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!
This picture shows Noah's silly side...he thinks it's hilarious to put undies on his head and run around. He is a funny guy, and also a stubborn one, never wanting to quit or give up, and praise the Lord for that! He is doing well, and his fight is not over! I've said it before and I will say it again: this kid is tough as nails. He is doing well, by all appearances, and is keeping up with his peers in most areas. No complaints of headaches, weakness, vision impairments, etc. He is as tough as they come, and God is not through working in his life. We celebrated Noah's 4th birthday last week; once at his day school party, with cupcakes and juice, once on his actual birthday (2/28) at Chuck-E-Cheese with Mom and Dad, over-priced pizza, cake, tokens, loud noises and flashing lights, and once at Mimi's house with all of our family and closest friends from North AL (and Arkansas!), and a large inflatable jump castle! It was a wonderful week of Happy Birthday songs and happy tears of remembrance, with some tears of sadness for what half of his childhood has been made of. Above all, this 4th birthday is a miracle to us and to so many that love Noah, and we have had some great celebrations in honor of his fourth year. I was hoping to post some pictures from his party with this update, but that will have to come later since they are all on Mimi's camera. Instead I've left you with a video from Chuck-E-Cheese, and a few pictures from our time at home this past month. Noah had a visit with Dr. Reddy a few weeks ago just to see how he was doing, and today he finally got to meet his new pediatrician, but unfortunately it was because he has a sinus infection. Noah is so blessed to have wonderful physicians within minutes of our new home who treat our family with such compassion and concern.
Well, I have been avoiding this blog for long enough. I haven't been the most positive person on the planet the past few weeks (try saying that ten times fast), and I have been struggling with what-ifs again as we await Noah's MRI in April. It is such a difficult task for John David and I as Noah's parents to be 100% focused on the miracle of the present when we allow worries of the future to cloud our minds. It takes a constant day-to-day and even minute-to-minute renewing of our thoughts by the promises and truth in the word of God to keep us focused, and we admittedly fail at that daily. But despite the temptation to fall into depressive thoughts and to play out what-if scenarios, God has held us together with the glue that binds so tightly that no attack of the enemy could put a wedge in between us. Beyond all of our ability, our eyes are constantly open to lies and deceit that are thrown in our direction. We realize that we are not just in a battle for Noah's life and for our family, we are in a spiritual battle of darkness vs. Light, and Truth vs. lies. I don't know how many of you reading believe in something I've heard most call "spiritual warfare," but for the past few months John and I have been fighting against a barrage of lies and temptation of depression that we don't typically deal with. By the power and grace of the Holy Spirit we have been able to see these attacks for what they are...lies and trickery. It's so frustrating that the joy in our miracle is being threatened because of these attacks where we are weak. But thankfully where we are weak, God is strong and we can stand on that promise!
I have to publicly honor my husband by saying that for the past several weeks I have been so proud of the lessons he has taught in our Sunday morning contemporary service (called SonDay Live), and I am so thankful that God has provided this opportunity for him to preach several times a week and fulfill his calling in this season of his ministry. His honesty in the messages he gives is such a testimony to God's grace and goodness to walk with us, even carry us through the hard stuff in life. In his vulnerability to admit his struggles and mistakes, he allows God to speak to me and challenge me to become a better follower of Christ. I am honored to be linked with him through this journey.
As I mentioned earlier, Noah has an MRI on April 23rd. Please be in prayer for no evidence of tumor...that Noah is healed and will need no more treatment! Also I ask for prayers for John David and I as we fight off the temptation to worry and fear our future as a family. We are so thankful for the encouragement and support you all have given us and we love you even though we don't know who most of you are!! We have a gracious God, who gives graciously through His people. Keep praying and remembering Noah!
There is no place like home - even a new one!
We have been home now two weeks and things are going very well for Noah. Yesterday we took him for his post surgery check up and he had all of his stitches removed. I quote Dr. Wellons - "Noah is amazing" - we agree.
He wasn't very excited about getting his stitches out as we drove to the hospital. He had a lot to be taken out. He sat in Jessica's lap and did very well sitting still. His nurse Nadine was called stupid by him several times as she tried to be as gentle as she could. She has a lot of patience and a great way with Noah. As soon as it was over he told us since his stitches were out he wanted to go to the Chick-fil-A play ground. We agreed.
Noah is back to his old self, running though the house with different items of clothing on as his costumes. One moment it's a cape and he is Darth Vader, the next he is wearing his underwear as a mask and he is Nacho Libre the wrestler. We don't know what to expect any given minute. These have been some fun days.
