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!
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
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!)
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.