Ordinary Days = Extraordinary Life

Wow! It has been a long time since I have posted! Part of the reason is that most of my previous writing took place in the wee hours of the night. This worked best for me as the house was quiet and it was an ideal time for me to reflect and piece my thoughts together. The fact that I couldn’t sleep also contributed to my burning the midnight oil as I wrote. Now, I’m going to bed at a much more healthier time (still room for improvement there) and during the waking hours our home is full of boisterous boys and all that comes with that. Is that awesome or what?!

This morning the house is quiet. Michael is away at college, Jon and Jeffrey took off for a weekend of duck hunting, and John is  asleep in his bed. So I write…

Last night Hastings High School participated in a Tackle Cancer Event (Big thank you to Angie McLay and her family for organizing this!). Pre game, children in our community were honored and John was one of them. Man…there I sat trying to keep it together. Seeing John on the field so healthy, confident…loving every minute of the night fills me with such gratitude. Gratitude for his health, my family, our community…for each and every day. Every single ordinary, blessed day!

John Jospeh is rocking life! He played hockey and lacrosse this summer, is loving 5th grade (The best part of his mom’s work days is seeing him in the halls!), is playing hockey again this fall and he just celebrated his 11th birthday! This October he will be 5 years out of treatment and will have his last appointment with Dr. Rawwas and will then move on to the STAR Clinic.   – STAR Clinic (surveillance and testing after recovery) – The STAR Clinic team helps patients along their survivorship journey after the recovery and wellness phase is completed. This includes yearly clinic visits, nutrition and exercise plans, and well-care education to ensure patients are equipped to embrace life after cancer therapy. –   This will be a great day, but also a sad one because John’s care with Dr. Rawwas will be complete. (There goes my grateful heart again.) Dr. Rawwas has said he will stop in and say hi during John’s annual visits. I’m holding him to that!

Our summer was great from my mom’s perspective. All the boys were home, Jon and I were able to wrangle everyone on a road trip out west with our friends, we were able to spend time at my parent’s cabin in Spooner, and we spent time boating on the river. I loved every minute of our summer!

Big guys update:

Michael is in his junior year at UW-Madison. He has moved into a different house and has settled back into his life at college. (I think that didn’t take him too long!) I believe he has declared his majors as Finance and Economics. (I loved having him home this summer!)

Jeffrey: Senior year!! I know this will go by so fast! Jeffrey was a life guard at the pool this summer. This was a great job for him and John enjoyed going swimming there when Jeffrey was working.  Jeffrey has caught the hunting bug, so now I have 2 of them to deal with at home. I wish Rylee luck with surviving Jeffrey’s hunting talk this fall!

Dad and Mom – Blessed! We both have jobs and colleagues we enjoy, our boys are happy and healthy, and we still enjoy spending time together (Most Days – Ha!).

Ordinary days = Extraordinary Life for the Gegen5

Love, Hope,  & Blessings… each and every day!




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A Little Reminder…


I am given little reminders almost daily with pictures on my Timehop app like this one, how blessed my life is. I sit her typing this post on a crisp Saturday morning, with the sun shining on the back patio with 1 big sized boy sleeping away at the college he dreamed of going to, 1 middle sized boy, who just happens to now be the tallest Gegen in our family, sleeping soundly down the hall, and 1 smaller sized Gegen boy asleep in his bed with his sheets pulled up around his neck like he always does. Oh…and there is the oldest Gegen guy and the 2 black labs tooling around the house this morning as well. What a blessed morning on Jefferson Street…normal, ordinary…perfectly, perfect. My life is blessed!

My life, our lives, could be so much different. We are all here…healthy, happy and with dreams for our futures. We are allowing ourselves to dream and the events of this past week are not going to change that one bit. The outcome of the election compares nothing to the hell our family has had to live, one thankfully most of you will never experience.  We have learned as a family, together we can face anything, that there is always hope. You all have taught us that, even in the times we thought were the darkest and we couldn’t possibly get through, we could and did, with the love and grace of our families, our friends, our community and even strangers. I choose to move forward in life with positivity, gratitude, respect, hope, kindness, and with that good ‘ol lesson from childhood…I’m taking the high road.

