clear the bone marrow.  So I continue to pray that Eli’s bone marrow will be cleared of cancer before the end of induction chemo and that every cell in Eli’s body is restored to perfect health.

I’m still a little baffled though.  Eli is acting like his old pre-cancer self.  But he still has 60% disease in his bone marrow.  He must have been hurting so very badly prior to this.  And if he acting so normally with still having so much disease in his body, he is an incredibly tough kid. I look at him in awe and can’t believe that I have this incredible privilege and honor of being his mommy.

So…this news changes the plan.  A bump in the road.

The original plan was for Eli to have a stem cell collection on Tuesday, May 31.  In order to prepare for this, he would need to receive daily injections of neupogen (to stimulate white cell growth) for 9-12 days.  Last round, Eli received neulasta, which does the same thing, but is a one-time shot.  Prior to stem cell collection, neupogen (daily injection) is the preferred drug as there is better control the rise in counts, helping predict which day is optimal for stem cell collection.  As Chris has mentioned, “pokes” are truly a major source of anxiety for Eli.  Watching my child receive shots in the stomach is awful in and of itself, but on top of that, it brings me right back to my days of the good ole neulasta shot the day after my A/C (red devil) chemo concoction.  When our home care nurse asked if she could teach me to do the shots, my answer was a flat out “no.”  Luckily, our team of doctors is sensitive to Ei’s anxiety and also my triggers.  The nurse practitioner for the bone marrow collection team suggested we consider placing a small catheter (called insuflon) in the back of Eli’s arm.  She said they could even do it while he was knocked out for the bone marrow biopsy so he wouldn’t even know about the poke.  We thought that sounded like a good plan and went ahead with that.

Our home medical supplier delivered both neulasta and neupogen last week.  This is literally thousands of dollars worth of medication sitting in our refrigerator.  They delivered both since we needed to begin the shots on Monday and we were waiting for the results of the bone marrow biopsy to know which one to start – neupogen to prepare for the collection or neulasta if there would be no collection.  Dr. Browning told us to go ahead and begin with neupogen in hopes that we would be proceeding with the collection.  Our home nurse came out on Monday and taught Chris how to administer the neupogen through the insuflon.  He was a good student and a quick learner.  He gave Eli the neupogen on both Monday and Tuesday.

Once we discovered that the stem cell collection would not be happening next week, Dr. Browning decided to put the neupogen on hold.  She did not see any reason to put Eli through all those shots, especially since we’d have to do it again in a few weeks.  The insuflon was removed (it can only be in for a week at a time.) The home health care nurse returned today and taught Chris how to give Eli the neulasta shot to Eli in the tummy.  One and done.  For now.  He will receive this shot again after rounds 4 & 5.

Now what?  Eli will have his 3rd round of chemo in 11 days.  I have been forewarned by Dr. Browning that the first two rounds he just completed are easier (I believe she actually said “less pukey.”)  So I am already bracing myself for Eli to experience some severe nausea with round 3.  We will be in-patient for 4 days.  They will keep him a 5th day if his stomach is not handling things well.

We go back to the clinic on Tuesday for his weekly lab check and dressing change.  We will also be meeting with the audiology therapist for a baseline hearing screen.  The drugs Eli will receive for the 3rd round are known to cause hearing damage.  Most kids with neuroblastoma have some degree of hearing loss and wear hearing aides.

Sometime during or just after his 3rd round, we will repeat the bone marrow biopsy.  Hopefully the bone marrow is clear enough that we can proceed with the 9-12 days of neupogen injections and then the collection.  To be perfectly honest, I am bummed and annoyed.  It is really hard to keep putting him under sedation (which also means withholding food and liquid) for these procedures.  I’m over it.  It sucks.  Plus, it means they have to continually stick a big huge needle into his hips and pull out some of his bone marrow and also a tiny bit of his bone.  He is sore for a couple days after that.  He hates the band-aides he has after. (Eli might be in the minority as a child who hates band-aides.  Our other kids invented owies just to have band-aides.)

I guess that’s that.  A bump in the road.  I hope the road ahead is smoother.  Could we maybe be the lucky ones with minimal bumps?  Minimal side effects?  Could that be part of the miracle we are praying for?

