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