The future…I don’t know what the future holds for my family, me, you or your family…none of us can know or can control what tomorrow may bring, however, I can control my actions, my words, the examples I’m setting from my children, my students,  and my friends. I am choosing to live each day like the gift that it is.

Love, Hope and Blessings to you all!


Where’s the Pizza?

On big appointment days at Children’s Minneapolis,  our routine had been to stop in St. Paul at Cossetta’s on our way home. The other day John asked me why we haven’t been to there in so long. I told him it was because he hasn’t had any doctor appointments. This was met with a huge eye roll and then he was on his way.

No doctor, monthly blood work, no exams, no scans…since April! This summer is the first summer in 4 years that hasn’t involved doctor appointments, medication and scanxiety . This is the first summer in 4 years that I have a feeling of peace in both my mind and heart. Oh, I still worry, but it is not a worry that consumes my everyday and all of my thoughts. John is in such a good place. He’s happy, healthy, feisty and active. Looking at him no one would ever know the fight that little boy fought and the hell his little body endured.

This summer wasn’t filled with any extraordinary vacations or escapades, but rather ordinary family activities that could so easily be taken for granted. There were several trips to Grandpa and Grandma Prinsen’s cabin in Spooner (John and my favorite place) where he and Jeffrey fished and fished. There was one sunny afternoon where I was sitting on the end of the dock thinking about our family of 5 and how blessed and thankful we are…that I never thought we would see this day again. Just like that…it began to sprinkle. As I sat there in the beauty of the lake and all things I love, with the gentle rain washing over me…the flood gates opened and tears spilled down my cheeks. The tears weren’t of sadness, worry or guilt (Cancer parents can carry a lot of guilt…even when your child is a survivor.) They were more of a, “You all are going to be ok and it’s ok to feel that way. It’s ok to not be wracked with worry every waking moment of every day. It’s ok to look to the future. It’s ok to do what’s best for you, your kids and your marriage”…kind of tears. At that moment a wave of peace and relief washed over me and has been present ever since.

Now, I know that life can and may change in a moment. We’ve lived it! This feeling of calm doesn’t mean that I foolishly think we are in the all clear and have nothing to worry about ever. What it means for me is that it is ok to be grateful for the moment and it’s ok to look to the future with hope. What ever life deals to us along the way, we will face together.

Hope for a bright future came to our family in the form of a four legged baby girl this summer. We had been talking about getting a new puppy for quite sometime, but had put it off because…who knew what we would be dealing with down the road and we couldn’t put a puppy on top of that. This puppy was also a sign that we are continuing to push even closer to life before cancer, one that included the activity of pheasant and duck hunting for Jon (His happy, peaceful place that has been nonexistent for over 4 years.) I pushed for the puppy this summer and on July 1st we picked Bella up in Mankato. We love her tons (Well…our 13 year old lab loves her  a little.) and she has brought us much joy.


Michael: Michael has had a good summer at home working at the Hastings Aquatic Center and hanging out with his friends. He is excited to get back to UW-Madison this Friday. We will definitely miss having him around the house, but we are excited for him to begin his sophomore year.michael

Jeffrey: He participated in the hockey camp in town here during June and July. There has also been a lot of golf going on as well. Jeffrey also has a job watching 2 little boys this summer and it is a wonderful fit as the family works around his hockey schedule and are very flexible. Jeffrey

John: Running the neighborhood with his buddies is the number 1 activity! John enjoys  swimming at his good friend Brady’s house and he has also enjoyed a few afternoons at the Hastings pool. Of course, his favorite activity is fishing at the cabin. This summer he learned (more like agreed to…because I know he could do this before) bait his fishing hook and take fish off.john 1

Our summer is coming to an end and soon we will be back into the swing of the school routines. Michael as a sophomore at Madison, Jeffrey a junior in HS and John, his last year in the elementary…his 4th grade year.

