As I posted below, yesterday was a difficult day. Noah was in a lot of pain and slept the entire day away. Just before the sun went down, he woke up and had a boost of energy for a brief time and decided he wanted to go out back to see what all the commotion was about (John and a few helpful friends were putting together a shed to solve some of our storage issues at the moment). He stayed outside for about 5 minutes, but quickly tired and we headed back to the bed. (This is the first time he has wanted to be outside since we brought him home from the hospital on Tuesday.) One of the hospice nurses came by to administer his nightly medications, and after she left I spent some time with Noah just talking with him about the things we do together. I reminded him how much I love having him with me all the time, and basically described our weekly routine step by step as we would live it. Going to school, grocery shopping, library and park time, visiting the church staff and playing with toys at home, etc. In the beginning he would acknowledge me with his eyes closed, with a sleepy uh-huh, or slow head nod, or a "yep." When I verbally walked him through the church, "ran" him into the large room with the drums where the "big kids" meet at night and play with him, his eyes opened wide and he said, "I like to play those drums!" So we continued to talk about what he likes to do and all the youth who chase him and play with him, Kit-Kats and M&M's from Ms. Susan and Ms. Ruth, Mr. Seth's tickle finger, playground time, and all the things that are comforting to him in his daily routine. By this time he had asked me to take him out of the bedroom and to the couch, where he rested for a while longer. When bedtime came John and I moved him back into our bed and just as my head hit the pillow something happened in him and he exclaimed "Hey Mom!! I love you!!" as enthusiastic as he could be. His eyes were wide open, very little problem tracking, and he talked a mile a minute..about anything he could think of...for about two hours. It was a wonderful gift to us. It was really him, with his sweet comments and he even laughed about a silly memory we have, saying, "that was so funny!" This was the first time I've seen him laugh in a week. While giving him his midnight nausea medicine, he looked at me and said, "Hey Mom, you know what Jesus says to you? He says, you are taking good care of me, and He loves you!" He said something similar to John as well. During this time he was free of pain, and periodically during the night he would wake and continue his happy conversations.
This morning his head is hurting again, and he has been sleeping most of the time. I am praying for another gift today like we received last night. God is good and faithful to supply all of our needs, and my love tank is full for this day. Thank you for your continued prayers for peace and healing, and John David or I will keep updating as we can.
With love and a grateful heart,
Today Noah is in a lot of pain. The morphine drip rate was increased, and he has been sleeping all day. We knew that his body may begin to tolerate the drug, and it would have to gradually be increased. We are not sure if that is the case here, or if tumor growth is causing the pain. It's difficult to watch without being able to help. John and I have done a lot of praying today, asking God to heal him and take his pain away. He isn't able to walk without stumbling or keeping his balance, so he needs assistance getting to the bathroom and getting around. We see a new change in his body and mind everyday, and I feel that he is depressed about the changes in his body. He doesn't have much drive to get up and move unless someone is here to see him or he gets a new prize. John and I had to "sponge bathe" him this morning; it reminded me of when he was an infant, and was so helpless and small. This is not the general order of life. He should be growing and I should be dying. He should be taking care of me and John down the road, watching us regress as our bodies wither. Not this way...this is just not right. I am hurting today, so I looked back on a few posts from the past to try to strengthen my spirit. Here is what I found:
From a post I wrote about one year ago: "God is so good, and this battle is not only ours but His…and in that we find comfort. The Lord can heal Noah through a number of means, but whether that is in this life or eternity we cannot say for sure. We are not promised tomorrow and we don’t know what a day will bring forth (for ANYONE), so we live each day to the fullest and spend as much time together as we can." This is an uncomfortably real and present truth that we are facing tonight, but despite the fragility of life we have a peace that passes all understanding, because we know WHO is in control, WHO we follow and trust, and WHO allows each and every breath that fills our lungs. Not one of us is promised that we will make it home from work, school, or that quick trip to the grocery store.
