It’s been two months, and of course, I have much to share. So with a little less artfulness than I'd prefer…
The medicine Aida restarted a couple of months ago has seemed to have a really positive effect. Several of the larger lesions made an almost immediate improvement, which has been pretty encouraging. It has since leveled off, but many are unquestionably smaller. There are, however, new lesions. I wasn’t really aware that was part of the deal until they started appearing. I don’t think it’s unheard of, but it pretty much falls under her one-of-a-kind diagnosis. Sooooo…surprise! I’ve been trying to ignore them as if my not acknowledging them means they aren’t really there…or maybe they’ll just go away. Honestly, I was hoping that these new ones would be the first to go – sort of like how the last place you gain weight is the first place you lose. No such luck.
After a failed attempt at an MRI in Cincinnati (due to illness) a couple of months ago, we finally got Aida’s MRI done in Nashville several weeks back. We heard back from Vanderbilt that everything looked pretty good. In fact, they told us that the lesion on the brain appeared smaller. Amazing, right? Still, we were holding off on really celebrating because they were referring to pretty old scans in comparison to what they would have in Cincinnati. But smaller is smaller, right? Seemed logical. Ultimately, I was just waiting to hear HOW good the news would be once the radiologist in Cincinnati had a chance to review the scans.
So when the call came yesterday from our favorite doctor with less than stellar news, I was caught off guard. First of all, the lesion on the brain appeared to be the same. No biggie, but it was a little frustrating to have previously heard otherwise. Then she told me that the radiologist was “impressed” - and not in the “I can’t believe how she’s totally better – what a miracle” sort of way. Nope. She said the radiologist was impressed by how many MORE lesions there were on her liver and in her bones. So those new ones we’ve been noticing on the outside aren’t imagined, and they aren’t alone.
We talked a little while about the ins and outs of what that might mean. She tried to offer what was sort of encouraging about the situation. We have an identified mutation with a known drug treatment, for example. But then of course, she also said she worries about Aida every day because
she just doesn’t know what might happen. She’s anxious when she sees an email from me in her inbox. She told me about a handful of other kids who have one-of-a-kind (similar but different) situations. Some are okay – some not so okay. The word “malignant” was tossed out. Some other kid – with a family like us – is facing that. I asked if Aida would be on this seemingly intense medication “forever.” The short time side effects are minimal, but I think there might be concern about the liver long term – not to mention the cost. Ironic, no? The medicine treating the lesions all over her body – including a significant one on her liver – might damage her surprisingly normally functioning liver. But people somewhere are researching…maybe there will be other drugs down the road.
We will have another MRI in a couple of months to see if the drugs are helping this new proliferation. If not, they will likely biopsy something from the inside for the first time. They have had “plenty of tissue” from the outside, but if this new growth continues, they’ll have to start digging for more answers…if there are any to be had.
So pause for a moment with me if you have the time…take a deep breath.
The first 6-8 months of Aida’s life were eventful to say the least, but after that time we began to settle into something resembling normal. I’ve talked many times before about the season of miracles we lived in during those first months, and that I knew it couldn’t possibly continue forever – that strange experience of being simultaneously on a mountain-top and in the depths of the valley. But in a way, we are still in a season of miracles.
In inexplicable God fashion, I got a job when Aida was about 8 months old. It is part time and mostly from home - a whole new kind of struggle that I’ll write more about elsewhere. Suffice it to say, it has been a complicated and amazing 20 months (as of today.) The last few months, however, have been impressive in at least one good way.
It has not been easy – physically, financially, emotionally or in any other –ly – but it has been better than I expected. Don’t get me wrong. We are usually exhausted, broke and spent…but God has provided grace and many other things. (He also gave us Aida – the happiest little girl in the world!) One day, I’ll write a book that will almost certainly focus on grace. I told someone the other day that I only want to write ONE book though because once I’ve accumulated the life experiences required to fill the pages, I will have had about enough. Ha!
I say all that to say, God has been GOOD. He continues to be good, and he cares for me in amazing ways, which again, I’ll have to write about at another time. I will share these bits of hope, however. After processing the information I got on the phone for a bit, I cried for just a minute. Aida laughed. Mark was out of town working, so I didn’t want to interrupt his day with the news that had shaken me. While interrupting my mom’s day instead, the Lord brought to mind something that I had randomly shared with someone just the day before.