The word TRUST keeps popping up in my Facebook newsfeed and devotionals.  I am trying hard not to worry about the future.  I am noticing the good things, the positive things, and the improvements in Eli.  I am thanking God a lot.  I am trying hard not to let my imagination run wild with possibilities that I can not bear to think about.  I am praying and breathing deeply and trying my best to live in the moment of each today with gratitude.  But I am human and I fail often.  So, I return over and over to a poem I received from my mom during my cancer treatment that is posted on my fridge.  It has become one of my favorite prayers.

Be at Peace (by Saint Francis de Sales)
Do not look forward in fear
to the changes in life;
rather, look to them with full hope;
that as they arise, God,
Whose very own you are,
will lead you safely through all things;
and when you cannot stand it,
God will carry you in His Arms.
Do not fear what may happen tomorrow;
the same understanding Father
who cares for you today
will take care of you then and every day.
He will either shield you from suffering
or will give you unfailing strength to bear it.
Be at peace, and put aside all
anxious thoughts and imaginations.”

Eli is the main character in this tragedy.  There is no denying that.  But as members of the supporting cast, we each have a part in this story.  Mine is a little unique because I find myself having flashbacks or triggers of anxiety to my own cancer treatment.  And sometimes I’m caught a little off guard as to when that may happen.  I am basically a rollercoaster of emotions.

Children’s Hospital is on the same campus as Froedtert, where I received all of my care, and we drive the same route.  Typically at about 124 & Capitol, a lump forms in my throat and I feel a small bit of panic in my chest.  A flood of lumped-together memories come flooding into mind and a general feeling of dread about going back to “that place”  takes over.  My heart starts beating a little faster and I get a little sick feeling in the pit of my stomach, knowing that Eli is about to go through hard things every time we walk through those doors.

Today on that familiar drive, it was just Eli and me. A few minutes in, I glanced back at him and noticed “the change” in his face.  This happens every single time.  I’ve noticed it from the beginning.  I wonder what he’s thinking, but he never wants to talk.  In the beginning, when we were going for all the scans, I would sit in the back with him and we would just hold hands.  Now I’m the driver and I can’t hold his hand.  He still doesn’t want to talk.  The spark leaves his eyes and his mouth turns downward.  He just looks sad.  Today we had an unexpected conversation.

Eli:  “Mom, did you know that there are things that can make you live longer?”
Me: “Like what?”
Eli: “Well, I saw it on tv.  Like maybe vitamins?  And it makes you live longer.  And not die.  I don’t want to die.”
Me: “I don’t want you to die either, buddy.  Are you feeling sacred about that?”
Eli:  “A little.”
Me:  “Ok.  It’s ok to be scared.  I’m glad you told me.  I want you to remember you have a whole team that is here to help you, right?  And right now, we’re going to get your chemo to help you get better.  Ok?  I will be with you all day.  And we can hold hands.”
Eli: “Ok.”
Me:  “Is there anything else you want to talk about?”
Eli: “Well, maybe I just want to be a bug when I die.”
What????  For the record, he does know that we don’t become bugs when we die and we are actually hoping to get to Heaven.  But, instead we kept it light and started talking about what kinds of bugs we would be if we had the chance.  (He would be a spider.  I would be a butterfly.)  And even though our conversation turned fun and silly, my heart was breaking into a million pieces because my little guy is in a situation where he has started wondering if he is going to live or die.

This is not the first time Eli has brought up death.  A few weeks ago when we were waiting for results before his diagnosis, he and I were reading a book when he casually asked me if all animals die.  When I said yes, he asked if all people die.  I said yes, eventually, all people die.  He matter of factly announced that he didn’t want to die.  I was really taken aback with this conversation (and honestly, a little worried.)  I wondered at the time why he was thinking about death?  It was almost like he knew something was wrong with him before we did.  And then, we had another almost identical conversation after he was diagnosed.  That time we prayed together and told God that he didn’t want to die and to asked God to take care of him.

