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August 12, 2005

No Idea What Will Happen

My apologies to all of you who so faithfully read the website and that I have not been keeping you up to date.  I hadn't seen Noah in almost two months and I had never been around him when he was feeling well.  I was determined to spend some quality time with him before he had to begin his mini stem cell rescue and I did.  It is so hard for me to be so far away.  The only times I was here prior to now was when he was going through chemo and was really sick from its after effects.  We really had a fun time together and he has been my main focus.  I hated to have to leave him today in Tucson but I brought Sarah back to Scottsdale so that Lara and Andy could concentrate on just Noah for the next week.

I am grateful to Brigit for updating the last journal entry because I know how much time it takes to do a journal.  We always try to get all of our medical facts straight as to not misinform all of you.  Neither of us has any kind of medical background so that we rely on Lara for our information.  I can assure you that this week has been such a mixed bag of information that we weren't sure what to write.

Most of what Brigit put in her journal is true but the doctors never used the word "relapse" but that was what was alluded to so that was our greatest fear.   All of this began Monday evening when Noah was having a sleep over with his two good buds Curtis and Colin.   Dr. Graham called Lara to tell her that he was very concerned about the MIBG scans because there had been no evidence of Neuroblastoma on the second scan and there was on the third.  The problem was that the radiologist in Phoenix who had read the third MIBG scan was only comparing it to the first scan and thought that all that was so showing up were residual cells.  That would not have been such a big deal.  The fact that the second scan was clean and the third wasn't meant to the doctors that Noah was becoming resistant to chemo.  If that were the case then going through stem cell rescue wouldn't be effective in of itself.  Dr. Graham then said that maybe they would have to try to do a combination of radiation, chemo and accutane simutaneously.  Lara knew enough about all of these different treatments that Noah's body would never be able to sustain these all at once.

Monday night was crazy.  I still wasn't sure what Lara was trying to tell me but all I knew was that there were four little kids here having a great time with the big sleep over and Lara was at her computer or on the phone.  I also forgot to mention that Andy was in Orlando for his company's annual meeting.  He is having to attend meetings, trying to close deals because he knows Tucson is coming up and Lara calling him to tell him that everything scheduled for Noah is falling apart.  I can't even imagine what he was going through.  He must have thought that he was in the middle of a nightmare and only if it had been.  This was his reality. 

By Tuesday evening, Lara spoke to Dr. Graham and told him that she wanted as many opinions as could be obtained before any drastic decisions were made.  They both agreed that more testing had to be done before they could proceed with anything.  The other thing that came to light on Tuesday that was a mystery was why when three "hot spots" had shown up on the PET scan but not the one that showed up on the third MIGB scan.  The simple answer to that was that Noah's legs hadn't been scanned in the PET scan.  Yes, it is all very crazy and very confusing so that is why Lara is now saying no one knows for sure what will happen.

What everyone agreed to is that more tests were done today.  Both an MRI and a CT scan were done and no evidence of a tumor showed up on the MRI.  The preliminary results of the CT scan were negative as well.  This has pleased the doctors but no one really knows what all this means.  Why something showed up on the MIBG scan and on nothing else is still the great mystery.

Noah was admitted to UofA Hospital today and will begin his mini stem cell rescue tomorrow.  If nothing else this buys time for at least four weeks to form back up plans if they are needed.  Noah will be receiving the same chemicals used in past chemo therapies for four days but at five times the intensity that he received in the past.  Next Thursday, he will receive the stem cells that were harvested from him and then frozen.  He will then be allowed to leave the hospital and will be living in the house that the family rented in Tucson.  He will be monitored everyday for three weeks after that as an out patient.  This is so that he will get the usual transfusions, platelets and various medications that are needed on a day to day basis.

I would have to say that the most hopeful thing that we've heard all week is that the MRI came up clean.  But we still don't know exactly what any or all of this means.  Another round of scans and tests will be ordered after Noah recovers from his mini stem cell rescue.  Hopefully, we will have a better and completely positive outcome at that time.  Needless to say we have all been on an emotional roller coaster all this week.  We thought we knew what we were in for but we hadn't a clue.

As always, I am asking for prayers.  Pray that Noah's little body isn't resistent to the chemo and that the next scans will all be clean.  And say a prayer of thanks that the MRI was clean today.  Remember to pray that Lara and Andy keep up their incredible strength and wisdom to keep Noah going forward.

Much love, Grandma

August 12, 2005 | Permalink


Hi all you guys.
We, here in Novato, and it seems all over the world are praying everyday for your lives to ease and answers be found for your health.
I know how much grandma loved taking you shopping and hope she continues to do it anytime you can get out of the house and need that little "extra".
Your mom, dad, whole family and the world of friends are so worried and continue to visit this website to be updated on your health and the progress your disease is taking. There are new answers everyday so our prayers are that you find the answers you're looking for and you can all find a normal life again.
give my love to everyone there but a special special smooch to grandma. She loves you soooo much.

