Born with a Cape

(May 7, 2012) As I was walking down a hallway that leads in front of the procedure rooms (where most children have their spinal taps completed under anesthesia), heading back from the cafeteria getting some drinks for Nicholas and I, I passed an older gentleman with a hankerchief held to his eyes as he was being consoled by what looked like a man about my age – most likey his son.  I could tell that the older man was trying to pull himself together, and as I passed, he said, “I am sorry, but it is so hard for me to see her like that.”  The son gave him a hug and said, “I know, it doesn’t get any easier … “

I feel that five-second interaction between myself and these two strangers summed up the majority of our emotional experiences since Nicholas was diagnosed … “It doesn’t get any easier … “ It truly doesn’t get any easier – not even after watching my son being put under anethesia over 40 times, not even after watching him get his port accessed over 100 times, or even to watch him run after other children while playing and see how his legs and feet still bother him to this day.  That is the underlying theme of our lives, the underlying theme for any parent having to sit back and watch their superheroes endure and endure and endure.  Even with his blood draw this morning, while I was holding his legs still as he was kicking and crying because the nurse had to stick his arm twice and dig that needle around to find the vein, I was being strong with him and telling him to “Breathe!” and “Stop Kicking!” and “Chill Out!” … but, my heart was breaking to watch him struggle and continue to endure …. it doesn’t get any easier, even after the years that have passed since that nightmarish day back on August 12, 2009 … 2 years, 8 months, and 25 days to be exact  …. Deep breath in and out …

But, I can say that our time with all of that is coming to an end (or at least spreading further and further out), and for that I am beyond words … it is amazing that we spent 8 solid weeks down here in Memphis when Nicholas was first diagnosed, and then the constant trips back and forth when he was enduring Continuation and then fighting like a trooper through the Reinductions.  And, then he soared into Maintenance, 120 long weeks that now seem like they went by in a flash.  Honestly, when people would talk about our last treatment being in March of 2012, I would try not to dwell on that as it seemed like a lifetime away, but we are finally here – amazingly enough.  And, now he is getting his port removed – kind of that final step of the end of therapy.

How do I feel about Nicholas being done?  I could say that I am estatic, overjoyed, and amazed beyond belief, and I can say all of those things because they are true and honest emotions being felt deep down in my heart.  But, I could also add terrified, anxious, and unbelieving to that list.  It is an interesting mix of emotions during a time that should be filled with only positives, right?  But, any parent in my shoes would be lying if the negatives were not there as well, because it is just a part of being human.  I can say that those negative emotions were much more prevalent about 6 months ago when the doctors first started talking about the end of therapy – it is just not something you try and let yourself think about as you are walking daily through this journey.  And then you are suddently starting to plan NOT being at clinic every week to see the docs, NOT getting blood checks every week, NOT have chemo coursing through their body to fight that damned cancer.  But, as we neared March, my mind started to settle, and I can proudly say that I have been able to focus on the positives much more than the negatives since then, especially living through “The End” of therapy.  It is a pretty amazing rollercoaster, for sure.

Of course, Doug and I also got to focus on throwing a party – a true celebration of Nicholas’ journey from diagnosis to remission, fully on his way to complete cure!  And, that helped to keep us focused on the positives.  Honestly, we did not put a lot of time into the planning, although I have to admit that it all came together so well, and we all had a WONDERFUL time this past Saturday night just getting our friends and family together in one place to just have fun.  So many people, both friends and family, have supported us so heavily and strongly over the past 2-1/2 years, and this was our chance to just say thank you by serving them food and drinks and having a good time. There was lots of laughter and lots of children running around, with the best weather we could have asked for, and a great location to allow us all to enjoy it!  Thrown in the mix were some nice raffle items, some larger silent auction items that really caught the attention of some firemen J, the Zoo Lady, and a few Star Wars characters walking around in full costume … and over $6400 raised for the St. Jude Children’s Research Hospital! I have to give kudos to a single family-owned business that gave me a check for $3K, Denney’s Jewelers out of Springfield where my dad works.  They gave a portion of their Holiday gift card sales, and we are so thankful that they thoughtfully chose the organization that saved our young son’s life!  I brought the checks with me on this trip to Memphis, and I am in communication with ALSAC (the fundraising arm of St. Jude) to get a memorial stone (displayed on the walkway in front of the hospital) and/or a plaque (displayed inside) completed in Nicholas’ honor – I love the thought of leaving a true reminder of our long journey.

(May 8, 2012) Well, it is now 8:09 am the morning of Nicholas’ port removal surgery, and I have to say that I am going to contradict what I have already written in this post by stating that this sedation went very smoothly and easily, without a lot of emotional torment on my end … this one was easier, for sure.  Yes, Nicholas stated a few times that he was nervous and scared, and instead of me saying that all was going to be OK and there was not any reason to be scared, I simply told him that it was totally OK to have those feelings – I would be feeling the exact same way.  But, the mood was light all morning, even with having to get up and be here by 6:30am, and as always, the docs and nurses are phenomenal.  He has not had the happy gas to put him to sleep for surgery (it is usually a push of the “milky way” while I have to watch his eyes start to twitch back and forth and his eye lids get heavy) – well, he might have had it when they put his original hickman line in, but I don’t remember.  But, he had a woozy smile on his face as the gas started up, and he told me he loved me about 10 times … and, when I responded that I loved him and asked if he was seeing any weird things, he sleepily nodded his head … and kept nodding it harder and harder and smiling more and more that I had to put my hand on his head to slow it down J.  It was quite funny to watch, and helped this momma to walk away with a smile on my face knowing that he was right where he needed to be.

It is such a strange feeling knowing that they are removing his port – it has been his lifeline through treatment for so long, and now with this final step, it is really hitting me that Nicholas has come full circle.  We were actually in the very same pre-op room as we were the day they inserted his original line on August 13, 2009, and also his port in December of that same year … truly a circle of life feeling.  My heart and mind are in a good place right now, knowing fully that Nicholas is on the true path to full cure … and, the tears of joy are starting to sting my eyes and the back of my throat as it all starts to sink in fully  …

Deep breath in and out …..

Nichole

It wasn’t until Nicholas and I heard this song today while driving away from the hospital to his favorite Wednesday hotspot, Steak-n-Shake, that I felt compelled to finally take the time and sit down and write a post about all that has happened over the past few weeks and what it means.  We ended up singing together each of the lines with a smile crossing our faces and our happy emotions taking a leap in the sky!

Take a look at these very familiar lyrics and imagine the feelings of knowing your baby boy is now COMPLETELY done with chemotherapy and needles being stuck in his port directly into his chest to deliver these vile drugs.