When I was diagnosed with breast cancer, I was never angry with God.  Yes, I was often angry with what was happening to me and to my family.  But never directed AT God.  I accepted that this was a thing in our life but I had this unexplainable peace in my heart that all would be well.  There were moments when I was afraid, but overall I did not have fear.  It’s very hard to explain, but I just had this peace and an overall positive attitude along with surrender/acceptance.  (I’m not saying that this is why my treatment has so far been successful.  I’ve had too many friends pass away from breast cancer and too many friends have recurrences and I am NOT saying that my feeling or desire to live is or was any greater than theirs.  Cancer is dumb and unpredictable.  I only know that I had this unspoken conversation with God and I have this peaceful feeling in my heart that I will be ok – with whatever is to come.)

Maybe Eli is too little to have the understanding of these kinds of feelings or conversations with God.  So I have them for him.  I tell God that Eli does not want to die and he has an intense desire to complete treatment and restore every single cell in his body to total health.  Eli tells us he wants to be a doctor someday.  Whether he will do that or something else, I tell God that Eli sure could do amazing things in this world.  I pray that God is listening to the desires of Eli’s heart and, if it is God’s will, Eli will be restored to complete health.

Our bug conversation in the car lightened the mood, but once we arrived in the parking structure of the hospital, the quiet moaning and the uncomfortable shifting began.  And so did the questions.
Eli: “So…will there be pokes?”
Me: “No.  No pokes today.”
Eli: “Ok.  So, no pokes.  Only chemo.  And we go home tonight?”
Me: “That’s the plan.”  I now know better than to make promises.  (On the day of the dreaded bloody nose, I told him we were going for just a quick doctor check and not staying over at the hospital.  Well, that was a big oops.  We were there for 2 days.)

We parked the car and Eli rode in the stroller because the walk is too far for his legs, which are still sore on and off.  On the Skywalk between the parking structure and hospital, he loves to pause and look in the window of the pharmacy to see the color of the  “potion” that day.  Today was orange.

I knew he was perking up after the potion, because suddenly he was waving at passers-by.
Me: “That is so nice of you to be friendly.  You are probably making people happy.  Did you see how they are smiling at you?”
Eli: “I like to make people happy.”
Me: “You’re really good at that.”
My heart was happy and swelling with pride at how he can be so brave and strong when I know he is uncertain and scared.

We entered the Day Hospital for chemo and got settled in our room.  He double and triple checked with our nurse that there would be no pokes today.  Once he was satisfied, he began charming the nurses and entertaining them with his silly antics.  More than one person commented today on how they just love his laugh, how funny, and how smart he is.  I wholeheartedly agree.

We spent some time in the play area and were visited by my friend Leah and her daughter Mallory for a while.  Overall, the day was long.  We arrived at 8:30 am. and left at 4:15 pm.  He seemed “done” about 5 hours in.  He refused to nap all afternoon, but was asleep about 2 minutes after we exited the parking structure.

I, too, was exhausted.  It doesn’t sound like a difficult day, but it was just draining.  Dragging an IV pole across the Day Hospital for him to use the bathroom 6 or 7 times, the constant stream of people “popping in to catch us” and discuss some upcoming procedure (which always makes my head spin) or coming in to check in on him.  I have to encourage him to keep eating and drinking enough fluids to keep up his energy and flush out the chemo while also protecting his bladder, on top of interacting and entertaining him for 8 or so hours. I also knew I would arrive home to find 4 more children ready and anxious to have conversations or needing help with something or just wanting a piece of me.

And so, I did a lot of deep breathing on the way home today, trying to relax my aching neck and just calm down whatever anxiety I was holding.  But the tears came anyway.  I’m a rollercoaster, remember?  Maybe it happened because I glanced in the rearview mirror and saw him sleeping.  I just knew his body was exhausted.  My little boy.  So tired.  So brave.  Chemo coursing through his body.  He should have been at the zoo or playing outside or doing something fun today.  And yet, he made the most of what he has been given.  He charmed the nurses, asked all his good questions when people came in to check on him or draw blood or change his fluid/chemo bags, got to try out fun doctor/nurse tools like the lights used to look in eyes and ears (for the record, he said mine are clear.  His nurse, however, found Batman in Eli’s left ear and Robin in his right ear.) I just loved every minute of watching and listening to my little boy be funny and smart and brave.  My heart is so full and I am blessed by every second we spend together.