These two images are from the follow up MRI the day after his surgery. The image on the right is from the side view. The white part at the lower left of the picture is where his mouth is. The black void is what is missing on the left side of his brain.
The picture on the left is looking at his head from the bottom. The White void is what is missing from the left side of his brain.
Noah is a walking miracle. He hasn't lost any abilities in movement and motor skills that he had before this last surgery. His memory is for all we can see perfectly unaltered. His speech is somewhat affected, he stutters sometimes when he is starting a sentence. His temperament seems the same as it was. We give God the glory for allowing Noah to come through this surgery so well. We know God uses doctors and medicine to heal. He gave man wisdom to accomplish great things in the medical field. We thank God for his doctors and nurses that take such great care of Him. And when medicine can't do anything else, we know that God isn't finished, He uses medicine, and sometimes He just works it out Himself. Noah is missing between 1/5th - 1/6th of his brain, and if you didn't see the scar i don't think you would ever know. So we give God Praise for the things he has allowed to happen in Noah through this surgery.
Noah's next big step is the MRI scheduled in April. Dr. Wellons wants us to wait three months to get the next scan. Everyday i fight the urge to think about this. It's the hardest thing I am going through right now. I am trying to live 24 hours at a time, and enjoy the now. Jesus said not to worry about tomorrow, today has enough to worry about. Some days the battle is harder than others. As we get closer to April, please pray for the peace of God to guard our hearts.
Christ said if we would speak to the mountain and had faith, it would be removed. Please join us in praying for Noah, for every cancer cell to die at the root, that this mountain would uproot itself and be cast out of his body and that he would grow up to be a Godly man in an ungodly generation.
Thanks for praying!
Spread the word, Pray for Noah
Just under 2 weeks since his surgery, and Noah is doing well. After we got home on Tuesday, he was still dealing with his temperature going up and down quite a bit. He was still in some pain, and was tired most of the time. He has gradually begun to regain some of his energy and spunk, and his fevers are few and far between (about once every 24-48 hours). He is still not back to his pre-surgery self, and I'm not sure when to expect that to happen. Regardless, we are thrilled with the results of this surgery and give glory to God for the quick healing occuring in Noah's body. I have been able to get most everything unpacked and organized in our new home, with Noah sleeping so much after we were discharged. Noah and I got out of the house a few times last week, and he is quick to share his recent experiences and new incision with anyone who will lend their attention. He is very proud of his new "scar" and asks if everyone else has one as well. Yesterday Noah got to play with his cousins Evie and Aaron and visit with Grammy, Uncle Jamie and Aunt Aleesha. He had a great day and really enjoyed having so many people he loves in one place. He lets me know often that his family is important to him and what he loves most is spending time with all of them. We are thankful to be close enough that he can see his extended family quite often.
In other news, we had a scare last night: he was sitting on a bench at our kitchen table, and just fell off and hit the back of his head on the floor. He was screaming in pain, John and I began to panic, and I paged the nuerosurgeon on call. I'm sure she has had many calls from frantic parents like myself whose child has hit their head after a craniotomy, so she reassured me he would be fine, and children are going to hit their heads from time to time. I felt a little silly for being so paranoid, but better paranoid than apathetic, right? With some Tylenol and rest he felt much better. Now I make him sit in a chair with a back if he is at the table alone. :) Geesh.
John is doing well and working hard. Noah is not happy that he is back to work, and he protests every time John leaves the house. It's really pitiful. I've tried to explain that Dad has to work so he can take care of our family, so we can have food, a home, cars, and toys. This afternoon he scolded John for getting ready to head back to church, saying, "We don't need food!! Just toys! No food, no house, just toys!!" I guess he only wants John to work enough to buy toys. :)
We have a follow up appointment with his neurosurgeon next Monday; he will have the stitches removed then. I hope he will be cleared to return to school; he misses his classmates and teacher. We aren't sure what, if any, treatment will be available or best for him following this surgery. I'm assuming an MRI will take place in the next few weeks (one month or so after the last scan). We have received several emails regarding alternative therapies that are available, and if you have sent one of those, thank you (I haven't responded to very many emails lately). John and I are still trying to decide what the next step will be based on what would be best for Noah and our family. Above all we are praying the surgery removed every cancer cell from his brain and we will not need to make any more treatment decisions because no tumor will ever grow again, and he will live to be a very old man with an amazing story of how God used Noah's physicians along with His healing hand to spare Noah's life. For this child we will pray, for His glory to be made known, and for His will to be done. Thank you all for joining with us in prayer! I am beyond humbled and amazed at the evidence of God working in Noah's life and I hope that all who pray for him have been encouraged by this win...this "YES" that is so big to us!