John’s next appointment isn’t until October and at that time it will just be an exam and blood work.

We continue to be blessed by the love and support of our family and friends!


Love, Hope and Blessings,


PS…We’ll be taking a trip to Cossetta’s soon!


Done with Scans!

Clear/Stable Scans!! YAY!!

This past Thursday was John’s 6 months scans. October had been his last scans and prior to that he has endured them every 12 weeks since April of 2012. This 6 month span had been the longest that we’d gone without scans or the monthly visits for blood work, urine check and a physical exam. There has been so much sadness in our little Minnesota community of families fighting Neuroblastoma, I had myself worked into a full-blown tizzy the day of John’s appointments. It was the most excruciating wait for scan results to date.

The day started like all other scan days with no food for John and pills for nausea and anxiety in anticipation of the dreaded donut scan (CT scan) that gives him a horrible warm feeling, that leads to throwing up. We were dropped off to check in while Jon parked the car and on the way in John says, “I see spots.”. I tried to reassure him it was because he had come in from the sun and his eyes would adjust. Nope… he continued to see spots. Next I tried to reassure him that is must be the medicine that I gave him (This hadn’t happened before.). Next he told me he couldn’t walk straight. So now I’m thinking I gave him the wrong medicine or something…that I had poisoned him. After we got to radiology I quickly dug out the pill bottles from my purse, saying a prayer of thanks that I had actually brought the bottles along, and checked to see if they were the correct medication. Thankfully, they were. By this time I’d have to say that I had a slap happy, intoxicated 9 year old sitting beside me. Everything was extremely funny… to John…to the point that it was almost embarrassing. He was starting to come down after they IV was placed and he was totally “chill” by the time he had to get up on the CT table. This CT scan was by far the least eventful one he’s ever done. Not a peep out of the kid.


After the CT scan we texted Jon to let him know it was a piece of cake and moved on to the MIBG scan. ( Jon is always somewhere on campus, just not with us until after all the scans. This is the routine that works best for us.) Our favorite technician was there to do the scan. Lexy had scanned John at diagnosis and every scan since. What threw me off on that day was the screen that shows John’s body as it is being scanned was turned off. I’ve learned to read that thing and I know what is supposed to light up and what shouldn’t. In the past I’ve always been able to send Jon the text that says it looked good. New policy has that screen turned off, most likely to prevent moms like me thinking they can read the thing accurately. John was still in his “zen state” and I was visiting with Lexy and the other technician. They were so excited that this was potentially John’s last scan. The scan got over and I freaked…totally reading their words and body language in such a way I was convinced that they saw something! (Damn that screen being off!) My poor husband was met by a wife that was in a total panic and we had a 3 1/2 hour wait for results.

Jon is the calm to my storm in situations like this, not that he wants to have a lengthy conversation about why I think what I think, rather he reassures me over and over that John is fine. I’m in the mind thought of “What if?!!” and he’s in the mind thought of “He’s not”. It was a pretty quiet 3 1/2 hours with parents trying not to lose their @$%&, John watching a movie with earplugs in, and a little break with lunch and for an echo.

As soon as we got to our appointment with Dr. Rawwas he was able to greet us with a smile and the news that John’s scans remain stable. Relief washed over me and I was instantly able to breathe. We talked about his blood work and he visited with John. John shared with him that he’d been to a Barry Manilow concert and that he was now playing lacorsse. We discussed John’s reaction to the medication I’d given him that morning and Dr. Rawwas suggested cutting the pills in half. I suggested that parents taking such pills on the day of scans could be very beneficial, but he wasn’t buying it.

Moving forward the plan is for John to see Dr. Rawwas in 6 months for blood work, urine check and an exam…no scans. I asked him if he was comfortable not scanning John and he replied that he’s been comfortable with that for quite a while,but he was following the recommendations of COG (I think). I think we will continue in this manner for a while. I left that day feeling good about where John is and ready to tackle the next 6 months, knowing if I need anything in-between now and the next appointment in October, Dr. Rawwas is just a phone call away.

