We made the trip down to Children’s Hospital early this morning for our post surgery check up. Noah had his stitches removed and was so tough while they took them out. He had the ipad to distract him while the nurse pulled them out and he sat very still and for a two year old I think he did pretty well! He didn’t whimper, cry or squirm. In fact – I was more nervous about it than he was. Nadine, his nurse, pointed that out to Jessica and I. We all had a laugh. We have had a very, very good recovery. Noah has been full blast since we have been home. Our biggest challenge was to try to limit how active he has been. He is 100% little boy. He loves to run & jump, climb on furniture, jump off furniture, run up to furniture, climb up it run on top of it then jump off it and roll in the floor – then repeat. All Day, all night. In the back yard – he swings, slides, plays with the dog, plays in the dirt, etc. You get the point. At times I forget that he has just come through brain surgery. I have to remind myself of how careful he should be. When I see him acting “normal” it is hard to tell he has had anything happen. We have an appointment with his oncologist next Wednesday at 9:00 AM. We will be discussing further treatment. We ask for your prayers as we approach this decision. There are other treatment options we have not tried. Radiation is one. There are also experimental drugs that could be a possibility. We really don’t want to see Noah go through anything else. We want it all to be over. Please pray that we will have wisdom and discernment. We have not yet heard about the pathology report. Dr. Wellons was confident that the growth he removed was the same thing as before. He is also confident that he removed all the new growth and the tissue surrounding it. That is great news! It is what we can’t see though, that concerns us. These cells, if left unchecked, will multiply and again grow into something that threatens Noah’s life. The best treatment is total resection. Let’s all pray that that is the case. Thank you for all the prayers and messages of encouragement. We are so blessed as a family to be supported by so many. Noah received a package in the mail yesterday from a couple we have never met. Inside were several toys. One of these toys was a small stuffed puppy. He quickly named it Charlie Brown (his new favorite cartoon). He tried to take it in the bath with him – we had to intervene. He went to sleep with Charlie brown last night. I know this seems like a small thing, but as a father to see Noah comforted by an act of kindness from a stranger is somewhat overwhelming. I am constantly reminded of how much he is loved by things like this. The words “thank you” don’t seem to be enough – so until I can find better words – Thank you!!! John We are sitting in the room packed and ready to go. We are just waiting on the discharge papers and we are out of here! Noah is ready to go. He has already been roaming the halls and climbing on the furniture.
As soon as we get home - we will party !! Thanks to all who have checked this blog to keep up with Noah. Continue to keep him in your prayers as in the coming weeks we decide what kind on treatment if any he will get. God Bless!! John 4:07 PM We are in a room! Noah had a good night of sleep. He woke around 6:00 AM. We were not allowed back to where he was until 8:30, but Noah can be a handful when he isn't happy so they let Jessica back around 7:30 AM. At 8:30 we all went to the MRI and Noah did great! Dr. Wellons (his neurosurgeon) came and gave us the report. From looking at the scan he saw that he was able to remove all of the tissue affected by the tumor and a lot of scar tissue. He was very pleased with the scan and very pleased with Noah's recovery. Noah has been talking up a storm, eating popsicles and playing with the ipad. All of his blood work looks good. If he continues to do this well, we may be coming home tomorrow night! It is amazing how well he is doing. His face isn't swollen as bad as last night so he can see. He hasn't complained very much about pain, only about the IV in his foot. He has been a little sick to his stomach, but that is about as bad as it has gotten. Jessica and I are doing well. We feel a tremendous weight lifted off our shoulders. We really slept well last night and are both looking forward to going home. We thank God for his grace, and for bringing Noah this far. God doesn't always say yes to our prayers. He often allows us to walk in valleys where we are confused and unsure, grasping for hope. He allows us to go through painful situations, experience loss and disappointment. It is easy to question your faith in these times. It's easy to give into anger and doubt. It is easy to walk away from God and turn your back on Him when you are devastated by tragedy. What is not easy to do is to let go and just trust Him. When we make our requests and say our amens, thats when we must leave it in His hands and believe that He knows best. I have made many sighs these last five days. Almost