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CHOP/Philly/Home/The Plan
By Margot | July 17, 2009
We are home now. Got home last night around 8. We had a good meeting with Dr. Maris and Diane Baniewicz and left with a lot of hope for the new trials just started and some things around the corner that we will aim for.  We are going to do the Ultratrace MIBG treatment. We are lucky that there is a slot for Sam on this trial. It is a formulation of MIBG that as I understand it, ensures that every MIBG molecule delivered is radioactive -giving much more bang for the buck. The frist date for the actual infusion of the isotope is on August 26th. There is a lot of workup before then though. I’ll post our actual schedule below. We got to meet Caryn Franca, mom to Nick http://www.caringbridge.org/visit/francafamily who we’ve emailed back and forth with quite a bit. She came and sat with us in the waiting room and showed us the food court and helped the boys pick out their lunch which was very helpful. Thanks Caryn and so great to meet you. Nick was getting his port removed. He has just finished the Ultratrace and had a very good scan. Yeah Nick! We didn’t get to meet Nick but hopefully in the sometime in August.
We still don’t have an actual read of the San Diego scan as Dr. Modak couldn’t see much and wanted his team to digitize it so he could read it better. Until then he’s calling it stable.  Hard to compare scans from different institutions. From our eyes there was improvement and that may be as official as we get unless we hear some more from Dr. Modak. He thought MIBG was a good next step as well. Sam’s numbers from today’s blood draw: LDH 626 White: 8.4 Platelets 148, HM 10.5. So he’s in good shape just in time to start chemo on Monday morning. We will have IV Topo/Cytox for five days next week. We’ll do it outpatient this time and a lower dose than what he just had since it is not to get to 3F8’s but a bridge to the MIBG treatment. For those of you considering the treatment or anyone curious to know. Here is what Sam’s summer schedule looks like:
July 20-24 IV Topo/Cytox as an outpatient with lots of hydration two hours prior and three post making for a long day and hopefully a protected bladder.
August 12th: Arrive in Philadelphia
August 13th and 14th: bone marrows, biopsys, scans and lab consent done by 3pm on the 14th
Return to CHOP for dosimetry scans approx 12noon on August 19th, 20th and 21st
Return to CHOP 8/25 no later than 2pm for admission
8/26 foley catheter placement with anesthesia
Ultratrace infusion approx. 2pm
Discharged maybe August 29th or 30th
Follow up MIBG scan on August 31st
Stem cell infusion at CHOP on September 9th
Plan on leaving Philadelphia area on September 10th or so.
So, what are you doing on your summer vacation?
Though Sam has every right to be bitter, he’s not and I’m not going to be bitter because I don’t have any right to be. I’m so thankful that we have a shot at this. That we have a chance and a hope to hold on to. That we have so many people that help us out and that love Sam. On the very start of our trip, our plane to Philadelphia left San Diego at 6:30 in the morning. We wrongly thought that a flight that early would mean an empty airport so we didn’t leave a lot of extra time. Our first sign that things were going to snag was the woman at the curbside check in who was moving in slow motion to begin with. As she checked our bags and boarding passes she said that the Andrew’s ticket wasn’t showing up (Neil had tried to check in online but the USAir site wouldn’t let him) and that we would have to go upstairs to the ticket counter and sort it out. She still hadn’t checked all of the bags so we decided I would take the kids upstairs and Neil would finish with Slo Mo downstairs. As I walked inside and looked up the escalator to the second floor I saw a huge winding security line. San Diego is a very small airport serving a large city and anyone who travels a lot will tell you it has the worst security lines in the country -we didn’t think it would be the case that early but apparently USAir has about 15 flights leaving San Diego at 6:30. The first thing I thought was “We are going to miss our flight.” Then I started to spiral into all of the complications that would go along with that and started to panic. I had to take the boys to the bathroom before getting to the counter because Andrew was dancing and Neil caught up with us and started talking to the woman at the counter. The first thing out of her mouth was “You are going to miss your flight” and Neil’s reply was, “We can’t miss our flight. We