From March 2011: "While reading today, the story of Lazarus jumped out at me and as I read I was encouraged. Jesus said to His disciples about Lazarus,'this sickness will not end in death. No, it is for God's glory so that God's son may be glorified through it' (John 11:4). Jesus loved Lazarus, and yet He tarried, and essentially allowed Lazarus to die only to raise Him from the dead, 'so that you may believe' (John 11:15). I don't doubt His power and ability to heal, but I also know that He may tarry and He is often 'slow to act' according to my watch. As I wait on the Lord to completely heal my son, I am encouraged by the letters and comments I receive from so many of you who are praying and believing with my family for a miracle. And I see how even now God is glorified through the work He is doing in Noah. Thank you for all you are doing and have done to show us the love of Jesus."
From December 2011: We need a miracle healing from the Lord. Noah will do such great things for this world, and for You, if You would only give him that chance. He will be a man of integrity and leadership, like his dad. Noah will speak such a great witness because of what You will do in his life. He will be a man who follows You at any cost. I have prayed these things over him for almost 4 years and now is Your chance to show so many that You have heard their prayer, and Your answer is "YES." This answer of "YES" would be such a small thing for You, You who can just think a thought and it will come to pass. You who know every hair on every head, God You can just whisper the word and cancer will be gone. This would be such a small "YES" for You, but such a life-changing "YES" for me, for John, for Noah....and so many who love him and pray for him. We cry to You Father with everything we have for You to do this for us. We cast out anything that is not from You that is attacking Noah's body, we tell it that Jesus is Lord of Noah and nothing else. We say to this cancer to flee, and torment this child and his family NO MORE. Jesus You are his healer, and God You are his Father, and Spirit You are his comforter. We pray for healing, in whatever form it may come in. We pray for You will, Father. And we know that Your peace passes all understanding, and we ask for that as well. You are always good, no matter what circumstance we may be in. We may not understand Your ways, or Your love, but we know neither one of those fail. So to You be the glory in Noah's life, and may Your will be done. In Jesus' name. Amen, so be it.
"Again I say to you that if two of you agree on earth concerning anything that they ask, it will be done for them by My Father in heaven. For where two or three are gathered together in My name, I am there in the midst of them” (Matthew 18:19-20).
Last night we were discharged from the hospital to the care of a hospice group in our area. After we arrived home it took a while to set up equipment, sign paper work, and receive instruction from Noah's nurse. Once Noah was given all his nightly medications the nurse left John David and I with the night shift. We have never experienced infusions outside of a hospital setting, and Noah's new backpack (plus an additional pack of fluids after 8pm) have almost become a new member of the family that cannot be left behind! Noah hasn't realized that the bag has to go anywhere he does, the bathroom, the bed, the floor to look at toys...I'm praying he will accept this new discomfort and see it as his helper and not a hindrance. Our night was long and somewhat sleepless due to the pump malfunctioning and Noah vomiting, but if today is any indication of the future we are on an uphill climb for now. He slept late this morning, but woke up in time to welcome his aunt and uncle, and he spent about 3 hours sitting up on our sofa visiting with them and showing off all his new Star Wars toys that were waiting for him on our front step last night. Since being home Noah has done more walking and had longer periods of alertness. The hospice nurse will come each morning and evening to give him IV medications and set up his nightly fluids, and also will also be on call for anything we may need in-between. This is such a stressful experience, and I had to ask God this morning for strength only for the day. I cannot try to imagine the days ahead because I overwhelm myself. I had a few minutes to myself this morning while Noah was sleeping, and I thought about all of the mothers who care for children who require the special care similar to what Noah now needs, mothers who do it day in and out because their child has a life-long illness, and I just cried for them, and for myself. This is hard, and my body is weary after only one day. But I know I can do this, I have seen others do it, survive it, and continue to give God praise, even though the situation is devastating. God, just give us strength. Lord keep sending your precious servants to help us, whether it be family or stranger; we are so humbled by and thankful for the acts of kindness we have experienced and the love You have shown us through so many. It is good to be in this family of God, where we are not divided by denomination or theology, but united in love for the Lord and love for a little boy named Noah. Thank you for walking this road with us!