I CAN SEE CLEARLY NOW THE RAIN IS GONE
I CAN SEE ALL OBSTACLES IN MY WAY
GONE ARE THE DARK CLOUDS THAT HAD ME DOWN
IT’S GONNA BE A BRIGHT BRIGHT BRIGHT BRIGHT SUN SHINY DAY
IT’S GONNA BE A BRIGHT BRIGHT BRIGHT BRIGHT SUN SHINY DAY

OH YES I CAN MAKE IT NOW THE PAIN IS GONE
ALL OF THE BAD FEELINGS HAVE DISAPPEARED
HERE IS THAT RAINBOW I’VE BEEN PRAYING FOR
IT’S GONNA BE A BRIGHT BRIGHT BRIGHT BRIGHT SUN SHINY DAY

LOOK ALL AROUND THERE’S NOTHING BUT BLUE SKIES
LOOK STRAIGHT AHEAD THERE’S NOTHING BUT BLUE SKIES

Nicholas and I jumped around the parking lot and sang, “It’s Gonna Be a BRIGHT, BRIGHT Sun Shiny Day!”  I do have to admit that I had to explain the importance of the song when Nicholas first started singing it because after I told him how great it was to hear that song at that very minute, he turned to me and said, “But mom, it has not been raining!”  “Well, baby boy, let’s think of your cancer as the rain, and the end of treatment as that “Rainbow We Have Been Praying For!”  He seemed to get it right away without further explanations, and he joined in with me with a WIDE smile on his face.

Something about that song, one that I have heard time and time again, just really hit home today, a day that we found out that Nicholas no longer has to take his 6-MP, a day that his port was accessed and flushed for the VERY last time before its removal in early May, a day when his counts already seem to be recovering and higher than they have been in years, and a day that we cherish the fact that we do not have to go back to clinic for a full month until his last pentamatine treatment (a med to keep him from getting virals/flu, etc)!!  Yes, we have spent the past two weeks celebrating his “No Mo Chemo” at both the affiliate the week before last and in Memphis last week, but to me, it just did not feel right really celebrating knowing that he still had 7 more days of nightly chemo and what seemed like alot of looming appointments/checkups ahead.  But, now that his 6-MP is done … well, a deep cleansing breath I can finally take and enjoy …

I am not sure the true reality will sink in for quite some time, maybe even months, but to get a small taste of the realization that he is truly done with those vial drugs really brings a clarity to my heart and mind, a release of positive emotion knowing that my baby is going to be able to start really recovering.  We have been told many times that once he is off treatment that we will be amazed how much better he acts and feels, even though what we see now is what we only know as normal.  I am ready to be amazed!   I have already seen him starting to thin out because he is starting to stretch out taller, which I love to see.  My baby boy has grown up so much physically over the past 2-1/2 years, and he has also changed and grown so much mentally and emotionally over that same time.  He is definitely old beyond his years for all that he has endured, but that can be said the same for each of us and every superhero that has dealt with or is dealing with a serious childhood disease.  Luckily for Nicholas, he has always been able to keep his imagination and play like the little boy that he is – something I am extremely grateful for.

Well, I wrote that first part on Wednesday afternoon, but I didn’t get a chance to finish it … it is now Friday morning, and I finally am finding the time to finish it up – or at least continue to emotionally spew some words on the page .  I am sitting down on the couch watching like 3 recorded episodes of American Idol (I love DVR as I don’t have to watch all of the fluff of things, just the parts I want to see – this new baby will not know anything different than DVR  … no beta and VHS for this new generation!), I found myself bawling while listening to the song sang by one of the girls, “Wind Beneath My Wings.” Wow, that one hit hard as I have heard the song a few times recently on my “80’s on 8″ sirius channel, but it wasn’t until just now that the words and meaning went straight to my heart.  I feel that both of my boys are the “wind beneath my wings” … well, and the third little one growing in my belly … and, even though I am not always good at holding my temper or biting my tongue, especially with these raging hormones (gotta blame it on something), at all times, I know that my boys are my life. Period. The End.

Nicholas is a child that you can laugh at one second and makes you want to spit fire the next with this overactive mouth and temper, but I cannot imagine this life without him.  Last night he was showing off his cowboy walk (”Like Rango, mom!”) and then running around and singing “War! Ha! Good God, Y’All!” To see him being so theatric and dramatic definitely warms my heart, and I was secretly wiping away the tears … but you know, he can turn right around and kick you in the shin and throw you a look to kill – so much Bubby Barnett, it is scary.  Actually, watching his father throw little temper tantrums makes me realize that Nicholas definitely takes after his grandfather’s son.

Ethan, he is pretty level, mostly happy and does not let things get him down – until something does .  I almost have a hard time getting upset with Ethan for things because he has grown and matured so much over the past year, really taking on more and more responsibilities.  But, he is still only 11 and still needs nudges from mom and dad much of the time.  But, I have to say that I NEVER thought Ethan would mature and become this mostly-responsible young man – he was such a HARD infant to handle with months of colic and no sleep, and then not an easy toddler, and once in school, we thought he had some attention-deficit issues because he was forever not listening and following through.  But, I now realize that it just a part of a normal child, especially a boy, because we are going through the same things with Nicholas – to keep that child on task drives me to the end!  However, I realize that he, too, will grow through this stage as well – and, I can continue to remind myself of the same as our third Barnett boy grows and changes .

As I have said, my boys are my life, and I am one blessed momma, even when it is clouded with boys yelling at each other, Nicholas throwing one of his huffy temper tantrums, or Ethan pestering his brother to the point of a fight between the two.  And, throw in Tessa Mayhem Barnett, especially when I am chasing her through the house while she is draining an ant trap full of sugar water all over the floors … ahh, I have to remind myself of the blessings.  But, I know they are there, and I am amazed how much our family has fought through, how much we have endured together, how much we have persevered beyond all that life can throw at us, how much we have grown … not to mention the personal journey my youngest superhero has had to physically and emotionally go through … I realize beyond a doubt that this next chapter of our lives will be full of ups and downs, hard times and good, but without the constant thoughts of cancer looming over our heads, so much better.

God Bless and Happy Easter,

Nichole

(Written last Friday evening) Well, we are officially in March, which I LOVE!  When I left the garage this morning to meet my running buddy (a couple of minutes late, as always), the first thing I heard was the sound of the birds chirping – at 5:15am!  Wow, that put such a smile on my face … just the simple chirp of a bird.  That to me says that Spring is surely a’coming, no doubt.  Now, we are supposed to have cold weather again this weekend, with possible snow, but with the mild winter we have had, I am OK with that; however, I sure look forward to the consistent 50+ degree weather, especially being able to shed the layers and shoes and start wearing flip flops again.  I do love flip flops …

Things here are coasting along pretty smoothly … Ethan is ramping up with his baseball practices starting twice a week now (he has been “training” since the beginning of January, which is crazy!), and his first double-header scheduled for April 7th.  I guess there are not any temperature restrictions to play baseball as it may be COLD that day … thank goodness for the new van where Nicholas and I can take refuge if it gets too chilly, or if this momma needs somewhere to comfortably chill out .  But, he just got through a good season of Hudson basketball, which does not take up too much of his/our time with only one practice a week and games on Saturdays – basketball is more of a way for him to be with his friends and stay in shape through the winter as he really is not in to all of the running and such .  But, he does have fun, which is so important!  Baseball will now consume our waking moments once games start in April all of the way through mid-July … it will be exciting for Doug and I for probably 2 seconds before the constant running to practice and games wears us down, but I know that Ethan is beyond excited about being a part of this new competitive team .

