Rough Days

​We have had a rough couple of days. Noah has been feeling really bad, with headaches, nausea, vomiting, and random fevers. The first pain med he was prescribed caused an allergic reaction, and the new pain med doesn't seem to be very helping at all. It is difficult to get his meds down because of the vomiting. He has slept most of the past 24 hours, unless he is up to vomit, use the restroom or check on his toys. He complains of his head hurting just about all the time. If we can't get a handle on the medicine today, John and I will make the decision to admit him in hopes the doctors can figure out what will work for him and why he has had vomiting with sporadic fevers for the past 3 weeks. We are trying to do everything we can to make him comfortable, without much success. And that is our ultimate goal at this time, to make Noah comfortable and keep him at home. I appreciate all the prayers for Noah and I realize that so many of you reading desire for Noah to be healed completely on this earth, and that is my greatest desire as well. But please know that when information is sent to us about a "miracle healing super vitamin fruit and vegetable coffee enema gluten free cure for cancer" it does more damage that it does good. John David and I have done our research, and we are at peace with the decision we have made. This is the most difficult path that we have ever walked, and I'm most certain that we will EVER walk, and the peace from God at this time is our greatest commodity. Please don't threaten to take that from us by sending well-meaning, but not scientifically proven claims full of false hope. I understand that the best form of prevention is a diet full of fresh fruits, vegetables, and exercise, and I also agree that there are many cures found in nature for what ails a person. But Noah's situation is far beyond what the average individual searching the internet for cures for cancer can understand. I realize this post may be offensive to some, but I am writing this in order to further protect my family during this most difficult time. Thank you for your understanding and compassion.
I don't know what the future looks like, as far as Noah's health is concerned. He is in a lot of pain right now, and our goals are to make him comfortable, surround him with the people that he loves, and allow him to enjoy his toys and play things as much as he can. I am hoping once we get the right balance of medication he will bounce back and be a little more active. He just hasn't been the Noah that so many of you have seen running around with endless energy, and it breaks my heart to think of how much he is suffering. Please pray with us for his pain management, and for the vomiting and fevers to stop. John and I are growing weary by the day, with little sleep and lots of stress, so please pray for God to renew our strength each day as well. The grandmothers are both coming today, so hopefully that will help put some joy in Noah's spirit. It hurts me so much to see him broken like this. 
Once again thank you to everyone who is praying, bringing dinner, sending encouraging cards and emails...you are blessing us more than you can understand and I promise when a need arises John David or I will call on those who have made themselves available. We have not given up hope for Noah's healing on earth, but we know that regardless of what is God's path for him, Noah will be healed and on that promise we stand. I know that we don't all agree on the details of this life, but there are some things we do agree on when we pray together for Noah - that God is mighty to save, He is an ever-present help in trouble, He is our comfort and our Rock, and always will be our healer. Keep praying, and don't give up because we most certainly are not, and know that you are greatly loved for fighting this flood with us. Noah is such a brave boy, and he often reminds me, "all my friends are praying for me, Mom." Yes they are, sweet boy. One day you will realize the enormity of that statement. 
I will update as I can. Much love to you all. 
-Jess
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Friday evening: We have been at the hospital since 10am, our adventure beginning in the E.R. and ending the day in a very tiny room on 4-Tower. Noah has done a lot of sleeping again today, some because of his pain, but mostly because morphine causes him to be drowsy. His pain has pretty much stayed to a minimum while on the morphine. Tonight and tomorrow he will be monitored and the doctors can hopefully decide on a dosing schedule that will keep him comfortable. We were told about a small pump that Noah could wear that will continually administer the medicine at a rate that will keep him as pain free as possible, but allow him to function as he wishes, playing, spending time with family, etc. John and I are meeting with a home health nurse (technically hospice, but that word has such negative undertones...) to ask questions and lay out our expectations about Noah's care at home. I'm praying that we will know immediately if this is a good fit; we have been told that the specific facility we were referred to has lots of experience with pediatric care and accessing ports, so that is a win. 
Today has been another difficult day, but I am encouraged that we will soon have Noah's pain under control and with the help of the experienced and compassionate staff here on 4-Tower we will soon be headed home to care for Noah in the way that we believe is best for him. We had a very realistic, matter-of-fact & informative conversation with Dr. Howard about what the future will hold based on his past experience with these types of situations. When John and I made the painstaking decision to not pursue any more experimental treatment, we did not know exactly what that would entail, but we had (and still have) peace that this is the right choice. There comes a point when a parent knows that a line needs to be drawn and we have reached that line. There are no more viable options, and we feel it's time to let him rest. Facing this future is so incredibly difficult...so many hopes and dreams John and I have for our family are being threatened and that is emotionally a very hard pill to swallow. Our chaplain today said it so well while describing a seven-year old boy who had just held his lifeless infant brother for the first time: "Mama, why would God do this?" His mother responded what most of us would, "you will just have to ask God and see what He says." "I don't want to know what He says," the boy replied. And I am right there with that little boy, I don't want an answer to my question "why, God?" because it will not only fail to ease my pain but I will not ever be able to understand the ways of the Lord and why He allows suffering in our lives. I prayed a prayer over four years ago that God would protect my son, grow him to be a man after His own heart, but above all glorify the Lord in all that he does. I prayed that same prayer over and over as Noah grew and thrived. That cold day in November 2009 when Noah was diagnosed, I questioned my prayer. Maybe I don't really want him to glorify the Lord, if this is what that looks like. Maybe I don't want to entrust God with my son's life if He won't protect him from death and disease. I quickly had to dismiss those tempting thoughts because the goodness of the Lord is so much more than I can ever comprehend, and His love for my son is so much more than I can ever have. The thought came to my mind the other day, what is God protecting Noah from? If He allows my son's life on earth to end at such a young age, I can only wonder about the heartache and pain and suffering that he will not experience. In turn, I am beginning to feel like all that heartache, pain, and suffering that Noah may not experience is being poured out on me and my husband. Someone told me today that I was a "rock," and I so appreciate that compliment, but I know it is far from my reality. But I made a decision several months ago that I will live in these days that I have with Noah, good and bad, and soak up every moment. I will have a lifetime to cry, grieve, and be angry (and I currently have my moments here and there) but I will not have regrets about this time I have to focus (mostly) only on him and the joy he brings to mine and John David's lives. I want to continue to move forward this way, not wasting a minute. I've felt very weak lately, and with each prayer that you lift up for our family I feel the arms of the Lord pulling back my shoulders, straightening my back, shuffling my feet...keep moving forward, He says. Don't look back on regrets, but look back on joy, store up those sweet memories in your heart; look around you and rejoice in these moments that you have today, for NO ONE is promised tomorrow, but only the breath of now. God has been faithful to guide my family through every step of this journey, and I don't expect Him to leave me once this is all said and done. He is quite big enough to handle every question I may throw at Him. He can handle my anger and grief, and He will guide me through it. He won't walk away from me, nor I from Him, but we will wrestle with this together. I still trust Him, and I'm making that choice every day, even when it hurts. If one cannot trust his God with the people that he loves the most, he doesn't really have faith. I will need to be reminded of this post when I am struggling the most.
​Thank you Lord for sweet moments and precious memories, and for the promise of eternal life and renewed strength. When Your goodness is at it's hardest to comprehend, I thank You for bending down close enough for me to feel Your embrace. Thank You for being the solid Rock that I stand on. I still believe You are Healer, and I trust You with not only my future, but the future of my entire family. May You receive the glory, forever and ever, amen. 

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