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:

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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.

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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,

Shelly

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,

Shelly

DFMO = D-O-N-E!!

Today is a very special day here in the Gegen home. Tonight John took his very last dose of DFMO!

The Last 3 DFMO pills

The Last 3 DFMO pills

For over 2 years he has taken 3 pills in the morning and 3 pills at night with the goal of keeping him NED (No Evidence of Disease). We have driven to  Children’s Hospital in Minneapolis for monthly lab tests and urine analysis. Every 12 weeks we have endured the roller coaster of emotions that come with scans….and now here we are tonight. I knew this day was coming, but still it didn’t seem real, I must be mistaken. Yesterday, I sent out an email to John’s awesome nurse questioning whether it was really the last day. She quickly responded  yes and sent me an encouraging message (She always seems to know when I need one.). There I sat at my desk, after school, with tears streaming down my face. It wasn’t a sobbing cry…just that dang stream of steady tears I couldn’t stop.

The tears – I knew why they were there…

Tears of Gratitude – To John’s wonderful team at Children’s who’ve fought to get him where he is today, taught us what we needed to do, and encouraged us when we needed it the most. Today our son is a happy, healthy, rowdy, athletic almost 9 year old, with an energy tank that does not quit!

Tears of Change  – Our relationship with John’s team is now changing. During John’s initial treatment from April 2012 to May 2013, it felt like he was in the hospital more than he was home. Since August of 2013 John has had those monthly visits and 12 week scans. Every month we saw Dr. Rawwas and Cindy and they reassured us that John was doing well, calmed my Mom nerves and sent us on our way refueled to face the next month. I flat out asked Dr. Rawwas at a recent visit what I was going to do without seeing him every month and he told me that he is just a phone call away. As long as things are going well there are no more monthly visits and scans move to every 6 months! John will have his end of treatment scans in October and nothing until April!

Tears of…., “It’s  scary being off of treatment” – We decided to place John on the DFMO clinical trial because of the high risk for relapse for kids with Stage IV Neuroblastoma (50%…..35% being in the first 2 years).  Of all John’s treatments for cancer DFMO has by far been the easiest, with minimal side effects. (I am anxious to see if his hair will thicken and eyelashes grow back. John used to have the most beautiful long brown eyelashes.) It gave us some peace in our minds and hearts. Now we’re flying solo on a wing and a prayer. Ok….far from solo, but you know what I mean. Dr. Rawwas has told us several times that with John responding so well to treatment and being so far out now, that he believes that he is going to continue to thrive.  I imagine for the rest of our lives we will be fearful to some degree.

There you have it and it is awesome news! The fact that John is where he is today is truly amazing and a blessing. Sometimes I look at him and I am just in awe. To think how terribly, terribly sick he was…to where he is today…Awesome, Awesome, Awesome!

 

I haven’t posted in such a long time because our family routine has been as normal as ever. My writing has been about John’s journey, our family’s journey and I see that shifting once again with the scans moving to every 6 months. You don’t need or want to hear about our day to day lives, but I will fill you in in October with scans and then hopefully not needing to again until April scans. Who knows…I may throw something in between there.

I can’t thank you all enough for going on this journey with us. We are filled with gratitude for each and everyone of you and so thankful for your support. You’ve been there from our darkest days, to our most triumphant hours, to the peace of the most normalcy we’ve had in years. You have blessed us.

Before I sign off for a while, I want to give you a family update in pictures:

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We are blessed.

 

Love, Hope and Blessings,

Shelly

 

That Time Again – Scans!

We made through another set of routine scans! Last Thursday we learned all is still well with John! We are so thankful! Prayers answered!

There were a few bumps along the way that day…. a result of me. When we go to the clinic on scan day we are supposed to take a sample of John’s first morning pee. They use this to check for Neuroblastoma markers and a portion is sent to Michigan for the DFMO study. John woke up a 5, told me he was going the bathroom. It wasn’t until he walked back through my bathroom that it dawned on me that I screwed up. When I mentioned it to John he said, “It’s not my fault, I told you I was going to the bathroom.”. Yes, yes he did.

Once we are at Children’s our regular routine is put into motion. Jon drops John and I off and the 2 of us go get the scans done (I’m not 100% sure where Jon goes. I just know he’s a text away if I need him.).MIBG scan is first. John’s all set up…he’s in position, feet are taped together so he won’t move, his movie is playing, the scan in scanning. 5 minutes in…I bump the machine causing it to “lock up”. I was mortified! I was worried about getting John’s scans, other patients being able to get their scans, screwing the schedule up.. UGH! We had to wait for 20 minutes to see if it could reset and proceed with the scan. Nope – We were still able to get the pictures that were needed but it was more work for the technicians and more time on the table for my less than thrilled 8 year old son.

