We disagree with the hospital's policy that makes parents leave their children in the PICU every few hours. Tonight at 10:00 pm we were asked to leave Noah while he was awake screaming and pleading us not to leave him. He was scared and very upset. He is in pain, has multiple IV's and hasn't eaten anything since 8:00PM yesterday. We walked out listening to him scream for us, pleading us not to leave him. There is no worse feeling I know of. It made me upset enough to post this.
If you would like to let the CEO know what you think of this policy you may send him an email at: The Children's Hospital of Alabama Mr. Wm. Michael Warren, Jr. Chief Executive Officer (205) 939-9896 mike.warren@chsys.org Nothing seems to change in this world until people rise up and voice their opinion. For the sake of the parents who will have to experience this after us until the new PICU is built, please voice your concern. *Update: Children's Hospital of Birmingham's PICU is now parent friendly! They have a brand new PICU with rooms that are private and can accommodate the patient and parents. We are so glad that parents no longer have to experience the added stress and frustration of being separated from their child during an already overwhelming time. Noah went in to the MRI room to begin the scanning process at 7:50. He made sure before hand that everyone knew he wanted either marshmallow or donut smell in his mask. :) He has been nervous all morning and very angry that this has to be done, but as soon as we arrived downstairs at MRI he was all smiles. They really take care of him, and us, down there and it was familiar to him. Before John took him back to the room, he gave me a hug and a kiss and said, "I love you, Mom, I will be safe in there." John and I have been praying for peace for him this morning, and it did my heart good to hear Noah say that. God has got him, and Jesus is with him. He will be taken directly from the MRI room to the OR. I will post again once he is moved for surgery. Thank you so much for praying and believing with us. ------------------------------------------------------------------------------------------------------- 9:38am - They just began the surgery, it took them a while to get him positioned. We will receive updates every hour to 1 1/2 hours. ------------------------------------------------------------------------------------------------------- 10:25am - So far so good!!! No one knows how long the procedure will be, last surgery was about 5 hours. So we will keep updating! Thanks for checking in on him. ------------------------------------------------------------------------------------------------------- 12:00pm - Everything is going well. ------------------------------------------------------------------------------------------------------- 2:30pm - It's done! Noah is in recovery, and unfortunately they will not let us see him for about 40 more minutes (last time we were allowed in recovery so this is very frustrating for us!) We spoke with the surgeon and he said everything went very well, the tumor he removed was about the size of a tennis ball. He opened part of the old incision and also made a new incision behind his left ear. He did remove several cm of brain that he believes to be non-functioning. As Noah was waking up he moved his left AND his right arms!!! He is also speaking, answering the nurse's question about pain, etc. *Insert huge sigh of relief here!!* We are anxiously waiting to see him now, and we will update more once we get to visit with him for a while and experience how he is doing for ourselves. Thank you all so much for praying for him today! ------------------------------------------------------------------------------------------------------- Evening update - Noah was moved to the PICU this afternoon around 4:00. The PICU at Children's is one very large room with many beds. Each bay has its own nurse and space for two chairs. We can stay with Noah most of the time, but must leave during routine procedures during the night. Currently, he is in and out of sleep. He has complained a lot of pain in his head and his IV line in his foot. He has been put on morphine and so far has not had any negative reactions to it. When he is awake it is apparent he isn't happy about being in the bed hooked up to all the tubes and leads connected to him. I can't blame him, I wouldn't be either. His surgeon came by and checked him out. He squeezed his fingers with both hands, raised up both arms high in the air, wiggled his legs around and was able to count the number of fingers he held up in front of him. Praise God for His goodness that Noah has not shown and negative effects of this surgery so far!! He has asked for Darth Vader's ship (a toy) and called his IV lines "stupid" - so we know his personality hasn't been altered. We will be in PICU for 24 hours at least then move on to a recovery room elsewhere. Hopefully they will take him to the 6th floor. Until then Jessica and I will be beside his bed as long as we can. God has once again answered our prayers. Our little hero has come through yet another dangerous surgery. We praise God for every person who had a part in today's events and are so very grateful for this hospital. We had so many encouraging words from so many of you and over 17,143 individuals visited this site today. I cannot express my gratitude to you who have kept up with Noah and lifted him up in prayer. This fight isn't over. We believe Gods plan for Noah's life is far from finished. "He who began a good work in you will carry it on to completion until the day of Christ Jesus." Phillipians 1:6 Pray with us that God will complete this work of healing and use Noah's life for His glory!! Pass it on - Pray for Noah If you love this sweet picture of Noah on the left, then scroll down for more! Thank you so much to Faith Blessing of Faith Blessing Photography (www.faithblessing.com) for squeezing us into her schedule and giving us one of the most precious and amazing gifts we could receive right now, memories of moments with Noah captured in such an artful and beautiful way. :) Update on the Crowes: John David is doing well in Gatlinburg along with the senior high youth and chaperones; they seem to be having a great time at the conference. I am feeling better, getting over this cold, but feeling the stress of packing and moving compounded by the thoughts of surgery coming up in 4 days. But - it will get done! I have family and local friends helping me to pack, move, and clean. If we get everything moved from our apartment to the new house