3 more days until March 8, 2012.  3 more days until the anniversary of Jack’s diagnoses.  3 more days until Comedians for a Cure.

It will be 2 years since the awful night when Jack was diagnosed with Stage IV Neuroblastoma and for some reason it feels as if so much more time has has passed than just 2 years.  Jack went through so much in the first year and a half that it really slowed time down.  Now, 10 months post treatment, and that day of diagnoses seems like a century ago.  We are so thankful that this year we get to celebrate Jack’s survival and not morn over the fact that he has cancer.  This year we get to go to bed that night knowing that we made a difference in the world of childhood cancer.  This year we get to be with people who support our mission and who want to help.  We get to be with people who believe in Jack and all of the other children who have and will be diagnosed with this awful disease.  This year, Jack’s anniversary of diagnoses will be a day that we want to remember instead of a day that we wish we could forget.

While it is “crunch” time before the event, it is more exciting than stressful.  We have been busy putting last minute details in to the event and I am sure it will be like that up until show time.  I have been told that many people are just going to buy tickets at the door and that is just fine but I would like to encourage you to buy your tickets online or by calling Stand Up Live before hand so there will not be a wait at the door and so we have more of an accurate count for dinner!  Just a little reminder that it is very easy to buy tickets…click on the link at the top of the page or call Stand Up Live at 602-719-6100.  If you are buying 2 tickets instead of 1, let them know the code “cure” and  you can have 2 for $115.

For those who have already bought tickets…thank you so much!  We look forward to seeing you in just a few short days!!!

Here we are, already 7 days away from Jack’s next set of scans.  It is hard to believe that 3 months have passed since his last scans.  This time the actual scan days will go a bit faster since we don’t have to do the bone scan and it is also really nice that he only has one day of being under anesthesia.  We did add a x-ray of his foot on Wednesday to see how his little broken bone is healing but I imagine it will be just fine.  He says it doesn’t hurt at all anymore and he would rather take the boot off and run around but we obviously aren’t letting him!

In these days approaching scans I tend to get pretty stressed because of the overwhelming anxiety of  ”what if” but I try to push those aside with the words “no evidence of disease”.  I am trying to stay positive and keep my prayers going.  Zac will be home for scans next week and that is always good because he has always been constant with his positive outlook on Jack and that’s nice to be around!

Of course we are staying busy with the in’s and out’s of having two young boys and planning a charity event!  There are some AMAZING donations coming in for silent auction and raffle so you better buy your tickets now!!!  You can follow the link at the top of the website to go to Stand Up Live’s page and purchase your ticket.  If you want to buy 2, call Stand Up Live DIRECTLY and tell them that you want to 2 ticket special for the night and you will get 2 for $115 instead of 1 for $65.

Stand Up Live’s number is 480-719-6100

Our family obviously takes raising awareness and funds for Neuroblastoma research very serious because off of Jack has gone through.  It still seems like a awful dream sometimes when we start thinking and talking about the moment we found out that Jack had cancer.   We knew that we wanted to do something to help and raising money for research is one of those ways.  We never knew before how little funding childhood cancer really gets until we were thrown right into the thick of it.  Over the past couple of years I have either met in person, over the phone, through emails or blogs many other families that had to hear the words that Zac and I did, “Your child has Neuroblastoma.  There is no knows cure but we will do everything we can to make him better.”

We want to introduce you to some of these children who are fighting Neuroblastoma, those who have beat Neuroblastoma, and those who have lost their battle with Neuroblastoma.  We want you to know that this doesn’t just affect our family but this affects so much more.  We want to help find a cure for Jack and for all of the other children who have been affected.  Unfortunately childhood cancer is a reality. If we cannot erase Neuroblastoma, we want to change that moment when a parent hears the words, “Your child has cancer”…we want it to be followed by, “we have a cure”.

Please take a moment and meet Alex.  After we were on the Today Show I received an email from Alex’s Grandma and have kept in contact with Alex’s mom, Katie, since then.  Here is Alex’s journey…please keep this beautiful little boy in your prayers.

Alex has always been known as fun loving, energetic, and “all boy”. On April 15, 2008 he was born without any complications. He met all of his developmental milestones early. By the time he turned one, he was known as a future linebacker by family and friends because of his toughness. He loved playing rough and had no fear in anything he did. Looking back we never thought our precious little boy could have a tumor inside him.

