Thursday, October 6, 2016

Officer Eddie

This past summer, Eddie went to a few different camps, but his favorite camp was Safety Town - an educational camp led by a kindergarten teacher and two police officers, instructing the children on various home and public safety issues, such as crossing a street, riding a bike, stranger danger, etc.  The campers ride bikes outside on a designated Safety Town playground where they have to follow the traffic signals and use the crosswalks.  The camp culminates with a field trip to the fire station and the police department.  Eddie was so excited to attend this two week camp that he asked me daily throughout the summer, "Is it Safety Town week yet?"  Finally, one Sunday evening in July, I tucked him into bed and told him that yes, tomorrow, was the first day of Safety Town! Whoooohoooo!  Finally!  It was here!  He was so excited that he started asking all sorts of innocent, sweet, yet ridiculous questions.  He wanted to know if he could he wear his police costume.  I said no.  He wanted to bring his handcuffs, his weal (real) handcuffs.  I said no, even though those handcuffs from 'Five and Below', are pretty darn real, with keys and everything.  And lastly, he wanted to know if the police officers were going to let him ride around in the patrol car.  I said, probably not, but who knows, right?  I had to humor him.

Well, it ended up being a total mom fail.   I got his hopes up and got him overly excited and set up for pure, bitter, disappointment. Wouldn't you know that he spiked a fever in the middle of the night?  Yep, a 102 fever.... ugghhhhhh.  I couldn't believe it.  Really? This was not fair!  I even asked Mike, "Can I send him anyway?"  Mike let out a laugh and said, "Absolutely not."  Sweet Eddie was so incredibly disappointed.  He was so mad at me ( of course).  He wanted to meet those police officers so badly, he cried and cried, and his fever persisted for four days.  He pretty much missed the whole first week of camp, and I was so desperate that I actually turned on the TV show Cops, and let him watch a little to cheer him up.  Then I heard him say, "Ewwww look at all of that blood" and I flew across the room and changed the channel. What is wrong with me? What kind of mother am I?

Finally, by the end of the week, he was fever free and ready to arrest people.  The camp was amazing. Eddie loved going every single day.  He learned how to stop, look, and listen when crossing the street.  He suddenly became an adamant seat belt enforcer to all car riders - Mom included.  He told me all about stranger danger and he told me that if anyone, ANYONE ever asks him if he wants to meet a cute puppy then he would say NO and scream for help!  He learned how to dial 911 and subsequently, I had to role play being the police dispatcher and Eddie would have some sort of emergency at the house that required reciting our address to to the dispatcher.  I particularly appreciated the camp's focus on poison control.  Especially because now anytime Mary Elizabeth opens the kitchen cabinet under the sink Eddie yells, "Baby on chemicals!  I repeat baby ON CHEMICALS!"  Who needs safety locks when you have a five year old police officer.

I was not surprised that he was the last child dismissed everyday because he was too busy talking to the officers, talking their ears off I am sure.  Officer Jackie and Officer Jayme came out into the hallway to meet me and I thanked them  for such a wonderful camp and I explained that Eddie was so excited to be here.  I told them that he was a firefighter two years in a row for Halloween but last year, he decided to be a police officer instead.  In no less than two minutes, Eddie blurted out that Mommy let him watch Cops, and that this lady had blood all over her.  Welp,  I was mortified, and tried to laugh it off.  And then he told them that one time, he handcuffed Mommy behind her back and then he lost the keys, and Mommy had to stay handcuffed for a whole hour until Daddy got home from work and helped find the keys to unlock her.  More awkward uneasy laughter from me.  I did not deny this, because yes, it was a true story.  Those darn handcuffs, I bought them.... Again, what is wrong with me?
Eddie had a second fantastic week of camp, and I talked with both officers and the teacher daily, exchanging facts about Eddie, including his retinoblastoma.   They said that they enjoyed having Eddie in the class, and I shared that he was pretty much obsessed with police officers and firefighters, and that this camp was the highlight of his summer without a doubt.  Officer Jayme thought that maybe Eddie could come by the station one day,  and they could let him look inside the patrol car, and maybe even take a spin. What? Seriously?  I thought that would be incredible, that Eddie would be in his glory.   Officer Jayme said he would talk to his captain and figure out some details and get back to me. Well, September 6th became the date, and Officer Jayme said that they were going to have a swearing in ceremony and have Eddie become an honorary police officer.  He said they were going to throw a pizza party for Eddie and he asked would that date work, could we make it?  Ummmmmmmm, yeah!  I quickly called Mike and told him and he couldn't believe it either.  Eddie was going to flip out!