by dinner time Monday I will be a happy woman. :) Noah is doing ok, he hasn't been nearly as active as usual and still complains of headaches. The steroid he is taking was helping with the headaches at first, but today the dose was scheduled to be lowered and he complained of more pain after that happened. So, he is back to the full dose of steroids and sleeps for about 4 hours during the day now (he's been asleep for about an hour as I write), off and on. Before his trip to the hopsital on Monday John and I talked with Noah about the surgery and what to expect. We showed him pictures from the last one and so he is I guess as ready as 3 year old can be for it. He told me today he was ready to go to the hospital so the doctor could help him; I encouraged him the headaches would go away soon after "the boo-boo comes out." I just hope I am right. Someone made a comment today about us taking on a lot right now, with the move and surgery and all. I got to thinking on that, wondering if I am crazy for doing it now, but I realized that I am really glad we are doing it now because it keeps my mind occupied and my hands busy. Especially with John not here, if I didn't have this huge task to accomplish I would probably always be on the verge of an anxiety attack, worrying about the outcome of this resection. I have been on the fence about this decision for a long time, solely because I am worried to death about something going wrong during the procedure and Noah not being "Noah" when it's all said and done. Honestly, I am more afraid of him losing his ability to do the things he loves the most more than I am afraid of him dying. (I know that sounds backwards and ridiculous, and I'm sure the comment would be "wouldn't you rather have him here and alive, even with handicaps than for him to die?" and of course, obviously, yes I want and deeply desire him to live - regardless. But my fear of his regrets of loosing so many things that are just, "Noah" has eaten at my heart for months. I can't imagine living without him, and I won't think on it...but I have imagined him living without be able to do things he loves to do, and that scares me.) It would kill me to not be able to watch him run, or jump on the couch, or hear him sing in his sweet toddler barely-on-key voice. For him not to be able to communicate with us or even let us know why he's angry at me would rip out my heart. I am so in love with who he is, every bit of him, even the faults and flaws, and I am praying so hard that all will be well. I don't often give myself the chance to "what if" and worry, because he is usually with me and my attention is on the present. But times like now when he is sleeping and my mind is wandering...these times are difficult and stressful. So I wrote it all down for you to share in my stress! Sorry about that, haha. :) But I know if you're still reading you are willing to bear this burden with us, right? I can't thank you enough for joining us in walking this road, and if only through reading and praying that is more than enough. We are scheduled to be at the hospital at 5:30 am on Tuesday. Noah will go to MRI and have his scan then he will be taken directly to the OR. I have no idea when the actually procedure will begin, but right now I will guess around 8am -very rough estimate! If you would like to pray specifically for Noah during his procedure, John and I will be posting very short updates as we know his progress while in the OR. In the past they have let us know when they begin, when they are getting close to closing up, and when they are stitching him up. We will do our best to post this website page link through Facebook when we get those calls from the OR, or have a family member do it for us if we are unable to. We need an uneventful surgery, all the tumor down to every last cell to be removed, Noah to retain all this movement and speech and vision and personality. We need God to guide the surgeons' hands, the anesthesiologists, the nurses, just everyone involved in the procedure. We need freedom from infection. We need Noah's blood pressure to remain at a safe level, and his blood loss to be as minimal as possible. We need a miracle healing from the Lord. God please use this procedure and these people that you have called and gifted to take care of sick children to heal Noah. He will do such great things for this world, and for You, if You would only give him that chance. He will be a man of integrity and leadership, like his dad. Noah will speak such a great witness because of what You will do in his life. He will be a man who follows You at any cost. I have prayed these things over him for almost 4 years and now is Your chance to show so many that You have heard their prayer, and Your answer is "YES." This answer of "YES" would be such a small thing for You, You who can just think a thought and it will come to pass. You who know every hair on every head, God You can just whisper the word and cancer will be gone. This would be such a small "YES" for You, but such a life-changing "YES" for me, for John, for Noah....and so many who love him and pray for him. We cry to You Father with everything we have for You to do this for us. We cast out anything that is not from You that is attacking Noah's body, we tell it that Jesus is Lord of Noah and nothing else. We say to this cancer to flee, and torment this child and his family NO MORE. Jesus You are his healer, and God You are his Father, and Spirit You are his comforter. We pray for healing, in whatever form it may come in. We pray for You will, Father. And we know that Your peace passes all understanding, and we ask for that as well. You are always good, no matter what circumstance we may be in. We may not understand Your ways, or Your love, but we know neither one of those fail. So to You be the glory in Noah's life, and may Your will be done. In Jesus' name. Amen, so be it. "Again I say to you that if two of you agree on earth concerning anything that they ask, it will be done for them by My Father in heaven. For where two or three are gathered together in My name, I am there in the midst of them” (Matthew 18:19-20). Dr. came by and said they will keep Noah for a while (24-48 hours), give him steroids and make sure he responds well. He wants to keep the plan for surgery on the 3rd unless Noah gets worse while on the steroids. But since we live so close I'm hopeful they will let us go sooner rather than later. Since his pressure levels weren't life threatening and the drainage pathways weren't blocked we should be able to wait on surgery.