Next we move onto CT where he first gets an IV placed in his arm for the contrast. The nurse doing it was being really kind, but talking to much to John and that was stressing him out. She was asking him if he wanted to feel his vein…that is was like a wet spaghetti noodle. He wasn’t liking that. He’s more of 3-2-1 poke get it over kind of guy. IV in place and on to the scanning table. I was nervous because John threw up last time because of the contrast and it proved to be unpleasant again this time. John didn’t throw up, but he cried, didn’t sit still and maybe said a few bad words. The technician made a comment that John may need to be sedated next time. We don’t want that to happen! We’ve gone nearly 3 years with this scan and it is quick if he feels ok. After going over the situation with Dr. Rawwas, we are going to try Zofran next time for the nausea and Ativan for anxiety. I suggested that maybe all 3 of us should take the Ativan.

3rd Stop was the hearing test. John’s hearing remains the same as last time.We were glad to see that it hadn’t decreased and  we remain hopeful that it will improve some when he is off of the DFMO.

After lunch John had his appointment with Dr. Rawwas at the clinic. That is when we were told all is well. There are spots of sclerosis on some of his bones where cancer had been, but Dr. Rawwas explained to John that these are not harmful and that they are like a scar you can get on your skin.

The manufacturer for the DFMO pills recently changed and John agreed to participate in a study a that required he stay 6 hours longer at the clinic that day while he had 5 different blood draws done (out of the IV that was placed for the ct scan) to see how his body broke down the old DFMO pills. We had to hand over all our remaining DFMO and we were given the new ones, from the new manufacturer. On Thursday we got to the hospital at 8 in the morning and left at 8:05 that night! It was a day! John went back up today to do another 6 hours with 5 blood draws with the new DFMO in his system. He’s had enough of the clinic for a while.

I forgot to mention that during that 6 hours of hanging out for blood draws John had a physical therapy evaluation. The therapist told me she doesn’t think she’ll even need to see John again! He tested in the normal to normal-high range in all categories and his ankles are twice as strong as the last time she tested them! Exciting news…it must be all that hockey he’s been playing. John was very proud of his results!

In 12 weeks we’ll do it all over again, minus the extra blood draws. It is crazy how quickly 12 weeks can fly by.

john iv john blood draw

The week prior to scans our family went on a road trip for spring break all the way to Florida! That quality family time deserves a post of its own. I’ll work on that soon!

Gegen Family Updates:

The official hockey season is over but Jeffrey dabbles a little in hockey by participating in a 3 on 3 league and John is skating in a skills clinic that puts him on the ice twice a week. (Keep moving those legs!)

The lacrosse season officially began today with the start of try-outs for Michael and Jeffrey. I really dislike try-outs. I get it, but I still don’t like them.

The BIGGEST news….drum roll…….Michael applied and was accepted at University Wisconsin- Madison. We would’ve of been proud of wherever he chose (His parents are SCSU alumni after all… and I like to tell him if it wasn’t for St. Cloud State….there wouldn’t be a Michael because that’s where his mom and dad met. That always grosses him out…a lot!), but Madison was his #1 choice and he worked very hard to accomplish the goal of being accepted. I can get pretty sad when I think of him leaving and our family dynamic being forever changed. This too feels like a need for a post of its own.

badger m grad

One more: John and I celebrated our 20th wedding anniversary last week. It is truly astonishing how time goes by so fast, so very, very fast.

We are healthy. We are happy. We are busy. We are blessed!

Love, Hope and Blessings,

Shelly

Merry Christmas, Happy New Year and Clear Scans!

Merry Christmas and Happy New Year from the Gegen family! I am sorry that I didn’t get Christmas cards out this year. It just didn’t happen and I had to let it go. We enjoyed all the wonderful cards we received and I hope to be back on track next year with them.

2014 has been a very good year for us! The year did still consist of monthly clinic visits and 12 week scans for John, but we were as close to normal as we’ve been since April 2012.  All 3 boys played hockey in 2014, we took the train to Chicago for spring break, many weekends were spent having fun in our cheap charlie boat at my parent’s cabin in Spooner or on the river here near Hastings, and we even got up to Walker for some end of the summer fun(No RV this trip!)..just to name a few of the activities we enjoyed during 2014.

We closed 2014 out with John’s most recent set of scans. Yep…on December 31, 2014 we found ourselves once again at Children’s Hospital and Clinics, Minneapolis. I would like to say that John was “rockin'” going into these scans…healthy, no complaints of pain, nothing setting off warning bells. So why did I find myself a COMPLETE MESS?! CMS had returned – Crazy Mom Syndrome – and it sent me into a whirling, twirling downward spiral.