Nicholas, he is anxiously looking forward to his birthday coming up on the 10th – the BIG 8-years old!  Although he was bummed to find out we were NOT having a birthday party for him where he is going to be able to invite friends, he has decided that a family movie will be great.  We are in the starting stages of planning for his NO MO’ CHEMO party, and with probably 250+ going to be at this event, I think that he can surely go without a birthday party this year .  And, the best news is that he only has 4 more weeks until he is done with chemo FOREVER! He will be seen in Peoria for his weekly checkups over the next 3 weeks, and then we head down to Memphis on the 27th/28th for the last chemo in his port via IV … he will then have 7 nights of his normal oral chemo, and then be done with those vile drugs for good.  Praise the Lord!

Now, his trip to Memphis is no walk in the park – just he and I are flying down early Tuesday morning for a 1pm Psych evaluation for like 3 hours (where they test his motor processing/coping skills and God only knows what else), and then Doug and Ethan will meet up with us late in the afternoon as they are driving down.  Then, Wednesday the 28th is a FULL day at the hospital with like 3 MRIs, including a total brain scan, a scan of his full body, and one to followup with the AVN in his feet, and during this sedation, they will do his last spinal tap/bone marrow aspiration.  Then recovery and at like 4:00pm, he will have his LAST chemo in the med room where the nurses and staff throw a little No Mo’ Chemo party for him … did I mention this was his LAST chemo via IV?   That absolutely amazes and excites the hell out of me, and I cannot even imagine how it will excite the hell out of him when the reality hits him!  Oh, this brings such a huge smile to my face to think of that very last 10 minute push of chemo … deep breath in …

Once that long day is over, he has decided to treat the family to Domino’s pizza back at the Grizzlies House for dinner … oh my, he has been dreaming about that pizza for weeks now … and, we will stay the night there in Memphis, get our bags packed and head to the Mud Island Museum downtown to show Ethan this great place filled with such great history and artifacts – one of Nicholas and my FAVORITES in Memphis with the exception of the Pink Palace Museum.  Then, we will all head to St. Louis for a few days of fun and relaxation.  I think we all deserve a few days of fun, including Nicholas who has endured SOOO much more than I can even personally fathom.

Doug and I … well, we are hanging on for this ride we call life.  It seems that since we found out we were pregnant, I have either not felt good, been too tired to stay up past 9pm, or just simply have been too “dazed and confused” with everything else going on in our lives to really allow us time to connect as husband and wife.  Sometimes life is like that, and it takes one or the other of us to stand up and make the first move to make a change.  I guess that will be me … I need to not sound so over-joyed with knowing that I need to be a good wife and friend to my husband as well, huh?! LOL It is not that hard to make time for each other, but I am going to just throw this out there without sounding like a whiner … I am tired most of the time by the end of these long days, my back starts aching around 2pm and all I want to do is have a drink and a long bath (which I have to settle for ice water and the like versus the hard stuff I would rather enjoy, but the baths are ALWAYS what make me feel better ), and once I get the boys to bed at night, it is like my own comfy, warm bed literally beckons me to lie down on it … then, the day is definitely over for me.  Poor Doug, left to watch our nightly TV alone, without the engaging conversation of his wife … HA!  As I read back over this, it is like I am speaking of our “marital intimacies,” and that is NOT what I am talking about … I would not talk about that on my son’s blog about living life past diagnosis … geez, where is YOUR mind??   No, I am just talking about connecting in the way of remembering that we are husband and wife and not just Ethan and Nicholas’ mom and dad, put on this earth to work to make money to support these two boys and our crazy dog.  I would settle for a 15 minute walk around the block to help us connect … or, he could even send me to the spa alone for an hour or four to allow me to remember how much I love him.  Yes, I vote for that connection!

Speaking of being pregnant, my stomach is sticking right out there, much more than it was at this point in either of my other boys’ pregnancies (although I was told by a friend the other day that there is a woman in her office that is due in August, and she is showing more than me … that made me feel better).  And, last night, I had a tight cami on and my jammie pants, and when Nicholas walked by jabbering about one thing or another, he stopped as he happened to look up right as he passed me and completely stopped talking, smiled briefly, and then kept on walking.  So, I followed him in his room to see what was that was all about, and he just smiled and said, “Your belly is getting so big mommy!”  Oh, he has no idea how much bigger this momma is going to get and just how far my skin will stretch to accommodate the baby!  Ethan paused yesterday as well when we were talking … I guess me opening up the cardigan sweater I was wearing and letting my belly breathe really left an impression on him as well .  I am excited for the time when the baby starts moving enough for them to feel it – when I tried to explain to Nicholas the other day that the movement felt like spiders crawling around in my stomach at times, he just scrunched up his nose and shook his head.  I guess that did not explain it just right in his mind?  We do plan on pulling the boys out of school for the sonogram at week 20, and I cannot wait to see their faces when they see the baby moving around on screen versus looking at a static picture!

Well, I guess I am done rambling for the evening … I guess it is good when I am able to get on here and just talk about the things that are happening in our lives without there being a need for an emotional release due to some crazy stressful event.  Wait, I say that, but last week was a hellacious one with the thoughts of CNS relapse for Nicholas … why didn’t I post to help me through those crazy few days?  Probably because I am pregnant and FORGOT like I do everything else these days! Ha!  Well, as you can see, we got the all-clear results from the unscheduled spinal tap that they decided to perform due to Nicholas dealing with some vision issues over the previous few weeks.  And, after finding out from the eye doctor that his eyes are perfectly healthy and that there may be an underlying cause to the blurry vision, we needed to put any questions and worry to bed immediately.  So, we were fortunate enough to get in for a spinal tap the very next day (Thursday), and after a LONG day of waiting, we found out that the preliminary results were completely clear … and, Dr. Ross called us Friday evening with the great news that the final results showed ZERO signs of leukemic blasts.  Whoa, that was a week that I do not soon plan on repeating.  Of course, I am sitting here able to just click away and release all of the “normal” things that are going on in our mostly abnormal lives, without realizing that just a week ago we were thrown on another rollercoaster … I guess I was blocking it out, or again, maybe I just plain forgot from all of the hormones surging through my veins!  Either way, we are beyond thankful to be able to head in to the trip to Memphis knowing there will not be any unexpected results for our superhero’s final treatment.

Have a great weekend and God Bless!

Nichole

I just re-read my post from just before Christmas, talking about forcing myself to remember and counting my every blessing … heck, I even added a P.S.  that stated, “Have a WONDERFUL and safe New Year!  I am 100% positive that 2012 is going to be the BEST year yet! ”  And, I have to say that 2012 with only about a month and a half under our belts, has already worked to shock and awe us … I am really thinking that when I made the statement that it was going to be the BEST year yet, I should have defined some parameters of what BEST means to me .