This afternoon Noah is feeling much better; he has eaten breakfast and some lunch, and is understandably ready to go home. Hopefully he will continue to feel fine and his wish will come true soon! Keep praying! ------------------------------------------------------------------------------------------------------- The Dr. came in around 4:45pm and made the decision to let Noah go home! He will take steroids at home to keep the swelling down so he can make it to the January 3rd surgery date. In the midst of all the bad news of his situation this is a bit of good news, The symptoms of tumor expansion are not great enough to warrant surgery until the scheduled day. That is quite a relief for us. So we are waiting for his port to be disconnected and then its off to the house where we will hopefully have a good nights sleep. Thanks to all of you who checked in to his blog today and prayed for him. Noah is a fighter and a great patient. He is tougher than nails and braver than most when confronted with needles, tests and strangers who work at the hospital. We are thankful God has blessed him with courage and grit. Now that he is on steroids - that grit has all but turned him green, expended his muscles and made him look like Lou Ferrigno. That being said - pray for Jessica's and my patience : ) We are headed home to pack what we can for our move to the new house next week. Hopefully Noah can come home to a new house with a backyard and a comfortable place to recover. Thanks for praying & pass it on!! Noah had a great Christmas day. He slept late (8:30) and we had to wake him up to let him know it was Christmas morning. He enjoyed opening all of his presents and played with them all day.
This morning he woke up feeling pretty bad. He has symptoms of a cold and has been coughing all day. He began throwing up around 1:00 pm this afternoon. He never complains about headaches, so when he laid down and told us his head was hurting and wanted to sleep we knew there was a problem. This afternoon has been a series of long naps, waking up and throwing up and drifting back to sleep. He has been complaining of his head hurting all day. We wrestled with the decision to bring him to the hospital. We hoped the head ache and nausea were just symptoms of the common cold. But we also have very little room to take risks, so here we are. His condition warrants that any change needs to be examined. Currently, he is unusually tired. He hasn't ran around at all today or had the usual energy. Jessica hasn't had to tell him to stop jumping on the couch once, so something is wrong. The good news about it all is that we spent no time in the ER waiting room. He was triaged and immediately put in a room. As you can see by the picture - he is thrilled to be here : ( So - keep praying. We don't know the next step. As of 8:13 pm we haven't seen a doctor yet. We will post something when we can. Thanks for keeping up with Noah, Please spread the word. Pray for Noah JDC ------------------------------------------------------------------------------------------------------- ER UPDATE 10PM: We made a good call bringing him down to the hospital. The CT scan showed tumor growth and that is most likely what is causing the symptoms. We are being admitted. The staff will continue to monitor him until the surgery team decides what to do. Noah will be getting steroids to help the swelling in his brain. The good news in this situation is that he isn't going to the PICU, We are headed to the 6th floor. It's a better part of the hospital and Jessica and I will be able to sleep on pull out beds instead of a chair. So for now, Noah is is a good place in good hands. We will find out tomorrow what the surgery plan is. Thanks for praying - keep it up. Got a call from neurosurgery nurse today, and the scan showed the tumor has grown ½ cm, which is a definite cause for concern. Dr. W. wants to move the surgery to Jan. 3rd (which is the day he returns home from traveling out of town). If we see any symptoms present in Noah, or notice any change in his abilities, we will take him in for an emergency surgery….which we definitely don’t want. All of the other neurosurgeons are booked for next week, so an emergency surgery for Noah would mean that he would be worked in around other planned surgeries, with a surgeon that has never operated on him before. I have total confidence in all of Dr. W.’s colleagues, but I do find comfort in the fact the Dr. W. has operated on Noah twice before with amazing outcomes, and I would so prefer that he do this third surgery as well.