every one has been reminding myself that Noah is in God's hands and not mine. Sometimes His decision are not at all what we want, but He has always been faithful to work out all things for good. For some reason God has allowed Noah to go through these things. For some reason He has allowed pain, disappointment, and sorrow. We are not alone in this. From the beginning of mankind, pain and hardship has been a large part of life. Some people we know have never experienced pain like what we have experienced, and others have had it much, much worse. Through it all, in every circumstance, Jesus' words have been true. "In this world you will have trouble, but take heart, for I have overcome the world." When we lay our pain and worry at the feet of Jesus, He allows us to experience victory. That victory is either here or on the other side of eternity. Either way - it's still victory! I hope to do the next blog from my living room. John We are in the surgery waiting area. Noah has just fallen asleep which is a huge blessing. Soon the anesthesia doctors will come and give him some medicine (versed) to help calm him as they take him to the OR. Once inside Noah will have about 4 IVs. We were just told he is anemic so he may need a blood transfusion during the operation. It is scheduled to last about 5 hours. There is a good possibility the incision will not be as large as the first surgery, and that will make recovery easier. We will be kept informed of the progress as the surgery goes on. As much as I am able, I will pass on the information. Please pray for Noah's safety. There is a risk of stroke and other more serious complications. Please pray for the clarity of his physicians and the attendants. Pray for calm hands and quick minds. Pray that this is the end of Noah's life with cancer. The best and only known way to cure this type of cancer is total resection. Today could be the best of days for Noah, The end of a long and hard chapter in all our lives. 4:20 PM I just talked to one of Noah's physicians and so far so good. He is doing well. They have given him a unit of blood already. The neurosurgeon currently is using a microscope to look at the area where the tumor is. No word yet on how much longer it will be. Hopefully we will be able to update that its all over. 5:54 PM Noah is now in recovery. The surgery went very well. Everyone on the team was pleased with how everything went. Noah is still asleep and we are waiting for the moment we can go see him. Dr. Wellons was able to remove all of the new growth and all of the scar tissue as well. He is sending all of it off for pathology report. Noah has an MRI scheduled for in the morning to look at the area. He will stay in the PICU overnight and hopefully be moved to a room tomorrow.
God is good! We are so thankful for every prayer and message of encouragement from so many of our friends, family and those of you we have never met. Thank you so much for loving our son. It is 8:30 AM and Noah is in the MRI at the moment. Todays scan will give his neuro surgeon a 3D image of the area of the surgery. He will use this data to map out the procedure before the first incision. The small green tabs on his head are reference points he will use to know exactly where the tumor is. Dr. Wellons explained to us that the area the tumor is in is not the place we thought it was originally. For months we have looked at a small area of scar tissue and wondered if it was tumor. The new growth is not in this place. One of the risks involved in the surgery tomorrow is that the area of the first tumor resection is now a fluid filled hole. Once the fluid is removed, the brain may fall in on itself, and the surgeons will have to dig to get to the new growth. This MRI will give them accurate information on where they should go, instead of them just having to look for it . Noah's surgery will begin at 1:00PM. We have to be at the hospital at 10:30 AM for preparation. He will not be able to eat breakfast or lunch. The surgery is estimated to last five hours, after that he will stay in the pediatric intensive care unit. We do not know how long he will have to stay in the PICU but we hope it will not be for long. We are not allowed to stay with him overnight and during the day we have to leave every two hours. This is one of the hardest things for us to do. After he wakes up from the MRI today he will be dismissed. We are so thankful to Jarrod and Marci Harrison and the Hanna Grace foundation for putting us up in the hotel. If you do not know their story, it is worth your time to read it. They are amazing people: www.hannahsgiftsofhope.org I would also like to thank our family at Friendship. Your generosity gave us a great weekend to enjoy being with each other and it relieved a lot of stress. Tomorrow Noah will need your prayers. We have been overwhelmed by the support of so many people. In the last 24 hours we have received so many messages of encouragement, sympathy and hope. We are truly blessed to have so many friends who love our little boy.
