We are back home, Noah and John are watching Star Wars (again). It’s been a long day of waiting, wondering, praying, and remembering (2 years ago today a CT scan at Huntsville Hospital revealed Noah’s tumor). John described our situation last night briefly in his post, so I will pick up where he left off. This morning we awoke ready for Noah’s MRI and ended up waiting until about 10:30 for him to actually have the scan. When it was confirmed that his symptoms were a result of pressure from the growing tumor I was a little surprised. I honestly did not think that it would begin to have an affect on him this soon. Noah slept for a while after the scan, we ate lunch, and waited for a while longer. We had a few visitors to help us pass the time. When his neurosurgeon was able to come speak with us, I realized how anxious I was to hear what he had to say. In his always calm and collected way, he gently but matter-of-factly told us what I had (regretfully) expected to hear. He said that it is reasonable to go ahead with the surgery, it would be basically the same as before, but this time he would remove the normal tissue (which is more than likely not functioning) surrounding the tumor as well. Based on his history, we could maybe expect the tumor to come back within 3 months, though no one can really judge how effective the surgery would be. There is also a risk of morbidity; he could very well lose motor control and continue to decline. Obviously, without surgery, that risk becomes fact…it would only be a much shorter time that he would begin to decline and eventually pass away. So the surgery would buy us some time, though we are unsure of how much time.
John and I have been divided on the surgery option for a while, and we haven’t yet discussed the consultation with Dr. Wellons. This is such an extremely hard decision to make, and we can’t be leisurely about coming to an agreement. We are both praying for peace and wisdom from the Lord, and we ask that you pray with us that God will guide us to a solid decision, one that we will look back on and not have regrets about. His quality of life will be a major factor in our decision, and right now he is still doing very well, despite the scare we had yesterday. We are still leaving for our Disney trip this weekend, and if we do proceed with the surgery it will be sometime the week after we return. We also ask that you pray for his physical ability to not be hindered next week so he can have the most enjoyable experience at Disney World as possible. We have several super fun events planned for him, and we want him to have an amazing time with his family.
I can’t speak for John in this, but today I have felt very weak, physically and emotionally, and I find my peace and joy being tested. I told our hospital chaplain this morning that I was doing my best to push all sadness and grief aside because all I have is this moment and I don’t want to miss or regret anything that I could experience with Noah. But after loss of sleep, waiting, bad news, and pressure to make one of the most important decisions I’ve ever had to be a part of making, I feel just plain beat up and that leaves my heart not quite as guarded as I need it to be. So, I’m still claiming for our family Philippians 4:6-7 that “the peace of God which transcends all understanding will guard your hearts and minds in Christ Jesus.”
Even in my sadness today, I was able to give thanks to God. Noah was in the hallway outside of our room running as best he could, infectiously laughing, and giving out hugs (which looked more like full-body tackles) while another child pushed his walker in order to get a few laps in, a mom held her infant in a doorway with IV lines dangling as she tried to comfort her child, and behind closed doors in dark rooms other children tried to sleep, while still others didn’t have the ability to even get out and roam the halls. As we approach the Thanksgiving season, I’m often tempted to be reminded first of all the hurt my family has experienced surrounding this holiday: deaths, diagnoses, surgeries, etc. but no matter how bad a day may be I believe we can always find something good in that day - if only in the grace and forgiveness of Jesus Christ then that should be enough for us. I will have to remind myself of that truth again this Thanksgiving; we have so very much to rejoice in and praise God for, and we will live in today and make the most of it!
Thank you all for praying for us, for Noah, and I hope everyone has a wonderful Thanksgiving holiday!
Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus (1 Thessalonians 5:16-18).
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you (Philippians 4:4-9).
These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.