John David has had a youth trip planned for months; he leaves December 29th and returns the 31st. We have decided that he will go on this trip in a separate vehicle, just in case anything develops while he is in Gatlinburg, TN…but we are trusting that God will keep Noah stable until January 3rd. We have secured a new place to rent, and were planning to move the first week of January if all works out with the real estate group and the owner of the home (we wanted to get settled in at the new home before his surgery on January 10th) so now we have a new challenge there and will have to move after Noah’s surgery. Prayer requests: Pray that Noah will not develop any symptoms or have any change in his abilities (walking, talking, clumsiness, vision, etc.). Pray that John David and his senior high youth group will have an amazing, spirit filled, life changing trip to the conference in Gatlinburg, and that John will not have to return home before it is over. It’s important to us that he spends that time with these awesome young people, and is there to help guide them and pray with them, etc. (That means REALLY pray for the first request - that Noah will be stable until Jan. 3rd!!!) Pray that Dr. W. and his family have a wonderful, restful trip; he, along with so many other physicians, sacrifices so much to take care of sick children and I ask God to give him amazing quality time with his family, and especially his own children. Also, pray for our new rental home, that the logistics will all work out with that and we can make a comfortable home for Noah as he recovers from the procedure. I have more requests regarding surgery, but I will post those later as I have to make this short. I just wanted everyone to know what we are facing now. I’m very shaken by this news, even though I have known the reality of what Noah is facing….it hurts so much to hear that he could possibly not make it 2 ½ weeks. We are still believing for a miracle. Thank you for loving my son! We love and appreciate all of you that read these updates and pray. God bless you all and have a wonderful, merry Christmas. Make it the best one yet, and show your children how much you love them, no matter how old they may be. Love you all! This morning Noah arrived at Children's Hospital south to have his scheduled CT scan. He did very well. He was sedated during the scan so he could stay still. He woke up a bit wobbly but hungry. We have not heard how the scan turned out yet. We have been waiting for a phone call all day from his neurosurgeon's nurse. At this point, we consider no news good news. If the scan indicated that it was time for Noah to have surgery now, we would have received a call to pack our things and come check in.
It is a huge relief that we get to celebrate Christmas and the new years holiday at home. This should be a pretty good Christmas. Playing the part of Santa, Jessica and I have gotten him two bikes. One that has pedals (and training wheels) and one that has a motor and is battery powered (in case after surgery he has trouble with pedals). Either way he will get what he is asking for - a new bike. So unless we hear something different tomorrow, it looks like January 9th we will check into the hospital and prepare for surgery # 3 on the 10th. Over 3,800 of you visited this site today. We are getting some of the most encouraging emails from strangers, words of love and strength from our friends on Facebook and even meeting people who know about Noah for the first time in restaurants. Folks all over are praying for him and we are so very humbled. Cards from all over have come to our house to encourage Noah and some of you have surprised us with early christmas presents for him at our apartment. God is strengthening us through you. Thank you for your gift of love - your prayers for Noah. A greater gift could not be given. Pass it on Pray for Noah December started off with a huge bang for our family. Our Trip to Orlando was such a blessing. Noah wanted to stay there 'all the time'. He told us every day at every park. We want to thank all of you who helped make this trip a possibility. He really had a great time full of laughs, smiles, great food, fun rides and plenty of new toys!
We haven't posted a new bog since getting back and apologize to all of you who have checked in regularly. We needed some time to make some important decisions concerning Noah's treatment. On the way back from Florida, Jessica and I had a very long talk about what we wanted to do. We discussed every painful option and their potential consequences. We decided that as long as there was even a 1% chance something would work, it was worth trying. Some parents don't get the 1% chance, we feel fortunate we have it. We called his neurosurgeon that day on the drive back and set a date for the surgery for December 21st. A few days later, Jessica received a call from his nurse informing us that since there were such big risks involved in this surgery, he wanted to postpone it until after Christmas. He wanted us to have the holiday with Noah and try to enjoy it. This shook us up a bit. We wrestle with the fear that this is the last Christmas we will have with him. We met today with his neurosurgeon, Dr. John Wellons at Children's hospital to discuss everything about the surgery option. Noah has already been through two very serious brain surgeries to remove this tumor. From what we have been told by our doctors - this is the last option he has. The tumor attacking Noah is best treated by complete resection. In this surgery, his doctor will not only remove the tumor he can see, he will also cut into the good brain tissue that is underneath and surrounding, tissue that