Pray for Noah

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Here is the link to Noah's youtube videos:

http://www.youtube.com/profile?user=hvnbnd182#g/u

We got great news this morning. One of Noah's doctors came into his room around eight a.m. and told us we would be able to come home today. Not because he is any better, but out of compassion for him. He hasn't had a fever in seven days and his blood is clear of any infection. His neutrophile count is still very very low. Noah currently has .017% of an active immune system - which is better than what he had yesterday. They didn't want to see him in a hospital room any more than we wanted to be there. They let us leave on some strict conditions - continually monitor for fever, no crowds, no playing with the dog, no going around barefoot, etc...  


We are glad to be home - Jessica more than anyone. Noah at least has had a bed for the last week. Jessica has slept on a fold out chair. She is a very tough woman - the toughest I know of any way. She will enjoy her own mattress and pillow for at least a few days. Noah is scheduled to have Chemo # 8 in nine days. It's not a long break, but at least we get one. Noah has ran from room to room all night. The first thing he did when we got home was run to his room and throw every one of his toys on the floor. Typical boy! He beat his drums, played mom's guitar and sang his own made up songs for us, jumped on all the furniture  and got into everything he isn't supposed to. I think he is glad to be here. Currently he is laying on my pillow in my bed and we are in a debate about where he is going to sleep. I  am bigger than he is which renders his argument invalid. As soon as I finish typing this I will enter the ring and wrestle this little boy into his room and his own bed which is so much better than doing it in a hospital room trying to get him into a hospital crib. I never thought I would be glad about having this fight, but tonight I am thrilled to get the opportunity. 


This last week has been very hard. Thanks for all the prayers and support. We know that God has surrounded us with amazing friends - some of whom we have never met. 


I want to share a quick story about an act of kindness shown to me I hope I never forget. On the way to Birmingham Wednesday night, my goal was to make it to Chick-fil-a before they closed at 9:00 p.m. I led worship at Friendship that night and was on the road by 7:45. I did not make it in time. I pulled into the parking lot at 9:06 p.m. The parking lot lights were off and the dinning area had chairs on top of tables. As I drove though the lot I saw people cleaning up and pulled into a parking space. I am a pretty stubborn person - many of you know that - I was determined to get some chicken. 


Noah will not eat much hospital food. His favorite food is Chicken nuggets made by - guess who? I walked up to the window and looked in just at the right time to see a manager walk by. I banged on the glass and got his attention. I waved him over to the locked door. He opened up and asked if he could help me. I explained my problem. I have a sick boy who isn't eating well and if i could just get him some chicken it would make things better - if for just a moment. I told him I knew they were closed and I would be glad to pay whatever I had to to get it. He told me to wait at the door and walked away. He came back with a small bag. There were no nuggets left, no strips and no sandwiches at all, but he handed me a small bag with one hot fillet - just for Noah. He didn't charge me but just smiled and told me he hoped Noah was better soon.


Twenty minutes later I watched my son eat that chicken breast with a big smile on his face. It was one big nugget! To see him eat anything on his own gives me great pleasure. I know that manager didn't have to open the door or even talk to me. He certainly didn't have to give me anything. It may seem like a small thing to most people - but to me it was an amazing act of kindness I will not forget. You never know what your act of kindness can do for someone else. It may seem like something small to you, but for someone else it could mean the world.


So If you ever find yourself at the Chick-fil-A in Fultondale Alabama at the Walkers Chapel road exit, tell the manager you wish more people in the world were like him - I certainly do. 


Please keep praying for Noah. Pray for healing and strength. Pray for a cure


John

On Saturday August 14th, Noah began running a fever. By nine o’clock that night it was high enough that he had to go to the hospital. We loaded him in the van and Jessica and our good friend Rachel Quinn made the drive down to children’s hospital. Around three o’clock that morning he made it to a room. Since then, his ANC count has stayed at zero. The ANC count shows how strong his immune system is. When it is at zero, his body has little to no white blood cells. At this point he is in the room without a fever. He gets antibiotics every day and platelets when he needs them.  When his body begins making white cells again and gets stronger he should be able to come home.

Chemo is hard. It is hard on his body and his emotions but he is handling it well. He was telling Jessica last night how he wanted to go home. He was telling her all the things he wanted to see - his tractor, his puppy, his room and his toys. She told him he would be able to see them when we get to go home. At that point he looked at her and said, “all done” which is his way of saying, “lets go home!”

Please pray for his body to bounce back and be able to come home soon. Thank you for your continued encouragement and prayers.

 

John

We have a tough little boy. Sometimes I am just amazed at how Noah handles some situations. Because we are again going through chemo, we must give him a shot every night to help boost his white blood cell count. Jessica was preparing the syringe and asked Noah "Where do you want to get the shot tonight?" Noah was lying in the bed beside me and pointed to his left arm. He usually gets his shot in his leg. We were a little nervous about how he would react to the needle. If he wiggles at all once it is in it could cause him more pain. She asked him again and he pointed at the same arm. As she prepped the spot with an alcohol swab he started pointing to his leg and saying "shot, shot" but it was too late.