Noah had a full day of fun. We took him to his Grandmother's house in Florence and he played with his cousins Evie and Aaron all afternoon. My mom said he played well with everyone and it was a good time. Jessica and I have planned a quick get away trip for us. We will be leaving early Friday morning headed to Atlanta. We want Noah to have as much fun as possible in the short time we will be there. Six Flags has a special Thomas the Train section I think he will enjoy, and I know he will love the aquarium. I hope that he has the time of his life. Next week will be tough. On Monday we meet with his neuro surgeon, Tuesday we meet with the anesthesiologist and have another MRI. Wednesday he will have surgery. As of right now, we don't know what time the surgery will be. For the next three days we are going to try not to think about it. A few weeks ago, our pastor preached a sermon in a series called "one month to live." In the message he showed a clip from the movie "Dead Poet's Society" where Robin Williams whispers into the ears of his students "Carpe Diem" - Seize the Day! I can think of no better time than now to Seize the Day. So for the next three days I may not answer my phone, check my email or update this blog. I plan on disconnecting from everything except the laughter and giggles of a 2 year old boy who holds my heart strings. We may have as much fun in the next 72 hours as the average person does in a year. Why not - we might as well while we can. : ) Thanks for the prayers and the kind words. For those of you who know how to grieve with those who are hurting.. thanks for what you have said .. or rather what you have not said. It may seem awkward to tell someone that you can't think of anything to say when they are hurting. In that moment give in to the awkwardness and just say the most important things - "I am sorry for your hurt." Most of the time, that is enough. I imagine thats why Jesus wept when he arrived at the tomb of Lazarus. He saw his friends grieving and hurting. He was hurting too. Instead of telling them "everything will be alright," He chose to weep with them. He understood that sometimes the best things to say when someone is hurting are usually things not spoken. There is a time to grieve with those who are hurting, a time to encourage those who are discouraged and a time to celebrate with those who have something to celebrate. I spoke with a man last night who has been through some tragedy in his own life with his children and he said to me, "You can usually tell when someone has gone through something like this; they are the ones who only say, 'I am sorry you are hurting.'" We know Noah is in God's hands. We know his story isn't over. We know that God can and will work good out of every situation. Now its time for me to sleep - for tomorrow we party! John David Noah had his 5th MRI this morning around 10am and after he woke up we went straight to clinic to meet with his oncologist. The past 2 MRIs have shown a questionable spot on the outside edge of the cavity that remains in his brain. That spot hadn't changed as of late June, but the "spot" has grown to about 1 centimeter in 3 months and is being treated as new tumor growth. Chemotherapy has been cancelled and we now have a surgery scheduled for next Wednesday, October 13th. We will meet with Noah's neurosurgeon on Monday and remain in Birmingham for another MRI on Tuesday, then surgery Wednesday morning. We are unsure of the surgery time right now, and will have more details about the surgery after our meeting on Monday. What I do know is there is more tumor despite the chemotherapy treatments, and that scares me. I knew in the beginning that this was a very aggressive tumor and there was a possibility that it could return, I just didn't expect that to happen. Noah's neuro-oncologist is still searching for other treatment options - maybe radiation, since he is approaching his 3rd birthday and it is considered "safer" after age 3; maybe an experimental treatment or a different type of chemotherapy - we will discuss all that after this second surgery. In the meantime John, Noah, and I are quickly planning a last-minute mini vacation to spend some quality time together before next week. We are unsure how long we will need to stay at the hospital following surgery. I'm praying that one night will be sufficient, but preparing for several nights. Of course this news is devastating to our family, but we also knew there was a possibility this could happen. We will continue to stand in faith, pray, and ask everyone to pray with us for Noah's healing and most importantly God's will. This is just another bump in the road and we will get through it, hopefully revealing even more of God's glory. There will be a time of prayer and laying on of hands at our church (www.friendshipumc.org) tonight during the 6:15pm believers service. We believe in the passage "Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing psalms. Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. Confess your trespasses to one another, and pray for one another, that you may be healed. The effective, fervent prayer of a righteous man avails much. Elijah was a man with a nature like ours, and he prayed earnestly that it would not rain; and it did not rain on the land for three years and six months. And he prayed again, and the heaven gave rain, and the earth produced its fruit" (James 5:15-18). Please join us in prayer wherever you are. We will keep updating as we have more news, especially on Monday evening once we have a surgery time and more information about the procedure. Thank you for continuing to support us and lift up our little boy. James 1:2-8 - My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing. If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him. But let him ask in faith, with no doubting, for he who doubts is like a wave of the sea driven and tossed by the wind. For let not that man suppose that he will receive anything from the Lord; he is a double-minded man, unstable in all his ways. 2 Corinthians 1:20 - For all the promises of God in Him are Yes, and in Him Amen, to the glory of God through us. I'm writing from the hospital; Noah just received two chemo drugs (round #8) and is sleeping soundly. He has been telling me that his stomach hurts, and he pretends he is vomiting in the plastic tub we use as a "puke pan." So the drugs are taking effect. His ANC wasn't quite as high as his Dr. would have liked, but to keep him on schedule she wanted to continue with the treatment and reduced the amount by 25%. I'm expecting him to become neutropenic in a shorter amount of time than usual, so we could be back here at the hospital in less than a week. He will get more chemo in the morning, fluids for the rest of the day Friday, and hopefully we will be home Friday evening or possibly Saturday morning. I haven't written in quite a while because life has been pretty normal and quite boring until his treatments began again. (Boring is good, in my opinion - I don't particularly enjoy these "exciting" trips back and forth to the hospital in Birmingham.) There is a gap between the end of June and the beginning of August where I didn't blog at all. During that time we went to Disney world (John calls it a TRIP, not a vacation!), we spent time visiting with family and friends, had some play time with other kids, got a new puppy (who already weighs 20 pounds), grieved with my dad's family over the loss of a loved one, tried to find just the right color green to paint my dining room. . . and we didn't think about cancer very much. There were no shots or sickness or mad rushes to the hospital. We took our time and made it quality. It was good, and in a few more months we will have that back! A few developmental updates on Noah: We have had some concerns since Noah's surgery that he would not be able to speak clearly or have complete mobility of his right side (mostly in his leg), and we were concerned about his vision. Since November he has had several physical/occupational therapy visits and there is nothing wrong with the movement of his arms and legs. He has learned lots of new words and has begun making sentences, but he will still need some speech therapy. His neurosurgeon assured us that he will catch up to his peers by age 5 if not before. We shared with his neurosurgeon that when Noah "reads" a book or looks closely at anything he turns his head so his left eye can do most of the work. Dr. said whatever damage is there will be permanent. (We have yet to take him to an ophthalmologist.) We are so thankful that Noah is developmentally on track for the most part. We have been so blessed by many people from all over the country who have supported us through this season of our lives. I haven't been able to recognize everyone and thank them publicly for their gifts and support, but I would like to share with you about "The Naked Gospel Project." This project was a competition for musicians to enter an original song that best represents the premise of Andrew Farley's book "The Naked Gospel." Terry McNeal and his band entered their song "Transparent" (terrymcneal.com) and along with a lot of help from Terry's wife Sally and lots of determined voters, they won the competition and $5000. What's amazing and selfless of this group is they are donating the money to help us pay for Noah's medical bills. Here is a letter that Terry wrote to the author of the book and it is posted at www.thenakedgospelproject.com: Andrew, I am so thankful for you and The Naked Gospel Project for sponsoring this contest. Through your efforts, many people will surely be blessed. This has been an amazing journey of hope and faith for those who voted for “Transparent.” What started out as simply an opportunity to promote my music and ministry has ended up blessing a precious little boy and his godly parents, thanks to you and The Naked Gospel Project. Several months ago, my guitar player Scott Owen was searching the web for promotion opportunities for the Terry McNeal Band when he came upon your contest. We talked about it, prayed about it, and read through the contest rules to make sure we fit the criteria. I watched your videos and decided on the one tune that would best fit. How much more “naked” can the truth be when we become “transparent” and let God's truth and love shine through us?A few weeks went by and the trials of little Noah Crowe were becoming more and more serious. He was diagnosed with a very rare form of aggressive brain cancer. John David and Jessica Crowe, parents of Noah, are dear friends of ours and true servants of the Lord.I was thinking about what we might do with the money if indeed we won the contest. Almost immediately, the Lord impressed on my heart that it needed to go to the Crowe family. Noah's medical bills were starting to become astronomical. I mentioned the idea to my wife and she said the Lord had told her the same thing! I immediately called Scott and yes, the Lord had told him the same thing! So that's how the concept was born. The Lord told all three of us simultaneously! Sally, my wife, started a FaceBook campaign and got literally hundreds and hundreds of people to join and participate. These dear people voted for “Transparent” and prayed for