We are home! We were discharged from the hospital shortly after 1pm this afternoon. Noah has done very well walking around the house and has enjoyed playing with his toys. He is still not able to play as hard as he did before the surgery, but that will come with time. He gets tired pretty quickly and takes breaks when he doesn't feel well. His temperature is still fluctuating and he has been sick to his stomach some; we are hoping that will soon pass. Thanks for all the prayers; we made it home!!
This morning Noah woke up feeling well, no fever and no vomiting. The lab results are so far negative, but we still need to wait around to make sure he doesn't have have a fever today. We ventured outside of our room for a few minutes last night, but he still isn't really interested in taking walks or exploring, which tells me he still isn't quite back to himself. But he will get there. We will try to encourage him to walk around today and try to work on his balance and stability. We still have to hold his hand or stay very close while he is walking on his own because he slips and trips quite a bit.
Just because we are in a not-so-ideal environment and situation, we still like to laugh and have fun! Last night we had a popcorn-pajama party and watched Wipe-out and America's Funniest Home Videos, two of our family's favorite shows (yes, we find pleasure in laughing at people as they injure themselves doing ridiculous things). Between laughing at people, playing with Star Wars toys and Noah's new Temple Run fascination, its not 100% a bad experience. :) Thanks for your continued prayers as we wait!
Noah woke this morning with a temperature of around 104, and he began vomiting shortly after. He slept most of the morning away. When his surgeon came by he decided Noah needed to stay and have blood and urine samples taken to test for any infection. After a dose of Zofran, Tylenol/Motrin and lots of rest he is feeling better caps afternoon. I can't predict how long this process of waiting on the results of the labs will take, but from past experience with him being neutropenic we would wait days to see if the cultures grew anything suspicious. Our sweet neighbor Xavian (http://www.caringbridge.org/visit/xavianbecketthall) and his parents have been waiting for infection to clear for weeks, so I have no room to complain about 6 days! I am doing my best to be flexible and patient, knowing that medically this is the best place for him to be right now, although emotionally it's stressful for him to know he has a new home, a new room and backyard waiting for him to enjoy. We will continue to pray for infection to stay away and fever and vomiting to not return again. Thanks for joining us in our wait for healing!
"Wait on the Lord; be strong, take heart, and wait on God" (Psalm 27:14).
8:00am - Noah had a rough night last night. He tossed and turned, talked and fussed, persuaded and manipulated to try to get out of bed. We tried everything to coerce him to sleep; he didn't get a nap yesterday so I knew he was exhausted. Finally at 2 am he dozed off with the help of some Benadryl. Then his CT scan was at 5am - so much for a good nights sleep! He did well for that and went back to sleep when we arrived back in the room. He is sleeping now thank goodness so I hope he can get caught up. Good news is the scan looked good so his drain will be coming out sometime this morning. He will not get a topical medication at the site so I'm hoping he does will with the removal and stitches to close up that area. He should come off fluids also, then we will hang out while he is monitored to rule out anymore headaches/vomiting, or any other issues that could arise after the drain is pulled. If all goes well, we could look at going home this evening or tomorrow. Now, this is wonderful news for us and we will all be relieved to be back home. But good grief does this make me nervous. Noah has already been requesting to walk all the time and wants to try things that he just isn't ready for. We will obviously have to restrict his activity at home, and that will not go over well with him. As his "wobbly" feeling subsides he gets more confident, which is once again wonderful from one angle, but also frightening from another - one small fall would send us back to the hospital. We are also going to be watching for any changes in his incision, bleeding/oozing/etc. It will be quite a task to keep his little fingernails from scratching it. So even with all of my motherly worries, concerns, and stresses I am completely blessed at how this has turned out. Dr. Wellons is without a doubt an amazingly skilled surgeon and along with his OR team, nurses that have cared for him, (and the grace of God) Noah is doing so well that he is forgetting about the limitations he has had for the past four days. Praise be to God.
We have received lots of encouraging emails and Facebook messages and are so grateful to everyone who follows Noah's progress and prays. We are seeing our prayers answered one at a time. John and I have been overwhelmed by His goodness through the hard stuff!
11:30am - Noah’s drain has been removed and he is doing well. His iv line was also disconnected and I guess he wasn’t paying attention when that happened. I just helped him up to use the restroom and he walked a few steps, stopped, and started slowly spinning around with a big smile saying, “Look! I’m not tangled anymore! That makes me happy!” It was really cute. :) So we will hopefully be discharged around 6pm if all goes well for the next few hours. We will continue to keep you informed. It’s going to be a good day!
