Treatment Plan

Hi everyone. I'm so sorry for not posting to let you know that Ellie's surgery was a great success. She is quite sore, but not enough to take something for it - everytime I even offer Tylenol she gives an emphatic "no!". We were very happy with how well she did, and are looking forward to all of the benefits of having a medi-port... one of the greatest being no more IV's. Ellie hates getting an IV.

The big picture update is rather complicated and confusing. Thus my lack of posting. We have basically been absorbing the information and trying to sort it all out for the past couple of days. We are still waiting on a couple more test results, but we have a basic idea of where Ellie's cancer stands at this moment. Excluding the bone marrow (results pending), there are only two locations in her body showing active Neuroblastoma: the tibia of each leg (just below her knees). There is what appears to be a "calcification" in the area of Ellie's left adrenal gland - the site of her primary tumor. Yesterday Dr. Kushner sat down with us and explained the possible upcoming treatments. The confusing part is the timeline. We are extremely pleased that Dr. Kushner is taking into account how fragile Ellie's body is right now given all that she's been through. He has told us that while Ellie still does have some disease present, it is at a "manageable" level so he will be able to move slowly with some things and pay attention to what Ellie's body is able to handle at each step. It came as something of a shock, but he also told us that he feels that Ellie will need to have surgery to have the calcification removed. As difficult as it was to hear, I must admit to being a little relieved because I've always felt nervous about leaving that area alone and hoping that radiation would take care of any possible remaining cancer cells. I have had the thought before that I want a surgeon to actually lay eyes on the inside of Ellie's body so that we will know what is going on in there. Dr. Kushner mentioned that it is possible for a patient to be opened up for one area to be removed, only to find that the cancer has spread elsewhere - such as the lymph nodes. Because the cancer is reasonably stable in Ellie's body right now, we do not have to rush her in for surgery before her body is able to handle it. I'm so happy about that.

I thought that now might be a good idea to post a past, present, and future treatment timeline... I've included specifics that might not be of interest to everyone, but can be helpful to other parents of kids with NB. Most of you will be interested in the current and future portions.

PAST TREATMENTS:

September, 2006
Diagnosis: Neuroblastoma Stage IV
Tumors in her sphenoid/ethmoid sinus cavity, spine, ribs, pelvis, femur, left and right tibie, left adrenal gland (primary tumor), and bone marrow

9/30/06
High Dose Chemo - Round 1
Vincristine, Cytoxan, Doxorubicin

10/01/06

Seizure. Diagnosed SIADH on 10/03/06

10/24/06
High Dose Chemo - Round 2
Vincristine, Cytoxan, Doxorubicin

11/04/06
Admitted to hospital with 3 tiny blisters.

11/09/06

Diagnosis: CHICKENPOX

12/11/06
High Dose Chemo - Round 3
Etoposide, Cisplatin

1/09/07
High Dose Chemo - Round 4
Vincristine, Cytoxan, Doxorubicin

2/17/07
High Dose Chemo - Round 5
Etoposide, Cisplatin

3/01/07
MOVE TO NY
EXTENSIVE TESTING: active NB found in femur, left tibia, right tibia, scull, bone marrow

SURGERY CANCELLED DUE TO DISAPPREARANCE OF PRIMARY TUMOR

3/14
High Dose Chemo - Round 6
Topotecan, Vincristine, Cytoxan

3/21/07
Radiation to the head
10 of 14 rounds completed

3/28/07
BROVIAC INFECTION
SEPSIS/ INTERNAL BLEEDING
ONE MONTH IN THE HOSPITAL (18 Days in the ICU)

5/07
ONE WEEK VACATION IN FLORIDA

CURRENT TREATMENT:

5/14/07
Low Dose Chemo - five day treatment
Irenotecan (through port), Temodar (oral)

Next Week:
Radiation to both legs

FUTURE TREATMENT:

(Not necessarily in the following order.)

• More Low Dose Chemo (uncertain how many rounds)
• Surgery
• 1 Round High Dose Chemo (it is important to have high dose chemo just prior to starting the 3F8 treatment)
• 3F8 Monoclonal Antibody (Multiple rounds)
• Abdominal Radiation

So as you can see, there is still much more treatment to follow... Ellie has just completed her second day of the low dose chemo. We are told that it shouldn't lower her blood counts terribly and that the biggest concern is diarrhea. We are also told that everyone's different and have heard of one boy who's counts dropped just as low as they do during high dose chemo and we've also heard of one boy who ended up with such terrible diarrhea that he was on IV nutrition for weeks. So there are all extremes and all possibilities. We are hoping that Ellie tolerates this round well. This is a new experience for us, as for the first time ever, Ellie takes one of the drugs orally. The other one takes one hour to go through her line. This happens for five days - Monday through Friday. By next week Ellie should begin radation to her legs.

Well... that's the scoop. I'm sure it's a lot of information to take in. Thank you all for your prayers and for your patience with me when I'm slow in getting the latest out to you! We love you all.