In order to understand the sweet significance of this picture you will need a synopsis of the past several days. Since about Saturday afternoon, Noah has been having these waves of irrationality and emotional distress that are very difficult for me and John to handle. He gets really emotionally involved in the shows he enjoys watching and cries if characters are in trouble. He can't make a decision about what he wants or needs, and he says things that don't make very much sense. He has often told me and John that he doesn't love us anymore. We have come to understand that these changes in his personality are most likely from the medication and the changes taking place in his brain, affecting his frontal lobe. We have also learned that the best way to handle this change is to stay patient, remain calm, and try to appease him and comfort him to the best of our ability, according to what we think he needs at the time. We know that Noah isn't telling us he doesn't love us...that's not him at all. But it is a difficult and stressful encounter, and thank goodness when they come they will also eventually go away. So when he begins to wake up from a long sleep we don't know really what to expect from him: our sweet Noah and his funny, playful personality or the "Morphine Man" who is quite unpredictable. In the moment I took the picture, Noah had just woke up and said he needed to snuggle Dad. Neither John nor myself have had a true snuggle from him in days, because since Noah has been sick he has needed his space. It was a very sweet moment.
Last night started what seems to be a slight upward climb. Noah's pre-school teacher "Ms. Ehwishabet" (Elizabeth) recorded the class singing one of Noah's favorite songs and then had each classmate say hi, with a final wish that he feels better and an affirmation that he is loved. Noah was sleeping when I watched it, but his eyes quickly opened and he said, "I wanna see." Keep in mind he had been asleep for the majority of the previous 48 hours. He watched the entire video twice, sitting up, and then said, "I wanna go with you, Dad" and agreed to ride in a wagon while John and I walked around downstairs. Seeing his classmates, teachers, and knowing that they miss him and love him gave Noah the hope he needed to push through some pain and lethargy and get moving. It was awesome. He has still had pain and vomiting last night and this morning, but his morphine drip was dialed down a bit, and with an increased steroid dose he feels better now than he has in almost a week. He has been awake much more today, interacting with the doctors, nurses, and us in such a sweet way. Dr. Reddy called him "kiddo" today and he replied, "No, that's not my name! My name is Noah Crowe." We caught a video of him saying, "Hey Daddy, I..love...you. So....much." (His speech is slower as he stutters and sometimes struggles to find the right word.) My heart just wants to explode in these moments, and I am etching them in my memory. Our hospice nurse and the doctors on call are working to get Noah a small pump that he can carry with him, and hopefully get him set up with that so we can be on our way home later this afternoon. Noah is afraid to go home today, he told us, because his head is still hurting. We are doing our best to reassure him that the special nurse that will come to our house is going to take care of him, along with Mom and Dad, just like he's being cared for here...and with a much more comfortable bed and lots of toys! Please pray that the transition from hospital to home is an easy one for us all, and that we are all comfortable with the care that Noah will receive there. We've seen what prayers can do, so please don't stop! Lots of love to you all.
"This child can face uncertain days because He lives!" - Hymn "Because He Lives"
Today has been hard. The doctors have decided to stick with morphine and increase his dose in hopes this level will keep his pain under control. He is ready to get home, and so am I. Noah was up and about, feeling a little better yesterday morning and mid-day, then the evening time brought more pain and sleep. Today he has been sleeping all day, with some vomiting, and just now he is sitting up and trying to eat lunch. He's lost over 4 pounds because he hasn't been able to eat much or keep it down. This morning was a struggle for me; I have seen Noah suffer with side effects from chemotherapy and radiation and surgery as we were trying to save his life. But to see him suffering from the pain caused by tumor growth and pressure, resulting in nausea and vomiting, knowing what the end result will be save a miracle from God is just too much for me to handle. Please keep praying that he will find relief soon.
There is a young lady named Taylor fighting for her life in Texas right now; she is from the Florence, AL area. She just had one of her lungs removed because of a long fight with childhood cancer, and the lung she has left isn't functioning like it should. She may have to be placed on an echmo machine, and is being transferred to another hospital there in TX. Please also pray for God's mercy on her life, that she would heal and recover quickly. You can read about her fight here.
Thanks for your prayers, gifts and encouragement. We appreciate them all!
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.
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.