6:30pm - Noah woke from his afternoon nap with a fever, and began vomiting shortly after he woke. He has thrown up twice already and says he feels sick again. We will stay at the hospital another night to have him monitored and make sure this fever goes. A fluctuating temperature isn't a cause for alarm, but one that rises to 101 or above and hangs around is...so it's best to stay put and see where this is going. He had a good afternoon with lots of visitors, which he enjoyed. Some special friends came to visit with gifts: a special Bead of Courage made just for Noah and LOTS of Star Wars toys! He was ecstatic that he was given "the Darth Vader ship to ride in," something that he has wanted for quite some time now. Thank you to the Newtons for such a special visit. :)
Noah is disappointed that we will be here another night, but I tried to explain this is the best place for him to be when he doesn't feel well. He is sleeping again, along with Dad. :) Please pray that this is just a normal temperature change, and for it to go back down quickly. Also pray for his nausea and vomiting to subside, and for infection to stay far from him. John David will be preaching tomorrow morning and evening, and I know it will be difficult for him to be away from Noah while he is feeling sick...so you could say another prayer for him to feel at peace about this, and for the Holy Spirit to direct his words so those who hear it would be motivated to read God's word and grow closer to Him through the message.
Thank you for everything you have done and are doing to support our family! Much love to all.
Noah is feeling better today! He still has some improvements to make but he seems to be recovering nicely. His drain will be clamped tonight and he will have a CT scan in the morning to see how he does overnight without the drain. If everything looks good, we should begin preparation to go home, maybe on Sunday.
When the physical therapist came to visit, Noah decided he would try to walk from the bed to the sofa. He did very well, though he is still complaining he is "wobbly." He has since walked (with assistance of course) to the restroom and the sofa again. We are very proud of him and very pleased with his progress! He has not vomited today, thank goodness; neither is the pain as bad as yesterday. So he is pushing along, and we will just wait and see what tomorrow brings with the CT scan. Thank you all so much for your prayers and encouragement! We still have a fight ahead of us so please continue to pray and spread the word!
Noah has had a pretty rough day today. He has had pain and nausea all day. He has sores inside his mouth that are bothering him. He can't turn his head to the left yet. Just about everything he has eaten has come up. Dr. Wellons told us this morning that the third day after a surgery like his was usually the worst one due to the amount of swelling. Noah's attitude hasn't been all that bad today. Some of our visitors today were told to "go away and leave please" by our little man. He has called everyone and just about everything 'stupid' - but thats about as bad as it has been.
Occupational therapy came today to check out his movement and encourage him to sit up and move his neck. He has a pretty sore neck and didn't want to move too much. He hasn't stood up on his own yet and hasn't had a desire or tried to walk. This evening he asked us if he could sit on the couch with us. We were excited that he was the one making that decision. We got his out of the bed and managed to carry him over to the couch.
He was able to hold his head up on his own and move it around a bit which is great. He is having trouble turning it to the left, but today was progress! He sat in Jessica's lap and told us he was 'wobbly'. He sat there for a few minutes until I saw drops of blood on the floor. We didn't even notice that his port tube had disconnected from the IV line. Because his port tube had been exposed to air, the nurse had to remove it and re-access him. This made us feel pretty bad as parents, but at least he had a few moments out of the bed sitting up. Tonight as I type this, he is sleeping soundly. Every once in a while he will talk in his sleep. (He woke up a while ago apologizing to me for wrecking into a wall) :) I assume he was dreaming about his new motorcycle.
As you can see in these pictures, Noah had the big bandage taken off this morning. The blue circles on his head are where he had Fiducial markers. These markers allow the MRI to make a 3-D image and allow surgeons to have a better idea of what they will find inside the brain. Noah has two bandages covering up his incisions. He has been very good about keeping his ands off the wounds. So far they haven't bothered him to much. In the coming days, they will start to itch and become a bother to him.
We are so thankful to God for the abilities Noah has. There were (and still are) so many things to worry about going into this surgery. It is so easy to take for granted everything our bodies can do. Today, when Noah looks at me in anger and says "your stupid", I'm so thankful he can recognize me with his eyes, cognitively reason that he is mad at me - figure out a good insult and use all the faculties that make speech happen and say it with all the gusto of an angry three year old. It's a new perspective I have. Jessica and I have told him over and over how much we love him every time he has said it. Some parents would give anything to hear their child speak one more time - I don't type this lightly. Parents would trade it all for their child to walk again, see again, live again. Knowing precious families in these positions makes it difficult sometimes to publicly rejoice over Noah's abilities after all he has gone through. We are so thankful to God for everything Noah can do.We give Him praise and hope Noah's story will bring Him glory.
