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Happy Friday
By Margot | September 25, 2009
We got back VMA/HVA numbers today: 11.1 VMA and 14.1 HVA. These are the lowest Sam’s numbers have been in a year!   We are over the moon. Sam is home from the hospital but still on hydration so no school or soccer.  We talked Dr. Willert into letting us out yesterday on home hydration so we could do pictures this morning with the awesome Deb Schwedhelm. Though yesterday Sam was still bleeding quite a bit and had a lot of clots, we redid the ultrasound which looked totally clot free and today his urine is almost clear- still pink but nothing like the solid red we’ve been seeing. So, we are in good shape.  We might go out to the school fundraiser tonight or perhaps a little of the USD soccer game.  Sam has a backpack full of IV fluid that he’s carrying around. It’s super heavy when it’s full and Sam was huffing and puffing coming up the stairs last night after waving off any help. So, I told him that’s how football players get strong muscles by going up and down stairs with heavy stuff on his back so he’s happy he’s growing big muscles.   We unhooked him for pictures this morning, Deb was so so great with the kids. I can’t wait to see the pictures. We took them at the beach and the kids wanted to take some with their feet in the water. That degenerated quickly and all of the kids were thoroughly wet by the end. Andy was actually swimming in his clothes. Sam had to keep his port dry as he was accessed but he got as wet as he could have gotten and Charlie got totally soaked and then was miserable in his wet clothes.  Sam’s lobbying to get unhooked for the school funraiser now that he knows it can be done so we’ll see if we go for an hour or so.   His platelets are 59 today so he’ll probably need some by Monday. Hopefully Monday we’ll get unhooked and deaccessed, tanked up with platelets and he’ll be able to go to school for the rest of the week. It would be nice for him to at least get four days in since we are leaving for Philadelphia a week from Monday. He and I got into some awful power struggles over homework in the hospital but he sat down this afternoon and did quite a bit so hopefully he’s not too behind.
Hope everyone has a wonderful weekend. We certainly will. News couldn’t have been much better with numbers close to normal!! Thanks to everyone for their kind thoughts and prayers.   I have one last sort of crazy request, if there is anyone who knows Japanese, we are trying to track down a drug called cepharanthine. It’s Japanese and I think any info. on the web is in Japanese.  Cathy’s dad said he would look into it for us so we have one line on it.  But if anyone knows of it or of course, happens to have any lying around in their junk drawer (ha ha) please let us know.
Margot
Topics: Progress Reports | 18 Comments »
September 25th, 2009 at 11:11 pm
woo hoo on the numbers- hope to see you guys soon running around at school. Angela (Madison’s Mom)
September 25th, 2009 at 11:15 pm
Awesome news!!!!!!!!Thanks for making my weekend once again. As always praying here in Wa.
Luv
Abra
September 26th, 2009 at 1:12 am
Margot, A friend has a son whose friend is from Japan. I am trying to get contact info for you, and will email it to you when I do – likely within the next 2 days.
September 26th, 2009 at 2:03 am
So very happy for you with the great numbers. Have a great fun weekend! Sam, Andy and Charlie are such beautiful boys, it is always a pleasure to read about them. As always, we are keeping you in our thoughts and prayers.
September 26th, 2009 at 3:08 am
Hi Guys, I’m about to call it a night and thought I’d check in and I’m glad I did. Great News on the vma and being home. So happy things are looking better for Sam.
Sorry I don’t speak Japanese but let me know if you ever need help with Italian (we have plenty of those in the family)
Have a fun weekend
Lisa
September 26th, 2009 at 3:40 am
Margot, call this company.
