Like Tom Petty once put it in song, “The waiting is the hardest part.” And that’s where we’re at these days. We’re waiting for further tests and scans to be done this week that will give a better picture of what, if anything, is going on with Susana.
The good news is that the MIBG scan did not show any solid tumor, so that was definitely a sigh of relief. But because neuroblastoma grows at the cellular level, there may be something going on that the MIBG scan would not pick up, we don’t know. So, she is scheduled for several tests in the next few days and the results of these tests should let us know if anything is going on. These tests were already scheduled prior to her getting a fever and such, so it is not like the doctors are ordering all of these tests because they think something might be wrong. These were already scheduled because she just finished her proton therapy treatment and is now about to begin her antibody therapy, so they need all new tests before starting the antibody therapy.
Susana is feeling better each day it seems. But today is only the first day that she has not had a fever. So, she had this low grade fever for 7 days straight. This was very concerning. I was going to take her to the doctor this morning if she still had a fever, but the fever finally went away, and she told me that she was feeling better today. She has been eating a little here and there, and I have to force her to drink at least 12 – 15 ounces of fluid each day. That has been painful because it is so hard to have to force her to drink when she is crying and crying saying that she does not want to drink. It just does something to my emotions every time. Just to get her to take about 3 or 4 sips seems to take a long, not always convincing, conversation that can either lead me to tears after I walk away or mere frustration. But the doctors have told me that she needs to drink. So, we do what we need to do.
But today has definitely been better. She has been eating more and not complaining when I tell her to take some sips of water. So, that is a relief. I spoke to the nurse at the clinic today and told her about the low grade fever. The doctor said that as long as it was getting progressively better, that I would not have to bring her in today and could just wait until tomorrow for her scheduled appointment. So, we are home now. She is just watching movies on my bed, and she definitely looks much better today. I am so praying that this whole thing is nothing more than a virus. I have been sick myself with just some congestion/cold, but nothing major.
So, tomorrow morning we go to the clinic for a bone marrow aspiration. Then Wednesday she has a CAT scan and then Thursday she has a bone scan or MRI or something like that. Once these tests have been done, we should know more about what is going on. I’ll keep you all posted.
Thanks so much for all your prayers and words of encouragement. It has been a most challenging week. I’m so thankful to know that the Lord is with me and my family no matter what state of mind we are in or how “good” we are doing. I was talking to Maria about this the other day after listening to a wonderful song by Christy Nochels (one of my favorite worship leaders) called “Healing is in your Hands.” Anyway, the truth is that it had been a couple of very hard days for me and instead of pressing into the Lord and seeking Him with all my heart, I was kind of checked out. I just didn’t want to press in. I was tired. My emotions were all over the place. I just wanted to veg out. I didn’t even read my bible or spend time with the Lord for several days. And I probably felt guilty about even that…that here my daughter was suffering and possibly getting sick again, and instead of me falling to my knees and praying without ceasing, instead I’m checking out and just not wanting to “go there.” Have you ever been there before? Me too.
So, I was in my car on my way to meet with a few mission partners and still in that place of wanting to “check out.” So, I do what anybody else does who wants to “check out” and not think about anything while driving…I turned up the music…L-O-U-D. I had that system cranking. I was playing my iphone through the stereo and had it on shuffle. So, one minute I’m blasting out to “Dear X” by Disciple, but then right after, Chris Tomlin’s “How Great is Our God” might come up. And honestly, I didn’t want to hear worship music, so I would hit skip until another loud song came up. (Yes…a little glimpse into Cody’s “super spiritual” life)
But here’s what I know to be true no matter what: I am a child of God. He loves me so much. I am His. I cannot get away from Him even if I think I want to. Like David states in Psalm 139, “Where can I flee from your presence?” And for the child of God, the answer is simple: Nowhere! I cannot get away from the Lord even when I try. And when all the smoke clears, and all my running takes me nowhere special, I am most thankful for that truth…I cannot get away from Him. He will have His way with me. And that’s when I surrender in safety.
So, in the midst of me trying to escape through the loud blaring sounds of Disciple, I break down and just start crying. I cry and cry even as my ear drums are on the verge of breaking. And I sense the nearness of God. And I know that He is with me…always. So, the loud song ends and a Christy Nochels song “Healing is in your Hands” comes up. I picked up my iphone and was about to hit skip, but then I just felt like I needed to hear this song. I maybe only heard it once before and didn’t really know what it was about. So, I listened to it and just asked the Lord to minister to my tired heart. I can’t remember every verse, but the chorus states something like “No matter where I stand, healing is in your hands.” And that word just spoke to my heart in the most profound way.
It tells me that no matter where I am, healing is in the hands of God. Like no matter where I am spiritually (have I been reading my bible and spending time with the Lord every day? Or have I “checked out” for a season because I feel too overwhelmed?), it does not matter. Healing is in HIS hands. And no matter where I am emotionally (Have I been experiencing the joy of the Lord as my strength? Or have I been a miserable and irritable grump?), it does not matter. Healing is in HIS hands. It truly reflects the sovereignty of God for which I am so thankful to understand and embrace. It’s in HIS hands. He will do however He chooses and that does not depend on my performance, whether ultra awesome or failing miserably. It does not depend on my love. It does not depend on me. It all depends on HIM. Oh how comforting that is to my soul.
And so, as I remember that healing is in HIS hands and that it has nothing at all to do with me, I am comforted. I come to understand the love of the Lord more by this revelation…and that leads me to “check back in” realizing yet again like the psalmist so eloquently states, “Whom have I in heaven, but You? And on earth, there is nothing I desire besides You. My heart and my flesh will fail, but God is the strength of my heart and my portion forever.” Why He loves me so, I shall never fully know on this side of heaven…but I gladly receive it.