Two months before Alex’s 3rd birthday, he started getting tired easier. He had had a couple of ear infections that year and we assumed his change in energy level was due to another one of these. After a visit to the pediatrician, we were told he was healthy and there was nothing to be concerned about. A few days later, Alex developed a small rash on his cheek and it went away the next day. A couple days later, we noticed he had a droopy eyelid. Our gut was telling us something was not right, but we didn’t want to be those parents that overreacted and ran to the doctor with every little thing, especially since we had recently been there and they said he was fine. We decided to talk with a pharmacist about the droopy eyelid. We were told that it was most likely an allergic reaction and left the grocery store with some Claritin. Two days later his eye had completely cleared up.

We celebrated his sister’s first birthday with family in the middle of February. Alex was unusually clingy to us at her party when usually he’s all over the place playing with his cousins at these functions. Even some of our family members commented on how quiet he had been. This made us a little more concerned. A few days later, he began getting fevers and developed a subtle limp that would come and go. The fevers were worrying us. We would ask Alex if anything hurt and he would point to the middle of his forehead. We thought he had another ear infection and made another appointment with our pediatrician. The doctor told us Alex was sick with a sinus infection and prescribed an antibiotic. After several days of being on the antibiotic the fever was not going away. It would ramp-up in the evenings and be gone by morning (later we would come to find out that this was the pattern of his “tumor fever”.) After allowing adequate time for the antibiotic to run its course, we made another appointment with our pediatrician. At the pediatrician’s office they did blood work and it came back that Alex was anemic. Having the fever for so long and the anemia were concerning to our pediatrician. The doctor also did a physical exam and thought Alex’s spleen felt enlarged. We were told to go to a children’s hospital after they determined they ran all the tests they could. Later that day we ended up at Helen DeVos Children’s Hospital in Grand Rapids, Michigan.

We spent the first two days at DeVos getting numerous tests and answering the same questions by many different doctors. Mono, a severe case of the flu, rheumatoid arthritis, and leukemia were all possible illnesses we were told he could have. Test after test came back negative. While the doctors tried to figure out the puzzle, Alex began limping again. This time it was very noticeable. He also started getting the droopy eyelid back and it looked like he had a bruise over his left eye. These two symptoms, along with his blood work and fevers made the doctors think to check for neuroblastoma. On March 14, 2011 Alex’s urine test showed he had elevated levels of catecholamines, indicating he most likely had neuroblastoma.

The CT scan confirmed this and it showed a tennis ball size tumor on his left kidney by his adrenal gland. Later that evening, we met with a surgeon. He was confident he could remove the entire tumor and scheduled Alex to have surgery the next day. After a 3-hour surgery they were able to remove the whole primary tumor. We were thrilled with this news. However, a bone marrow biopsy told us that the cancer had spread to many parts of his bone marrow, making his condition stage IV.

At the end of July we completed the induction phase of the COG protocol, which is 6 rounds of chemotherapy. The next step in Alex’s treatment was a stem cell transplant. We already had Alex’s stem cells harvested, met with the Bone Marrow Transplant team, and had a date set for the middle of August to begin. Two weeks before our transplant date Alex had scans and tests. Those showed his body did not respond to chemotherapy. He was considered refractory. His bone marrow still contained 15-20% of neuroblastoma. Our oncologist took him off protocol and we were unable to have a stem cell transplant like we had planned. 

 We began exploring other treatment options and decided to go to Memorial Sloan-Kettering Cancer Center in New York. We talked with Dr. Kushner, one of the oncologists who specializes in neuroblastoma, and he suggested we get Alex started on some low-dose chemotherapy. Our oncologist at our local hospital and Dr. Kushner agreed that irinotecan and temozolamide would be a good combination to try. We did two cycles of the low-dose chemotherapy and then went to Sloan-Kettering to get scans and meet Dr. Kushner. Dr. Kushner recommended we try a study that involves natural killer (NK) cells. NK cells are a type of white blood cell that recognize and kill abnormal cells in the body. We were excited to give this study a try but a scheduling conflict delayed the start of the treatment. We would have to wait 4 weeks before we could begin. In the meantime we continued 2 more cycles of the low-dose chemotherapy. 

 In November, we were ready to begin the NK study. A week before starting we had scans and a bone marrow biopsy. The scans showed a significant decrease in Alex’s disease. Dr. Modak, the oncologist who heads up the NK study at Sloan-Kettering, decided to keep Alex on the low-dose chemotherapy, since his body was responding to it, and delay the start of the NK study. Alex’s bone marrow also showed a decrease in disease.