Shanghai AoBo Bio-pharmaceutical Technology Co., Ltd
Click Here To EMAIL INQUIRY
Contact: Sally Yang – Sales Manager
Phone: +86-(21)-51320130 Fax: +86-(21)-51320368
Address: Room 601, No. 1011, Halei Road, Zhangjiang High-Tech Park, Pudong, Shanghai 201203, China
E-Mail: [EMail]sales@aobopharm.com
Web: http://www.aobopharm.com
Profile Inquiry Products
Shanghai AoBo Bio-Pharmaceutical Technology Co., Ltd. is engaged in researching, developing, manufacturing and marketing of new pharmaceuticals and advanced intermediates and providing advanced technology services. We have the advantage of using multi-step synthesis technology and paying attention to researching and developing new technology through proprietary intellectual property rights. We specialize at developing drugs for antidepressants, antiviruses and cardiovascular purposes. We are also experienced in refining, separation and impurity control. We have currently researched and developed about twenty API projects including Temocapril HCL, with ten new projects in process.
Shanghai AoBo Bio-Pharmaceutical Technology Co., Ltd. was established in June 2004 and is located in “Chinese Medicine Valleyâ€. Our R&D center is staffed with highly educated and experienced professionals and is 900 m2, with five synthesis labs, two scale-up pilot labs and one analytical lab.
The medication you’re looking for is one of their products: Cepharanthine.
Blessings, Bev
September 26th, 2009 at 3:45 am
Okay, here are four more Chinese suppliers for Cepharanthine:
China Betapharma(Shanghai)Co., Ltd is a specialist in custom organic synthesizing of a wide range of heter…
Betapharma(Shanghai)Co., Ltd. (China)
Shandong, China Jinan Haohua Indutry Co., Ltd. is engaged in the development and distribution of chemical products s…
Jinan Haohua Industry Co., Ltd. (China)
Sichuan, China Chemner Pharma. Ltd. supplies high purity raw materials for research and bulk production. Our produc…
Chemner Pharma (China)
Shanghai, China Shanghai AoBo Bio-Pharmaceutical Technology Co., Ltd. is engaged in researching, developing, manufac…
Shanghai AoBo Bio-pharmaceutical Technology Co., Ltd (China)
Here’s the Web site with the links to these companies:
http://www.chemicalregister.com/Cepharanthine/rfq/pid45307.htm
September 26th, 2009 at 5:29 am
Margot,
Here is a site that will translate that site for you:
http://babelfish.yahoo.com/
I hope it helps.
Praying for Sam!!!
September 26th, 2009 at 6:07 pm
OH THANK YOU for this update. The catecholamine drop made my MONTH. I am so extremely relieved. We’ll see you there at CHOP! We get there very late Oct 12 (11pm or later at Sheraton), and Erik has tests Tues Oct 13, but surely we can see you sometime before you leave!!!
PRAYING FOR SAM ALWAYS
September 26th, 2009 at 11:33 pm
Yessss!!!!!(double fist pump)
September 26th, 2009 at 11:48 pm
I am so happy to hear your good news. You have totally made my day.
Geoshi…who use to work in the school office speaks Japanese. She and I are still in touch so if you need help, I am sure she would love to help you! Let me know…
♥heather
September 27th, 2009 at 2:40 am
Just a note to say that we’re here to support you all however we can when you’re in Philly. Just let us know. Take care…home you all have a great week.
Love, Pam
September 27th, 2009 at 6:16 am
Great news! I will see if I can track down the drug.
September 27th, 2009 at 6:35 am
Margot and Neil, I have emailed several Japanese scientists and hopefully will get a response in the next day.
September 27th, 2009 at 8:01 pm
Marg –
I havnt read teamsam in a while but am moved to tears every time I do. Am driving with bill and sleeping kids right now reading your posts to him with cracking voice. We are so happy that the numbers are good. And c’mon! “is there a dad in the picture?”. Only Superman! We love you.
September 28th, 2009 at 3:28 am
Awesome news !!!!! Hope it all continues !!!!!
Love and hugs, the Kuhn’s
September 28th, 2009 at 4:36 pm
Great news! So glad to hear it. And can’t wait to see the new photos from Deb.
September 28th, 2009 at 7:38 pm
Awesome!!!