could very well control Noah's functions of speech and movement on the right side of his body. There is a small chance of morbidity - the loss of control of key organs which will hasten death and a chance of stroke or worse. The chance this surgery will get every last cancer cell is very small - but it is still a chance. Because Noah has already been through two surgeries and can still walk and talk, his doctor believes his brain has compensated for the damage the tumor has caused and he feels strongly that his motor and speech functions are on the right side of his brain. He is optimistic and we are very hopeful that this surgery will not change him in any way. Due to the rapid growth of the tumor, we are unsure how much time we have. Noah will have a CT Scan early tomorrow morning (Dec. 20th). Noah currently is scheduled for surgery on January 10th. The CT Scan will show us if he can make it until then. If the scan shows that the tumor is too large and Noah is out of time, we are going into the hospital tomorrow for prep and will have the surgery Wednesday (Dec. 21st). If there is still some room for the tumor to grow, Noah will stay home for Christmas & we will wait until January 9th to be admitted, have a MRI and prep for surgery on the 10th. Jessica and I are trying our best to be strong, to find the joy in life - in the blessing of the moment we are in right now. We are not sure how this is going to turn out. We haven't lost our hope yet, We know that with God all things are possible. He ultimately is Noah's great physician - Noah is in good hands. Please continue to pray for a miracle. Honestly, I didn't think our story would get this far. I hoped the pathology report would come back benign. I hoped every MRI would show no growth, I hoped every surgery & radiation and every drop of chemo would do something to put an end to this horrible monster called cancer. I have some hope left that God still waits until man cannot be credited with any success. He did it at the Red sea, Gideon's army, the wall of Jericho, the woman with the issue of blood, the Centurion's servant, Jairus daughter and dead Lazarus. He can do it for a three year old boy that doctors have said will not make it. Pass it on Pray for Noah Noah has had a great week at Disney world! He has laughed a lot, played a lot and ridden every fast ride they will let him on. He is barely 40 inches tall so we have been able to get on some pretty good rides. So far, his favorite is the mountain train roller coaster at the Magic Kingdom. We have ridden it the most. On some of the bigger rides, he has tried the 'stand on tip toes' trick to make his head hit the 48' inch sign. Yesterday at animal kingdom, he grabbed the top of the measure post and pulled himself up where his head hit the spot. We had to laugh. He loves being down here. He has asked if we can stay here all the time. I love the fact he is happy. Today we are getting to stay after the park closes for the extended Christmas party and parade. I can't wait to sees the look on his face during tonights party. I will try to post some pictures. We would like to thank everyone who helped make this trip possible for us. Noah has spent the week with both grandmothers, his cousins and aunt and uncle. He has a small suitcase loaded with new toys and even some fun hats. We have eaten very well (way too much) and been pretty spoiled. It has been great to hear him laugh and see him smile. We are waiting to hear a time we can meet again with the neurosurgeon when we get back. We still haven't landed on a decision and to be honest, I haven't wanted to think about any part of that down here. Once we are back at home a very tough decision must be made. But for now, we are gearing up for the big Mickey Christmas party tonight & dinner with Winnie the pooh, then tomorrow we wrap it all up with supper with Cinderella. He is an excited boy. Thanks for keeping up with us! Please continue to pray for Noah. Below is a video of Noah and me on Disney's fastest ride, the test track at Epcot. They say it gets up to 60 mph. His laugh and smile say it all - Noah loves it!! (P.S. the woman screaming in the background is not Jessica!) We are back home, Noah and John are watching Star Wars (again). It’s been a long day of waiting, wondering, praying, and remembering (2 years ago today a CT scan at Huntsville Hospital revealed Noah’s tumor). John described our situation last night briefly in his post, so I will pick up where he left off. This morning we awoke ready for Noah’s MRI and ended up waiting until about 10:30 for him to actually have the scan. When it was confirmed that his symptoms were a result of pressure from the growing tumor I was a little surprised. I honestly did not think that it would begin to have an affect on him this soon. Noah slept for a while after the scan, we ate lunch, and waited for a while longer. We had a few visitors to help us pass the time. When his neurosurgeon was able to come speak with us, I realized how anxious I was to hear what he had to say. In his always calm and collected way, he gently but matter-of-factly told us what I had (regretfully) expected to hear. He said that it is reasonable to go ahead with the surgery, it would be basically the same as before, but this time he would remove the normal tissue (which is more than likely not functioning) surrounding the tumor as well. Based on his history, we could maybe expect the tumor to come back within 3 months, though no one can really judge how effective the surgery would be. There is also a risk of morbidity; he could very well lose motor control and continue to decline. Obviously, without surgery, that risk becomes fact…it would