 As of today, we have done 3 more additional rounds of irinotecan and temozolamide. Alex’s scans in January showed that his disease has remained stable since November. His bone marrow, however, is now clear! This February we’re planning on beginning the NK study with immunotherapy. 

 Alex has adapted well to everything and is a real trooper. He continues to amaze us with his energy level and his overall love for life. We stay very optimistic and have faith that he will beat this. We look forward to the day when a cure for this terrible disease is found.

You can read about Alex and his updates at http://www.carepages.com/carepages/MANDARINO

Thank you!

Well it happened…the cold/flu has hit our house.  Ughh.  Jack came down with a cough last night that has moved in to his throat and now a fever of 102.  Of course  I tend to freak out when Jack gets sick now more than I did before but I realized that wasn’t the best thing. When I was taking his temperature for the 10th time in a 40 minute time period Jack asked me, “Do I still have a fever?” I told him he did and he said, “Does that mean I have to go?  Do I have to go to the hospital?  Last time I went they had really weird shows on and Daddy and I had to wait for a really long time.  I don’t want to go.  I feel fine.”  Oh great.  Now I am freaking him out.  So I thought to myself, in my best Dr Phil voice, “How is this working for you?” How is is working being so paranoid?  Not so good!  So, I have decided to calm down.  (I can can just see my family and friend smirking now!) I will not get freaked out this time.  Jack has a cold.  A touch of the flu maybe.  He will be FINE!

So he is next to me now, having a popsicle and singing some “gummy bear” song that he learned from his cousin and watching Mario Brothers on the IPad while trying to eat pretend mushrooms like Yoshi does.  He will be fine, but it does stink just a tad that he is getting sick.  I just really hope Braden deosn’t get it too!

Hopefully I will be able to give you all more information about our event in March by Friday.  We are so excited about this and cannot wait to see you ALL there, right?!

Well, I am off to play a game with Jack before

The beginning of a new year not only comes with a fresh start, but time to reflect on the pass and I have been doing a lot of that over the past month as 2011 came to an end.  In 2010 we were in such bliss when our second son, Braden, was born to then be punched in the stomach when we were told that he had a large hole in his heart that might need surgery to be followed by the visit of true Evil when Jack was diagnosed with Cancer.  If you don’t know how that feels, to have Evil knock on your door, it went something like this:

Knock, knock, knock….

Us: Hello?

 Evil:  Hi, my name is Cancer.  Neuroblastoma Cancer to be exact.  I really want to take your son from you.  I want to take your son and I want to take him by putting him through hell.  I will make him extremely sick.  I will take things away from him…his freedom, his baths, his play dates, his school, his childhood…I want it all.  I want him to lose weight and be so thin and miserable that you hardly recognize him. I want him to go through many tests, scans, pokes, fevers, surgeries, and pain.  Not only that but I want to rip your family apart because the stress and emotional toll is something that you have never even imagined nor would you ever wish upon your worst enemy. I want to take away time from your newborn and I want you to suffer.  I want you to break down and fall to pieces.  I want you to question yourself and all that you have ever done in your life.  I want to see if your son can handle this.  I want to see if you can handle this, what do you think? Wait, before you answer let me tell you that you really don’t have a choice.  This is what I am going to do.  So starting now, it’s you all against me, ready for that?

 Us: Since we don’t have a choice in the matter, bring it on….not only will you lose this battle, you will miserably fail.  Not only will you not take our son away from us, you will not take away his childhood.  You will not take away his smile, his laugh, his love, his happiness.  You will not take away his faith, his hope, his determination.  You will not make the pain larger than him.  You will not win.  Not only will you not be able to take our son, you will not break my family for my family is stronger than you think.  We will take the beat downs, we will take the stress, we will take all that you want to give and we will give it back ten fold.  There may be times where you  feel like you are winning, but you are so wrong.  You will never beat us.  So the fact is, it’s not you against us, but it’s us against you.  Are you ready for that?

That is what it feels like.  It feels like you walked into a brick wall.  It feels like someone smacked you in the face with a baseball bat.  It feels like someone stabbed you in the stomach.  It feels like the floor was just ripped out from beneath you and you are falling into a dark hole and you may have an opportunity to grab a rope and climb your way out but that is also not a guarantee.  I do say that you would have to “climb your way out” because you do not get to float your way out.  You do not get to fall in to that hole and let a little cloud lift you back to the top, you get to climb.  You get to climb a very steep  climb with pieces of glass all throughout…with no shoes.  Yes, that is what it feels like when Evil knocks at your door.  It sucks.