I have to start by saying that I have so needed to unleash my emotions as I have done over the past 2-1/2 years on this very blog, but since I know that there are actually people out there that might read this post, I have had to release my emotions in a much different way … and, that is relying on some very close friends to help me through the past few weeks and days.  Yes, without the close support of these said friends, I would have been a basket case when I found out that I was almost 9 weeks pregnant just over 4 short weeks ago. Yes, the shock of just typing that single word still makes me pause … but, it is our reality, for sure.  Why the shock, you may ask?  Well, when your husband has a vasectomy 7-1/2 years prior and gets the all-clear from the urologist shortly after, you really do not even fathom that fact that you could be having another baby at the ripe age of 38, with an almost 8-year old and 11-year old at home … nope, those thoughts do not even cross your mind.

Even more, when you have just traveled the path of diagnosis of leukemia for your youngest child to remission and heading forward to full cure, you do not think that God has any more surprises left out there for your family – I mean, come on, really??  Don’t you think we have been through enough already??  We have been counting down the weeks until Nicholas’ last treatment quickly approaching in late March for quite some time now, and definitely looking forward to starting to regain some control of our lives … there is that damned “control” that I have been struggling to keep my hands off of since this all started, and just when I think that I have gained an ounce of it back, God laughs and sets our lives spinning once again. He surely has a sick sense of humor doesn’t he??  Well, I know Him very well as we have a love/hate relationship at times with all that we have been through (yes, I say that sarcastically, not really meaning that I would ever say that I hate God, but I think you understand, at least partially, where I am coming from … and, if not … oh well, get over it ), and I am positive that He has a sick sense of humor since we just found out that we are having a boy – as I have said before, another penis in my life.  Now, if that is not the funniest joke of all, I am not sure what is!  The comforting color of light pink would have been so welcomed, but no, more blue in my life .  As Doug said this morning, at least we won’t be financing complete weddings since we have only boys, right?  Gotta keep looking at the positives to keep you moving forward!

So, back to the shock of it all … I have to say that I had not been feeling good just after the new year, and once I got pukey sick about a week later, EVERYTHING fell into place all at once.  I am going to get personal here because I can, but I have not had to keep track of my “monthly going-ons” for years, so it is not anything I really think about … as Doug says, “it surprises the hell out of you every month, doesn’t it?”  Well, I had thought about its absence a few times through the middle to end of December, but with the Holidays, I did not really put too much heavy thought into it … until the pieces all fell into place.  I ended up buying a pregnancy test on the way home, and with that one not giving me complete results, I asked Doug to pick up a non-generic one on his way home from work (yes, that conversation via text was an interesting one, to say the least … my husband has some foul language when he wants to ).  Did you know that they have digital pregnancy tests now?  Well, they do, and they did NOT have those when I was pregnant with Nicholas over 9 years ago … wow, I have to stop doing the math here!  Needless to say, the fancy digital test came back a clear pregnant, as did the one I took again the following morning, you know, just in case the other two were wrong.  Whew, that is when the shock really started to set in, although Doug was in complete, hostile denial.  Understandably so .

Well, a blood test the following morning revealed that I was definitely pregnant, but the HcG numbers were quite high, which could mean that either I did not have a clear idea of when my last “monthly going-on” was, or we were having multiples.  So, not only do we have the shock of a pregnancy, we also had to chew on the fact that we might be having multiples FOR A WHOLE WEEK!  I can tell you, waiting a week to have a sono to confirm just how much your life was going to be flipped upside down was excruciating! But, low and behold, there was only 1 heartbeat showing, and once again, the pieces started to fall into place … or fall to pieces, however you have to look at it .

We decided that day to move forward with basically an early amnio called CVS sampling to help put our minds at ease that this baby growing in my belly for the past 9-10 weeks without our knowledge was healthy – that coupled with my “advanced maternal age” (which is a BS term, if you ask me!), and Doug’s crazy vasectomy failure … it only takes one, right?!  Again, we kept the news under our hats, well besides me telling a few close friends, including my sister-in-law, and were able to get the CVS sampling scheduled and completed at Northwestern back on January 31st.  That was actually a fairly easy process, and I got to spend the whole day with my husband where we had a great lunch and some delicious Garrett’s popcorn – what I will do for a day alone with my husband, right?   And, not even 48 hours later, we got the preliminary results that everything looked just fine.  That is when we both took our first breath in over 3 weeks, and I was so relieved to start to feel emotionally happy about the whole ordeal!

Then came telling the boys, which is an experience I will never forget!  We both knew that Ethan would be doing cartwheels as he is a baby magnet, and that Nicholas would be screaming from the top of the roof that he was going jump once we told him.  But, as always, we were surprised by their reactions.  I actually had a cookie cake decorated in pink and blue with “We Are Having a Baby!” in cursive across the cake. So, once Doug got home from the class he had been at all week, we sat the boys down, got out the video recorder, and presented this bomb to them.  Crazy thing is, I started out the conversation telling the boys that we had some news to tell them, some really important yet shocking news, and then asked them if they could guess what it was.  And, low and behold, Ethan says, “You are pregnant!”  What??!!  Nicholas yells out, “We won a thousand dollars!”  Like I would sit them down for a grand won .  So, when I questioned Ethan about his statement, he says, “I don’t know, it is shocking news and very good news, so it makes sense.” And, Nicholas pipes up, “Mom, you are not fat!” translating to mean I was not pregnant … I love that kid!   I tell you, when they read what was decorated on that cake, their faces were priceless – when the recognition hit Ethan, he blurted out, “I told you!” And, once Nicholas deciphered the cursive writing, he said in a small voice, “We are having a baby?”  When I said, “Yes,” all hell broke loose – Nicholas broke out in this grand, excited smile, and Ethan just sat there dumbfounded … we had shocked him into silence, which is not easy to do!  It was so great to be a part of that whole experience …

And, the hear the shock of my mom and dad’s voice over the phone when Ethan called to tell each of them was priceless as well.  With Nana, she was actually at our house on Saturday to see Ethan’s basketball game, so we got to tell her in person … the boys were preparing for her to pass out, with 9-1-1 on speed dial!  Again, being able to share in the excitement of it all has been a true blessing for Doug and I, especially with the emotional roller coaster we had experienced over the three weeks prior.

So, yes, we are having a new baby boy (100% genetically confirmed) due around August 18th, and here is where the heart and meat of the meaning behind this baby comes into play … this baby is due just 6 days past the 3rd anniversary of Nicholas’ diagnosis.  That one still gives me goosebumps when I think about it.  Doug was in the shower just a few days after that first sonogram, thinking about any big holidays around the baby’s due date, and the realization hit him … when he got out, he told me, and that was, once again, when the pieces started to fall into place.  It really had only taken me a few days to wrap my head around this new development in our lives from the time I found out (Doug, that took much longer than a few days!) … I mean, one thing I have learned from the diagnosis of cancer is that we do not have any control, so you just have to go with the flow, however easy or hard that is to actually do … but, I can say that I held some real selfish bitterness in my heart knowing that I was just getting my life back, both personally and professionally, after so much sacrifice with Nicholas’ diagnosis.  And, with the light growing brighter and brighter at the end of the tunnel, we are hit with the news that we are having a baby?!  Really?  So, I was basically blowing off the words from my friends that “This is all in God’s plans” and “This baby is a true blessing.”  That was complete BS to me – we had paid our dues with “God’s plans,” and learned our lessons, and how are we rewarded … another baby?  As you can see, there were some serious emotional struggles there, but the moment that Doug pointed out that the baby was due on or around the anniversary of the worst experience by far in our lives, Nicholas’ diagnosis with leukemia, once again, the pieces all started falling into place.  It was my “Aha!” moment, what I completely needed to help me back on the path of realization that God does have control, and this is all in His much larger plan.  How do you describe a sense of peace that comes over your heart and body?  Well, I have experienced that once before when we were told that Nicholas was in remission after a long 29 days of fighting … and, that sense of peace was as much needed for this momma then as it was now …