And yet, my heart aches.  I looked at him sleeping in the back and remembered my own feeling of going home after my treatments.  The odd sensation of chemo running through my body, not feeling “quite right” but dealing with it. Wanting to rest, and yet, desperately not wanting to miss anything.  Wishing things were different and wanting things to work out.  I wonder how he feels and what he thinks.  I wish I could take this all away from him.  I can’t.  I can only hold him, love him, and pray for him.

God, watch over and protect my baby.  Hold him close when he is scared or sad so he can know and feel your great love. I pray that Eli will tolerate his chemo well this week.  I pray for total healing.  If it is your will, may Eli experience complete health in every cell of his body before the end of this treatment.  Let this healing be evident by showing us healthy bone marrow during his biopsy on Friday.  We place our trust in you.  Amen.

Eli’s Godmother, Jessica, designed an awesome t-shirt for Eli’s Super Squad. Comes in both short and long sleeves. Click the following link to order.
https://www.dunnssportinggoods.net/teams/2016-elis-super-squad
Up to three dollars from each shirt will be donated to a childhood cancer related organization, yet to be determined.
For those in the Milwaukee area, there will be a couple pick up days. For anyone not local, we will arrange shipping.

Just wow. “We can do hard things” is the mantra that was running though my head most of this afternoon/evening. Chris & I took Eli to his weekly clinic visit only to find out his counts (platelets and white cells) were basically as low as they can go. He also had a fever. The combination of those two earned us an admittance back to to the Hot Unit (in patient area.)

We were getting settled in, waiting on antibiotics (for the fever – possible infection somewhere?) platelets and blood transfusion. Suddenly…Eli got a nosebleed. Luckily my mom had just stopped by with “stuff” for us as we prepare for a few days back in the hospital. As it turned out, it was so helpful that she was here.

This nosebleed lasted 3 hours. Literally 3 hours. I spent the first 45 or so minutes leaning over the bed applying pressure. Mom on the other side of the bed giving him water whenever he yelled (yes, yelled) for it. Finally we got smart and I climbed into bed with him for a more comfortable position. (Not really. Major cramp in and kink in the neck/back from all the contorting and holding pressure, catching blood, etc. I’m wondering if my chiropractor does house calls?  Or a massage therapist? Lol.)  Finally were able to convince Eli to use hand gestures for water rather than yelling.

The scary part happened when Eli leaned forward and was coughing up literally massive clots of blood. Of course we were alone in the room. Our amazing nurse  (Adam) had stepped out. We called in a panic for help and about 4 people rushed in right away. He was spitting up huge clots all over me, himself, the bed. This happened 5 times total. Although for the final 4 times we were prepared with a bucket and lots of towels. Chris was at Abby’s soccer game unaware of what was going on because my phone was across the room and we were too busy. Mom finally texted him to come over and he walked in during the 4th episode. We were assured that this blood was from the nose bleed and it was running down the back of his throat. Finally he had the reflex to get it out of his system.

Let’s just say it looked like a crime scene in here with the amount of washcloths and towels we went through from both the nose and the blood he was coughing up.

At exactly the 3 hour mark, the ENT arrived. He looked in Eli’s nose and found the source of the bleed – a small cut in the front of his nose.  After explaining to us the options and plans, Eli had a piece of material inserted into the left side of his nose. It was really not fun. None of it. Eli was basically forced to tolerate me pinching his nose for about a total of 15-20 minutes (per the ENT, to apply the right amount of pressure), several doses of Afrin nasal spray (who likes that, much less a 4 year old, especially when it drops down your throat?!?), and having strange and scary looking instruments put up his nose. In typical Eli fashion, he asked lots of questions and had to examine the tools being used.

Eli is exhausted. His fever is calming down thanks to the Tylenol. He has completed the antibiotics, platelets, and transfusion. (I am so grateful to people who donate their blood!  This is Eli’s second transfusion. First was during his stay for chemo. And every time he gets new blood I just say a prayer of thanksgiving that someone was willing to donate blood that my son and others need.)