Family Update:

The boys are all doing great!

John: Played hockey this winter, lacrosse this spring, and loves playing outside with his neighborhood friends. It’s hard to believe that he is almost at the end of is 3rd grade school year. It was 4 years ago this month that he was diagnosed with stage IV high risk Neuroblastoma.



Jeffrey: Jeffrey played hockey this winter and is playing lacrosse this spring. He’s in 10th grade and even thinking it may be time for a summer job. I

Michael: He is loving everything about UW-Madison. This summer you can find him working at the Hastings Aquatic Center.


Thank you to all of you for lifting us up these past four years and giving us the courage and strength to face each day. During John’s journey there have been so many frightening, uncertain days, but even more days filled with blessings and love, because of all of you. We will move forward with faith and hope for a future filled with health and happiness for our family and all of your families as well.

Love, Hope and Blessings,





National Wear Red Day

Tomorrow is National Wear Red Day – A day to show support for women’s heart health.

Our school district has been encouraging the staff and students to wear red this Friday in support of National Wear Red Day and it finally hit me…”Hey, I’m one of those women.”. With everything that has been going on with the Gegens these past few years, I almost forgot! It is mind boggling for me to think that my heart health crisis my family faced was already 9 years ago (a little more). Where at one time my heart had been constantly on my mind…with the journey our family has been on with John these past almost 4 years, it has taken a back burner. 

John was born on September 16, 2006. Nine days later I was diagnosed with Peripartum Cardiomyopathy (heart failure due to pregnancy), taken by ambulance to United Hospital and admitted into cardiac intensive care. I had never heard of peripartum cardiomyopathy. Here is the American Heart Associations information on the condition:


What is peripartum cardiomyopathy?  

Peripartum cardiomyopathy (PPCM), also known as postpartum cardiomyopathy, is an uncommon form of heart failure that happens during the last month of pregnancy or up to five months after giving birth. Cardiomyopathy literally means heart muscle disease.

PPCM is a dilated form of the condition, which means the heart chambers enlarge and the muscle weakens. This causes a decrease in the percentage of blood ejected from the left ventricle of the heart with each contraction. That leads to less blood flow and the heart is no longer able to meet the demands of the body’s organs for oxygen, affecting the lungs, liver, and other body systems.

PPCM is rare in the United States, Canada, and Europe. About 1,000 to 1,300 women develop the condition in the U.S. each year. In some countries, PPCM is much more common and may be related to differences in diet, lifestyle, other medical conditions or genetics.

How is it diagnosed?
PPCM may be difficult to detect because symptoms of heart failure can mimic those of third trimester pregnancy, such as swelling in the feet and legs, and some shortness of breath. More extreme cases feature severe shortness of breath and prolonged swelling after delivery.

During a physical exam, doctors will look for signs of fluid in the lungs. A stethoscope will be used to listen for lung crackles, a rapid heart rate, or abnormal heart sounds. An echocardiogram can detect the cardiomyopathy by showing the diminished functioning of the heart.

PPCM is diagnosed when the following three criteria are met:

  1. Heart failure develops in the last month of pregnancy or within 5 months of delivery.
  2. Heart pumping function is reduced, with an ejection fraction (EF) less than 45% (typically measured by an echocardiogram). EF is how much blood the left ventricle pumps out with each contraction. A normal EF can be between 55 and 70.
  3. No other cause for heart failure with reduced EF can be found.

Laboratory blood tests are a standard part of the evaluation. This includes tests to assess kidney, liver and thyroid function; tests to assess electrolytes, including sodium and potassium; and a complete blood count to look for anemia or evidence of infection. In addition, markers of cardiac injury and stress can be used to assess level of risk.

