Tuesday, March 4, 2014

Chemo Day 3 - From Esther's Heart

(I'm so sorry for the delay in getting this post up. Our internet went out last night for several hours, projected to return at 5am. I tampered with the dates/times of these posts so that they will appear with yesterday's date of March 4).
I have been copying Esther & Mike’s updates and pasting them to the blog. There will also be times like last night when Esther will post directly on the blog here. And then there will be times (like tonight), I will do my best to be a good interpreter/messenger.

Today was Day 3 of Chemo. As Mike mentioned, Ava was in unbearable pain today from her spinal tap yesterday. Ava is not a complainer, so to watch her suffer this way is beyond heartbreaking. Even despite all her food allergies and prior ER trips and hospitalizations, she is full of compassion and love for others and carries such a tender heart. When examining the area of her spinal tap, to discover not one, not two, but FIVE needle punctures was horrifying. Is it possible to remain strong in her presence?

Her appetite has dwindled as a result of the chemo. She may want to eat something she sees, but ultimately not have much taste or desire for food. She’s been given a large bucket to fill when she’s good about taking her medication - each time she takes her medicine, she gets to put something in the bucket. With the numerous meds she's taking each day, the bucket is almost filled, and that's only counting the oral medications, not the IV meds. Earlier today, we had to wake her up to get her to take her medicine. She was grumpy and angry and, in her frustration, kicked the medicine cup, knocking the pill to the floor. Realizing what she had done and knowing the medicine was now dirty, she humbly said, "I'm sorry, Mommy. I didn't mean to kick the medicine onto the floor. I was just frustrated." Please, please continue to pray for Ava. This has been so hard for her.

As a mom, I don't know if there's a deeper pain than watching your child suffer and being helpless to do anything about it. The realization that we are only at the beginning of the journey is overwhelming. I don’t know how we will survive the road ahead. I know that God can do anything, yet my mind can’t help focusing on the sober reality that she may not make it, and I’m not ready to lose her. Even though I know she will be in a better place, I can’t imagine my life without her. How will I be able to live? How can I go on without her? Sometimes I think it would have been better not to have had any kids than to experience this kind of pain. Then I think about all the time that I have lost with her – the numerous times she’s asked, “Mommy, can you play with me?” To which I respond, “Not now.” I’ve said “not now” more times than I’ve said yes to her in the past few months and it kills me to think about it. I urge you, friends – cherish the moments you have with your children. You won’t regret spending too much time with them, but you will regret not spending enough.

I know that God is good regardless of our circumstances. I believe it. I do. But when I look at Ava, I struggle to hold on to this truth because my heart hurts so much. Even knowing that God is good, I know this doesn’t guarantee us a good outcome. At least, not the outcome I have in mind. His ways are higher than my ways, His thoughts than my thoughts. God has not promised us an easy road or health and prosperity. In fact, we are told to expect hardship and persecution when we follow Jesus. That’s why it’s so hard to surrender to Him with open hands, knowing that there are no guarantees and anything can happen. I don’t know how I will walk this road; my knees are buckling already, and I am not prepared for the journey.

I also know that either way, life will go on. But that’s almost a paralyzing fear. If we lose Ava, everyone else’s life will go on as usual, but mine will be shattered and stuck in this place. It seems like the sorrow will be even deeper to watch the world go on when I know that something so precious has been lost to me.

One of Ava’s fears is being alone. Whenever we walk around, she’s very keen to point out which children don’t have parents with them. I am devastated to think that she would go to heaven by herself – what if she’s scared? I know it doesn’t make any sense, since she will be full of joy in the presence of our Father, with no fear or longing, but it seems unfair that she would be alone, when Gwen will get both me and Mike. I just wish I could promise to be with her the whole way.

There are moments when I’m hopeful and I believe that God will heal her. He is powerful, and He is good. Even if Ava is not healed, God is still good. But the thought of losing her brings me to a valley-low that is indescribable. Yet the ups and downs are just part of the nature of this kind of journey. Please pray for more ups.

I will say again that we are overwhelmed by the love and support you’ve shown us. Even though I barely feel like I’m making it each day, I know that you all play a large part in our endurance and persevering. We cannot thank you enough.

Prayer requests:

1.     For Ava’s healing; for her to be in complete remission – I cannot stress enough how important this first month is as an indicator of Ava’s prognosis. Should she need a bone marrow transplant (and most will), she would need to be in remission (ideally) at the time of transplant. While the odds are against us for Ava to ever reach remission, I am reminded that God has never been one for statistics, so we will not fix our eyes on the numbers.

2.     For Gwen to be a perfect match – Bone marrow donors aren’t simply “matches” or “not matches”. It’s not a yes-or-no thing, but rather a continuum of sorts. Kind of like color hues. Completely different colors like red and blue are obviously not a match at all. But some donors may be of the same color family as the recipient (e.g. red), but vary in shades (e.g. pink, magenta, brick red). Please pray for Gwen to be a perfect match – the exact same hue/color as Ava, not just a different shade. Yet even so, our trust rests in God, not the match results.

3.     Ava’s neck pain – Ava has been experiencing intermittent neck pain for a few months now, and it’s concerning to me. The doctors feel they may be related to fevers, but she hasn’t had fevers, and she complains about the neck pain even when she’s lying down. It also started months ago, even before everything happened with the leukemia. It’s hard not to worry about the amount of radiation she’s received in her lifetime with all the X-rays, so we don’t want to expose her to more radiation unless it’s absolutely necessary. Please pray that there isn’t anything else going on and that her pain will disappear.

4.     Proper home care – Ava’s last day of chemotherapy will be next Tuesday. If everything goes well, we can go home. However, there are many things to be mindful of because her immune system will be wiped out. It’s not just colds that we have to protect her from; she may get an infection from the normal bacteria in her own GI system. We are learning how to take care of her tubes at home and how to clean them, yet each step has to be done with care. Please pray that we are able to care for her well.
As Esther's friend, I’d like to add a few more prayer requests:
5. Rest – Please pray that the whole family gets some rest, especially for Ava, Mike & Esther. Physical, spiritual and mental rest. Pray that the peace of God that transcends all understanding (yes, even in situations like this) will guard their hearts and minds in Christ Jesus. Pray that they will find a rest in His presence that lightens their spirits as He carries their burdens.

6. Wisdom – Amid the flood of information and things that Mike & Esther need to be aware of, pray that God would grant them clarity and His divine wisdom in any decision-making, trusting in His Spirit’s lead, not leaning on man’s wisdom. We walk by faith, not by sight. Pray that even more faith would arise, with our eyes lifted up to the hills, knowing from where our help comes.

7. Please continue to intercede – Your prayers are and have been vital. As followers of Christ, Mike & Esther are well aware of the spiritual battle we are in. Ephesians 6 tells us that our struggle is not against flesh and blood, but against the spiritual forces of evil in the heavenly realms. Let us join our shields of faith with theirs, creating a wall of defense against the flaming arrows of the enemy, that they may be able to “stand” in the end.

Thank you for your continued prayers!

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