Wednesday…..I put on my best game face and up to Children’s hospital the 3 of us went. When I told John the MIBG scan was first he said, “Easy peasy”. That favorite gal is there!  That was over, my untrained eye didn’t observe any “hot spots”, and we were on our way to the next scan. The donut scan (CT scan) not so easy because he doesn’t like the feeling the contrast gives him and on this day he got sick during the scan. I think it had to do with the fact that they had yanked his jersey up and around his neck, taping part of it by his head to keep the rivets (metal circles) out of the CT scanning path and in the process making it tight on his neck. We’ll remember to take it off next time.

We were able to leave the clinic that day knowing John’s scans were all good…a tremendous weight lifted off our hearts, with energy to gear up for the next set of scans in March (March already!!)

I know I haven’t been posting that often. No news is good news! This means our days are mostly filled with the same routines as everyone else. So if you don’t hear….don’t worry. That just means I’m at a hockey practice, a hockey game, or running here and there with the kids. Who knows….maybe I’m even trying to get to bed at a more reasonable time! It means John is fabulous! I will still post occasionally to keep you posted on John and our family.

We are so grateful for all the love and support we have had showered down on us these past 2 1/2 + years. Thank you for helping us to keep on keeping on!

Happy New Year!

Love, Hope and Blessings,

Shelly

Update: In my last post I mentioned that that Child #1 had hung up his skates…change of plans. We are back to all 3 participating in the BEST SPORT EVER! :)

John: Spreading Awareness

September was Childhood Cancer Awareness month and our friend Caitlin Nickel had a fundraiser through her business to promote awareness. Through the generosity of  Caitlin, our families, and my friends and colleagues from the Hastings schools, Caitlin was able to order and fill thirty-one brand cinch sacs for every room on the oncology floor of Children’s Minneapolis! The bags were filled with activities, toys and crafts. They were a huge hit here at the Gegen home as all three boys thought they were pretty cool!

A very proud John Gegen pulled a wagon full of these cinch sacs through the hospital to the Welcome Desk where he dropped them off. While John wanted so badly to take them right up to the 7th floor, he understood the visitor restrictions and that they are in place to keep the patients safe. A little problem occurred when he realized that he had to surrender the cinch sac he was wearing. After a brief explanation that if we didn’t give that one too, one room would be without a bag, he handed it over without a fuss. I have to admit….having John take that off of his back tugged at my heart like crazy! (It’s a good thing I put in an order to Santa for an identical bag!)

Thank you, thank you to everyone that helped Caitlin make this wonderful gift possible for those kiddos fighting on the 7th floor!

Today on Face Book I saw John’s face on 2 different posts. One was for Children’s Hospital and Clinics and the other for a wonderful organization called Because of Ezra. We are forever grateful to both…for what they have done for John and how they’ve touched our lives. You can click on the links below to take a look.

http://www.childrensmn.org/blog/kidshealth/2014/12/meet-john/

 

If you have clicked on the previous links from Because of Ezra you will have seen some of this footage, but there is also new footage. :) This is John’s story…our family’s contribution to help raise awareness.

When I watched John’s video today…the tears streamed down my face. Hmmm….was it that pretty music, the images of my healthy John, or the snaggle-tooth in that 7 year old mouth? No it’s the desperation in a mother’s voice and on her face (around the 3:23 mark). The constant worry is like a dark cloud that is forever looming. I thought the worry would lighten some…but it obviously hasn’t. I’m a work in progress. :)

http://becauseofezra.org/why/john-gegen/

 

We’ve been busy here at home. Jeffrey and John are playing hockey while Michael decided to hang up his skates this year. Mom and dad had to get over that as Michael is pursuing his new interest of snowboarding. (There’s only been one ambulance ride from the slopes to Hastings and since then we’ve established guide lines for injuries that would warrant a ride in the back of an ambulance. I told Michael he should have stuck with hockey…)

We had a very nice Thanksgiving in Rochester at my parent’s house. I always enjoy seeing my brothers and their families as we don’t see one another often. Michael and Jeffrey found my great nephew  Lincoln entertaining and I hope they didn’t teach him any new “tricks” or words while they were in the basement playing Play Station! I know at one point they were telling him my name was Shelster..they are always so helpful.

Little John Gegen is full of the Christmas spirit. His love of the holidays even had his dad stringing lights up on the house! John’s elf on the shelf has been very busy causing mischief  in our home. Last night it toilet papered all 3 of the boys’s rooms while they were sleeping and the night before a bunch of wrestling guys got strung up on the Christmas tree. I love the twinkle in John’s eyes and his pure innocence when it comes to a few holiday traditions. :)

I hope you all had a blessed Thanksgiving with your loved ones. We are always and forever grateful for each and every one of you!

Love, Hope and Blessings,

Shelly