Symptoms of the condition include:

  • Fatigue
  • Feeling of heart racing or skipping beats (palpitations)
  • Increased nighttime urination (nocturia)
  • Shortness of breath with activity and when lying flat
  • Swelling of the ankles
  • Swollen neck veins
  • Low blood pressure, or it may drop when standing up.

The severity of symptoms in patients with PPCM can be classified by the New York Heart Association system:

Class I – Disease with no symptoms
Class II – Mild symptoms/effect on function or symptoms only with extreme exertion
Class III – Symptoms with minimal exertion
Class IV – Symptoms at rest

What are the causes?
The underlying cause is unclear. Heart biopsies in some cases show women have inflammation in the heart muscle. This may be because of prior viral illness or abnormal immune response. Other potential causes include poor nutrition, coronary artery spasm, small-vessel disease, and defective antioxidant defenses. Genetics may also play a role.

Initially thought to be more common in women older than 30, PPCM has since been reported across a wide range of age groups. Risk factors include:

  • Obesity
  • History of cardiac disorders, such as myocarditis (inflammation of the heart muscle)
  • Use of certain medications
  • Smoking
  • Alcoholism
  • Multiple pregnancies
  • African-American descent
  • Poor nourishment

How can PPCM be treated? 
The objective of peripartum cardiomyopathy treatment is to keep extra fluid from collecting in the lungs and to help the heart recover as fully as possible. Many women recover normal heart function or stabilize on medicines. Some progress to severe heart failure requiring mechanical support or heart transplantation.

There are several classes of medications a physician can prescribe to treat symptoms, with variations that are safer for women who are breastfeeding.

  • Angiotensin converting enzyme, or ACE, inhibitors – Help the heart work more efficiently
  • Beta blockers – Cause the heart to beat more slowly so it has recovery time
  • Diuretics – Reduce fluid retention
  • Digitalis – Derived from the foxglove plant, it has been used for more than 200 years to treat heart failure. Digitalis strengthens the pumping ability of the heart
  • Anticoagulants – To help thin the blood. Patients with PPCM are at increased risk of developing blood clots, especially if the EF is very low.

Doctors may recommend a low-salt diet, fluid restrictions, or daily weighing. A weight gain of 3 to 4 pounds or more over a day or two may signal a fluid buildup.

Women who smoke and drink alcohol will be advised to stop, since these habits may make the symptoms worse.

A heart biopsy may help determine if the underlying cause of cardiomyopathy is a heart muscle infection (myocarditis). However, this procedure is uncommon.


I was experiencing almost all the symptoms listed during my pregnancy. What makes it so difficult is that they are similar to many pregnancy symptoms. As my symptoms worsened, I contributed that to the fact that I was 36/37 when I was pregnant with John, ten years older than when I was pregnant with Michael.

By the time I was admitted to the hospital I was at Class IV – having symptoms at rest. My ejection fraction was at 15%, where a healthy heart is around 60%. So there we were with a brand new baby and two little boys at home, scared to death, with doctors talking to us about life expectancy and a possible heart transplant down the road if my heart didn’t heal. In those first few days I remember agonizing over the possibility of Jon having to raise our three boys without me and I felt tremendous guilt.

There was a whirl-wind of information and a lot of medication. I remember being in that bed, my infant son and 3 boys at home, feeling so weak, so sad, with ice packs on my chest too because I was told that I couldn’t breastfeed or even pump because of my medication. The blood pressure machine would go off every 15 minutes and during that time, I would do the slow deep breathing exercises I learned in childbirth class all those years earlier and try to “will” my blood pressure down.

I was at United for around 7 days and sent home with all my medication, homework of cardio rehab, and feeling overwhelmed by my unknown future.I remember stopping at Target on the way home (Never to sick for a Target run!) and being so weak I felt like I was walking at a slant.

Not surprisingly, our wonderful families, friends and community rallied around us and carried us through.(This seems to be a theme we are all very grateful and blessed to have.) The short version of my healing is that I was on medication for about 1 1/2 years, was weaned off of meds and I GRADUATED from the heart clinic, which I am told is very rare. My ejection fraction is back up in the normal range and I am considered to be 100% healed!

