Wednesday, October 29, 2014

Welcome to Seattle!

Although our first week in Seattle didn't go as planned, we feel extremely blessed to be here.  We know that God's ways are higher than our ways and we've been praying for clarity to see how these hiccups might actually be blessings in disguise.

Without fail, we see God is faithful! Even though it totally sucks to have to spend an unexpected week in the hospital considering we still have 6 weeks in-patient for transplant to look forward to, it has made it extremely convenient to get all of her procedures done. Had Ava been healthy and out-patient, we would have had another jam-packed week of tests and procedures. But, because Ava was in the hospital, they were able to do many of the tests in her hospital room. And, in between, she was able to rest in bed and play. 

On Monday, she had both her ECHO and EKG done while laying in bed. She was also able to get her bone marrow biopsy and her spinal tap (with chemo) done downstairs in the Operating Room. Everything went smoothly and she was able to eat by 4:00. 

Ava getting an ECHO of her heart.

Ava getting her EKG done right in the comfort of her hospital bed.

On Tuesday, an ambulance picked her up to take her to University of Washington Hospital to meet with the radiologist and discuss the effects of radiation as well as simulate a session of radiation. Starting November 17, Ava will undergo 4 days of intensive total body irradiation to oblate all of her bone marrow. It is essential that Ava stay completely still during radiation to make sure the rays are going to the proper place, so the doctors were planning on using general anesthesia. However, since Ava needs radiation 2x a day, she would essentially be NPO (no food or water) for 4 days with only a few hours in the evening where she would be able to eat and drink. We thought this might be too hard on her so we asked her to do it awake. After spending an hour with her, the doctors all agreed that Ava seemed to be more mature than the average 6 year old and would be able to comprehend the need to stay still and would comply. I have to say, Ava blew us away with her stamina and her obedience. She laid completely still while they did practice runs with the radiation. 

Getting a ride to UW.

The hardest part was leaving Ava in the room while everyone else, including myself, walked out. After telling me about all the negative effects of radiation, they wanted me to willingly leave her there...I don't know how my feet actually walked out of the room that was "too dangerous" for me while Ava laid on the table ready to receive the full wrath of all those toxic rays. I haven't cried much since I've been here, but I couldn't keep it all in as I waited outside the room watching the "X-RAY In Use" sign blink on and off.

Outside the room where Ava was receiving radiation.

The negative effects of radiation are-
Most likely to happen: infertility, growth issues (including secondary sex characteristics), cataracts in the eyes, and learning issues (processing speed) in the future.
Might happen: hypothyroidism (this would require her taking a pill for the rest of her life), lung issues, some organ issues, secondary cancers. 

Later that day, Ava was able to receive her CT scans of all the vital organs to make sure she is healthy for transplant. The good news is her EKG, ECHO and CTs all came back normal!

On Wednesday (today): Ava was set to be discharged at noon but now we are awaiting another procedure because the CT scan detected some irritation in her lungs so the doctors are trying to rule out any other infections. Her cold sores all look contained and are healing up nicely. However, Ava has to be NPO again today for the procedure. 

We also found out the results of Ava's bone marrow biopsy today. Her MRD status is still positive with 0.007% cancer cells detected. Although this number is not ZERO, we still choose to praise God that the number has trended down and is no longer at %0.03. Admittedly, because Ava's MRD is positive, the prognosis remains. However, Mike and I wonder if God is setting up the situation for something incredible that points to HIM through and through. Without a zero MRD, we can't rely on statistics to give us peace. Instead we look to him for healing and, should it occur, there will be no doubt who made it happen! 

Thank you so much for following Ava's story and for keeping her close to your heart! Here are some specific prayer requests we have regarding Ava:

1) Please pray that the effects of radiation would be minimal. Infertility is hard enough but having to deal with hypothyroidism and learning issues would be very difficult too.
2) Please pray that she would stay healthy until transplant and throughout the whole transplant process.
3) Please pray that we would have a few good days to spend as a family before going into transplant. So far, we have been in-patient for most of our days here and would like for Ava to have a break from the hospital before going in for transplant.
4) Please pray that Ava would NOT relapse after transplant despite her MRD status and that she would be in the percentage of children that are completely healed of this cancer!

Your prayers are felt--really, they are! I feel them every morning, through every setback, and through every praise! We thank God for each of you.

Wut? Cancer? It ain't no thang.


Susan :o) said...

Our prayers are with sweet Ava, your family and the doctors, nurses and residents who are working on Ava. "All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us."
2 Corinthians 1:3-4

David said...

Esther, thanks for all the update on Ava. We think of you and family, we pray strongly for Ava to win the battle. The number doesn't mean, 0.007% or 0.03%, that is based on the data, Ava is unique, the Lord has her unique numbers!

Anonymous said...

Yo, good post ! Our prayers are with Ava and you all.
Our God is mighty to save and Our God can do what can't.