It’s 9:30 pm and he is sleeping now on daddy’s lap. I am finally going to eat the dinner my mom brought over.

Today was hard.

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.

A HUGE thank you to my dear friend Kelly Kons for spearheading this project, along with input and help from Julie Goyette, Kate Burke, Stacie Payne, and Dana Ostrenga.  We truly appreciate your ideas and work put in to make this happen.

Follow the link below to view the site if you’d like to help with:
*Meals
*”Weekly staples grocery run” (note, we requested these items to be delivered on Mondays.  The items on this list may change, so be sure to check in on Friday before shopping.  Thank you!)
*Weekly treat (We are requesting to NOT have dessert delivered with each meal.  But those who enjoy baking, can sign up to bring something yummy that we can enjoy at some point during the week.)
*Landscaping Help (This will appear on the calendar on Fridays, only because the site made Kelly choose a day.  However, this is flexible based on what needs to be done and the volunteer’s schedule.  My dad, Mike, will be the point-person.  Please contact him for instructions or volunteering.  262-880-4353)
*Ideas for gift cards (If this is more up your alley, some ideas are provided.)
*Our address is provided for anyone who may like to send a card in the mail to Ella, Abby, or Owen.  This affects the entire family and now and again, an unexpected surprise would be fun for them.

Coming in the future:
*Ride requests for kids
*Companion/Care Giver – this person may be asked to play with the kids for an hour so I can take a walk, run an errand, etc.  Or, if one of the kids needs some special attention that week, you may be asked to do something one-on-one with one of the kiddos.  Maybe you’ll be asked to hold a baby while I do something with the older kids.  This job will require flexibility, since what you’ll be doing may be decided upon that day.
*Something else?  We’re not sure yet…still a work in progress as we figure out what we need.

THANK YOU ALL for your generosity in helping our family keep life as smooth as possible in the midst of a lot of chaos.  We are blessed with THE BEST PEOPLE ever!
xoxoxo,
Jamie

Link:  https://my.lotsahelpinghands.com/community/elis-super-squad/home

“Life is not fair.”  I’ve said that phrase to the kids a lot over the years. In response to things like –

• I had to wait until I was 3 1/2 years old to chew gum!
• I always get the hand me downs!
• I don’t want to <insert sibling activity>!

So I guess it’s karma that Jamie and I have to live the words we preach to the kids.

And with these karma lessons, I get to reflect on life and question my faith.  I have come to believe in the following two things about life.

1. The universe is beautifully and frustratingly random. There’s good events and bad events that balance out when you consider  all existence as a whole.
2. There is a God, there was a human form of God that walked on earth. We can communicate with God through our thoughts. We call these prayers; however, I don’t think it needs to be that formal to have our discussions.

Belief #1….  Imagine being an engineer at a  cellphone company. You’ve designed the perfect phone. It’s got all the features you need and new features that the consumers didn’t know they needed. Because it’s perfect, it becomes so popular that people wait in lines for days to pre-order. Therefore you build a gazillion of these. What happens when you mass produce something?  There will be some parts that break earlier than expected. Sometimes you can fix them. Sometimes not. Sometimes it’s easy to fix, and sometimes it’s hard.

You didn’t design it to break. Unfortunately things do break. 

This is how I feel about cancer.  God created our design without flaws; however, the universe still allows for errors to occur.  I mentioned to a co-worker this week that my son has cancer and he was very moved by that.  He started to question God, and that’s when I had to respond that:  God didn’t plan for Eli’s cancer (or Jamie’s).  There’s not necessarily a master plan or reason that they had/have cancer .  I believe that it comes down to the randomness of the universe and our dumb luck.  We’ve won the wrong lottery twice.  I don’t want to play this lottery anymore.

With that said, let’s move to #2…. I believe that we can reach out to God for help in fixing Eli.  Many of you have and are praying.  I can’t begin to describe how tremendously grateful, thankful, elated that we are for your faith.  Keep on… Don’t stop..