little Noah. Your contest facilitated literally thousands of prayers going up to the Father for this little boy! Noah is still battling this awful disease. I believe he is going for his eighth chemo treatment next week. His parents have kept an inspirational blog going about his journey at this link: www.PrayForNoah.com . Please go to it and read about this precious little boy. Again, Andrew, God bless you and your ministry. In Christ, Terry We are very grateful for amazing family, friends, and community, and we will do our best to continue to pay forward the kindness we have received. Please pray for Noah to be free from sickness during this treatment and to be free from infection and fever in the coming weeks. We got great news this morning. One of Noah's doctors came into his room around 8 a.m. and told us we would be able to come home today. Not because he is any better, but out of compassion for him. He hasn't had a fever in seven days and his blood is clear of any infection. His neutrophil count is still very very low. Noah currently has .017% of an active immune system - which is better than what he had yesterday. They didn't want to see him in a hospital room any more than we wanted to be there. They let us leave on some strict conditions - continually monitor for fever, no crowds, no playing with the dog, no going around barefoot, etc.
We are glad to be home - Jessica more than anyone. Noah at least has had a bed for the last week. Jessica has slept on a fold out chair. She is a very tough woman - the toughest I know of any way. She will enjoy her own mattress and pillow for at least a few days. Noah is scheduled to have Chemo # 8 in nine days. It's not a long break, but at least we get one. Noah has ran from room to room all night. The first thing he did when we got home was run to his room and throw every one of his toys on the floor. Typical boy! He beat his drums, played mom's guitar and sang his own made up songs for us, jumped on all the furniture and got into everything he isn't supposed to. I think he is glad to be here. Currently he is laying on my pillow in my bed and we are in a debate about where he is going to sleep. I am bigger than he is which renders his argument invalid. As soon as I finish typing this I will enter the ring and wrestle this little boy into his room and his own bed which is so much better than doing it in a hospital room trying to get him into a hospital crib. I never thought I would be glad about having this fight, but tonight I am thrilled to get the opportunity. This last week has been very hard. Thanks for all the prayers and support. We know that God has surrounded us with amazing friends - some of whom we have never met. I want to share a quick story about an act of kindness shown to me I hope I never forget. On the way to Birmingham Wednesday night, my goal was to make it to Chick-fil-a before they closed at 9:00 p.m. I led worship at Friendship that night and was on the road by 7:45. I did not make it in time. I pulled into the parking lot at 9:06 p.m. The parking lot lights were off and the dinning area had chairs on top of tables. As I drove though the lot I saw people cleaning up and pulled into a parking space. I am a pretty stubborn person - many of you know that - I was determined to get some chicken. Noah will not eat much hospital food. His favorite food is Chicken nuggets made by - guess who? I walked up to the window and looked in just at the right time to see a manager walk by. I banged on the glass and got his attention. I waved him over to the locked door. He opened up and asked if he could help me. I explained my problem. I have a sick boy who isn't eating well and if i could just get him some chicken it would make things better - if for just a moment. I told him I knew they were closed and I would be glad to pay whatever I had to to get it. He told me to wait at the door and walked away. He came back with a small bag. There were no nuggets left, no strips and no sandwiches at all, but he handed me a small bag with one hot fillet - just for Noah. He didn't charge me but just smiled and told me he hoped Noah was better soon. Twenty minutes later I watched my son eat that chicken breast with a big smile on his face. It was one big nugget! To see him eat anything on his own gives me great pleasure. I know that manager didn't have to open the door or even talk to me. He certainly didn't have to give me anything. It may seem like a small thing to most people - but to me it was an amazing act of kindness I will not forget. You never know what your act of kindness can do for someone else. It may seem like something small to you, but for someone else it could mean the world. So if you ever find yourself at the Chick-fil-A in Fultondale, Alabama at the Walkers Chapel road exit, tell the manager you wish more people in the world were like him - I certainly do. Please keep praying for Noah. Pray for healing and strength. Pray for a cure. John On Saturday August 14th, Noah began running a fever. By nine o’clock that night it was high enough that he had to go to the hospital. We loaded him in the van and Jessica and our good friend Rachel Quinn made the drive down to Children’s Hospital. Around three o’clock that morning he made it to a room. Since then, his ANC count has stayed at zero. The ANC count shows how strong his immune system is. When it is at zero, his body has little to no white blood cells. At this point he is in the room without a fever. He gets antibiotics every day and platelets when he needs them. When his body begins making white cells again and gets stronger he should be able to come home.
