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September 02, 2005
Not Very Good News
I first want to apologize to all of you for taking so long to let you know the result of Noah's MRI that was done today. It wasn't until late this afternoon that Lara and Andy heard from Dr. Graham. It seems as if there is evidence of something showing up on the test. There even appears to be some new spots that didn't show up on the MIBG scan. Obviously, we are all in a little bit of shock because it wasn't the news that we were expecting. We all knew that this was a possiblity because of the results of the last MIBG scan that had shown something but we were all encouraged that nothing showed on the subsequent MRI. The doctors were hoping that the clean MRI was correct but now something is also showing on the MRI that was done today.
Another MIBG scan is scheduled for next Thursday at Phoenix Children's. This should give a better idea of what is going on because it is still considered the best diagnostic test done for Neuroblastoma. Decisions as what to do next will have to wait until after the results of the MIBG scan. There are various options available in different parts of the country. Fortunately, Lara has done so much research and has been in contact with Neuroblastoma experts. She may turn to them now for an opinion as to what the next step should be since it appears that Noah is no longer responding to chemotherapy.
After hearing the results, Lara and Andy took Noah and Sarah swimming to the big water slide that Noah loves so much in Tucson. Noah is just a kid who wants to do fun kid things and he is well enough now to go swimming again. Yesterday, Noah convinced Lara that he needed to buy his Halloween costume. Anyone who knows Noah knows how much he loves Halloween and dressing up. He always starts planning months in advance for what that perfect costume will be. He's not even sure yet what that might be. He might have to get another costume just in case this isn't it. So that's what's going on. Lara and Andy are just keeping Noah busy and happy with all the fun stuff that he loves to do.
Thanks to all of you for so faithfully following Noah's progress by way of these journals. I keep asking for prayers and I know that you are all complying with my requests. Tonight I am asking for prayers once again for Noah but also keep Lara and Andy in your prayers. They may have some very big decisions to make in the not too distant future.
With much love, Grandma
September 2, 2005 | Permalink
Comments
Dear Noah,
Way to go! We are so happy to hear of your great news! You've got to be the strongest and bravest guy we know! Our prayers are always with you to be safe and strong.
All of our love,
Dina & Family
Posted by: Dina | Sep 15, 2005 10:41:56 PM
Hope you all have a wonderful time at Grandma Fittings house. The challenges you all face are amazing. We admire your courage, hope and love.
Take care,
Jim and Terry Nevin
PS Noah you look pretty cool in your Halloween costume.
Posted by: terry nevin | Sep 11, 2005 9:53:59 PM
Noah,
So, a little birdie told me that you did great on your scans today and that they are CLEAN!! YOU ROCK!! Time to celebrate! Bring on the doughnuts... glazed - straight-up and the lemonade. CHEERS! I hope you have an awesome time in CA this weekend with your family and tons of fun at Paramont. I bet your Auntie, Uncle, Cousin, and Grandma can't wait to give you and Sarah a great big squeeze and see how big your muscles have grown. Barrett had fun with you last night and he's looking forward to trading transformers. Boy can you guys really get the "screamers" (Sarah and Payton) screaming! Yow... my ears!
Lots of Love,
The Allen's
Posted by: The Allen's | Sep 8, 2005 9:09:56 PM
Noah,
I'm with you on preparing for Halloween early! I'm trying to sell the husband on decorating the house now. Its not going well. I'll be thinking about you all day!
Posted by: Sarah Jacobson | Sep 8, 2005 8:40:58 AM
Hey Noah,
Just a quick note to say Hi and to tell you about a pretty neat looking Halloween costume shop that is opening in the shopping center by the PV Mall that has Sports Authority and such. It is called, cleverly enough, The Costume Shop. (or something close to that) If you are still stumped for ideas on what you want to be for Halloween, you may get some good ones in there. Of course, so many choices may make it harder to make up your mind, huh?!! I can't wait to hear what you decide on. With love, Mrs. L
Posted by: Trish Langenhuizen | Sep 7, 2005 11:06:17 PM
Dear Noah, I was just going to write in your journal and then I read Cousin Sarah's note. Guess what...her 2nd paragraph was EXACTLY what I was going to write!! Isn't that the craziest thing, but I'll bet there are lots and lots of family and friends who were also going to say the very same thing...which is: 1) lots of prayers and love are being sent to you all the time and 2) be sure you give your mom and dad a BIG hug from us. We love you guys, Aunt Kathie and Uncle Jerry xoxo
Posted by: Kathie Allen | Sep 7, 2005 1:11:25 PM
Hey Noah,
That was a pretty awesome thank you card you sent me! Although, I wish I had told your parents not to bother with one as I bet you've got better things to do with your time these days - like shop for a halloween costume and enjoy some time at the waterslide.
I sure do wish there was better news about the latest test results but I just know that you are stronger then this. Look at all of the people praying for you and sending you our love! Do me a favour and hug your mom and dad from cousin Sarah and tell them we are eternally positive that the picture of good health is just around the corner for you.
Lots of love,
Sarah.
Posted by: Sarah | Sep 7, 2005 11:53:53 AM
Hey Noah,
You are a crazy dog!!!!! Halloween already???!!! Well now Gigi wants to get her costume too....Gigi wants to be Spiderman...she was Spiderman last year...but she wants to be Spiderman again...and insist on buying a new costume...Jake is still thinking about what he wants to be...we will see...