I do have to say that I was still struggling with the “whys” of it all, knowing that the boys were going to be heading to school and telling their friends, and the news would spread around Hudson … I mean, as much as we would have never wanted it this way, we are known in our small community because of Nicholas’ diagnosis, and the support that we received because of it was unimaginable, for sure.  But, to know that, once again, our names were going to be passed along and our situation discussed over dinner really bothered me – I mean, we just want a boring life, already!!  But, a single text conversation from a very spiritually-wealthy friend helped me to understand more of why this has happened to us … simply put, she responded, “God sure is making an example of your family!”  Sorry to repeat myself, yet again, but once again, the pieces all fell into place.  Now, I do not believe that he is setting us on high for all of the great and wonderful things we have done in the parenting arena or personally as the humans that we are … I don’t accept this in any condescending way at all.  I simply take it that God does have plans much larger than we can fathom, some that do pertain to us and many that do not, and for whatever reason unbenounced to us, He has decided to use us a vehicle to further those plans.  And, as long as that means He will never bring cancer back into our lives, and instead bring the blessing of a baby boy to help us heal when we did not even realize we needed the healing and joy of a new baby, then I am honestly completely ok with that.  You still might read this and think I am being “holier than thou” with a “we are good and you are bad” attitude, but that could not be further from the truth.  I my heart, it makes sense to me and gives me a sense of peace, and that is all that counts.

So, our new journey from diagnosis to remission and on to full cure, still my constant prayer, will now include a new baby boy … full of ups and downs in this roller coaster that we call life.  Man, and all both Doug or I wanted was for things to just settle down and get back to our “new normal,” but how boring would that be, I wonder??!!

God Bless,

Nichole

Wow, it has been so long since I have logged in to my administrative account for this website and actually focused on typing out a post from the heart … so long, in fact, that I am sure I would not have known my password to do so if it were not for my smart browser remembering it for me.  There are so many times that I tell myself that I need to sit down and write that out or jot down some ideas on a piece of paper to remind myself just how I felt at a particular minute of a particular day … but finding the time to do so isn’t always easy to do.  Kind of like praying to God when things are going “smoothly,” you know?  You beg and plead and bargain with God when your worst nightmares are playing out in the reality of your life, or when something negative happens in your life, but talking to God when times are good … well, that is not something that I am always good at.  Life just keeps rolling on by at break-neck speed, and the next thing I know, I have not read from my inspirational calendar for weeks or have not said a silent prayer while cradling the silver charm that hangs from the rearview mirror in my car for even longer.  It is so easy to do this …

But, there are some recent events that have opened my eyes to the blessings that surround me, the reality that is ours to share and live, forcing me to truly remember where we are and where we have come from on this journey.  One such event is last Sunday when Nicholas went to simply put a small package on the kitchen table … and, the next thing we know, we are in the ER with the news that Nicholas has all kinds of damage in his feet, including some tendon damage, a recent fractured ankle, along with 3-4 healing fractures.  That opens your eyes right up!  Nicholas, he is always such a trooper and has taken it all in stride with a smile on his face (at least after he got a scooter to help him be mobile).  Now the MRI on Friday thankfully gave the docs a much different opinion than the original ER docs, and only 3 small bones were found to be fractured with no tendon damage or any healing fractures .  But, it was a LONG day for all of us, and to have to prepare last minute for general anesthesia was a worry for mommy and daddy, but after much consultation with the anesthesiologists, they were able to gently put Nicholas to sleep and gently and wake up just as gently.   And, best news of all that we received that evening while in recovery was that they were going to fit him with an air cast, and he could bear weight as soon as he was able.  The results still need to be sent down to Nicholas’ AVN/ortho specialist in Memphis for him to decipher, but with the rate of his healing, we are confident that all is good.  Broken bones really have not stressed me out too much – I mean, this is something tangible we can see and work to fix, right?

Now, an even more important reminder of this journey that we continue to find ourselves on – at times surprising the hell out of me to realize we are still on such a treacherous journey when things seem to have smoothed out so much over the past 8 months or more – happened while at clinic getting accessed in the morning before Nicholas’ MRI.  We were there while the only 2 nurses there for the holiday were working to access Nicholas, and I happened to realize that someone was in the procedure room … since I knew it was a day that they only took sick children, this took me by surprise, and I asked one of the nurses who was there accessing Nicholas if someone was having a procedure (spinal tap).  She told me and I passingly asked if it were scheduled, really not thinking too much of it – until she said the simple two letter word that stopped me cold and instantly put a vice on my stomach … “No.”  She did not have to say anything more, nor would she as I just knew that it was bad.  Knowing later who the little girl was getting a procedure, I realized that she had just finished 3 torturous years of chemotherapy, endured something like 25-30 spinal taps and bone marrow aspirations, walked the SAME journey that we had … she was DONE with treatment.  And, if my gut is telling me right, she was back getting her monthly blood check when they found something amiss.  MY WORST NIGHTMARE!  I can tell you that the seed of doubt that I find taking root in the pit of my stomach reared it’s ugly head, and all I could think about was that this could NOT happen to a little girl, normally happy and dancing in clinic, just a little further than Nicholas in treatment.  She could not relapse.  Period.  How are her parents dealing with this blow?  More massive of a blow than getting word of her initial leukemia diagnosis … more debilitating than anything horrible I could possibly thing of … MY WORST NIGHTMARE!  Just to think of the conversation that I pray they do not have to have with their superhero telling her that with all of their years of hardwork, they have experienced a major setback.  Please, if you are reading this post right now, join me in prayer and/or send positive vibes to all children and families dealing with major setbacks, especially this beautiful young girl that has already endured so much.

