We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Friday, February 16, 2007


Thank you all for praying these last several days! We have been living in a wierd sort of time warp where everything almost felt "normal" again since nothing was happening with Ellie's treatment. This has been her longest time without chemo or other sickness, so it has been nice to see her feeling well and happy. It has just been strange to feel so close to normal...but not.

We have been gathering information, talking with Ellie's oncologist, and just waiting. I have not meant to leave you all in the dark regarding the information, but it has been complicated. I still don't have difinitive answers about much, but I will give you the scenarios that we are facing in the upcoming days and months.

The delay in Ellie starting the fifth round of chemo was due to a couple of factors. First, Ellie's oncologist was doing some research and conferring with the doctor we met in Jacksonville to determine whether to change the drugs used in round five. Because Ellie's bone marrow is not responding the way that we had all hoped, and because her counts are not re-bounding as high or quickly as we would like (indicating that her body is starting to tire out) the doctors looked into the possibility of changing the drugs to new ones that might effect the cancer in a different way (as opposed to giving her the same old ones and then STILL hitting her with new ones later). Another thing that they had to take into consideration was whether changing the drugs would taker her out of the running for a future treatment. The doctors decided that it would be best to continue on with the origional protocol. The second delay happened when we decided not to take Ellie in for chemo until we were able to sit down in person with Ellie's oncologist and listen to all of the information and express our thoughts and concerns in order to make the most informed decisions possible. During this meeting, we asked him to contact a doctor at Memorial Sloan Kettering Hospital in New York regarding a treatment option there. As of this morning, we have a plan set in motion, always knowing that there are variables along the way that may change the course...

Tonight Ellie will go into the hospital to start her fifth round of chemo, using the same protocol that she has been on. (On this protocol, cycles 1, 2, 4, and 6 use three chemo drugs; while cycles 3 and 5 use two completely different drugs. One of the drugs used on cycles 3 and 5 effects Ellie's hearing.)

After cycle 5 is complete, Ellie will undergo CT Scans of her head and abdomen as well as a re-check of her bone marrow. Once her counts are high enough, Ellie will undergo surgery to remove her left adrenal gland, which holds the primary tumor.

After surgery there are two possibilities. The point at which the road divides hinges on the bone marrow results.

First fork in the road: If Ellie's bone marrow still shows Neuroblastoma present, she will be given one or two cycles of chemo using one drug that she has had before, plus a totally different drug. These will be given to supress her immune system (as well as hopefully reduce the cancer in her body) to prepare her for a treatment in New York, given at Memorial Sloan Kettering. This treatment is known as Monoclonal Antibody. Ellie will be given a mouse antibody that should attatch to any Neuroblastoma in her body and "highlight" it in a way that enables her own defenses to identify and attack the cancer. (Somehow the Neuroblastoma cells are invisible to Ellie's defense system, and so this treatment was designed to put a spotlight on them and lead the person's body to do what it was designed to do: attack the intruders!) We love the whole concept of this treatment - it follows along with our basic belief that God designed our bodies to be able to heal and function in a wonderful way. The reason her immune system needs to be supressed first is so that her body will not be able to get distracted by the mouse antibody and attack that! This antibody is given as an outpatient proceedure, once every so many weeks over a yet-to-be-determined length of time. (We have heard that it can be between 6 months and 2 years.)

Second fork in the road: If Ellie's bone marrow shows no signs of Neuroblastoma, Ellie's doctor and the doctor in New York both recommend harvesting her stem cells. In New York, they prefer to store the stem cells and wait on the transplant, while continuing on with the Monoclonal Antibody at this point. (Some patients never need the transplant!) Ellie's oncologist here recommends going through with cycle 6, then proceeding to bone marrow transplant, followed by radiation to the tumor sites, with the option of going to NY for Monoclonal afterwards. (There is a study being done in Jacksonville using a monoclonal antibody which Ellie would be eligible for at that point, but there is only a 50% chance of Ellie getting the antibody because it's a study. We do not like this option.) Should Ellie's bone marrow be clear, it is our preference to go through with the one or two cycles of different chemo and then go to NY for treatment with the Monoclonal Antibody instead of following the standard protocol.

As you can see, we have been weighing many things over these past few weeks. We have been discussing much of this for months, actually. We have been waiting for the timing to be right, and in some ways God has allowed a natural flow to the course of things. We are trusting His leading in the direction and steps that are being taken now, and we trust that He will lead us when or if the time comes that we must decide between courses of action. Thank you all for the many prayers for wisdom on our behalf.

Today we have a flurry of activity to get ready for yet another hospital visit. The extra time was such a blessing for Ellies heath and strength. I'm hoping that her check in weight tonight will be 50 pounds! Last night she was 49.8. My next post will be from the hospital. I will keep you up on how it goes. Thanks so much for all of the love and support that you give! It means more to us that you will ever know.


At 2:59 PM, Blogger mcovington1 said...

Dear Sarah and family: Greetings from snowy Pennsylvania; we've been friends of the Newton's for a long time. Praying for God's peace during round 5!! Mollie

At 5:25 PM, Anonymous Debbie said...

We are continuing to pray for all of you.
Roger, Debbie & Kaeli

At 7:12 PM, Anonymous Anonymous said...

Thanks for keeping us informed. We are praying much for you and are thankful for how the Lord continues to gently lead you along and give direction, help, and peace.
Our love,
Paul and Carol Bramsen


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