Hang in there buddy...glad to hear about all the fun you are having...swimming??!!! That's Awesome....
Take care
Jen
Posted by: Ernst Family | Sep 7, 2005 10:27:33 AM
Dear Noah:
Glad to hear you're getting ready for Halloween. Caroline and Chloe were shopping for costumes this weekend, too. One thing we know is that you don't need a costume to convince everyone that you are a warrior. We want you and your family to know that we're purple-banded here in Sarasota and that we're always thinking of you. We can't wait to hear what you decide to be for Halloween.
Casey, Michelle, Caroline & Chloe Colburn
Posted by: The Colburn Family | Sep 6, 2005 6:05:35 PM
Noah,
Well, we are back from a weekend away and I also feel the excitement of Halloween coming right around the corner. We took a long weekend and went to a couple of State Parks here in Illinois. Travis and Sofia did some camping and some hiking and saw some new places and lots of stars. (People in Chi-town are not as lucky as you with the most beautiful skies around). The city is so big and bright that we have to drive for miles and miles to see starry skies!!! Can you imagine? You are very lucky to live in such a beautiful place. You are also very lucky to have such a wonderful family. You are a star!
With love and prayers,
The Newgrens
Posted by: misha newgren | Sep 6, 2005 6:39:05 AM
Hello Young jedi,
You hang in there OK! Sorry that things are not going the way we had all hoped for but I will keep praying and sending good thoughts. Wow how exciting water slides sure sound like a fun way to spend family time. Lara and Andy you are 2 of the strongest most amazing people I know and if you can think of anything I can do to help you just let me know, for now I will keep praying and checking in..I love you all....
Cousin Jen
Posted by: jenifer | Sep 5, 2005 4:10:38 PM
Hi Noah & family,
Before you know it Halloween will be here so it's smart to pick out your costume now. I like the Power Rangers ones.
Try to keep those spirits up. We'll keep on praying & thinking of you. Stay strong. With love, The Exleys
Posted by: William & Lois Exley | Sep 5, 2005 12:52:04 PM
Hey Noah! Halloween is my favorite time too and I can't wait to see everyone in their costume. My boys already know what they are going to be. Danny is a Knight, Michael is a scary professor and Kevin is an Irish leprechaun!
Hope you had fun on the waterslide.
Noah, you are in my heart all the time.
Love Mrs. Mac
Posted by: Natalie McAtamney | Sep 5, 2005 6:54:48 AM
Hi Noah!
I've missed you so much! My mom said she got to see you twice last week... NO FAIR! I'm glad you are having lots of fun and even getting to swim. You deserve it. I'm thinking you must have a pretty cool uncle to let you put tape on his arms and pull his arm hair out. YOW! That makes me laugh and I can just picture you and Sarah laughing too. I don't think my uncle would let me do that. I hope I get to see you soon.
Love,
Barrett
Posted by: Barrett Allen | Sep 4, 2005 8:22:49 AM
My Favorite Little Man,
I just thought that I would send you a note before I go to bed. I sure had a great time with you and your silly sister tonight, just like when we were being crazy and chasing each other around the house. I always enjoy the "Noah and Kylie" time, like tonight with our movie theater that we made. I was glad to see your smiling face, and of course you eating like a pro, especially two peanut butter sandwiches. You truly amaze me kiddo! LOVE YOU and YOUR FAMILY!! Love, Kylie
Posted by: Kylie Haworth | Sep 3, 2005 11:30:44 PM
Hey Noah Buddy,
I think that is so cool you are looking at Halloween costumes. Me too. I can't decide if I want to be Obi-Wan Kenobi or a Clone Tropper. I told my mom we had to buy both so I could see. What are you thinking about being? I'm sure they are cool.
Take Care! Caden
Posted by: Caden | Sep 3, 2005 9:41:53 PM
Dear Noah,
You got that right Noah, it's time to start looking for Halloween costumes! I am so ready for Halloween and cooler weather and great Halloween books to read. One of my favorites is "The Hallo-Wiener" it's about a little dachshund puppy, they are the long bodied, short legged dogs, (so cute!)
Stay strong,love and prayers to you and your family, Mrs. Armstrong:)
Posted by: Patricia Armstrong | Sep 3, 2005 7:41:28 AM
Hey Noah,
Today was a long day for all of you. It is late now, no doubt you are already in bed and having sweet dreams. Maybe you will dream about the perfect Halloween costume for you! I'm guessing nothing ordinary will do,huh? Halloween was always a favorite for my kids, too. They used to think of some pretty crazy costumes!!
Noah, you keep being strong, and let our prayers help you to do that, oK?
With love, Mrs. L
Posted by: Trish Langenhuizen | Sep 2, 2005 10:59:14 PM
Nephew Noah,
Yo Man! It has been weird not being awakened in the morning to the sounds of you and your sister. I am so stoked that you were able to go to the slides. That is awesome. I am going to try real hard to come down again before I leave for Germany. Looking forward to trips to Target and Toy R Us for toys (You suckered me pretty well on that Transformer by the way), McDonald's Happy Meals and maybe a run to Sonic with your sister. When I am there, you and your sister can put more tape on my arm and pull out my arm hair (ouch, ouch, ouch), do silly talk, and just have a great couple of days. I love you very much and really want to come hang out with you again before I go away! Keep up the good work my little warrior.
Much Love,
Uncle Brian
Posted by: Uncle Brian | Sep 2, 2005 9:03:03 PM
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