Ohhh, then last night after the best day with family for Christmas, I happened to take a look at my phone and realized that the recently-installed caringbridge app was showing that I had an update for a local young boy named Landon Clark – he is doing great as well, thank the Lord.  And, since it was the first time I had looked through this new app, I scrolled all of the way down to the bottom of the list of sites that I had visited over the past 2-1/2 years and found Nicholas’ CB site.  It is almost like my fingers were working faster than my brain, and the next thing I know there are tears streaming down my face and sobs building in my chest … I tell you, the emotions are right there on the surface, ready to spill over and choke me in a split second.  And, each post that I read, all just a few days up to a few weeks post-diagnosis, I could remember exactly where I was when I wrote the post, the tears shed for living the post, the emotions of watching my son deal with days of hell.  Wow, if that is not a slap in the face forcing me to remember exactly what event turned the tides of our lives forever, it is reading old posts when the fires of hell were the hottest.  I could barely breathe at one point, and I had to get up out of bed with the goal of giving my superhero a big hug – even if he was snoozing in the room next to me.  Luckily, I had an excuse to wake him up because it was around the time for his nightly chemo.  If he were fully awake, he would have probably thought me a crazy woman for leaking tears out of my eyes like I was, sobs wracking my body as I held him tightly to my aching chest.  The old fears and terrors and worries and raw emotion all came erupting to the surface with a vengeance, probably fueled as well by the thoughts of our young friend potentially sitting down in Memphis awaiting the final word on how their world is going to be flipped upside down, yet again.  Deep breath in and out … of course, Doug knew that there was something going on as I walked back in to the room, and he was there, yet again, to comfort my aching heart.  As I have always said, I know with every fiber of my heart that Nicholas is going to continue through remission and eventually on to full cure, but when your mind starts to over-think things, and your reality and the stark reality of others starts to smother you, you start to question … I hate questioning.  It only gives me grief and makes it harder for me to truly listen to my heart.  Deep breath in and out …. all the way out …

Today was a good day, and a reminder that I cannot focus too heavily on our past and not allow the seeds of doubt to take root because Nicholas is doing so well.  He is a happy young man – a happy boy that got “all that I asked for Christmas.”  And, his story continues to touch people and reach people in places that I never fathomed or imagined.  It is called awareness, and I learned yesterday from my step father that his high school girls’ basketball team had decided on their own to wear orange socks and headbands during their Holiday Tournament in honor of Nicholas and to raise awareness for leukemia and money for the St. Jude Children’s Research Hospital.  How absolutely selfless of an act is that??  Girls that we do not even know, girls that are at a stage in their lives when looking outside of their lives and what affects other children and families usually is not at the top of the list.  How absolutely humbling … and, we hope to get the schedule as they play in the tournament to hopefully make it to a game of theirs so that they can see how money raised for such a wonderful hospital works to successfully treat children just like Nicholas.

Again, another event to help me REMEMBER the reason we are on this journey … even if the remembering is emotionally draining and stressful, yet almost welcomed so that we do remember how far we have come and where we have come from.  And, in three short months, we will be celebrating the end of Nicholas’ treatment and passage on to the new journey of cure … and, trying hard not to forget, yet remember the good, bad, and the ugly every step of the way … especially remember the good and the best of what has come from this whole ordeal.  There is so much of that to keep us moving forward for years to come!

God Bless,

Nichole

P.S.  Have a WONDERFUL and safe New Year!  I am 100% positive that 2012 is going to be the BEST year yet!

These are the words spoken by my superhero last night as he hunkered down in his bed, terrified beyond rational belief of the winds howling outside.  And, as I listen to this request spoken in such a small, scared voice, I instantly want to climb in to his bed with him and take away all of his fears, rational or not.  That very second, with only 11 words spoken, I am reminded that Nicholas is only a little boy, just 7 young years old, even though he has an old soul and a real-world attitude and has endured much more than a young man should have to.

I catch myself forgetting that my children are only 7 and 11, just children in every definition of their age, but somehow expecting so much of them and demanding even more.  And, I am sure that it is a common thing across most households, but when you throw in a diagnosis of cancer, you see your children age and mature beyond their years so quickly.  Maybe that is why I cherish listening to the shouts of laughter as I catch images of children from the neighboring houses running like banchees around the perimeter of our house and yard – just children being children, nothing more.  There are so many distractions for our children these days, keeping them inside and plugged in, rather than pretending and playing and yelling and screaming outside like my children and about 5 others are doing right this very minute …

Sigh …. my children are growing up and changing and molding in to the young men that they will some day become, and there are times, with last night as a perfect example, that I just want them to stay little so that I can protect them from all of the bad in the world, natural and man-made.  But, we all know that cannot happen … and, I know firsthand that I cannot protect my children from everything, including the beast that has infiltrated our lives.  Is it fair that so many children just like Nicholas and Ethan have had to grow and mature beyond their years at such young ages by the confrontation of a catastrophic disease???  Of course not, but it is not just children in their same shoes growing up so early in their young lives … it seems that happens all around us.

Where is this post going?  I sure don’t know .  I guess there are just times that thoughts get caught up in my head and emotions need to be released so that I can keep moving forward … always moving forward.  And, there are times like last night when I hear my baby blue bird sound just like the 7-year old that he is, and it sets off a mix of emotions – some angry emotions for cancer taking 2-1/2 years of my son’s life and forcing him to grow up in a split second and face horrors that some adults could not handle, angry emotions for what my oldest has had to endure and live through, beyond what other children cannot even imagine;  other emotions of thankfulness for allowing me even the opportunity to cuddle my son whose body had been riddled with cancer, thankful emotions for having my family together under one roof, even if the boys fight every minute of every day; and more emotions of just pure and total love beyond anything that words can describe for two young boys that share my blood (although Nicholas mostly shares his lack of patience and bold outbursts with his Grandpa Barnett … anyone that knows both Nicholas and Bub are nodding their head and smiling in confirmation of my written words right now!).

I am blessed to be able to turn on Nicholas’ fan and offer an extra hug or three to my little boy each night … and, I am thankful beyond belief to be given the opportunity to do just that …

God Bless,

Nichole

I am sitting on my big yoga ball out on the back porch, enjoying the sun, while typing out this post.  I know, a yoga ball, but Doug and Ethan put away all of the furniture yesterday in preparation for the cold weather to come.  And, a yoga ball can serve two purposes, one to have a place to sit my bum, and second some time to tighten my bum … well, at least my core .  Well, that is what I am going to tell myself ….

So, it has been another busy, long, and also emotional week, and I am just now finding a few free minutes to try and type out all of my emotions so that I can continue forward on this journey we call life.  Yes, another whirlwind trip to Memphis took place this week, with over 15 hours in the car in less than 36 hours total.  That is a long ride, but Nicholas does so well, and I am so glad to be able to pass back a gatorade bottle when I am not ready to stop for gas or to pee myself just to keep us moving towards our goal.  I have to say, however, when your 7 year old son is attempting to stand up in the seat behind you, and says frantically while filling a bottle, “I think it is going to slip!,” your blood pressure does rise to its max!  Luckily, we averted disaster, and we made the trip to and from Memphis without much hassle except for the rain and the 45 minutes stuck behind what I found to be a caravan escorting a 300′ underground storage tank around Sikeston, MO.