Posted by: Pat and Joe Davidor | Aug 13, 2005 8:59:53 PM

Hi Noah,
Sounds like you've been going through an awful lot again for such a little guy. You amaze me at how you are so brave and just "take it as it comes" and remain strong. Keep up the strong fight, for yourself and all of us who love you so much.
Love and prayers, Mrs. L
P.S. Say hello to your Mom and Dad and remind them that they are always in my prayers, too, and of course, Sarah!

Posted by: Trish Langenhuizen | Aug 13, 2005 6:38:29 PM

How are you doing? We've been thinking about you all like crazy around here. Hoping and praying that you are staying strong and getting through your days in Tucson. Barrett has a picture to send your way Noah. It amazes me at how strong you are and how quick you recover from each treatment. I know it will be the same for you with your stem-cell transplant. Hang in there guys!

We love you!
Chris, Tracy, Barrett and Payton

Posted by: The Allen's | Aug 13, 2005 2:35:19 PM

Just wanted to say hello from your cousins in Canada. Thinking of you all and praying the clean MRI is a great sign of things to come!!

Love, Sarah.

Posted by: Sarah | Aug 13, 2005 8:43:15 AM

Hiya Noah!

We're happy to learn you had a sleepover this week - did you take any pictures? That's what life is all about - hanging out with family and friends.

We're hoping you get another sleepover soon. Also - what fun to have a shopping spree at Toys R Us and Target - our favorite stores too!

Even amid the meds, tests, and icky feelings, you're still able to smile, laugh and have fun with family & friends. Just keep on doing what you're doing.

Sending BIG hugs to you, Sarah, Lara, Andy, Grandma Kathy, Auntie Brig and Uncle Jaime.

Connor, Kathy & Matt

Posted by: Nelson-Doissans Family | Aug 13, 2005 7:25:43 AM

Hey Noah,

I sure am hoping and praying that things get easier for you and your parents soon. You are such a tough little man. You make us all proud. Hang in there buddy! TJ really misses you and was wondering if he could take Maggie for a walk while you are in Tucson. He knows Maggie must really miss you. We love and miss you and are praying with all of our hearts that this is behind you soon.

Love ya,
The Rileys

Posted by: Pam Riley | Aug 12, 2005 8:50:05 PM

Hi there,
My name is Sharon. I posted a message a while back and your mom was nice enough to send me back a note. My Joey was at PCH in April when you where there for treatment. I read your website often and I am so sorry to hear your week was so hectic. It is so hard to understand all the medical ins and outs of your sickness. I do believe years from now you will look back and be amazed at all you went through. If you are like Joey, I'm sure you are teaching everyone how to be brave and keep a smile. You little guys show us big guys how to keep a positive outlook. I think of you often and show Joey your photos on your site. He really likes the Star Wars pics. If you would like Joey has been sending letters to all the cool new kids we have met. He would love to send you one down in Tucson. If Mom says okay she can email us details on how to send you a hello in the mail.
To Laura,
I still have not had the oppurtunity to meet you in person but my husband and I send our thoughts and prayers to your family. Joey's illness caught us off guard and I am sure you may be on auto pilot like we are. It seems like so much so fast and in other ways it seems like Joey has been sick forever. Lucky for us ( if that's what we can call it) when our kids are graduating high-school and then college and then settling down we can share as we do now the amazing lives of these wonderful boys we have been blessed to have. I pray Noah's body is strong and gets through treatment quickly. I pray you and your husband have some laughter in all this upsetness. I pray for your beautiful life free of appointments, doctors, medicines, and illness to be here before we even know it.

Best wishes,
Sharon Black

Posted by: Sharon Black | Aug 12, 2005 2:56:18 PM

Hi Noah-
We hope everything is going OK today after all that's happened already this week. We wanted to tell you that we've been thinking about you all day (as usual, but even more so) because our favorite radio station here in Chicago is doing a 36-hour radiothon for Children's Memorial Hospital, which is like PCH. They've been playing interviews all day with families who have kids being treated at Children's, and hearing about how brave they all are reminds us of you and what a tough kid you are. Hang in there during this new phase of treatment; we'll be waiting to read more good news about you.

Carrie, Brad, & Kylie

Posted by: Brad, Carrie, & Kylie Skibitzki | Aug 12, 2005 12:20:54 PM

WOW ...what a hard week for all of you!!!

I was very happy to hear that Noah had a sleep over with his good buddy's...I'm sure they had a great time...

We will keep you all in our prayers..take care...


Posted by: Ernst Family | Aug 12, 2005 9:46:40 AM

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