I encourage you in view of what you just read, to examine the great abilities God has blessed you and your loved ones with, and take some time today to bless Him for His goodness and His mercy and pray for those who struggle with the loss of abilities or the loss of loved ones, and reach out to those who need help or extra grace. Don't take for granted you children for one moment, don't let anything deprive you of loving on them and spoiling them every day, and don't ever assume that you are promised tomorrow - make the most of every opportunity you have.
That's enough preaching for tonight. :)
Please pray that Noah will be able to eat without nausea, that his pain will be managed, that he will be able to move his neck completely and when it comes time to walk - that nothing goes wrong.
Spread the word - Pray for Noah
Noah had a long night with some sleep, but not much. We were still awake at 2:00am so we watched a movie. It helped block out some of the sounds of other patients in the PICU and all the beeps and alarms that ring constantly. Noah had a lot of questions during the night about what was happening to everyone around him and why they were crying. He has such a big heart for others. It makes him sad when other are sad.
We had a great blessing this morning. We were told yesterday that Noah was 7th on the list of patients scheduled for MRI. That meant it would be sometime in the afternoon before he would go to the machine. He wouldn't have been able to eat anything until then. But we received a call from one of our favorite MRI nurses who gave him the 7:00am spot first thing in the morning!! We are praising God for His favor on Noah! He did very well before the scan. They put him to sleep and after it was over wheeled him back to the PICU. After a short time, Dr. Wellons, his neurosurgeon, came for a visit (He's the guy in the blue scrubs).
The scan results showed no residual tumor in the brain. Dr. Wellons was very optimistic and pleased with the surgery. He was able to remove everything he could see that was tumor and the tissue surrounding it. This does mean that he removed more of Noah's brain, but it seems that he has not been affected by this.
Noah was moved to a room on the 6th floor this afternoon. These are very nice rooms with an unlimited supply of Sprite and Ice cream. He is complaining a lot of his head hurting. He has thrown up some tonight and is trying to be very still. If he moves too much it hurts his head. He is still getting morphine for pain as well as other drugs. He has a CSF drain in his head allowing fluid to exit the wounded area. He hasn't wanted to walk yet, and thats not a cause of concern for us. He just wants to be still so he remains comfortable. We don't know how long we will be here. The previous surgeries, he didn't seem to complain about his head hurting near as much as this time. The surgery opened up the skull in the same place as his scar from the first two, but he also cut in a new place to get closer to the base of his brain. Our guess is that with this big of a wound, it's going to take some time before he gets any comfort outside of pain medication. He port is accessed now, so he has no IV's in his hands and feet anymore. this makes giving meds so much easier.
Tomorrow, physical therapy will come by to help him take his first steps after surgery. Please pray this doesn't cause him any discomfort.
This website had almost 18,000 hits from individuals yesterday. I still haven't wrapped by brain around that many people reading about and praying for Noah. Today 8,000 people checked in. Its is overwhelming to think about. The family of God is not bound together by denominational ties, geography, race or gender ~ but by the love of Christ who has encouraged us and given us his sustaining peace in the midst of the storm. Thank you, my family, for loving us though this crazy time.
Once again I'm reminded that Jesus told his disciples to get into a boat and take a trip to the other side. He never told them about the storm they were headed into, or the very possible threat of death that laid before them. What he did do was take a nap. They panicked - He slept. He knew what the outcome of the trip would be, they had no clue. It seems this scenario is a trend in the kingdom of God - know what I mean? When Jessica and I married, we never saw this coming. When Noah was born, we never saw this coming. And here we are. Sometimes during this journey it has felt like Jesus was napping. Every time we have heard disappointing news or watched Noah suffer I wrestled with fear and anger - and even panic. I have asked tough questions to God that haven't been answered yet. I may never get some of the answers in this life. But I don't believe I am in this boat alone. Now that we are though this surgery, perhaps the Master will stand up and speak to this horrible thing called cancer and say "peace- be still" and we can move on to the next part of our lives. Until then, we are going to do our best to remain in His peace.
Lastly, we had a visit from the CEO today in our room on 6th. He was very kind to Jessica. (I was home getting a short rest) It does my heart good that so many of you expressed your concern for the PICU policy. Perhaps parents who are in our situation in the future will have a less stressful experience. Our voices have been heard. Thank you. - John David
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.