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, April 20, 2007

A small look into the future...

Hi everyone! I'm sorry again for not posting in a couple of days. This time it's because things have been busy and I've also been able to spend some time away from the hospital - but didn't take the computer with me. There really isn't very much new to report. Ellie is getting stronger every day and being weaned off of many of the medications. She is doing physical therapy and practicing her walking and breathing. We are very pleased with her progress. I also just realized that I totally forgot to tell you that her chest tubes came out back when we were in the P.O.U. Her pain at that point was significantly reduced.

I'm not sure exactly when Ellie will be able to leave the hospital. She is doing so well that I imagine it won't be long... There is still a bit of a process involved in weaning down the methadone as well as the TPN (intravenous feeding). We have spoken with Ellie's oncologist, Dr. Kushner, and we have a plan for the next treatments. Once Ellie is able to leave the hospital, we will take her home for a week long break with no central line - or lines of any kind - and no doctor's appointments. She will simply get to rest, recover, play and take baths! (Taking a bath is the most important thing to her right now as she has been unable to be in water above her waist for 7 months because of her Broviac. We are so looking forward to having her tube-free, even if it is only for one little week! After the "vacation" Ellie will have a round of "mild" chemo as well as finish up the radiation to her head (she has 2 days - 4 treatments - left). After that, there will be some tests to determine what cancer is left in Ellie's body and we will hopefully be able to proceed with the 3F8 - Monoclonal Antibody treatment. After Ellie's first 3F8 treatment she will receive abdominal radiation. Even though her primary tumor in her left adrenal gland is gone, it is important to irradiate that whole area to ensure that the tumor does not return. We don't want any sneaky little NB cells remaining to pop up later. (Neuroblastoma is known for doing that!) Radiation to the abdomen causes nausea and low blood counts, so it is important not to do it too close to chemo. The radiation will be done during the three week break between 3F8 treatments. Nothing is set in stone yet, but we are hoping to be able to go home to Florida after her second treatment. Then we will need to travel back here once a month - 1 week of treatment, then 3 weeks off. Eventually it should stretch out to 8 weeks in between. As long as Ellie's body does not start to fight the treatment, this schedule can last for up to 2 years. I will give more details about all of this when we get closer to treatment. For now, I just thought you might be interested in a little overview. Of course, as we all know now, plans are made to be broken... but it does feel good to have a sense of what to expect.

As for the immediate goals: getting FOOD into Ellie is our number one task. Thankfully she has taken to eating better than I thought possible, but she still needs to get more calories in so that she can go home without the TPN. So as you're thinking of Ellie and wanting to know how to specifically pray, please pray that she will be able to eat good quantity and that her muscles will grow stronger each day. So far she has been able to continue coughing well - which is important to keep her lungs clear - so please pray also for protection from pneumonia. She also still has some of the blood clot left in her right pleural cavity.

I have some wonderful photos of Ethan to post that Stan sent, but for now I'm having a little technical difficulty getting them onto the blog. I'll put them out as soon as I can. We miss our little buddy SO badly! The days pass quickly here and I try not to think too hard about how long it's been since I've seen him... But when I let myself go there, I just want to cry when I think about how much I just want to wrap my arms around Ethan and not let him go ever again. As usual, I have to remember that the same infinitely loving and faithful God who holds Ellie in the palm of His hand will not let my little boy go either.


At 1:21 PM, Blogger Tami said...

Hi Sarah,
I have been praying especially for Ethan this week. I'm glad to hear that Ellie is continuing to recover. This is a long road ahead that you have described. I'm glad that there will be a week of R&R for Ellie before more treatments.
Ellie and your family are continually in my prayers.
Tami B.

At 7:07 PM, Anonymous Kristina said...

Thanks for letting us in on some of the big picture. We are praying Ellie eats well and LOVES eating lots of what is good for her and helps her gain weight. It is very helpful to know how to pray... long term.
Hope you each get some much need GOOD sleep tonight!

At 7:30 PM, Blogger Ruthi said...

Every night before bed we pray for Ellie, we will add Ethan too.
Love, the Kime Family.

At 8:09 PM, Anonymous Anonymous said...

Thrilled about the good news!
Much Love, Garcias in Paradise, CA

At 8:38 PM, Anonymous oneofhisfriends said...

Dear John, Sarah and all,

I couldn't have imagined a more dramatic medical situation than that of your last three weeks, much less last 7 months, and with you, thank God for the road ahead.

The preparations of the heart in man, and the answer of the tongue, is from the LORD. (Proverbs 16:1)

How excellent is thy lovingkindness, O God! therefore the children of men put their trust under the shadow of thy wings. (Psalm 36:7)

Great is Thy faithfulness, O God my Father;
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not;
As Thou hast been, Thou forever will be.


Great is Thy faithfulness!
Great is Thy faithfulness!
Morning by morning new mercies I see.
All I have needed Thy hand hath provided;
Great is Thy faithfulness, Lord, unto me!

Summer and winter and springtime and harvest,
Sun, moon and stars in their courses above
Join with all nature in manifold witness
To Thy great faithfulness, mercy and love.


Pardon for sin and a peace that endureth
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!


In our faithful God

At 11:07 AM, Anonymous Anonymous said...

so glad to hear ellie is getting stronger. we will continue to pray for each of you and continued healing for ellie. nalways in our prayers. love simons family.


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