Tomorrow I am wearing red, Jon is wearing red, I think I can get Jeffrey to, and I need to get a hold of Michael. John…he’s fighting me. I set out a very nice red sweater and he told me, “There is no way I am wearing that thing! I will look like a pilgrim!”. He wants to wear his Wild jersey, which is red, but it just so happens he is supposed to wear something a little nice for his choir concert tomorrow. To him a Wild jersey is WAY nicer that a scratchy ol’ red sweater.

I hope to see a lot of red tomorrow!!

Hey – a side note: I thought I was 47, but in writing this blog tonight I realized I am 46! Oh Happy Day!!


Clear Scans!

John faced the past two days with a casualness and calm that I am in total envy of. We rejoice with the news that his scans are all good once again. Dr. Raawas informed us that following COG (Children’s Oncology Group) recommendations, that John will next be seen in 6 months for scans and a physical. After that it will just by bi-yearly urine tests that test for cancer markers. He reassured us that if we ever have concerns that we can bring John in, they can do urine tests, Children’s is there for us. It was hugs all around as we left today…and a few tears.

While talking to my parents this evening they asked me, based on my last post, if going into scans this time was extra difficult. I told them no, those feelings are there every single time as we head into scans.(These feelings seem pretty mutual among the other cancer parents I know as well.) I just put it out there for everyone to see this time.  I worry when I do put “it” all out there because I don’t want to upset anyone, but those feelings are my reality.

Our plan had been to get through scans and hit the road for Madison to visit Michael, watch him play a little lacrosse, to celebrate good news. Well….when we got home on Thursday from Children’s John had pink cheeks, a runny nose and a cough. Not so perfect timing with scans. We decided we would not leave on Friday like we originally planned, but to wait and see how John was this morning. He seemed much better and he did have an exam that day, but no throat culture as his throat looked ok.  We now were planning on leaving Saturday morning. Around 7 tonight John came up to me and told me he had a headache. He never has a headache so I decided we better run in for a strep test. We had to go to Woodbury and he tested positive right away. There is a much longer version of this story here, but the doctor and I were not seeing eye to eye on what kind of medicine……and too bad for him I hadn’t eaten a thing since 11AM and I had found my “voice” for advocating for my son a long time ago. When we finally left and we were walking out John told me that he didn’t think the doctor liked me. My response, “Ya, well….you don’t mess with John Gegen’s mother and if this isn’t the right prescription when I get to the pharmacy, we’re calling and getting the one I asked for.” It wasn’t the correct one. I went home with what I had requested, with what has worked for John the past two times after first having to go through 10 days of a drug that didn’t work for him.

So we are not going to Madison. John was heartbroken and angry. I was/am bummed and while part of me wants to just pack up and go anyway, I know that’s not the right thing to do. While it is disappointing, I know we have so much about today to be thankful for and we will plan a different weekend for our visit.

This week has been exhausting and I can’t wait to climb into bed! Thank you again for all your support, prayers and kind words. Team John has always Rocked!

The Gegens will keep on keeping on…taking one day at a time….and try to look forward with hope and not in our past at our fears (Wish me luck with the last one! 😉 )

With my heart full of GRATITUDE…Love, Hope and Blessings,


End of Treatment Scans this Thursday and Friday

dont worryWow! Here we are. It’s already been 12 weeks since John’s last scans ( It is absolutely crazy how quickly 12 weeks fly by!) and the somewhat of a finish line is in sight. For the past 1, 281 days of John’s life, of our lives as parents, we have endured the brutal roller coaster of scans EVERY 12 weeks. No matter how much I tell myself to “buck up”, get a grip, to breathe or remind myself how much we have to be thankful for …it never gets any easier. Never and I believe this is true for all families that have been through the hell of cancer. Why? Because we know that our lives can be turned upside down in an instant. Because we’ve lived that nightmare and we silently beg and plead for cancer to stay away.