One month ago today, Eddie became an honorary Beachwood Police Officer.  We were running a little late that night (shocker), but after we finally arrived, we were totally and utterly blown away.  I thought we were going to mingle with a few officers, see Eddie recieve his police badge, have a piece of pizza, that's it. We walked into to a room full of uniformed officers, and their families, some who were on duty that day, some who were not on duty that day, with the Mayor of Beachwood, all waiting for us, waiting for Eddie.  There was a huge banner that read "Congratulations Officer Eddie," cupcakes with silver and blue icing setup in the shape of a police badge, pizza, drinks and presents..... it was incredible.  Mike and I were moved to tears.  Like this was legit, for real, the sweetest, nicest thing...... this was like Make-A-Wish.  The Beachwood Police Department went over the top, way above and beyond the usual call of duty.  They made his night - they made his little five year old life!  The look on his face - that smile!  He was so proud of himself.  The Mayor swore in Officer Eddie Johnson, and the captain presented Eddie with a framed plaque that named him as an honorary officer of the police department.  They had a special police badge made for him, a swat team sweatshirt with "Johnson" written on the back, and pillow pal of Chase, the police patrol pup from Paw Patrol, stickers, posters, and more and more and more.  And, yes, Officer Jayme took him for a ride in the patrol car with Mike.  Officer Jayme let him turn on the lights and sirens and everything..  I mean, I don't even know where to begin with our thanks.  We are so grateful for Officer Jayme, Officer Jackie, the Captain, the Mayor, all of the officers, firefighters and EMTs and their families for making this truly a night he will always remember.



Tuesday, September 13, 2016

New Beginnings

Since March 25th when we realized Eddie's retinoblastoma showed new growth , Eddie has had 4 more eye exams.  After seeing that the thermotherapy (heating) did not work to shrink the tumor in his left eye, Dr. Singh switched to cryotherapy (freezing) of the tumor.  Thankfully, the April cryotherapy worked. The tumor did not actually shrink, but it did not grow.  As of right now, as evidenced by the most recent eye exam in August, the tumor has not grown anymore and is remaining the same size.  This is good news, and so Dr. Singh is not doing any more laser eye therapy at this time, but instead monitoring the tumors by monthly eye exams. Years ago, kids with retinoblastoma would most likely have the eye removed to rid the body of the cancer, but now a days, the goals include to save the actual eye while attacking the cancer with various chemo reduction methods.  We are happy that the tumor has remained the same (of course we wish it was not there in the first place) but a stable tumor means full steam ahead for Kindergarten!

Eddie first went to Kindergarten on Mary Elizabeth's birthday, August 24th.  We had quite an emotional day, brought on by the lack of sleep provided by Mary Elizabeth (remember when I said she was an angel baby? I lied). We went out to dinner that night to Dewey's, our favorite pizza shop, and celebrated!
 MMMMMMmmmmmmmm cupcakes!  This girl!  What a blessing you are and what a blessing you have been to this family.  
 I love this picture. We are not all looking, and we are not all smiling, but Mom and Dad got through the day without any tears.  Such milestones! 8/24/2016
 My incredible boy, oh how proud of you we are.  We are so thankful for you, everyday! As he walking into school that day I was holding his hand and he looked up at me and said, "Mom, I am really going to miss you a whole bunch." I wanted to scoop him up and run away back to the the house with him, and keep him forever, but before I could even answer he said the cutest thing ever as he said, "Squeeze my hand if you are going to miss me too." Well, I nearly broke his little hand, his sweet little hand.
There were many days in the NICU when we wondered if we would get to keep you, if we would ever be able to take you home, and now you are off to school! I can't believe it, all of our days at home together, all of our days in the hospital together, has brought us here.  Go get 'em!  Listen, behave, be patient, and be kind.  Have fun LEARNING! You deserve it buddy!

We have had quite a few weeks.  Mary Elizabeth has been absolutely nuts and has been up 3-4 times a night the whole first 2 weeks of Kindergarten, so no one in our house has slept, but finally, up popped her first tooth.  She is hilarious, and feisty, and most times oh so sweet.  She LOVES her big brother and she definitely misses him during the day (just like me). And so we are both are eager to pick him up at dismissal.  She is walking and starting to climb the stairs.  Baby proofing is in full effect here. She had her 1 year well check and she weighed 17 lbs 15 oz putting her in the 20th percentile for weight and she measured 27.5 inches long, putting her in the 5 percentile for length.  She will eat pretty much anything and especially likes to eat strawberries, blueberries, and meatballs.  Yes, Trader Joe's italian meatballs are her favorite. She is entering this stage where she finds herself doing funny things, and laughs at herself and looks to us for attention. Sounds like Eddie.  The two of them together is definitely double trouble.

