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.

Tuesday, May 15, 2007

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.

9 Comments:

At 10:02 PM, Blogger ~T said...

Thank you for the informative update. I am so glad you got to have a nice vacation in Florida~ it sounded wonderful!

Still praying in Texas.

Terri, Tricia's friend

 
At 10:05 PM, Blogger BreezieGirl said...

Thanks for the update! Glad to see that the surgery was a success! Best of luck in the current treatment (and many many prayers too)!

One question though... will the finish the 14 rounds of radiation to the head or has treatment stopped with the 10th round?

 
At 5:11 AM, Anonymous The Buhls in North Texas said...

Thank you so much for the thorough update especially for those of us who are relatively new (while you were in the midst of the ICU time) it helps keep perspective. What a LONG way Ellie has come! Will be praying for tolerance and effectiveness of the chemos and no unmanageable side effects to the radiation. Ellie - there are some people in Texas who think you are great! Would you like a baby goat named for you? Our favorite doe (named Norman - a long story!) looks like she will have twins sometime in the next week.

 
At 5:44 AM, Blogger oneofhisfriends said...

I'm praying for our Creator to share his Insight with the doctors.

I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well.
My substance was not hid from thee, when I was made in secret, and curiously wrought in the lowest parts of the earth.
Thine eyes did see my substance, yet being unperfect; and in thy book all my members were written, which in continuance were fashioned, when as yet there was none of them.
How precious also are thy thoughts unto me, O God! how great is the sum of them!
If I should count them, they are more in number than the sand: when I awake, I am still with thee.
(Psalm 139:14-18)

Agapé

 
At 6:35 AM, Anonymous Anonymous said...

Thank you for the explanation! It really helped to have it 'spelled out' for us like that!!! So incredibly thankful that the surgery went well and are praying for you all as you look towards the future and get through day by day! les

 
At 10:26 AM, Blogger c.g. said...

Sarah,

Thank you so much for the past and the future timelines.

Thank you for all the pictures and shared family times.

When reviewing your time table this verse came to mind:

"The LORD himself goes before you and will be with you;
he will never leave you nor forsake you."
Deuteronomy 3:18

You've been through so much and much still to conquer so it is such a blessing to know that underneath you all are the everlasting and supportive arms of our loving Lord.

Everywhere Your Shadow Falls

The waters rose and swept out to sea,
In my distress I cried out, “Rescue me!”
I set my heart where earth and heaven meet,
In you I place my trust and I believe
That ev’rywhere your shadow falls is holy ground.

Ev’ry time you whisper all creation bows.
And though I’m weak and made of clay
I’m standing in you now ‘cause I know
Where your shadow falls is holy ground.

My prayer ascends past stars and galaxies
And finds its way to you, my gracious King.
You set your heart to fill the in-between
With ev’rything you are and all I’ll need.


Continuing to pray for strength for the battles and peace for your hearts through it all.

 
At 3:46 PM, Blogger Gena said...

Sarah,

Thank you for the updates... Honestly with everything going on, I do not know how you manage to post them but am grateful you do. You are in our hearts and prayers! Just remember the words of the Marc Shultz song, "He Will Carry Me"...

The Haviland's

 
At 4:58 PM, Blogger Sheila said...

Thanks for the updates! We are praying for smooth recovery through each little step. God bless you for you patience!
Sheila

 
At 8:35 PM, Anonymous Janet said...

Hi, What an amazing journey that God has brought and sustained your family through. Can't help but think of "In his heart a man plans his course but the Lord determines his steps" (Proverbs 16:9) Now that you have more steps to take we will continue to pray for wisdom for you and the doctors so that it will be "Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, 'This is the way, walk in it.' (Isaiah 30:21) In Prayer, Janet

 

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