Chemo is hard. It is hard on his body and his emotions but he is handling it well. He was telling Jessica last night how he wanted to go home. He was telling her all the things he wanted to see - his tractor, his puppy, his room, and his toys. She told him he would be able to see them when we get to go home. At that point he looked at her and said, “all done” which is his way of saying, “lets go home!” Please pray for his body to bounce back and be able to come home soon. Thank you for your continued encouragement and prayers. John We have a tough little boy. Sometimes I am just amazed at how Noah handles some situations. Because we are again going through chemo, we must give him a shot every night to help boost his white blood cell count. Jessica was preparing the syringe and asked Noah "Where do you want to get the shot tonight?" Noah was lying in the bed beside me and pointed to his left arm. He usually gets his shot in his leg. We were a little nervous about how he would react to the needle. If he wiggles at all once it is in it could cause him more pain. She asked him again and he pointed at the same arm. As she prepped the spot with an alcohol swab he started pointing to his leg and saying "shot, shot" but it was too late.
Normally, a two year old would fight and cry and be terrified of needles. ( no wait, that sounds like me) but Noah patiently sat there and watched Jessica inject the needle and slowly push the medicine in. He didn't even flinch. Not even a whimper. I hate the fact that he has gotten used to being pricked and poked every day. I hate the fact that he understands what it means to have blood work done. I hate the fact that this is the normal in his life. But I love the fact that he is one of the toughest kids I have ever met. I love the fact that God has given him courage and a tolerance for pain beyond what I understand. I love the fact that he is a fighter. Below is a video I took the day we started back chemo treatments. Noah has a deppo port in his chest. It allows the hospital staff to give him whatever he needs without putting an IV in his arm or leg. Blood is drawn from the port, He gets antibiotics and chemo through the port. The needle to access it is 3/4 of an inch long. If I were having a needle that long shoved into my chest I would sweat blood. (I hate needles.) But Noah just watches it go in without even flinching. He is such an inspiration to me. Watch this video and see what I mean. My request for prayer tonight is that God would grant Noah even more courage and strength, that in the coming months God would use this horrible situation for something good - in his life and others as well. Jessica and I have met and talked to so many people who know about and pray for Noah. It humbles me every time I am asked by a stranger "are you Noah's dad?" To know that so many people who have never even met Noah kneel before the Father on his behalf is completely overwhelming. Thank you - and please don't stop. John David We are on our way to Birmingham to begin Noah’s 7th chemo treatment (of 10). We have had a great break from this sickness, with our trip to Disney World, and the Chattanooga Aquarium, play dates with friends, etc. and have been spoiled with a “normal” life for the past few months. Emotionally this treatment has been hard for me to swallow. I don’t want to start this process again, but who would? I’m not sure how long these next 4 treatments will last, but I’m guessing about 5 months based on past experience. Please pray for Noah just as you have during his previous treatments, to be free from nausea/sickness and for his blood to stay strong, for infection to stay far from him, etc.