Eddie is loving Kindergarten.  I feel that he is proud of himself and he walks into school every morning without any problem.  He says some pretty hilarious stuff about school, but I honestly can't remember it all.  I asked him what was the best part of his school day and he said, "Coming home to you Mom!"  No joke, not a lie, he melted my heart!  Sometimes I feel like I am nothing but 'mean Mommy' because I am always correcting him and I am the disciplinarian while Michael is working, but I know he loves me. He comes home with most of his lunch box still full with food.  I am pretty sure he is using his eating time by chatting up whoever the heck is next to him.  The past few weeks have been a complete blur.  He is happy, I am happy, Mary Elizabeth is happy, and Michael is happy.  Right now, at this moment, life is good.  We are enjoying this busy time, but we are falling into bed every single night totally exhausted.  We appreciate everyone's continual prayers and we appreciate everyone checking in on us.  All. Is Well.  If I don't respond to a text, email, phone call right away, please excuse me , we are desperately trying to get organized again.  This is our new beginning. 

* Eddie's next MRI/eye exam will be in the mid/end of October.  We are still working out the exact date, but until then......

Shhhhhhhhhhhhhhhhhhhh Mary Elizabeth is actually sleeping...............


Sunday, April 24, 2016

My Biggest Fear

This past summer, while waddling around 35 weeks pregnant in the baby pool, I chatted with a dear friend of mine.  Well, we kind of had a conversation while she chased her little one and I scolded Eddie for splashing...She asked me if I was ready to be a mom of two kids.  I told her that I honestly was ready, except for one deep fear inside of me.  I was worried and had a terrible fear that I would have this baby (who is now Mary Elizabeth) and that Eddie's cancer would come back.  I was so worried, like couldn't sleep at night if I let my mind go there or had that sick to your stomach feeling whenever I thought about it. I told her that I was so scared of this only because I thought if I had a baby to take care of, how could I possibly "fight" it, or devote 100% of myself to this like I had in the past?  I broke down in tears, sitting on the edge of the baby pool, telling her about my biggest fear.

And alas.... it is here. We have sweet 8 month old Mary Elizabeth, and 5 year old Edward Michael, and his cancer has come back.  He had a "routine" 6 month MRI and eye exam a month ago.  We received devastating news that the tumor in his left eye starting growing again, and had grown 2 mm in the last 6 months.  The news was particularly devastating because, at his age of 5 years, he is almost "out of the woods" per se, because retinoblastoma usually stops developing erratically around the age of 5 1/2 to age 6.  The night before the MRI, Michael asked me if I was nervous.  I quickly said no.  I asked him the same question and he gave me the same answer.  We naively thought we were through with this dumb cancer, it was almost out of our minds, a thing of the past.  We were more nervous about Eddie's emotional state about going under anesthesia again, because he HATES it.  He cries, he begs, he screams, he kicks, he punches, he stomps his feet, he cries, he begs, and it goes on.  We learned a month ago that you can never really trust that dumb cancer.  Stable, stable, and stable.  For 3 and a half years, that dumb cancer has been stable.  And then in the past 6 months, while we have been having the best, most enjoyable, joyous, celebratory, time of our lives, this dumb cancer has been secretly growing....  

I am so mad, so angry, so annoyed, so flipping pissed off that this shit was growing inside of him as we were making memories, precious memories, as a family of four  He loves her, he really loves her. He wants to hold her everyday, he wants to kiss her goodbye and rub her on the head before he goes to school.  And sweet Mary Elizabeth, she adores him.  She looks for him, she laughs at him, she has a twinkle in her eye when he is around. Bath time is twice as fun, meals are twice as fun, errands (dare I say it?) are twice as fun because I am constantly hearing giggles and more giggles.  They love each other.

I am just so mad that this tumor might have been growing on Christmas morning while he was opening his presents from Santa and shrieking with excitement over every stupid thing he opened.  I am angry that this tumor was probably growing while he celebrated his 5th birthday with a soccer party with all of his buddies from nursery school. I am annoyed that while we were finally taking an elective trip, and elective vacation, our first vacation as a family of four to Denver to visit friends, this tumor was growing, as he was learning how to ski, on those beautiful mountains. Oh those beautiful mountains, old friends, new babies, kids playing, group dinners, late night conversations... Our life was.... starting to feel... normal, or well, better than that... it was starting to feel, amazing... and I just keep thinking to myself... the tumor was growing.

I hate you cancer, for making my Eddie Spaghetti so scared.  I hate you cancer for imposing yourself on our new blissful life.  I hate you cancer, because you are sneaky, and stupid, and poisonous and pathetic.  I hate you cancer, I really do.  

