My mind feels so cloudy today.  I cannot stop thinking of Ava and her parents and brother.  I cannot stop thinking about how they are feeling today when they woke up this morning, or if they even slept last night.  I think of Jack and how lucky we are that he is here and doing so well and in a way I feel guilty.  I do not feel guilty that he is alive and I do not feel guilty that he is here and healthy.  I feel guilty because Ava is gone and for some reason Neuroblastoma took her life and not Jacks.  Survivors guilt.  It sucks.  I am sure it is nowhere in comparison to what Ava’s family is feeling, but it sucks.  Your heart hurts for their family.  Your heart hurts for Ava and that she had to go through so much in her short life that was just pure hell.  My heart hurts for her doctors that tried so hard to do everything they could to cure her of this awful disease and it didn’t work because I know they are at home tonight thinking of her.  Her mom said in her post “Ava did not lose to cancer” and I can imagine that was something that she decided a long time ago.  Ava was a fighter.  Through the posts that her family wrote, you could see that this little girl had a heart of gold and was so determined.  Her body just didn’t agree.  Why Ava?  Why Ben? Why Jake? Why Ronan?  Like Jack said, “Why do all my friends from the hospital go to heaven?” How do you answer that?  You can’t.  There is not a reason why the treatment works for some and not others.  It is not because “Jack is supposed to be someone”…so does that mean these other beautiful kids weren’t?  I don’t think so.  ”Everything happens for a reason.”  Tell that to the parents of these 4 kids.  I don’t believe that either.  ”God only gives you what you can handle” So does that mean that I would go in a looney bin if Jack didn’t make it through treatment and these parents won’t?  I don’t think so.  I probably would go in to a looney bin, no doubt, but that doesn’t mean that I am given any less heartache because of it.  I can guarantee you that these parents, among so many other, feel like like they could check in the looney bin at times too and often wonder, “Why did he do well and my child didn’t?”  I know that because I have felt the effects of it.  Some parents that I thought I would always have a friendship with have shunned me because they lost their child.  I understand that in a way but it also hurts…survivor guilt.

It is times like these…times when we have to accept the fact that yet another innocent child has died because of cancer that makes you wonder all of this and it is ok to actually say it out loud.  I think of all of these things often but I usually chose to keep them to myself.  I think of the other children we have met and that are doing great…McKenna, Cameron, Olivia, Braden…and so many others.  I think of Alex who has hit a few bumps in the road but him and his family continue to fight so hard and keep that faith that he will win.  I think of those who will be diagnosed this year and what new treatments will be available to them that weren’t available to Jack and if that will make a difference in the future.  Would timing have changed the outcome of the kids who were robbed of their childhoood?  How is that fair?  It simply isn’t.  It isn’t fair that any of these children were diagnosed with cancer.  It isn’t fair for any child to be diagnosed with any sort of disease….period.  I think of  this and want to do more.  I know I go on and invite you all to benefits and fundraisers over and over again.  I constantly ask for help (which I never would have done in my past life…past as in “before cancer”)  I ask you all because you all are the ones who can save these kids.  The doctors that we have come in contact with are in this profession because they want to save lives.  They do not want to sit back and watch children die.  The problem is that they have no funding, so who do the depend on….us.

So I will continue to ask for your help and continue to invite you to fundraisers because I need you.  We as a family need you.  The children who have been diagnosed need you and those who will be diagnosed in the future need you.  If you can, at any time, help…please do.  I am not a person who will accept the word “No” so you bet your ass I will keep asking until I get a “Yes”

Dr Eshun called today and it looks as if Jack has to go back on his levothyroxine…a medication to help correct his thyroid levels.  We were really hoping that he didn’t have to be on any more meds, but his endocrinologist believes that he will have to be on this for the rest of his life.  We start one dosage now and in a month we have to go in and get a blood draw and meet with Dr Olsen to see how it is holding up.  He will have to get checks every 6 months for awhile and then probably every year after that.

We have been busy planning the event in March and we feel very lucky to have such great support from so many people who have reached out and donated amazing items.  Thank you so much to all of you who are working hard to make this night successful!

We have introduced you to some other Neuroblastoma warriors and we want to talk about another beautiful little boy who was diagnosed with Stage IV Neuroblastoma a few months after Jack…his name is Ronan Thompson.  I am sure many of you know who his is not only from what we have said on here, but because there are so many across the country that fell in love with him.  We hardly knew Ronan, but he touched our hearts in a huge way.  Jack and Ronan were born at the same hospital, one day apart.  When I first met his mom, Maya, and learned about this common relation between the boys I thought of this couple we saw in the halls at Scottsdale Shea and wondered if it was her and her husband.  I remember walking around the halls before Jack was born and there was another couple there that I have never been able to forget…she too was walking the halls and he was rubbing her back the entire time.  For whatever reason, I feel like it could have been then and maybe it wasn’t, but that memory sticks with me.