Also, please pray for an amazing family from the Dothan area, the Harrisons. Their sweet little girl passed into the arms of Jesus on Sunday morning. She had been battling brain cancer for about 2 ½ years. Her parents Jarrod and Marci reached out to me and John in our pain with advice, understanding, much love, and the best homemade red velvet cake I’ve ever had. They’ve been a blessing to us, and I ask that you pray for the Lord to give them what they need at this time. You can read their story at www.caringbridge.org/visit/hannahgraceharrison. As I stated through Facebook updates earlier today, Noah's MRI went really well, and pretty much as scheduled. We were very pleased with how quickly we moved from one day surgery waiting to MRI waiting and then to the clinic. Once in clinic we were sent directly to a room to wait for Dr. Reddy. Once she was able to see us she gave Noah his usual check-up and stated he looked great and she was pleased with the results of the scan. "The scan looks good," she said. "There were no changes from the last MRI." All the enhancements from the last scan were there, but none had changed, and that is what they are looking for. So that was good news. She still cannot say for sure what the "enhancements" are, especially since the brain tissue is so abnormal due to the enormous size of the tumor. There is of course still a large void where the tumor once was. He will have another MRI in 3 months and will continue that trend for the next year. Because there are 11 treatments left in this particular protocol of treatment, Dr. Reddy said it is reasonable to consider doing 4 more treatments, which would give Noah a full year of treatment. The other patient she has had with this same cancer did 10 treatments. John asked if it would be possible postpone that treatment for 3 months, and then re-asses after the next MRI. She also said that would be reasonable. Basically, she left the decision up to us. John asked her what decision she would make if it were her child, and she couldn't answer that question. "I don't know, I would have to be in your shoes," she said. So, to re-cap, John and I must decide within the next week whether to continue with 4 more chemo treatments, ending somewhere around January 2011, or take a 3 month break from chemo, then have another MRI to see how these "enhancements" have responded. There are risks involved with either decision. We will have to prayerfully weigh the pros and cons of each choice and come to an agreement...it's going to be tough. Fortunately, we have planned a vacation for the next week, so hopefully some time away will aid in the decision making process...we are taking Noah to Disney World and are super excited about it.
Even though we're left with a tough decision today has been an amazing day. The chemo is working, the tumor has not grown back, and because of the skill of so many (nurses, doctors, amazing neuro-surgeons and oncologists) our little guy is alive, happy, full of energy and ready to see Cinderella ( yes, much to John's dismay, Cinderella is the only Disney character he is familiar with, aside from Lightening McQueen and Mater, but I don't think they'll be walking around in costume). It's going to be a great week. Thank you so much for praying on behalf of our son and for your continued words of encouragement. I am about to ship the last of the t-shirt orders; these are local addresses so it shouldn't take long to get to ya...sorry about the delay. And we will definitely take lots of pictures and video at the Disney parks...it may take us a while to get them posted on the site, but we'll do our best. God bless everyone and have a great 4th!!! Noah so far is doing really well following his 6th chemo treatment. We went down to Birmingham on Tuesday afternoon so Noah could see the zoo once again. We were in the hospital from Wednesday through Friday morning. We expect his counts to drop in the next few days and a fever to hit him again, so we will more than likely be heading back to Children's towards the end of the week. Noah has an MRI scheduled for June 30th, and we should know that afternoon what the results are and if he will have to continue treatment. Please pray for a clear MRI! I will post when we have to go back to Birmingham. Tomorrow is the big day - Noah's MRI is scheduled for 7am, and we were told to arrive at 6am. Based on past experience, the actual scheduled time for the scan means nothing; we hope Noah doesn't have to wait for hours without eating or drinking as he has in the past.
We've had a good day: Noah had his port accessed in clinic today for general anesthesia in the morning, then we did some shopping and had a nice dinner. Even after a relaxing evening, I'm still really stressed and nervous about the scan. This is a really big deal, with one of three outcomes. 1. Noah has no residual tumor, the chemo has been effective and he will be declared in remission. 2. The spot that was found on his last MRI is still present and large enough to warrant more chemo treatments. 3. The spot that was found on his last MRI is present and growing, large enough to warrant another surgery and chemo treatments. Of course we are praying in faith that Noah is cancer free. Depending on the scan, Noah's neuro-oncologist and possibly his neuro-surgeon will read it to decide what our next step will be. After Noah's scan we will go back to the oncology clinic and wait for the results. I cannot promise that I will report through a blog tomorrow, but I will do my best. If anything I will report through Facebook since I can do that through my phone. I want to say thank you to all who are praying, and to Julie for organizing the prayer vigil at our church. I've already got some encouraging emails about those who have had special experiences in prayer for Noah. No matter what comes of this test, we will still continue to trust in the Lord to bring glory to Himself through this circumstance. Pray with us that this season of our son's suffering is about to come to a close. Love to you all. |
AuthorThese 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. Archives
August 2014
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