And yet, I decided, I am not angry at God.  Not at all, not in the least.  Because timing is everything, and God allowed this timing I think.... God gave us 3 and a half years of clinical stability.  He gave us 3 and a half years of Edward, sweet Edward.  And he gave us 3 and a half years to heal....And he gave us just enough time to be brave enough to try to have another baby.  And I am so grateful, and so thankful to God, for Mary Elizabeth.  I know all parents think their child is the best, but seriously she is the cutest, the sweetest, the most cuddly dreamboat of a baby you could ever imagine.  She eats well and she sleeps well (up until last week, but oh well, just bring on the craziness).  We thank God for sweet Mary Elizabeth and the joy she has brought to all of us, even Eddie who said he didn't want any babies in this house.  He loves her, he truly loves her.  I couldn't have asked for a better pair.  She is 8 months old today and he is 5 and yet they are 2 peas in a pod. Double trouble. 

And so Eddie went under anesthesia again this past  Friday and the the tumor did not respond to the thermotherapy last month.  In other words, it did not shrink.  It also did not grow.  Not good news but not terrible news.  Dr. Singh decided to switch from thermotherapy to cryotherapy.  Thermo is heating the tumor and cryo is freezing the tumor.  And so he performed cryotherapy on Friday.  Eddie was in pain the last couple of days and his eye was swollen.  We have to put antibiotic ointment on his left eye every 4 hours and he just about freaks out and runs away when we say it is ointment time.  We bribed him with quarters, and I may or may not have had gone to ToysRus and bought 50 bucks of Ninja Turtles crap to keep him busy.  We have to wait 4 more weeks to see if it worked or not.  They will either continue with another cryo treatment or make moves to use a radiation plaque.   

So until then, we wait.  And until then, I will try to keep my mind in check and I will try to stay as busy as possible.  I have to stay busy, otherwise I will go crazy.  And how am I supposed to discipline this sweet boy when I look into his beautiful blue cancer filled eyes.... You tell me that.... How???

I try to pray.  I really do.  I don't know what is wrong with me, but I can't pray.  I don't know why but every time I think about Eddie and I try to pray, my mind goes blank, like I am numb.  I just can't even think of what to say.  I don't even know how to start. Please God, or thank you God?  I don't know.... I HATE asking for prayers, because I feel like that is all I have done in the past 5 years.  All I say is please pray for us.  Blah, blah blah....  I WANT TO BE ABLE TO PRAY.  why can't I pray?  Why won't the words come out?  Why does my mind go blank?

Eddie prayed for himself the other night.  He prayed for his 'old eye'.... This boy, it's too much.... it's just too much, and yet... in the cancer world... We are the lucky ones.....

Wednesday, October 28, 2015

Our Best News Yet...

Eddie had his 6 month MRI and eye exam on September 25th and everything looked great! The tumors in both eyes are stable, no change. Next eye exam/MRI in March.

Mary Elizabeth had 2 eye exams and both appeared normal but more importantly we received her genetic test results back last week and she does NOT show the same gene mutation that her brother has that causes retinoblastoma. What. a. huge. relief.  No more eye exams for her.

There are many more details and I would write more but I am typing with one hand! Life with 2 is constantly busy but we are doing well. Mary Elizabeth is 2 months old and over 8 lbs now.  Eddie is loving his baby sister, especially when she farts or burps, which honestly happens all day long.

We are blessed to have Eddie's retinoblastoma under control and we are blessed to hear that his sister won't have to go through what he had to go through.  We were prepared for and expected a 2nd NICU baby but we were not prepared to have another cancer baby.  We were saddened to hear of another little boy who lost his life to retinoblastoma at St. Jude's this past week.  So as we share our great news, we also share our condolences to the Helms family.

Monday, September 7, 2015

Mary Elizabeth Corinne Johnson

After a lot of convincing from my husband, a leap of faith, a cerclage at 13 weeks, bi-weekly OB appointments, 20 weekly progesterone shots, 6 ultrasounds, and a summer full of excitement, trepidation, and many, many prayers, she is here!

Michael and I welcomed this sweet girl on Monday morning, August 24th,  at 10:38 am.  She weighed 4 lbs 8 oz and was 17 inches long (a new record in our family)!  Tears of joy and relief were shared between Michael and I as we heard, for the first time, sweet newborn baby cries.  Mary Elizabeth is named after our two amazing grandmothers.  We couldn't just call her Mary and we couldn't just call her Elizabeth, so together for one very long first name, we have Mary Elizabeth.  It's a lot of letters and syllables, but we love it!