We spent the late afternoon/early evening in the emergency room. Earlier this afternoon Noah and I were driving home from having lunch with John, and Noah started saying, "Mama...mama...I can't talk anymore" in a very slurred, almost indecipherable way. He continued to attempt to answer my questions with these unintelligible phrases while the right side of his face began to look paralyzed, and while I attempted to NOT freak out. While successfully not having a wreck, I kept calm and determined that he could see, his right hand was not gripping as it should, and he looked like he had just left the dentist office (when I asked him to smile, the right side of his face did nothing). After a few minutes of trying to keep him alert and talking with me, he slumped down into his booster seat and began to cry and panic. He was aware of everything that was happening, and terrified that he couldn't form the words to tell me what he was feeling. I was outwardly unemotional, but inwardly I was dying because I thought, "this is it. This is what his ending will be like...losing his ability to communicate what he needs." And honestly that is my greatest fear: for him to be suffering and not be able to tell me. My heart was breaking. The episode lasted a total of about 2 1/2 to 3 minutes, and felt like an eternity for both of us, I'm sure. When I noticed his mouth beginning to move again, his words became more clear, and he sat up straight and began to calm back down. During all this I had turned the car around and headed back to pick up John. We all went straight to the hospital. Noah's speech has still not become what it was before the first seizure, which worries me. While in the E.R. he had another seizure, though not as pronounced. He was given a steroid dose and a hefty dose of anti-seizure medication; he will continue with both of these at home. We were discharged in time to move forward with our campout in the back yard. The night turned out well, but the events of this afternoon have left me wound up pretty tight.
Tomorrow we have lots of family coming into town, then a fundraiser to attend tomorrow afternoon. The Hope for Autumn Foundation is having it's annual crawfish boil and Noah is one of the children with cancer that they are sponsoring this year. We are very grateful that he was chosen to be a part of this event, and we are looking forward to a fun-filled afternoon, and praying it is free of seizures, headaches, and whatever else could possibly happen. Pray with me that Noah will have a great day visiting with his family (one of his favorite things to do) and at the event tomorrow afternoon. Thanks for checking in on us, and please continue to pray with us for a miracle!
I have felt very weary today, pretty much like the life is being sucked out of me. Do you ever have those days where you really don't want to do ANYTHING except stay in the bed?? I'm sure we all have. I've been in a Hillsong mood today, so I've posted a link to one of my favorite worship songs that helps build me up when I'm feeling low.
Noah was feeling fine this morning as we all got ready for work and school. He ate breakfast, played with his toys and put up a fight about what shoes he was going to wear. (Over the past few months he has become very interested in choosing his clothes for the day, so most days you can definitely tell he dressed himself!) He was very excited about seeing Ms. Elizabeth and his classmates, and they seemed excited that he made it to school today as well. Around 9:30 Noah got sick in class, and had a pretty bad headache. John brought him to his office; Noah requested all the lights be turned out and then took a nap. We were all disappointed that he wasn't able to enjoy the morning at school. After his nap he woke up feeling much better so we had lunch and headed to the hospital.
Our meeting with Dr. Reddy went just as expected, and we are left with pretty much the same options as we had after the last recurrence, minus surgery. 1. Noah qualifies for a phase I clinical trial that is available at the moment; it requires that he take one experimental drug along with 2 types of chemotherapy drugs and an antibiotic. Most doses would be administered at home (orally) with very few hospital visits. There are some likely side effects and as always a few very unlikely, but risky ones.
2. The second option is a chemotherapy that has had some success in children with medulloblastoma (another type of cancerous brain tumor) and would be given along with two other drugs (one is a chemotherapy and the other one is a type of drug that I'm not sure how to pronounce so I won't even try to spell it...). This treatment would require lots of time spent in the hospital to monitor his body's response to the drugs. 3. Thirdly, we could opt for no treatment for Noah, other than what he would need to make him comfortable. That could be steroids, pain medication, whatever would work for him. No one can give us an estimated amount of time that Noah would have if we choose this option, but today we were assured that Noah would progress gradually, and not as though a switch had been flipped, if that makes sense. John and I have already noticed that pattern over the past few weeks as his episodes of headaches and vomiting have been growing closer together.