But, even with the rain keeping my attention on the road, my mind still had plenty of time to start thinking, and that is not ever a good thing in the end.  Thinking about where we have been, were we are, and where we are going, all as it relates to the diagnosis of cancer.  I even have to admit that I had a pretty good dread building in my stomach when I was packing for the short trip on Monday night … thinking a few times if I should throw an extra pair of clothes in the bag for each of us “just in case.”  Man, that feeling sucks. The feeling that things are going along smoothly, toooo smoothly.  It is a stress that I wear all of the time … that burden that follows me everywhere, even when I do not consciously know I am being followed by it.  CANCER.  I want to beat it away from me, I want to scream at it to never rear it’s ugly head in my life again, I want to punch and kick and scream filth to scare it the hell away … but, that seed of doubt festers, and sprouts roots, and searches for water for which to thrive and grow and bring doubt in my mind and in my heart.  I want to yell and scream at anyone that will or will not listen all of the hell we have been through, and we do not deserve any more. Period.  And, for whatever crazy reason, it seems that the dread is more evident and prominent in my subconscious than it was a year ago.  A year ago, our worries were different – keep Nicholas healthy with his lowered counts and constant hard hits of chemo.  I think that the hard blows gave me the security that there was not any way in hell that cancer could live through the vile drugs that were (and are) being coursed through his veins.  Well, I would be lying if the thoughts of relapse were not there, because they were.  But, now, it seems that the doubts are embedded in my brain simply BECAUSE we have come so far.  I have to say that it would be a pretty sick joke on God’s part if we have come this far only to have to start over on an even harder course of this journey.  But, those thoughts are what surfaced on that long 7-1/2 hour drive to Memphis on Tuesday.  See, I had too many minutes to ponder where we have been, where we are, and where we are going.

You know, maybe that is more the reason why talking about the end of treatment scares the hell out of me rather than not having the security of getting his blood drawn and counts back each week.  Maybe because it is like the end of the race is here (although, will it really ever be here??), and I can see the band playing at the finish line, with everyone and their brother hooting and hollering for Nicholas as he comes up over the hill, heading towards that finish line, only for something to happen … his shoes to come untied to cause him to tumble, someone to push him down as they elbow to the front of the racing pack, his need for water to great to push on to the end, causing him to make an unforseen pitstop.  Man, these written words are downer, aren’t they?  I mean, it sounds like I sit around and just wait for the bad test results to come back, already having our bags packed and waiting for the doctor to say, “well, it is time for you to come live down in Memphis again so that we can give this another try … ”

That is truly not the case, I can promise you that, but I would be lying if I did not catch my thoughts heading that way on occassion, even when Nicholas is feeling his best and running like his legs and feet don’t hurt him for a second. Why does my mind have to be this way?  I am truly a fairly positive person, or at least I try and pretend to be , so why the thoughts of negativity, thoughts that are in essence our worst nightmare?  I guess it is because we see it happen with children and families that we know, children and families that are near done with treatment or completed, getting the news that the tests from the monthly checkup show that cancer has returned.  I guess I can give myself a break and realize that it is human to have these horrible, terrible thoughts … I am what you call a realist … the reality is, this could happen to us as well.

But, I also know that the reality is strongly in our favor that it is NOT going to happen to us.  And, as I have said time and time again, even when my doubting mind casts shadows of negativity and despair in my head, my heart ALWAYS knows and understands that cancer will not be a part of either of my children’s lives. EVER!  But, damned the realist firmly at my core, not being negative, and not allowing optimism to flow easily.  I guess we have been through too much to let optimism have total reign.  Although, I have to say that the feeling of elation that comes when you get those all clear results, even after 20 plus times, is the best high ever … right up there with a large glass of the best Cabo tequilla and squirt … HA!  Just kidding, it is so much more than that.  It is an emotional release, not realizing that you have been holding your breath for minutes, hours and days at a time, or feeling the pain in your jaw due to clenching it for days on end … it is the feeling returning to your fingers and toes after they have been tense for weeks.  It is like a deep cleansing breath in … and … out, and just wanting to laugh and jump around and pump your fists up and down and screaming at the top of your lungs.  Sort of like that, but not really … I am not sure I can even describe it to anyone, except to those parents who have walked in my shoes with a child in Nick’s shoes.

See, this is a club that I am a member of that only a few special people get access to … in fact, another St. Jude Warrior posted something on FB about our special club that I feel is pretty right on and fitting that I think I will share:

Membership card required

I belong to a club. It’s a very exclusive club.

Nobody knows how to gain membership. But it’s a tough initiation.  Some say it’s exclusive, but I think more and more are starting to become members, so I would argue that point.I have had to be away from home for long periods of time to fulfill my duties as a member.

I have had to sacrifice time with friends and family.

Initiation made me cry. It made me lose sleep. It even made me scared. I wanted to stop my membership many times, but there are strict rules you must follow. Opting out is not an option.

This club requires a lot of time and dedication, more than any other club I have belonged to.
After I got through initiation, I thought things would become easier and more manageable, I was wrong.

I have to say, I’ve met some amazing members in this club. New friends who have become like family.
Get togethers are more frequent and the cost is steep.

The motto was hard to learn, but so worth it. This club has taught me about life and how precious time is. It had taught me to laugh when most would cry. It has taught me to love when most would hate. It’s has taught me about patience, kindness, and learning to let go of things that don’t really matter. Live, love, and laugh mean something entirely different. I’ve learned to weather storms and dance in the rain.

I belong to a club.
It’s an exclusive club.
No membership card is required.
I am a cancer mom.

That says it all, huh?  It is a club that I will be a member of for the rest of my life … and, even though this post does not reflect it, I am beyond blessed to have gained access to this wonderful club.

God Bless,

Nichole

Today, we said goodbye to a wonderful woman, Mrs. Susan Schueremann.  She has fought hard over the past 6 months against the worst of beasts, with the last month a true struggle for her and her family as they watched her let go.  I have prayed steadfast over this time for her courage, hope, and peace as she faced the depth of her reality … and, I have also prayed the same for her husband and her two daughters and two stepsons as well. I understand the position they are in, at least partially, after enduring Bub’s final days at Doug’s side when he passed 19 years ago.  It is torturous to have to sit back and watch, and there is a point where you start praying that they let go so that you can start the grieving and eventual healing process.

Cancer … it is all around us.  Mrs. S (I always addressed her as this in written correspondence because her last name was so hard for me to spell:) fought against breast cancer probably around six years ago, and then was diagnosed with brain cancer, a secondary cancer, just before spring break in March of 2011.  Nicholas started 1st grade at Hudson Elementary with her in August of 2010, a year in to his journey, and before that time, I had only passed Mrs. S in the hallway and did not really know her that well.  But, that all changed when she was “chosen” as Nicholas’ 1st grade teacher and lead the team that worked to assure he would be supported and supported well at school during his first year in school after his diagnosis just a year prior.  At the time, he was still getting hit pretty hard, and I was nervous as all get out to even think about him going to school with hundreds of other germy children, but Mrs. S was immediately assuring us with the knowledge that he would be taken care of.  Even with our scary stories of dex, with tales of extreme emotions and eating out of this world, she calmly told us that when he was at school, she would take care of him. Period.  There were not any questions on her end, it was just how it was going to be.  And, she was a woman that I liked immediately – a strong, gracious, no nonsense kind of woman.  And, Nicholas took to her immediately as well.  They had a strong connection with both enduring cancer and the treatments that followed, and on the most fundamental level, they just clicked.  And, if you can believe it, Nicholas only missed one day of school the whole year … and, the driving force behind this was this wonderful woman.  How do you thank someone that takes your son under her wing and becomes his protector while at school, hours away from his own mom.  Yes, there was a whole team that made it work for Nicholas at school, including Mrs. Meyers always there to make sure he takes the right meds and keep us abreast on what goes on during the day; but, Mrs. S was the constant, steady force.  She kept us busy with homework on his days at home or clinic, and she made sure things were normal for him during the days he was at school.