Mary Elizabeth initially did very well with great APGAR scores out of the gate.  However, her breathing was a little labored and she had a fair amount of secretions in her upper airway.  Upon closer assessment by the newborn nursery staff, her oxygen saturations were lower than they should have been.  None of this was all that unexpected given that she went a few weeks early and was so small.  My c-section was scheduled this time and I was 36 weeks 2 days along.  Because of the type of c-section I had with Eddie (a classical c-section) the OB did not want me to go any longer for fear of the old scar rupturing and causing a terribly dangerous situation for both me and the baby.  We were hoping she might be able to swing it in the outside world, but we were not at all surprised when they eventually decided to send her to the NICU for respiratory support.  

She spent the first 2-3 days getting oxygen via nasal cannula to help her breathe.  Given her (mild) respiratory distress and prematurity, she was initially unable to feed by mouth, necessitating the start of intravenous fluids.  This allowed the NICU team to give her some form of nutrition and keep her blood sugar up.  However, IV fluids unfortunately require starting an IV which is no small task in such a small baby!  They also put a tube from her mouth into the stomach to eventually start oral feeds.

Over her first 72 hours, they were able to wean both the oxygen and the IV fluids.  They also converted her orogastric tube (mouth to stomach) to a nasogastric tube (nose to stomach), which is more comfortable and allows her to take a bottle a little better.  We then were working to transition her from taking feeds every three hours from the NG tube to taking the feeds by mouth.  Eating by mouth - a skill seemingly so simple and so fundamental - is thrown off even by a few weeks of prematurity and compounded by any element of respiratory failure.  The next step was to completely transition her from NG feeds to oral feeds.  This process is capricious, as we already knew with our previous experience with Edward in the NICU.  We didn't know if it would take 3 days for her to catch on and learn how to suck, swallow, and breathe simultaneously, or 3 more weeks.   After a consult and a lesson front the NICU speech pathologist, we were reminded of how to feed her in the side lying position and how to pace her as she breathes during a bottle.

Last week Dr. Marcotty, one of Eddie's eye doctors here in Cleveland stopped by the NICU to examine Mary Elizabeth's eyes.  Her eye exam was normal and did not show any evidence of retinoblastoma at this time!  Mike and I, again shared some tears of joy and relief, as Dr. Marcotty gave us his report and asked me to sit down because he didn't want me to pass out.  We have been anxiously awaiting that initial eye exam.  Dr. Singh, Eddie's ocular oncologist, will check her eyes again in two months.  In the meantime we will soon have an appointment with genetics to have her blood tested for the RB mutation.  We are hoping she will not show the same gene mutation and we can cancel future eye exams.

After 10 days in the NICU we were given the go ahead to take her home!  After losing a few ounces and slowly gaining it back, we welcomed her home Thursday at 4 lbs 6 oz.  We took her for her first weight check and she is now 4 lbs 11 ounces!  She is a teeny tiny little thing and is as cute as a button! Our first night as a family of four under one roof was, uh, well, not exactly full of sleep.  Except for Eddie, that is!  He slept all night a mist Mary Elizabeth's cries, diaper changes, outfit changes, and feedings!  Someone loves to be up all night and sleep all day.  But we are thrilled and so proud of Eddie during this time.  After all of his feet stomping, arm crossing, "I don't want any babies in this house" talk, he has absolutely taken to her and loves her to death.  He painted her a picture that we hung in the NICU and when he was first allowed to go to the hospital to see her he ran down the hallway of the NICU saying, "I gotta see THAT baby!"  This is definitely an adjustment period for all of us, and I know it will come with ups and downs with Eddie, but as of right now, he has pleasantly surprised us all.


Wednesday, July 22, 2015

Team Eddie Spaghetti

Eddie did a great job kickstarting the 23rd annual Walk-For-Wishes at the Cleveland Zoo.  This past Saturday we were surrounded by family and friends to complete the 1 mile walk as team "Eddie Spaghetti."  We surpassed our fundraising goal and were able to raise $3,775 so that other kids in the area can have their wishes granted.  Our team had 37 walkers, both young and old!  We appreciate everyone who donated online to our team goal and we also appreciate everyone who travelled near and far to join us on the walk (and for waking up really early and joining us on a Saturday morning!).  It was so nice to celebrate Eddie and to finally be able to say thank you to Make-A-Wish by giving back to this awesome organization.  Eddie's trip to Disney World was incredible and it truly did help heal all three of our hearts after a rough couple of years.  We enjoyed seeing everyone in their blue "Eddie shirt" to help raise awareness for retinoblastoma too.  What a day and what weekend for the Johnson's!