are not going to miss it.” After she heard our story from Neil she told him to go through first class security line – still very long. We waited a few minutes and Neil went up to the head security lady and told her we had to get our plane. A nasty lady said, “We ALL have 6:30 flights and we ALL have to catch our planes.” But then the security lady said we could go next and people started moving over for us and we got through the ID check with the slowest moving TSA guy I’ve ever seen – I swear it was like everyone at the airport had slow pills for breakfast- then we frantically got all the kids shoes off, DVD players out, work laptop out and shoved everything through the scanner and as I was racing to throw everything back together and Neil was taking off Sam’s new belt that beeped a woman said, “Is this your laptop?’ “Yes,” I said, thinking she was going to move it and then she did the most wonderful thing. She put it in it’s case and then put all three of the children’s shoes on and I started to cry as I was throwing things together. She and her husband yelled “Go Go Go!” and the five of us literally ran to catch our plane. The gate area was totally empty and we made it right before they shut the doors. And that woman is why I will not let myself be bitter. Because our neighbor Billy woke up at 5am to take us to the airport so we wouldn’t have to park. Because the Londons who lost their own beautiful daughter Penelope two years ago to NB are kind enough to throw Sam a birthday party with a cake and give him a camera that he hasn’t put down since he got it. Because our friends take our other two boys and show them fun when they need it. Because Uncle Matt takes off work to help us out and because so many people friends, family, doctors, nurses and strangers come out of the woodwork to help us. Reading Vickie’s wonderful and sad post today reminded me that I wanted to write about our airport helper and all of our helpers. http://erinbuenger.blogspot.com/
It will be quite a logistical feat to organize the treatment from the exact opposite end of the country but we will do it whether we just stay there the whole time, stay in Michigan some of the time, send the kids to NM, bring everyone for part of the time, all of the time or none of the time remains to be seen.
The boys liked Philly by the way, though the hotel we pricelined had a “bad pool.” It was only 3 and a half feet all the way across. They still had fun in it playing Marco Polo. Sam took pictures of the Ben Franklin bridge and we ate breakfast at the Reading St. Market at a Dutch Amish place that was awesome. We walked down to Independence Mall to see The Liberty Bell, The Declaration of Independence and the very first Supreme Court. It was very neat though the implications were pretty lost on the boys, I told them they’d be impressed once they started studying it in school. Sam took pictures of everything. He loves being a photographer! For such a sporty guy he has a real artistic side to him. I think he took a picture of every statue and sign there was ;-).
Sorry for the long post. More soon.
Margot
Topics: Progress Reports | 15 Comments »
July 17th, 2009 at 11:37 pm
So glad for the good news! We have been praying for Sam daily, knowing first hand that CHOP is the #1 children’s cancer hospital for a reason. We will never forget the royal treatment that we received during our month-long inpatient on the 3rd floor. What a blessing to know that Sam will be benefitting from all of the research and trials that will give him a good chance to BEAT this nasty NB once and for all!
Thanks for the update – and for sharing the story of the woman at the airport. God always knows when we most need someone to do the unexpected blessing. I’m so thankful she was there to do one for your family.
Praying for all,
Sandi Queen (Jeremiah’s Mommy)
http://www.caringbridge.org/pa/jeremiah
July 18th, 2009 at 2:58 am
Glad you got into the trial- best wishes. Great story about the airport. Angela (Madison’s Mom)
July 18th, 2009 at 5:31 am
Neil and Margot,
You and your family are welcome to make our house your home during your stay in Philly. I’ll give you a key…you can come and go as you please. My husband and I work full-time…you’d have the run of the place most of the day and I hope you and the kids like a big dog because we have one. Very friendly. There are lots of young cousins nearby in Wilmington, plenty of family to support you with child care, provide fun and distractions for the kids etc. We would love to have you and help however we can.
Love, Pam and all your East Coast Hutchison cousins.