Jack always knew of Ronan and still talks about him a lot even though they never were able to have the play date that we wanted. The last time we saw Ronan, we were in for scans and saw them in the waiting room while he was getting all of his test for transplant.  He was shy with us but he had the cutest little smile under his trademark fedora hat.  He would laugh when Zac would tickle Jack and then snuggle in to his moms’ arms.  When we were leaving that day Maya was talking with another parent as she was holding Ronan.  Ronan looked over her sholder at us and gave us that same sweet smile and added a little wave.  Soon after that, the Thompsons left for NY.  This family has been through so much and it isn’t fair.  It isn’t right that they lost their son to Neuroblastoma.  I cannot imagine what they go through on a daily basis and this is just one more reason why we determinded to raise money for NB.  We need to help find a cure.  Please click the link at the top of the page and buy your ticket…we need your help…

Meet Ronan:

Ronan Sean Thompson was born May 12, 2007 in perfect health. He spent the first three years of his life happy, healthy, and making everyone fall in love with his big blue eyes and pure happy smile.

Our perfect family life changed in August of 2010, during our annual trip to my parent’s house in Washington State. It was a trip that I made religiously since the birth of our now 8 year-old twin boys, Liam and Quinn. Taking a great family photo during our stay was part of the fun, it always became the one we used for our Christmas card. That August, while the boys were posing in the hammock, happy as can be, I noticed that Ronan’s eye looked a little “off” or “lazy”. But when I mentioned it to other family members, they all said they hadn’t noticed.

The following day, Liam, Quinn, Ronan and I all returned home to Arizona where Daddy greeted us. He noticed Ronan’s eye almost immediately without me saying a word. That’s when I knew I should schedule an appointment with the Pediatrician.

After the Pediatrician looked at Ronan’s eye, he referred us to an ophthalmologist who won my antipathy by dismissing my concerns and intuition. He did not believe there was anything wrong with my baby. I did. Not long after our meeting started, I found myself walking out of the appointment and frantically calling other doctors who would be available to see Ronan on short notice. Dr. Brendan Cassidy agreed to see Ronan the next day and upon first glance at Ronan’s eye, which now appeared to be bulging out of the socket, he knew immediately there was something seriously wrong.

Dr. Cassidy sent us directly to Phoenix Children’s Hospital for an MRI. The MRI showed a small mass above the left orbit of Ronan’s eye. The following day, Ronan had a CT scan done and that is when they found the mass in Ronan’s abdomen. It was on this day, the 12th day of August, 2010, that Ronan, my son, my baby, my love, was diagnosed with Stage IV Neuroblastoma.

Ronan’s orbital tumor was successfully removed at Phoenix Children’s Hospital on August 13, 2010 where he also received 5 rounds cycles of chemo. The tumor in his abdomen was almost completely removed by surgeons at Sloan-Kettering in New York City. Ronan responded well to the first 5 rounds of chemo and it was only after his MIBG scan after Round 5, that we decided to forgo the standard COG protocol and move him to Sloan Kettering under the care of Dr. Kushner. We did this because although Ronan’s scans came back much improved…. he still had a lot of MIBG activity. We felt Sloan Kettering was where we needed to be. We did radiation and ICE at Sloan and a few weeks later, Ronan’s disease took a turn for the worst as he had no response to the chemo at all and his disease rapidly progressed. We returned back to Phoenix with heavy hearts, refusing to give up. We flew Ronan out to meet with Dr. Mosse at CHOP and it was there that we were told Ronan could not do the MIBG therapy, that we should take him home to enjoy the rest of the time we had with him. Frantically, we searched for something else for our baby. We were told to contact Dr. Giselle Sholler and she agreed to take Ronan on and we were due to start her Nifurtimox trail but Ronan’s little body gave out before we could get him to San Diego for treatment.

Ronan’s battle with Neuroblastoma ended on May 9, 2011 but his fight continues on. He continues to inspire us all in the way he lived his life full of passion, strength, and courage. He will forever live in our hearts and minds as the most beautiful little boy to ever have touched the earth. We, as a family, are determined to carry on his name and help find a cure for this horrible disease.

Ronan’s family started The Ronan Thompson Foundation and will continue to fight to help make a difference in the world of childhood cancer

Today has been a day that will forever lay heavy on my heart.  Today is the 3 year anniversary of Zac’s moms passing and that is very hard.  Zac and his mom had such a special bond and it is so very hard not having her here while we go through all of this.  His mom was an angel.  She loved her boys and would do anything in the world for them.  I know for a fact that she is up there with my Grandpa taking care of us and making sure that Jack fights this battle with as much strength as he can.  I know that she is holding Zac up and making sure that he gets through all of this as best he can.  I also know that we miss her and we wish she was here to walk this battle with us.  We love you Mary Lou and miss you more than you will ever know.

