Wednesday, November 19, 2014



Smile, though your heart is aching
Smile, even though it’s breaking
When there are clouds in the sky
you’ll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You’ll see the sun come shining through
for you

Light up your face with gladness
Hide every trace of sadness Although a tear may be ever so near
That’s the time you must keep on trying
Smile what’s the use of crying
You’ll find that life is still worthwhile
If you’ll just smile

In the real world, I wouldn't suggest this to anyone. But I've seen the effect my sadness has had on Ava. And we have found ourselves in a place where the tears have pushed past even the strongest resolve we have had to keep them away. This is the crazy cancer world that we live in where our weaknesses must be hidden so that she can rely on our strength to find her own. 

It's a hard place to be in but we have been doing fairly well especially with the incomprehensible amount of support we have received from our community at home and our new friends in Seattle. These past few days, however, proved to be too much as I had to stay away from Ava due to a slight cold. When I finally saw her small, fragile body laying in that big cold hospital room, I couldn't contain my grief. How did she go through 2 days of TBI already without me by her side? How scared she must have been to enter that room and lay quietly still with no one nearby to caress her head and whisper that everything was going to be okay.

It is Day Negative 3, which means we are two days into Total Body Irradiation and two days away from Ava having her immune system completely ablated to the point of no return. TBI is sometimes explained as bringing someone to the brink of death before being able to infuse life again through new cells. I wrestle with the guilt of knowing what we are asking Ava to do as we lay her on the table to receive the full wrath of radiation while the rest of the team scurries away to avoid being exposed to these harmful rays for even a second too long. Then the wait begins outside the room as we watch the sign blink on and off, "X-Ray In Use." It is infuriating and agonizing to send your child off to a place where even you must not go. Yet, she goes. With full trust in our decision, she goes.

There are no words. There are no words. There are no words.

We have met several obstacles in our short time here with Ava reacting to many of her medications. Her body is very weak with all that she has been through. Yet she finds it in herself to smile when I walk through that hospital door. She smiles when the music therapist gives her a drum to play. She smiles when Gwen does a funny dance move. She smiles when her daddy tells her a joke. Of course there are days she cries, but there are many days she shows us that she is capable of experiencing and appreciating joy. And if she can smile through this ordeal than, God help me, so can I. 

We humbly ask for your prayers. They have a profound effect on us that moves us deeply and fortifies us from within. 

1) Ava will reach Day Zero (Transplant Day) this Friday. She will be receiving her cord blood in the ICU due to her severe allergies. It is the hope of everyone that she does not react to these life giving cells. Please pray alongside us that the transplant will go smoothly.

2) I, Esther, need many prayers to keep a positive outlook. I don't want to discourage Ava in any way. I want to infuse her with hope and joy during her time of desperate need. I can only do this with a strength that is beyond what I have. Please pray that I would smile in front of my sweet girl and give her every confidence that God is with us.

3) Please pray against infection. Without an immune system, even the common cold can be fatal. Ava will have many obstacles to overcome with just the transplant itself. Any viral or bacterial illness could be detrimental to her success. We pray that she would be protected from the bacteria/viruses that are already in her body and ones that may be introduced through the people caring for her.

4) Strength for Mike and I as we head into a time of uncertainty and fear. We are actually very weak and confess that we could not carry on without God's grace and ever compassionate heart toward us.

We thank God that He still gives us things to laugh about and that He has provided friends to share our unspeakable pain with. We don't take you for granted. We thank God for each of you everyday.

1 comment:

Anonymous said...

Esther, we are praying for Ava and all of you. love, Siew-Kim.