Of course there are other "alternative" therapies out there and if we encountered one that appeared to be even somewhat promising (based on legitimate personal testimonies) we could consider those as well. In the beginning of Noah's treatment when he had his first surgery, then began his first chemotherapy regimen, we weren't really given any options because that was the typical protocol for his type of cancer. Sometimes that protocol worked, and sometimes it didn't. Now that Noah hasn't responded to any of the therapies that worked on other kids, the decision has passed from those who have spent years and years in medical training and research, to two people who have no medical background at all, but love and care for this child more than anyone else in the world. Geesh, this is hard. And I know we just went through all this three months ago, wrestling with making the right decision, choosing the right path, and that decision gave us 3 more really good months with Noah. So in order to make the best decision for Noah, and not for John and myself, we need lots of prayers lifted up once again for guidance and wisdom. To know that our family has so many people remembering us in prayer is absolutely amazing and encouraging...it fills me up on a night like tonight when I am just plain emotionally exhausted. John and I need some quality quiet time to ourselves to discuss and pray about our next steps, and one of us will post again when we come to a decision. I will do my best to keep you all informed of Noah's health, but by now you know I'm not one to update every day or even week if life is uneventful. So, "no news is good news" I suppose. Thank you so much for checking in on us, and keep passing the word to pray for another miracle for Noah!
"I will exalt You, my God the King; I will praise Your name for ever and ever. Every day I will praise You and extol Your name forever and ever. Great is the Lord and worthy of praise; his greatness no one can fathom. One generation will commend Your works to another; they will tell of Your mighty acts. They will speak of the glorious splendor of Your majesty, and I will meditate on Your wonderful works. They will tell of the power of Your awesome works, and I will proclaim Your great deeds. They will celebrate Your abundant goodness and joyfully sing of Your righteousness" (Psalm 145:1-7).
Shortly after this picture was taken Dr. Wellons and his sweet nurse Nadine came into the room to talk with us about the results. I could sense something was wrong from the look in Nadine's eyes. She coerced Noah from the exam room and the clinic nurses kept him busy while Dr. Wellons showed us the scans. The tumor is not only growing, but it has metastasized to other parts of his brain. More surgery is no longer an option. We have an appointment to meet with his oncologist on Wednesday to to find out if there is a clinical trial available for Noah to participate in. Noah's nausea, vomiting and headaches he has been experiencing the past few weeks are affects of the growth. Other than that he has been feeling well.
After we left the hospital we took our usual trip to Toys-R-Us for Noah to pick out his post-MRI prize, which he is now enjoying with Dad. John David and I haven't had a chance to talk about this, and we haven't been emotional in front of Noah; he picks up on our stress pretty easily so we are attempting to keep calm until we can find a moment to talk. I don't know if we will decide on a clinical trial if there is one available, I don't know how long we will have with him with or without any treatment...I just don't know what our next step is, except for this: we will continue to pray for his healing, continue to love him with abandon, continue to do our best to raise him the way we feel the Lord would have us, and make him as happy and comfortable as we can. There is only so much we as parent's can do to control our child's life, namely his health, and this reality has never been more clear to us as it is today. So we release his precious life to our Savior, praying for His will to be done, asking for wisdom/guidance, and pleading with Him to grant Noah another miracle on this earth. We appreciate your faithful prayers and encouragement, and we ask that you continue to pray for healing and peace. We are still riding out this storm, and we will not give up even though we feel as though we are drowning. I will update after we speak with Dr. Reddy on Wednesday afternoon. Much love to you all.
I have to say that God is good, all the time, and His faithfulness to provide where I am lacking is ever constant. If you read the last post you know that Noah has an MRI coming up this Monday morning, April 23. I haven’t talked much about it, or written much about it, but I have been internally worrying about it. This will be his first scan since the surgery in January. His neuro-surgeon gave us an estimate (before his surgery) that he might expect Noah’s tumor to grow back within a 3-month period, calculating that estimate based on the trends of past tumor growth. I know what that scenario will bring, and the battle in my mind and with my emotions is sometimes so strong that I become physically sick trying to fight off my thoughts and fears about the end of his life…vivid images of what it will be like, look like, feel like - it’s torture, honestly. The waiting and wondering, with my child’s life hanging in the balance is very difficult, as most could imagine, and as some have experienced. For two years and five months (to the day) I have lived with these thoughts of “the last stages.” They have been compounding like the interest on my Lowe’s credit card (big mistake, btw…especially since I’m a sucker for all things home improvement). They creep in when I least expect them to and I’ve allowed them to ruin many precious moments I’ve had with my family, just being normal. Speaking of normal, we really have had an amazing, medically uneventful three months. Noah is still enjoying his day school class and all that it entails, and has become very ritualistic about making his rounds to meet and greet at our church office once school is out. The new rental home in Calera has proved a good place to live. We are all slowly but surely developing new friendships while missing our old ones. Life is good, life is blessed; it is continually moving forward and every day closer to April 23rd has brought another worrisome thought to my mind. I quote Philippians 4:6-7 daily and for a moment I find peace, but that moment is gone much too quickly.