They cycle of scans and the events that accompany the 12 weeks seem to remain pretty consistent in our home. We leave the most recent set of scans with great results on a high. Yay! We can breathe a little easier. We go about our lives as normal as they have ever been. Weeks fly by and now it is closer to scan week (UGH!). Without fail, John will complain that his leg hurts and while I am cool as a cucumber on the outside, (“Remember….you skated a lot tonight or jumped on the trampoline or I saw you sitting on your knees while playing Xbox…”) In my mind it’s pure panic, (“Is it cancer? it’s not cancer. He looks great. Sure he looks great, but he had leg pain at diagnosis. Just calm down. Don’t make a big deal about it to John and then he’ll stop saying his leg hurts. What are we going to do if…”, over and over.

This time we had some added excitement with the teeniest of bruises to his eyelid. (Other Neuroblastoma parents know where this line of thought is going.) Bruises around the eye are a sign of relapse in the brain. I had that kid closing his eye so often so I could examine that speck, I’m surprised it’s not permanently locked at a half blink. When I finally couldn’t stand the voice in my head saying, “Is it? Has he relapsed? Are we going to be going to New York for treatment?”, I told my husband my fears. I believe his response was, “What the hell are you talking about?” Ahh….the voice of reason, not that I didn’t have him all jacked up too and he was now also participating in the several times a day eyelid inspection of our irritated 9 year old son. The speck….all gone. it was a bruise and I probably took yet another year off of my husband’s life expectancy with my irrational thoughts.

And…last week John woke with a stomach ache and had diarrhea. The flu right? Not in my mind…,”He had stomach problems when he was diagnosed, weeks leading up to his diagnosis, didn’t he throw up in Dad’s car at the church in Green Leafton?…” (And yes… it is all one rambling thought.) Then a few days later Jeffrey gets the flu and (I’m so sorry I am admitting this Jeffrey and I love you tons.) and the ticker tape of pathetic thoughts is in full force, “Good Jeffrey has the flu, so that means John did have the flu, which means he hasn’t relapsed, he just has the flu, we’re all good here.” Seriously? Yes, cancer has driven me to a place where I find relief and comfort in one son’s illness as it gives me peace of mind for my other son. How backwards is that?!

My mind….it is EXHAUSTING! Every normal childhood complaint, in my mind, is a road back to the hell of childhood cancer. These thoughts can make the most rational person crazy and at times….batshit crazy. Now that is some real crazy.

Guess what week this is? Bingo! Scan week…and a big one at that. Tomorrow (Thursday) John will have a CT scan, an injection for Friday’s MIBG scan and a hearing test. Friday is MIBG scan and an END OF DFMO TREATMENT exam with Dr. Raawas!! If all goes well (Rational Shelly feels it will) scans will officially move to every 6 months (that’s the some what of a finish lie part. Done with DFMO, but never really done as he will continue to receive scans and be under the watchful eye of Children’s).

So tonight I can’t sleep, my head is pounding and I’m not looking forward to the donut scan (CT scan…John says it looks like a donut). I know from past experience that even though I will have given him Ativan for anxiety and Zofran for nausea,as soon as they start pushing the contrast in he is going to become very upset, extremely anxious, his stomach will hurt and he will throw up. He knows this is going to happen and yet walks in willingly every time. I wish my mind had the courage and composure of John Joseph.

Even with all the crazy mind games I play with myself, I know now clearer than ever, how grateful we are to have had the opportunity to have John on the DFMO trial…to give our child a fighting chance to live the life he deserves….to give us hope for the future. Jon and I are are so thankful to all the nonprofits groups like Beat NB and Because of Ezra, that have helped to fun research by the NMTRC (DFMO trial). Research that is dedicated to finding a cure for childhood cancer.

For the first time since April 6, 2012 John will be off of treatment. No daily medicines. No monthly doctor appointments with labs and urine tests. Just living the life of a 9 year old boy. The thought of it is both exciting and terrifying. Crazy stuff…

Love, Hope, and Blessings,