But what do we pray for?  For God to miraculously remove the cancer?  That would be great, but at this point, I’m praying that everyone involved in Eli’s care makes the best decisions for Eli. 

For the nurses to be able to make the right observations to lead to the best care.

For the doctors to be open minded in reviewing the data that’s presented to them.

For Jamie and I to logically listen to our instincts (God’s direction) and discuss confidently with the medical staff on how to proceed with Eli’s care.

I believe God gives subtle signs when we ask him for help that we must be able and willing to hear or see.  So if you’re looking for guidance on what to pray for.  This is it.

Update on Eli: He has had chemo twice now.  Three more to go in this round.  There are lots of rounds left.  No signs of major side effects.  He’s in relatively good spirits as long as we keep the pain meds in him.  Fever is still there which hopefully will subside once the chemo starts doing it’s job.  We’re hoping. Especially that this starts soon.

Also, we have a Facebook Page (Eli’s Super Squad) at:

https://www.facebook.com/elis.super.squad/

Eli had his MIBG scan today.  Yesterday we stopped in to the radiology department for his radioactive tracer.  In most cases, neuroblastoma attracts the MIBG tracer.  The scanner detects the radioactivity from the MIBG, therefore allowing you to see where the neuroblastoma cancer cells are.

After speaking with our doctors today, we discovered that Eli’s body is MIBG non-avid.  (You could think of this in terms of being MIBG negative.)  This means that his cancerous cells do not attract the MIBG tracer.  Nothing shows up for him on this particular scan.  This happens in about 10% of neuroblastoma patients.

So…we don’t have a clear picture of what his tumor looks like in proximity to his pancreas. This was to be the deciding factor in whether to start with surgery or chemo.  This means, chemo first.

On Friday morning at 10:30 am, Eli will be in surgery to insert his central line called a Hickman Line.  This will be similar to a port in that it will be accessed for chemo and other procedures he will have along the way.  The difference is that unlike a port, this line is comprised of two tubes and will dangle from his body.  We will be able to tape it and cover it so he can still be active when he’s up to it.  But it means no swimming.  It will have to be covered well for bathing.

After this surgery, we will be admitted to the hospital.  He will recover for a few hours and then chemo begins.  He will receive two different chemo drugs for for five consecutive days.  All of this will take place in the hospital.  Then he will be home for 16 days.  Repeat.  A lot.  I will post more about his schedule and what we will expect from chemo in the coming days.

I am taking big, deep breaths.  Things have gotten very real and I will be honest and admit that I am scared.  I am having all kinds of flashbacks and triggers to my own experience with chemotherapy and I am really, really sad that my baby has to go through this.  But ultimately, we want him healed.  We want him better and back to his old self.

We suspect he is in a lot more pain then he lets on.  He is most comfortable at home, when things are relatively calm.  He was feeling good this afternoon and we thought it would be a good idea to have one last family fun outing before things get ultra crazy.  He picked mini-golf.  He was so happy to be there, but I had to push him in a stroller between holes because it hurts his legs so much to walk, and he only made it 3 holes before announcing he was done.  He was content watching from the stroller the rest of the time.  It breaks my heart, because typically he would be running around causing chaos.  Chris and I would be rolling our eyes and laughing at his crazy antics.  I just want that back.  He picked Culver’s for dinner and didn’t touch his food.  He moaned the whole time and sat on my lap.  Breaks my heart.

The big kids are being so awesome.  They didn’t complain when we hurried them through their golfing or made them wolf down their food so we could get home.  They are really caring kids and they just want their crazy brother back too.

I met with my “committee” last night and we are making progress on a help website.  This will include a variety of things.  If you have indicated you’d like to help, you should be able to find an area that appeals to you.  Chris and I will talk tonight after the kids get to bed to decide what this first hospital stay will look like for us and how we want to handle life at home along with life at the hospital.

Thank you all for your unending support and prayers.  We are extremely grateful to have THE BEST people.  The. Best.

Eli received his iPad today!  We are beyond grateful to a donor who wishes to remain anonymous for this most generous purchase.  This will be so wonderful to bring to the hospital and will get a lot of use.  He is very excited!

And so…we begin.