We woke up this morning to seeing The Fitzgerald Cancer Fund in the crowd at the Today Show with huge pictures of Neuroblastoma cancer warriors and angels.  Al Roker went over to the crowd of people showing support for NB and they were allowed to speak for a couple of minutes about the loss of their daughter to Neuroblastoma and how they want to raise awareness and funds for safer treatments and ultimately find a cure.  It is is great when we see people spreading the word about Neuroblastoma…without awareness, you can’t find a cure.  The huge pictures of the kids that they were showing are many of the children that we follow or know.  It was great to see their little faces on the tv first thing this morning.  Congratulations to the Fitzgerald Cancer Fund for putting yourself out there and getting the awareness you were after!  As you all know, we love The Today Show and that is a great place to get your story out!  It really is amazing how the knowledge of NB has been growing.  Two yeas ago, no one ever talked about this disease.  I had never heard of it and I am sure most of you hadn’t either.  To know that more and more people are standing up and making a stand, is simply amazing to see.

I know we haven’t done an update since last week, but just so you all know…all is well.  Dr Eshun called us last week and said that Jack’s echo and EKG looked great.  He said, “In fact, it looks better than it did last year when he was on treatment.”  I was a little surprised about that because I wasn’t aware that there was ever a time that his heart looked as if it wasn’t any less than perfect, but to know that is body is improving daily is all that I really want to know.  We don’t have the results from the pulmonary function test, but as I have said before, I am really not worried about it.  I think he is doing well and I am sure that is what the tests will show.

We had a great 4 day weekend with Zac being home.  We had dinner with friends, played a lot, actually had a date night by ourselves (which rarely happens!), and celebrated Father’s Day before he headed out again.  I will post some pictures later for you to see….including the shirt we made for Zac which happens to be pretty cute and funny!

I am off to make breakfast now for the kids and then doing a quick ride outside before it becomes unbearably hot out!!

Get your bracelets today!!  For a minimum $5 donation, we will send you one of these bracelets that we all wear so you too can show your support!  They are bring green (Jack’s favorite color) with the letters being glow in the dark!  We have both medium (what I wear) and large sizes (what Zac wears) so please be sure to tell us which one you want!  Just click on the donate tab and make your donation today…when you do, be sure to note what size you want.  If you have any questions you can email me at lmorton@thejackmortonfoundation.org

Thank you!!!

Ok folks, we are getting ready to take off for day 2 of scans.  Yesterday went really well and Jack was very happy about only having to do the CT scans but not too thrilled about having to put an IV in. He put up a bit of a fight when it was time to hold his arm out, but once they started he didn’t even know it was happening.  He did really well with the CT and picked out a prize after….a stuffed bat that he wants to take to clinic on Friday to scare the nurses.  He thinks it is just so funny that he would do that!

We had to wait around for about a hour before he got the injection for the MIBG so we sat and ate some lunch at the cafeteria and visited with our favorite person from Child Life, Amanda.  Jack is very shy now in front of all the people at the hospital that he used to be so outgoing with and I am not sure why.  Maybe he feels like if he gets too close he will have to go back??  Not sure.

Anyhow, we go in this morning first to the orthopedic to see if we can take his boot off or at least see how his bone is healing from his attempt at flying.  Hopefully he can take it off and get back to playing more outside because I know he misses it.  After that we will be checking in and getting another IV done before his scan so Dr Maze can give him anesthesia.  We saw Dr Maze yesterday…he is such a nice man.  He tickled Jack and made him laugh, told him he loved him and just how cute he is.  He is so good with him.  Of course he asked me about my whole family that he knows because he really does care about everyone.  The MIBG should only last about a hour or so and then we will be heading home and I will turn my ringer up as high as it will go and hold it close to me until Dr Eshun calls and tells us, “I have good news for you!  You don’t have to worry…he is fine!  It’s Jack afterall!”

Please keep the prayers coming!!

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!