Today has also been a day of heartache.  Like we said earlier today, our beautiful Ronan was told by his Dr’s at CHOP that he would be returning to Phoenix and no longer eligible for treatment.  I don’t get it.  I don’t understand how this has happened.  Ronan is a fighter.  Ronan is a strong and beautiful little boy that has so much fight in him that he could just very well prove them wrong.  His story has been heard by thousands and his family has such a strong support system.  Jack and him have never been able to play together, but I was explaining things to Jack tonight and I told him that it would be great if we could have Ronan and his mom over to play one day and he said, “Or…..maybe…we could go to their house and ring their door and see if we can go in and play with them! ”  I told him that that may happen and that I know Ronan has so many Star Wars toys that it would be unreal and he was all excited…hopefully we can make that happen.  These two boys are one day apart, born at the same hospital…I have always wondered if Maya and Woody (Ronan’s parents) were the couple that I saw in the hallway when I was making my rounds before Jack as born.  I was walking the halls with my sister Nikki, my sister-in-law, Amy, and my mother-in-law, Mary Lou, when I saw another couple in the halls.  She was leaning against the wall and he as rubbing her back.  For whatever reason, I will never forget them. I wonder if it was Maya and Woody.  Funny part is that Nikki remembers them too.  They have been through so much in the past 8 months and will go through more in the months to come.  Please send your love to them…they would appreciate it.

This gives me even more fuel to the fire to fight for research for this awful disease.  Neuroblastoma is a nasty, mean, sneaky beast that is not known by anyone.  We need to raise money for research.  We need to find a cure for this.  This is not fair.  This is not right.  No child should suffer like this.  No parent should suffer like this.  Please help us with this.  Please help us raise awareness.  We are determined to do something and we will not give up on this fight…ever.  I hope you all join in the fight.

Just a couple of updates about 2 of our Neuroblastoma friends…

McKenna had her final scans a couple of weeks ago for the end of her treatment.  If you will remember, she is about a month ahead of Jack with her treatment so we have been following her through everything.  They found out in her scans that she still has a small part of her main tumor left in her belly but it has shrank from the previous scans.  It lit up and showed small activity, but it is confusing because Neuroblastoma can show up even if it is “not real” or “dead”.  The great news is that nothing else has popped up anywhere so this is great knowing that nothing has spread for her.  She may be going to NY to have that last part of her tumor taken out just to be on the safe side.  They will find out more next week…please keep McKenna in your prayers!!

We have talked about Ronan on here many times.  He holds a special place in our hearts since he is so close to Jack and share such similarities.  Ronan went out to Philadelphia to see if they could do MIBG treatment because Sloan Kettering told them this his cancer was spreading with their treatment.  I found out late last night that Phili has sent Ronan back here to Phoenix.  He cancer has spread too much for the treatment.  My heart is breaking for them.  I am unsure of what happens next for this family but I do know that they need a lot of prayer and support right now.  They are very fortunate to be surrounded with a lot of love and a lot of family and friends but extra prayers never hurt anyone.  Please pray for Ronan…he still has a lot of fight left in his little body.  Please also pray for his mom, dad, and twin brothers….

We will update more later…

Jack: Mom, why is God a cucumber?

Me: What?  God is not a cucumber.

J: on Veggie Tales it said so!

M: Ohhhh, no hunny, that’s Larry the Cucumber and Bob the tomato

J: ohhh, oh right!  Just kidding! Well, let’s thank God now then.  Thank you God for my Wii, my blankets, my Braden, for me, for you, for Dad, for me, for my friends, for me….

Oh he cracks me up that kid!  Tonight is the night before Easter and we spent the day getting ready!  Jack and Zac colored eggs and Nikki and I made a bunny cake and a breakfast for tomorrow morning that we will have before church.  After the boys were back to normal from the stomach flu, they were hit with a head cold.  First Braden, then Jack, then Nikki, and as of today…me.  Not exactly how we wanted to spend the weekend, but it is what it is.  I cannot complain as there are others who are going through more.

I know we told you all awhile ago about a little boy named Ronan that was diagnosed a few months after Jack with Neuroblastoma.  He was born the day after Jack at the same hospital so we always had a bit of a connection with him since the boys are so close in age and everything.  Unfortunately they have not been able to play together yet, but I have a funny feeling that they would get in to some serious trouble together!  Ronan was getting ready for transplant when they decided to take his treatment to NYC to Sloan because his cancer wasn’t exactly where they wanted it to be for transplant.  I read tonight on his blog that after doing radiation and more chemo that his cancer has spread and he has returned back home to AZ and will be looking in to MIBG treatment in CA.  This broke my heart.  I know Ronan is a tough little boy and he will give it all he has.  I know that his family has gone through so much and this news was not what they expected.  I know that this is another reason why it is so important to us that we raise money for research.  It is not fair for a parent to hear that they are not sure what to do for treatment for their child.  Neuroblastoma needs money for research.  Please donate to the Jack Morton Foundation, the Layla Grace Foundation, the Noah Nelson Foundation, the Ronan Thompson Foundation, or directly to the Children’s Neuroblastoma Cancer Foundation.  We need research to find a cure and we can’t do that without the donations.

Please keep Ronan in your prayers tonight as well as Jack and all the other children who are fighting this awful disease…