An Elmo birthday
Pointing at the Elmo banner 
Still pointing at the Elmo banner
MomMom and PopPop
Gram and Gramps
Not at all interested in the cake
Birthday party at the hospital Jordan only had high fevers the first night of the birthday hospital stay so the rest of the time was spent waiting for her counts to improve so we could go home. We were discharged on Thursday, just in time for a nice weekend at home.
Craig and I did make a quick trip to meet Dr. Maris at CHOP in Philadelphia on Wednesday. Even though we had already decided to start with the Sloan-Kettering treatment regimen, our oncologists advised to establish relationships with both experts as relapse is common in neuroblastoma and we want to have all options available to Jordan. Similar to our meeting at Sloan-Kettering, Dr. Maris was very impressive and confident in his treatment regimen for neuroblastoma. It is very confusing and difficult to have to two treatment options but no trials comparing the success of the two....and very stressful as a parent to have to choose between the two. Anyhow, big thanks to Gram and Gramps for staying with Jordan in the hospital and to MomMom for accompanying us to the appointment.
Craig and I did make a quick trip to meet Dr. Maris at CHOP in Philadelphia on Wednesday. Even though we had already decided to start with the Sloan-Kettering treatment regimen, our oncologists advised to establish relationships with both experts as relapse is common in neuroblastoma and we want to have all options available to Jordan. Similar to our meeting at Sloan-Kettering, Dr. Maris was very impressive and confident in his treatment regimen for neuroblastoma. It is very confusing and difficult to have to two treatment options but no trials comparing the success of the two....and very stressful as a parent to have to choose between the two. Anyhow, big thanks to Gram and Gramps for staying with Jordan in the hospital and to MomMom for accompanying us to the appointment.
6 comments:
Love the cake!! What a cute little family. :-)
Dear Team Jordan,
I am always so sad to read about another sweet child afflicted with NB--I learned about Jordan through the google news and blog alerts on neuroblastoma. I can tell you have access to many good sources of info on NB-- you might already know about the NB conference in Chicago, the NB handbook @ www.nbhope.org (under resources--220 page pdf download at https://www.nbhope.org/files/folders/chapters/entry53599.aspx) and the n-blastoma list with nearly 700 subscribers on www.ACOR.org (see http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=N-BLASTOMA)
There are several active families with MYCN-amp infants who are going through or have finished high-risk treatment.
My son has been fighting a relapse since May 2005--and he is recovering from a bone marrow biopsy at CHOP at the moment.
www.caringbridge.org/visit/erikludwinski
Please know I am praying for your little precious Jordan!
Isn't it just like a little one to be more excited about a banner, than the awesome cake?!? Just like they always seem to like playing with the box more than the present. :) I'm glad she had a fun birthday with her family. I have to tell you that great minds....or maybe just people with good taste think alike...Caleb's 1st birthday was also Elmo, we have that same gray w/hearts from Gymboree and I have that same gift wrap--pink w/orange polka dots!! I hope that yall are getting some rest time, and that Jordan is feeling o.k.
love,
michelle
Count me in as another supporter for Jordan and your family on the difficult road of neuroblastoma. Our story is sad but not all are and also our daughter was much older at diagnosis ( very old age 10) Always stay optimistic, and search for options, which are more than even just two years ago. You touch upon the central dilemma for the treatment of the newly diagnosed patient: induction and transplant protocol or induction treatment followed by 3F8. I am so glad Donna has reached you and mentioned several resources including the nblast listserv. In the archives of the listserv there are very good discussions about transplant vs going direct to 3F8... but it is a decision that each family must make, as you already alluded to, and already appreciate.
Myself and several co workers at Novartis that I mentioned Jordan to will be thinking of you and following her story.
Sincerely
Mara Stiles
mother of angel Laura (1994-2006)
Boonton Township, NJ
I read of your little girl on Jim Rudd's blog and just wanted to say that I'm thinking of you and your family. You have such an adorable, strong little person there and I know that you cherish every moment you have with her.
Tisha
Dear Kristen, Great pictures of your beautiful little Jordan. You're all being tested for sure but I wanted to encourage you to keep positive thoughts and look forward with optimism. My first granddaughter was born 4 months premature with a grade 4 brain hemorrage. The prognosis was very bad but, three years later, she's overcome it all. These little fighters are very resilient. Hoping for the bestoutcome.
Jack Weishahn, Suffolk EMHP
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