only be a much shorter time that he would begin to decline and eventually pass away. So the surgery would buy us some time, though we are unsure of how much time. John and I have been divided on the surgery option for a while, and we haven’t yet discussed the consultation with Dr. Wellons. This is such an extremely hard decision to make, and we can’t be leisurely about coming to an agreement. We are both praying for peace and wisdom from the Lord, and we ask that you pray with us that God will guide us to a solid decision, one that we will look back on and not have regrets about. His quality of life will be a major factor in our decision, and right now he is still doing very well, despite the scare we had yesterday. We are still leaving for our Disney trip this weekend, and if we do proceed with the surgery it will be sometime the week after we return. We also ask that you pray for his physical ability to not be hindered next week so he can have the most enjoyable experience at Disney World as possible. We have several super fun events planned for him, and we want him to have an amazing time with his family. I can’t speak for John in this, but today I have felt very weak, physically and emotionally, and I find my peace and joy being tested. I told our hospital chaplain this morning that I was doing my best to push all sadness and grief aside because all I have is this moment and I don’t want to miss or regret anything that I could experience with Noah. But after loss of sleep, waiting, bad news, and pressure to make one of the most important decisions I’ve ever had to be a part of making, I feel just plain beat up and that leaves my heart not quite as guarded as I need it to be. So, I’m still claiming for our family Philippians 4:6-7 that “the peace of God which transcends all understanding will guard your hearts and minds in Christ Jesus.” Even in my sadness today, I was able to give thanks to God. Noah was in the hallway outside of our room running as best he could, infectiously laughing, and giving out hugs (which looked more like full-body tackles) while another child pushed his walker in order to get a few laps in, a mom held her infant in a doorway with IV lines dangling as she tried to comfort her child, and behind closed doors in dark rooms other children tried to sleep, while still others didn’t have the ability to even get out and roam the halls. As we approach the Thanksgiving season, I’m often tempted to be reminded first of all the hurt my family has experienced surrounding this holiday: deaths, diagnoses, surgeries, etc. but no matter how bad a day may be I believe we can always find something good in that day - if only in the grace and forgiveness of Jesus Christ then that should be enough for us. I will have to remind myself of that truth again this Thanksgiving; we have so very much to rejoice in and praise God for, and we will live in today and make the most of it! Thank you all for praying for us, for Noah, and I hope everyone has a wonderful Thanksgiving holiday! Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus (1 Thessalonians 5:16-18). Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you (Philippians 4:4-9). The last few days have been a little discouraging for us. We noticed Wednesday of last week that Noah's legs were not as fast as usual. He couldn't run full speed and developed a limp. We started to get concerned. This is how we first began seeing effects of the tumor two years ago. Today began like any normal Sunday. We went to church, Noah went to class and had a good time, ate lunch with friends and came home.
He began throwing up around 2:30pm and didn't stop for an hour. Jessica laid him down for a nap around 3:30pm. He has gotten out of the habit of taking naps, so we knew something was wrong. He was still asleep at 6:30pm. Jessica tried to wake him but he would not wake up. She called his nurse who advised us to get him to Children's hospital. By 7 he was still not responding. She placed him in the van and we started down the road. He woke up in the van and began asking for food, which was a good sign. Once at the hospital he ate a few pieces of chicken but soon fell back asleep where he wouldn't wake up. He is being admitted tonight and is being scheduled for an MRI in the morning. We have an appointment with his Neuro surgeon in the morning. The new image from the MRI should give us a clear picture of what's going on and what we should do. We desperately need wisdom. Thank you for praying for Noah. Spread the word. I feel like I need to make an addendum to the last blog. If you haven't read my post from Tuesday, I wrote "My primary role for the past 3 ¾ years has been to love, nurture, protect, and care for him (Noah) to the best of my ability. With that taken away, I will enter a completely new season, my roles will shift (with no other children, I will obviously no longer be a mother) and I will face something completely different and that’s frightening." Most comments I've received have reassured me that I will always be a mother, and I do agree with that. But what I was referring to in my statement was my "role" as a mother. With no other children in our family, that role would change to something else. I wouldn't have anyone to "mother" anymore, and that would be an extremely difficult change for me. I decided I should expand on that comment a little more in hopes it will be interpreted the way I intended it. Thanks for all the encouragement you all have given me since the last post; I really didn't expect all the responses I received and I'm very humbled that God would use my writing to encourage others or remind them of the importance of trusting Him.