July 18th, 2009 at 3:23 pm
I was breathless reading your morning flight out of San Diego, and so happy it ended with you all boarding instead of sitting on the curb. I wish I was located in a compatible area and that I could be part of the Hutchison planning process for August.
Good luck with clinic days this week and try to fit in some fun around it.
VB
July 18th, 2009 at 3:27 pm
Great plan! I love plans! Since your summer is going to be so full – we will plan on seeing all your smiling faces when school starts. Its just about that time when you’ll need a vacation from your ‘vacation.’ Miss you all – Best wishes and love on the way.
July 19th, 2009 at 3:53 am
I have tension pains in my neck reading your airport story! I have some family in Philly. What can we do to help? Im so glad Sam got in that trial- great news!
July 19th, 2009 at 7:29 pm
Hi Marg,
I will be in NM at my mom’s for about 2 weeks at the end of August. If you decide to have Charlie and Andy stay with your dad and Stephanie, we would be more than happy to help out while we are there.
– Nicole
July 19th, 2009 at 8:21 pm
I’m glad to hear that you have a plan! And a good one, it seems. It is going to be a real adventure. I hope the ultratrace just obliterates the NB!
Hey – the Philadelphia RMH is pretty sweet! It was the first RMH in the country. Hans loves Dog Night on Wednesdays. No pool though:( There is a pool on Walnut, I think it is part of Penn. I wonder if the public can use it???
Lara
July 20th, 2009 at 2:37 pm
Hi!!! Welcome home! Congrats on getting into the trial-that’s great news! Let me know if Andy wants to come over to play/swim when Sam & you are stuck in the house for the IV. Tell Sam after the chemo- when he’s feeling up for it -we have a date to go to Soak City!!! I passed by the Los Alamos Fire Dept. in White Rock & almost knocked on the door to see if your Dad was in……(-:
July 20th, 2009 at 3:30 pm
I am sure you feel so much better now that a decision is made-imho a great one. i add my family to your list of support, they are in Phila and would love to help. Paige is one year past the ultratrace and doing great! Sam is next.
July 21st, 2009 at 5:06 am
Go Sam Go!
July 21st, 2009 at 1:30 pm
Dear Marg, Am up here in Clarks Summit,Penn. and Gean&Jean want to helpout also; and can offer their beautiful home as a base while you are up here! Its two hours away from Philly.Really, think about it. Jean is going to write immediately after. Also,I will be more than happy to escort Andy&Charlie to New Mexico after Charlie,s birthday! Any plan you workout everyone will help! It will all fall together, I promise. There are so many people that love you and are willing to help. Much Love,Mom, Grandma Sara
July 21st, 2009 at 5:32 pm
Neil and Margot – As Pam said there are lots of us here in Wilmington who are available any time to help entertain the boys or whatever you might need.
Love, Lisa and the rest of the Wilmington cousins
July 22nd, 2009 at 5:46 pm
“I love it when a plan comes together,” says the A Team. Will keep my fingers crossed for good results.
What an airport story…and the random act of kindness that made the trip possible.
If Charlie & Andy end up in NM for a while, let me know. Will try to arrange the long-delayed tether ride in Levity hot air balloon in ABQ if the wind cooperates. And, of course, we’ll get Sam one, too, the next time he’s here. Best, Jan
July 29th, 2009 at 1:48 am
Margot,
Although I just emailed you directly, I just now read the whole post….listen, if you and the boys need a break and need to get out of the city of Philadelphia, we (Dan a.k.a. REX, Baby Dane and I would be more than thrilled to have you over for a picnic or ANYTHING) We are approximately 17 miles (be that 35 or more minutes) outside the city. We have a HUGE park in our backyard and we belong to a great big pool if Andy and Charlie need a break. Its a small house, but I know that sometimes you just need a home, not a hospital. PLEASE take me up on our offer….we are around for all of your time here except for the week of the 29th- other than that, please let me know how I can help. Even if you want me to take on Andy and Charlie so you and Neil can have some time with Sam alone….I am up for it. In fact Dane would LOVE IT!! I can fit both boys in my car. Let me know….