Very early on in Aida’s life, someone shared with us something God had given him while praying for Aida. She will live and not die. It was pretty huge, and I held on to it for a long time. After a while, it was easy to believe it because she seemed to be improving all the time. There was always uncertainty, but she was okay.
Then on Good Friday of this year, at what was a very somber and moving service at our church, I had a strikingly hopeful experience with God. The crowd was small compared to what would be there for Easter Sunday. Mark & Aida had stayed home. I sat by myself, engaging with God, sobbing and wrote the following…on my phone:
Her healing is coming.
Good Friday – Jesus who had been their hope, died. He left. They were confused. They were lost. They were embarrassed. They were discouraged. They’d believed and it wasn’t true. There is risk in believing, but Jesus hadn’t abandoned them. There was no mistake.
Her healing is coming.
It is coming regardless of what I do or don’t do. Her healing – her salvation – isn’t dependent on my disciplines. My sacrifice. My faith. God requires those from me – for my relationship, but she has been promised. She will live and not die…and now her healing is coming. All God’s promises are yes and amen.
Beneficial sure [my efforts] – but he died for her. By his stripes she will be healed – with or without me. My part is MY part. I will not lose faith in the waiting – in the not knowing. Challenges – even familiar ones will try me – again and again, but I will have faith. I can do all things through Christ who strengthens me. I am nothing on my own.
Her healing is coming.
So I have held on to that word that God gave to me – just weeks after her 1st birthday. Her healing is coming. Of course, I immediately wondered, “What does that mean? What does “healing” mean? Will she be 2 or 22 or…” He didn’t feel the need to be any more specific.
Several months later, however, I had a profound – perhaps divine – thought. I was listening to our pastor speak about the woman with the issue of blood who touched the hem of Jesus’ garment. (If you’re not familiar, you can read the story HERE.) After being healed, Jesus told her, “Daughter, your faith has healed you.” (Luke 8:48) Really and truly – I have NO IDEA what the story’s application was supposed to be about that day…because at that moment God delivered a personal, specific glimmer of hope to me.
What if Aida’s faith will heal her? Daughter, YOUR FAITH. It feels almost selfish of me to wish it all away when she’s not even old enough to know that it’s part of her story. If God healed her tomorrow, he would be glorified no doubt, but it would really only be part of our story. What if it will be HER FAITH that will make her whole? Who wouldn’t want that for their child? Of course, I don’t want her to suffer, but we ALL suffer. I can't spare her of that. How fantastic would it be for HER to know what it means to be healed?
That said, if God wants to heal her today I am TOTALLY OKAY WITH THAT. Great really. I’ll tell her her story so much she’ll think she can actually remember being a baby. The 5 million pictures will help too. Just wanted to clear that up in case anyone thinks I’m praying for her healing to be delayed. I am not. J
As usual, there is virtually nothing we can do today or next week or next month for Aida except pray and implore others to join us. It is genuinely easier not to worry when you fully grasp your lack of control. (There’s a lesson in there I’m still learning.) I would like to feed her a little better, but I’m pretty sure canned peas versus dried peas is not a determining factor in her major health issues, so I’ll start with prayer.
Oh! And because I forgot and have written too much to try to creatively weave in this last bit…we visited the ophthalmologist yesterday. All is stable in that area. The glasses and patching are doing what they’re supposed to do. Her eyes are straight when looking through her bifocals, though one still turns in (as expected) when the glasses are off or she’s looking above the bifocal. All normal, considering.
So to FINALLY wrap up, please continue to pray for Aida and our family. Pray for BIG, beautiful, undeniable, can’t help but laugh and cry at the same time miracles. Pray for our family to be strong in a very busy time of life (healthy kiddo or not). Pray for wisdom in decisions we will face – from surgeries to budgets to child-care. Pray for her doctors and THEIR families. Pray blessings on the people around us – our Nashville family – who cares for us like our own family.
We are so grateful for you all. Until next time…
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