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

Hard to believe it is already that time again but we got the call yesterday to schedule our next set of scans.  We had 6 weeks of excitement over clear scans and now we get 6 weeks of building anxiety for the next set of scans.  Jack will go in on February 14th for a CT scan which he is awake for so no anesthesia that day!  He will then get an injection for his MIBG scan the next day.  The 15th we go in and he goes under anesthesia to get his MIBG scan…the scan that makes any Neuroblastoma activity light up, so obviously we want nothing to light up!  The only good thing about going under anesthesia is that we get to see Dr Maze!  Since Jack doesn’t have to get the bone scan this time, it will be two very short days of scans.  Hopefully we will hear from Dr Eshun again that evening so we can start celebrating the next set of clear scans!  This will be Jack’s 9 month follow up scans…how time flies.

Jack has also stopped taking his Levothyroxine for his thyroid so he will get labs drawn when he is under to check those levels.  If they come back normal, he will be able to stay off the Levothyroxine and then be checked again at next set of scans to make sure it’s still normal.  That would be so wonderful if he was off all meds!!!

As always, Jack’s scans fall during a busy week…Braden turns 2 just a few days before and Zac and I will also be celebrating our 5 year anniversary.  I can’t believe so much has gone on since we were married…and even more so, I can’t believe my baby is turning 2!

So please start praying now and sending your positive thoughts this way!!  Clear scans…NED…clear scans…NED!!!!  No need for thyroid medication too please!!

Well Hello!

We have had a wonderful holiday weekend with our family all being here.  Zac and Shawn (Nikki’s husband) were only here for a couple of days, but a couple of days is better than nothing!  My parents came in town and we had Thanksgiving over at my sister’s house across the street.  Zac’s Dad was able to come by during the day as well as a visit from his brother, Jess, at my sisters house that night.  The kids all had a great time playing together and it was just a simple understood fact between everyone that we were all so happy that we were there together.  When we sat down to dinner my aunt and my mom had some very nice things to say about the family and then Zac took the floor.  Zac is a very quiet person so when he said he had something to say I was a bit blown away.  It was wonderful to hear him tell everyone how thankful he is and how happy we could all be together.  It was a wonderful moment that I will never forget.

Zac had to leave the day after Thanksgiving to head back out of town to work so he wasn’t able to join us at our annual Zoo Lights trip, but we still had a good time.  The kids love it and this year my aunt and her family along with some other friends were able to come this year and it was a good time by all.  Jack actually sat on Santa’s lap this year and while he looked a tad terrified, he did well.  He said that he was “so proud of himself” after he was all done and that was pretty cute. Braden on the other hand, wanted nothing at all to do with Santa so I wasn’t going to push it on him!

The decorations are almost all up for the season…the tree and the ornaments are up but the lights will be the challenge with Zac being gone but I know we will get that done!  Jack just loves driving around and looking at lights and there will be no way that we don’t include our house!

We start getting back in to the swing of things tomorrow with Jack going back to school again this week and counting down to Christmas time…I can hardly believe it is that time of the year.  Time flies.

I didn’t update on Jack’s appointment with the endocrinologist last week.  We went and it was a pretty quick and painless appointment.  Jack’s thyroid function is totally normal and it has been since he started his medication back in August.  Since his thyroid was only slightly elevated, I asked the Dr if we could cut the dose of meds in half and see if anything changes.  I would really love for him not to have to take any medication at all especially since the numbers of elevation were so very small.  He said that he had no problem cutting out the med all together 6 weeks before Jack’s next set of scans and then taking labs when he is under to see where he is at. So we will be stopping his medication in the beginning of January and then when we have scans the 3rd week of February we will check his levels.  I really hope that he is in the “normal” range and that we get to stop meds.  It would be so wonderful to have him on nothing at all!!!

Anyway, I will attach some pics that I forgot to attach before…some from scans, Thanksgiving, Zoo Lights, and of course the night of clear scan results!!

Scans:

Getting poked for the 2nd time….and then the 3rd!  He did so good!

CT scan with no anesthesia…

Seeing Dr Maze before anesthesia…he was joking with Jack and then wanted to see pictures of Nikki’s wedding and Jackers dancing at the reception….he is the best!

Waiting really is the worst part…

Worth the wait!  All clear!  Jack (last minute) asked for a sparkle cake and this is what we had in the house to work with!

Thanksgiving…

My sisters and my mom…some of our biggest supporters!

Jess and Zac and the kids!

Braden!

Zoo Lights…

And Santa…