We have a meeting with Noah's surgeon on Monday afternoon, so I will update again once John and I decided what we are doing with that situation. Hope everyone has a great Sunday! "Now faith is confidence in what we hope for and assurance about what we do not see" (Hebrews 11:1). The steroids have helped to get rid of Noah's rash, but they have in no way helped his personality or already short fuse. He has been re-named the little Hulk. He finished his last dose today and he has pretty much gone back to being just a strong-willed child. (A strong-willed child on steroids is a tough match I would think for even the most seasoned of disciplinarians!) He spent the weekend visiting with his Grammy, aunts, uncles, cousins, and friends, and Mimi came down for a visit Saturday night. Many of us have loved him through his irritated comments and angry tirades last weekend. :) This boy will tell you to "Stop talking to me!" one minute and run to give you a kiss and tell you he loves you the next. He has always fought with everything he has and loved with even more. I know, as his mother, you expect me to believe he is wonderful. But beyond my relationship to him and my deep love for him, there is something so special that I would hope others could recognize...a God-given sweet spirit that loves Jesus already, that has compassion for others. There is slight glimmer in his eyes that tells me, "I'm going to do great things." I've written this story a while back (humble me if you've already read this), but when Noah was born I began praying a specific prayer over him most nights as he slept: "God grow this child to be a mighty man of Yours, a man who will follow you at no cost, who leads many to Your Kingdom, who will be a righteous man in an unrighteous generation. This is Your child that You have loaned to me and John, and He will be used for Your glory." I believe that to this day God is answering my prayer and unraveling His plan for Noah's life. This young man has an army of evil against him, but we will not cease praying for His power and goodness to overcome the evil of this world. Right now that evil is in the form of cancer. Tomorrow it could take another form. We don't know what tomorrow will bring forth, but we do know that we stand on Jesus the solid Rock, with a Holy Spirit that intercedes for us with groanings that we cannot understand, but that the Father does. When you are out of words to pray for my son - which I find myself in this position often, because I am asking constantly for healing - ask the Holy Spirit to pray for you. Please don't give up storming the heavens with prayers for Noah. There are some of you who are reading that believe the medical reality that Noah cannot survive because there are no medical means that can save him. There are some of you who are reading that believe that God will heal Noah if enough people have faith as small as a mustard seed to move this mountain that is brain cancer. I must fall somewhere in the middle at the moment...I believe with everything that I am that God is all powerful, all knowing, and has the ability to just think the thought that Noah will have earthly healing and it will be. No matter how I am tempted to doubt with my mind, my heart has always been full of faith in God’s ability and power. My fear for the past two years has been: if God chooses not to intervene, will I still have faith in His plan and His will for our lives. Now that I am so very close to dealing with this situation, I can honestly say that I am filled with a peace that passes all understanding, and that my heart and mind are definitely guarded from any attack by anything unholy or untruthful (I understand that this will be a daily battle). There are so many theologies and opinions out there, and many are being tossed our way. What we find truth in, we store up in our heart; what we discern as hurtful/ignorant, we disregard as good intention. Right now, I know that my desire for Noah to be healed on earth is a purely selfish motive - I need him here. My primary role for the past 3 ¾ years has been to love, nurture, protect, and care for him to the best of my ability. With that taken away, I will enter a completely new season, my roles will shift (with no other children, I will obviously no longer be a mother) and I will face something completely different and that’s frightening. Noah has been through so much in his short lifetime. He has always looked like a normal healthy boy (with exception his bald period and monstrous scar), and I have often wondered if people understand how much children with cancer have to endure. In his experience alone: Brain surgeries, drains, steroids, PICU isolation without parents, loss of peripheral vision, port accesses, hours/days of chemotherapy drugs through IV, days upon days of chemotherapy side affects (vomiting, diarrhea, lack of appetite, metal taste in his mouth, no immune system, isolation because of potential for infection, toxic urine requiring anyone changing diapers to wear gloves, sores in his mouth, blood and platelet infusions, drug reactions, hair loss, potential for hearing/vision loss, potential to develop other types of cancer as a result of the drugs, weakness/fatigue, daily GMCSF shots in an attempt to boost white cell count), radiation (daily sedation, hair loss, loss of executive function, potential for long term IQ loss), very long and tiring clinic visits, very long (even extensive) hospital admissions during neutropenic states, lots of time spent in a car seat driving back and forth to the hospital, loss of a normal childhood…..this isn’t even all of it. There are things we have all experienced that have been blocked from my memory. I read other blogs from cancer parents and think, oh yeah, we did that…that was horrible. And there are children we see every time we visit Children’s that have been through and are still going through SO MUCH MORE. Children who have lost mobility due to surgeries or treatments; we are blessed that Noah can run. Children who aren’t able to speak or have major speech delay; we are blessed that Noah rarely stops talking. Children who have not had nearly the quality of life that Noah has….for these things we are blessed. For the past 2 years WE’VE BEEN BLESSED, and so very thankful to God for Noah's abilities. If the day comes that we have to say goodbye to this dear sweet and precious child of God, we will not ask God, “why did you not give us a miracle?” because the past 2 years have been nothing else but a miracle. Yes, he has suffered a great deal. He holds up well, and you would never know what he has been through at first