As I type I am in the most decadent room I have ever stepped foot in on the 21st floor of the Ritz-Carlton hotel in Buckhead/Atlanta. I honestly don’t know exactly how I got here. Through a network of friends, by the generosity of strangers, and with a humbled spirit I sit in a bed with linens that are probably worth more than my entire wardrobe. I am definitely out of my element but I have enjoyed every minute here with my family. I haven’t needed to clean, do laundry, dishes, or anything on my daily punch list. The staff here is amazing and my family has been treated with such kindness and care. We have been totally pampered, and Noah has felt like a king (the staff continues to bring him plates of gourmet sweets). John is really happy about the complimentary boot shine, laundry services, and amazing food. I am just thanking God that we were provided with a weekend getaway to relax and enjoy each other before Monday. I didn’t know that a weekend relaxing in a 5-star hotel was what I needed to let go of some of the stress and anxiety I have been hording, and I am very thankful that it was orchestrated without my input! Sunday morning we are attending Buckhead church, a campus of North Point ministries, and I’m really looking forward to that service, and hoping to glean some more wisdom on how to release my cares to God. I know all the scriptures concerning it, but I am not very good at living it out and putting it into practice.
I have no idea what will happen on Monday. I’m trusting God to continue to show out through the miracle that is my son. I’m praying constantly for the Lord to continue to pour his healing into Noah’s body. He has been through so much and come out on the other side doing so well with very few side affects. (Noah was recently confirmed through psychological testing to have a cognitive disorder due to his surgeries and the trauma they have caused to his brain. He lacks executive function, and without almost constant redirection and lots of structure and proper discipline he becomes a very difficult child to handle. He becomes very angry and aggressive quickly, and the smallest inconvenience or unmet expectation will set him off like a rocket. We have been given some great tools to help guide John and myself through the process of parenting Noah, but there are days that it wears both of us down. On those days we have to remind each other that there are many other complications that could have manifested through Noah’s treatment; we just have to keep being consistent and push through the rough patches.)
Like I said at the beginning of this post, God is always providing where and when I need it. My battle with my thought life is going to be a life-long struggle as it is with everyone…I will not be tempted by anything that is not common to every other man/woman. But HE is faithful and just to provide a way out of that temptation. And he has always been there to offer a way out. It is up to me to choose whether or not to dwell on those “last days” thoughts, and often times I do, ending up with a face wet with salty tears and with a nauseated stomach. But tonight I am choosing to reach for the way out of these negative thoughts through the power offered by Jesus Christ. I am choosing to believe that He has more healing for Noah, the boy that never gives up. He just keeps going, and going, and going. Pray for Noah with me, and ask God to extend his hand of mercy once again this Monday morning. His scan is scheduled for the first slot, so we should have the results early to mid-morning.
A few verses before the scripture I mentioned above says this: “Rejoice in the Lord always. Again I say, rejoice!” (Phi 4:4). ALWAYS. Not sometimes…not just in good times, but always. I am rejoicing in the evidence of Jesus Christ and his promise to heal, whether in this life or through eternal life…He is our healer. Let us rejoice because He always provides a way of escape from temptation. Let us rejoice because He offers eternal life to any man/woman/child who would come to Him in humility and with belief in His forgiveness. Let us rejoice because death does not have to be the end of life. He is good to us on such a grand level that we cannot understand, and for that I will rejoice.
Thanks for reading my ramblings and confessions, and hopefully someone can take something positive away from this blog. Your encouragement and prayers help us through this journey…we appreciate you!
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.