2010 brought us so much we didn’t want but we had to get through.  2011 came and we knew it had to get better.  We said good-bye to 2010 with Braden given the all clear until 2011 because he was doing so well.  His hole was closing and he was healthy as a horse.  We said good-bye to 2010 as Jack rounded the corner with his treatment and his scans started coming up clear.  Cancer wasn’t winning.  2011 was a year that still brought much pain and struggle watching Jack continue to go through treatment, our family split up by our constant hospital stays, but our kids continued to stay strong and push through and we knew we had to follow.  We could see the light at the end of the tunnel.

2011 brought us much joy when Jack finished treatment and was given the all clear by Dr Eshun.  He was able to get his broviac out, go swimming, go to school, have play dates, get dirty, and start being a “normal” 4 year old.  We feel very lucky that we are in the place we are now.  We feel very lucky that Jack is beeting the odds and Braden has his brother to grow up with.

We enter 2012 with two healthy boys.  First time we have been able to do that and it’s wonderful.  We get to spend this year still going in for scans for Jack and we will continue with the same anxiety as we will probably have for the rest of our life with the fear of the big Evil coming and knocking at our door again, but we hope and pray that it won’t.  Braden will get an ECHO next month to confirm that his heart is still doing ok and hopefully we won’t have to go back to the Dr for another year or so…or for even longer than that.  We get to spend this year raising money for Neuroblastoma Research through Jack’s Foundation and that is a wonderful feeling.  We feel so great that we get to help and we are so thankful for all of you out there who want to join us in this effort.  Of course we send out huge hugs and thank you’s to all of our family and friend who have been there.  Thank you to all of our new friends.  We really couldn’t get through this without you.  There are a few people that have been there throughout this journey that we want to send extra special “thank you’s” to…people who never knew our family personally but when they heard about Jack being diagnosed, they wanted to help.

We thank Evon and Garret Fig.  You have done more for our family than we would ever ask of anyone.  We didn’t really know them at all when Jack was first sick, but Evon was one of the first ones to stand up and let us know that we weren’t alone.

Thank you to Adrian Wilson and his family.  We have asked time and again for help with fundraisers and you have never said no.  You are so very kind and we are so appreciative.

Thank you to Megan Kinnie and Brittney Walker who helped to organize our first golf tournament and who have become wonderful friends since then.  Thank you for always going to bat for us and for always wanting to be involved.  You both are so wonderful and we are so happy to have you in our lives.

Thank you to Tyler Kinnie for always wanting to help spread the word about Jack and his fight and help raise awareness. You and your sister must come from a very great family because you both have hearts of gold.

Thank you to Sue Dunn who has known my husband for many years and the day she decided to start volunteering for PCH was the day that Jack was diagnosed…all a complete coincidence.  Sue always made sure we had everything we needed when we were at the hospital and has become a great supporter and friend.

Of course there are many more of you whom we adore, but I just wanted to say thank you to these few because I want them to know how much we appreciate and love them all.

We know that we are very lucky that we have all that we have right now.  We know that there are many others out there who’s lives will never be the same because of what Cancer took away from them and it is not fair.  For all of this, we continue to fight.  Some get through times like this and don’t want to look back.  They don’t want to relive it and talk about it.  I get that, I really do, but that’s not how we are doing it.  We want to scream at the top of our lungs until we help to find a cure for this awful, Evil, nasty disease.  Even though Jack is doing well, we will still fight because you never know.  We never thought Evil would knock at our door in the form of Neuroblastoma.  Did you?  Doubt it.  So you will hear from us and you will hear from us a lot.  We will not stop until we make a difference.

On that note, we will be giving more details over the next couple of weeks, but we are very happy to say that we have a wonderful night being planned right now for March 8, 2012.  It will be 2 years since the date of Jack’s diagnoses and we are having a fundraiser to help rase money for Neuroblastoma research.  We met a very funny man named Boomer Nichols who is not only a comic in the Valley but like us, his family got the Evil knock at their door too a few years back.  They were also able to beet the monster and that is so wonderful!  He is graciously helping us plan a very wonderful night at Stand Up Live in Phoenix for March 8th.  Like I said, there will be more details to follow and I will get them all to you ASAP but for now…mark your calendars!!!!!