Mrs. S left school just before Spring Break, and it was great for both Nicholas and I when she invited us to her house on a Tuesday after clinic for a visit in late May’ish.  I remember her being so strong and so positive, looking just gorgeous with her scarf covering her then bald head – something that surprised Nicholas more than anything … he was used to seeing bald kids all of the time, but not his teacher!  But, she talked of being back at school in the fall to teach once again, something like her 25th year teaching 1st grade.  And, I kept up on her progress through the summer, Nicholas’ current teacher was so good at keeping me up-to-date with her condition over the past two months or so …  I know that this has been torturous on the staff and teachers at Hudson.  She is going to be missed by so many, especially her Hudson Elementary family …

Now, as I said, I only first met Mrs. S a year ago August, but she is one of those people that you just feel like you have known forever, or one of those people that you wish that you have known forever.  She put me immediately at ease with her quiet strength, and she did the one thing for me that I could never repay her for … she put her arm around Nicholas and took care of him while he was at school seven hours each day, three days/week.  That builds a bond with another person stronger and faster than anything else can.  She knew what it meant to have cancer, and she used her full heart to take care of my son being treated for the same.  And, she could understand what he was going through so much more clearly than I could, and it helped to put this momma at complete and total ease.  It was like a much needed deep breath …

When we got the phone call on Tuesday afternoon, Ethan happened to repeat out loud what the recorded voice was saying, and it all hit like a ton of bricks on Nicholas.  There were instant and heavy tears, with him running upstairs to let his emotions run over.  And, I just sat at the kitchen island stunned.  After a few minutes, I walked upstairs and just held Nicholas in my arms as the news sunk in, with my tears mixing with his tears.  He asked some good questions and then he was back up and heading downstairs, tears dried and handling things so much better than I was.  His courage and strength, once again, amazing me …

When I went to Mrs. S’s visitation tonight, the lines were long, giving each of us plenty of time to watch the digital story full of pictures of her smiling face with her beautiful daughters, husband, and stepsons.  I could not keep from smiling myself to see the pure happiness and joy in her eyes in each of the pictures depicting different times in her life, events large and small.  And, then to finally make it down the line to meet her niece, sister, stepsons, and then her daughters (they are only just in to college and seem so young to be living their lives without their mother at their side).  I shook both of their hands and introduced myself and Nicholas’ mom, Nichole.  And a light of recognition crossed her youngest daughter’s face, and unbelievably, she said, “THE Nicholas???!!”  Instant tears from both of us as the realization hit … “we have had so many wonderful conversations at home about Nicholas – he has been a hot topic in our house over the past year!”  Again, another realization of the depth of Nicholas and his story … and, then to be able to meet Mrs. S’s dad whom Nicholas said always came to school to read to him and his classmates on days they served corn dogs at school , and to be able to give her husband a hug – a man I had never met before, but somehow felt some strange connection with.  From this room, you were  led me down a hall past a small table with three journals that allowed people to write a note of advice to Mrs. S’s girls for the future, and on the table sat a picture of Nicholas and Mrs. S from the Give thanks. Walk last year – the same picture I currently have on my computer desktop.  That was the breaking point for me … the realization, once again, that my son had as deep of a connection with this wonderful woman as this wonderful woman had with my son.  It was a mutual bond that they shared.  And, I will be forever grateful …

And, she will be forever missed … but, Nicholas wrote a poem for her last night that I believe helps him to deal with this loss …

from Nicholas 1

Evryone has a speret in them like Mis Scheurmann.  She is in a beter plase now.

I feel the need to send the lyrics of a song that we sang in church a couple of weeks ago which touched me deeply when I sang them … I have not been very good at actually making it to church as of late, but I try and keep a close connection with God on a regular basis as we continue on our own journey that includes cancer.  But, there are times that certain songs, pictures, sounds or smells just hit me a certain way, like I was meant to be there at that very minute to experience it.  And, this was one of those times.  I have actually kept this insert in my car since that Sunday, and I have re-read these lyrics several times … and, I am thinking there was more of a reason for me to be there at church to experience the impact of these short verses … to share them with you who may need them as much as I do.

“The First Song of Isaiah”

Surely, it is God who saves me;
I will trust in him and not be afraid.
For the Lord is my strong-hold and my sure defense,
and he will be my Savior.

God Bless and be safe this Holiday weekend!

Nichole

I am sitting here at clinic on Tuesday morning at 8:25am … pretty early for us as we had to be here at 7:30am for Nicholas’ 2nd to last spinal tap before the end of his therapy.  Through the hustle and bustle of getting his labs drawn yesterday morning, parting our ways with the boys heading to school and Doug and I to work, then back up early today to make it here on time, it is amazing how much this all seems “normal” to us.  And, it is so far from normal it hurts.  Sometimes the gravity of Nicholas’ diagnosis hits me straight in the gut, completely off guard … and, just now was one of those times.

Under the glaring lights of the procedure room, he was quietly playing a Transformers Xbox game, being the little boy that he is … but the surroundings were so not suitable for a little boy.  Stainless steel, oxygen bottles, sterile this and that … but, there he was, lying calmly on the bed playing his game as the nurses and then doctors filled the room to take his vitals and prepare for the spinal tap to follow.  How surreal of a scene, and that surrealness (if that is a word) hit me like a ton of bricks on my shoulders, forcing me to sit down beside him in his bed, really not realizing why my legs felt so heavy.  It wasn’t until I left the room after his eyelids fluttered shut that the tears threatened to spill over, and I find myself staring out the window at the passing traffic on I-74.  Everyone going on their merry way while my son is being put under to have a needle stuck in his back to remove some spinal fluid for testing and to insert chemotherapy in his CNS to keep those pesky cancer bugs away for good.  No, there is not anything “right” about this picture at all.

The quiet here in the medicine room is what I need to sit here and let my mind unwind.  Breathe deeply to build up the strength to walk back in that room once he wakes up with a smile on my face and eyes, even if that is not what I feel completely.  Damned, cancer is so hard.  Well, it is easier now than it was 2 years ago … but I feel like I am telling a lie by saying that out loud.  Is it really easier, or just a different type of hard?  Life just keeps moving along, and I am not left with the time to contemplate our journey nearly as much as I did early on.  Which is a blessing in many ways.  But, I feel like the underlying tension and stress that this diagnosis has caused will be a forever part of my life … but will just change.  We will never be free of this beast, will we?  Every year past year five (once he is considered cured) will be beyond stressful as he gets his checkups and scans down south, faced with the reality of his diagnosis of leukemia at the young age of 5.  Whew ….

I sound like such a downer, don’t I?  But, if you had to sit and listen to the beeps through the door leading to your son’s procedure room, along with a mixture of dings and dongs and muffled conversation, you might just feel the same.  But, I would never want any of you to walk in my shoes and have to endure the heartache that comes along with the diagnosis of cancer.  Not for a second …