glance. But he has fought very hard, and very well with very little complaint. And for him to be completely healed and whole, though not with me and John, will hurt us more than words can describe and at the same time give us peace beyond understanding. It is a very hard thing to watch your child suffer so, and have no control over his pain and sickness. I had not planned to bring up this subject, but please know that I want you to continue praying for Noah’s earthly healing, as I said earlier, pleading with God to grant Noah a long and healthy life on this earth, doing His will here and helping to grow God’s Kingdom. But know that sometimes God says no to our prayers, and that does not make Him mean, as Noah often says of me when I tell him no, and that does not make God unloving, because just as you want to give good gifts to your children and make them happy, you cannot say “yes” to every request they have of you, because you can see farther ahead then they can. We as children of God cannot understand his ways because we can’t see ahead, and we wouldn’t understand even if gave us His reasons. Have you ever tried to reason with your child? :) I love this little boy in a way that I love no one else; it will never die, it will never fade, but only grow. And Jesus loves Noah immeasurably more. In that, I find my comfort. Noah has at several times come to John and myself (unprompted/unprovoked) to say, “I’m going to live with Jesus.” We smile and say, “one day we all will (when we love and follow Him) Noah, but right now we’d like you to stay with us here.” These days have difficult moments, but overall they are sweet and wonderful, and we are trying to make the most of each minute, and make memories along the way. Memories that “will last us the rest of our lives.” Thank you for sharing in this difficult, winding road we have been traveling and please know we love you all for all you have done for us. I hope you can take away something positive and encouraging from this post; I just wrote what was on my heart and I am trusting God it needed to be written. The song I posted below has reminded me to rest and trust in Him. Noah began to develop what looked like a rash yesterday; I noticed it around lunch time and called his nurse. Overnight the rash spread all over his body and became increasingly worse. We were able to meet with his doctor and nurse this morning, and they immedietly decided it was an allergic reaction to the drug he was taking. Needless to say, he is not going to be taking the drug anymore and will be removed from the study. He is taking steroids that will hopefully get rid of the "rash" that is covering his body and making him pretty uncomfortable (he is itching and when he scratches the bumps they open up and begin to look like "whelps"). They have yet to see this response to the drug, and this would not be considered a side effect since it is an allergic reaction. We are just glad it didn't affect his breathing, and the Dr. was able to see him in time. So - now we are back to square one. One option down, three to go...we are hopefully meeting with his surgeon sometime soon to get his opinion on a third surgery. We have not wanted to go this route, since after each surgery the tumor has continued to grow. There are so many risks with brain surgery, and we don't feel comfortable allowing Noah to go through it once more if the tumor is going to come back again in 3 months (which it did after the last surgery). But we want his surgeon's opinion before we close the door on it. Chemotheraphy is out of the question - too many side affects with very little, if any affect on the growth. Maximum dose of radiation has been given already. Doing nothing - well, it's just not even an option for us right now if we can help it. So we are still praying for guidance, wisdom, discernment, and most of all healing. Please join us as we pray, and ask others to pray with us...please. It’s been a good weekend for the Crowes. Noah began Friday with a short visit to the doctor to have his blood tested and then have his port de-accessed. He is always very brave in these situations. Getting his port de-accessed is a little uncomfortable for him due to the adhesive that holds the tegaderm bandage over his “noodle”. But as always he toughened up through the process and we were out the door. After a quick stop to drop one Grandmother off and pick the other up in Athens we headed to Memphis Tn. for the Yo Gabba Gabba live show at the Orpheum theatre on Beale street. If you are not familiar with the Yo Gabba Gabba show, just know its Noah’s favorite show. He had a great time. We stayed the night in Memphis and woke to eat breakfast with Jessica’s aunt and uncle, Kerry & Erik Eliason and then headed to the zoo. Noah loved the playground and the petting zoo with the chickens, goats, pigs, cows & ducks. He also had a good time watching all the monkeys playing in their areas. It was a good day to be at the zoo. We parted ways with Kerry & Erik and met up with my cousin George Welty, his wife Dana and son Brenan. We had lunch at a very unique diner called The Caritas Village. I encourage you to check out the web site and be inspired. We had a great visit and lunch and were back on the road toward home. Noah has handled the new treatment well so far. There are a few things going on that may be side effects. His stomach is more upset than usual and his skin is dry and itchy. We are very proud of his ability to swallow pills and go without breakfast until 11:00 am on the days he takes it at the hospital. His nurse Julia is a very sweet lady. We can see her genuine care for him in the way she treats him. It is very comforting. Noah has an MRI on November 28th. This will mark Noah’s two-year battle with cancer. We are praying the scan shows this new medicine can stop the tumor. Please pray with us. Some very generous friends have given us lodging for a trip to Orlando Florida November 29th – December 5th. Thank you to everyone who has offered us help in this area. We have been so humbled by the offers sent to us. Noah’s oncologist Dr. Reddy has told us she doesn’t think Noah will be hindered in any way on this trip. Conversations like this pull us into the reality of Noah’s situation. We are trying to make the most of every opportunity we have with him. We encourage you to do the same with your family. Please continue to pray for Noah to be healed, that his life would fulfill the purpose God intends and for him and for me and Jessica. Spread the word … Pray for Noah. |
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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