Normally, a two year old would fight and cry and be terrified of needles. ( no wait, that sounds like me) but Noah patiently sat there and watched Jessica inject the needle and slowly push the medicine in. He didn't even flinch. Not even a whimper.

I hate the fact that he has gotten used to being pricked and poked every day. I hate the fact that he understands what it means to have blood work done. I hate the fact that this is the normal in his life.

But I love the fact that he is one of the toughest kids I have ever met. I love the fact that God has given him courage and a tolerance for pain beyond what I understand. I love the fact that he is a fighter.

Below is a video I took the day we started back chemo treatments. Noah has a deppo port in his chest. It allows the hospital staff to give him whatever he needs without putting an IV in his arm or leg. Blood is drawn from the port, He gets antibiotics and chemo through the port. The needle to access it is 3/4 of an inch long. 

If I were having a needle that long shoved into my chest I would sweat blood. (I hate needles) But Noah just watches it go in without even flinching. He is such an inspiration to me. Watch this video and see what I mean. 

My request for prayer tonight is that God would grant Noah even more courage and strength, that in the coming months God would use this horrible situation for something good - in his life and others as well. 

Jessica and I have met  and talked to so many people who know about and pray for Noah. It humbles me every time I am asked by a stranger "are you Noah's dad?" To know that so many people who have never even met Noah  kneel before the Father on his behalf  is completely overwhelming.   Thank you - and please don't stop. 


John David

We are on our way to Birmingham to begin Noah’s 7th chemo treatment (of 10).  We have had a great break from this sickness, with our trip to Disney World, and the Chattanooga Aquarium, play dates with friends, etc. and have been spoiled with a “normal” life for the past few months. Emotionally this treatment has been hard for me to swallow.  I don’t want to start this process again, but who would? I’m not sure how long these next 4 treatments will last, but I’m guessing about 5 months based on past experience.  Please pray for Noah just as you have during his previous treatments, to be free from nausea/sickness and for his blood to stay strong, for infection to stay far from him, etc.

Also, please pray for an amazing family from the Dothan area, the Harrisons.  Their sweet little girl passed into the arms of Jesus on Sunday morning.  She had been battling brain cancer for about 2 ½ years.  Her parents Jarrod and Marci reached out to me and John in our pain with advice, understanding, much love, and the best homemade red velvet cake I’ve ever had. J They’ve been a blessing to us, and I ask that you pray for the Lord to give them what they need at this time.  You can read their story at www.caringbridge.org/visit/hannahgraceharrison.  

As I stated through Facebook updates earlier today, Noah's MRI went really well, and pretty much as scheduled. We were very pleased with how quickly we moved from one day surgery waiting to MRI waiting and then to the clinic. Once in clinic we were sent directly to a room to wait for Dr. Reddy. Once she was able to see us she gave Noah his usual check-up and stated he looked great and she was pleased with the results of the scan. "The scan looks good," she said. "There were no changes from the last MRI." All the enhancements from the last scan were there, but none had changed, and that is what they are looking for. So that was good news. She still cannot say for sure what the "enhancements" are, especially since the brain tissue is so abnormal due to the enormous size of the tumor. There is of course still a large void where the tumor once was. He will have another MRI in 3 months and will continue that trend for the next year. Because there are 11 treatments left in this particular protocol of treatment, Dr. Reddy said it is reasonable to consider doing 4 more treatments, which would give Noah a full year of treatment. The other patient she has had with this same cancer did 10 treatments. John asked if it would be possible postpone that treatment for 3 months, and then re-asses after the next MRI. She also said that would be reasonable. Basically, she left the decision up to us. John asked her what decision she would make if it were her child, and she couldn't answer that question. "I don't know, I would have to be in your shoes," she said. So, to re-cap, John and I must decide within the next week whether to continue with 4 more chemo treatments, ending somewhere around January 2011, or take a 3 month break from chemo, then have another MRI to see how these "enhancements" have responded. There are risks involved with either decision. We will have to prayerfully weigh the pros and cons of each choice and come to an agreement...it's going to be tough. Fortunately, we have planned a vacation for the next week, so hopefully some time away will aid in the decision making process...we are taking Noah to Disney World and are super excited about it.
Even though we're left with a tough decision today has been an amazing day. The chemo is working, the tumor has not grown back, and because of the skill of so many (nurses, doctors, amazing neuro-surgeons and oncologists) our little guy is alive, happy, full of energy and ready to see Cinderella ( yes, much to John's dismay, Cinderella is the only Disney character he is familiar with, aside from Lightening McQueen and Mater, but I don't think they'll be walking around in costume). It's going to be a great week. Thank you so much for praying on behalf of our son and for your continued words of encouragement.
I am about to ship the last of the t-shirt orders; these are local addresses so it shouldn't take long to get to ya...sorry about the delay.
And we will definitely take lots of pictures and video at the Disney parks...it may take us a while to get them posted on the site, but we'll do our best. God bless everyone and have a great 4th!!!

Tomorrow is the big day - Noah's MRI is scheduled for 7am, and we were told to arrive at 6am. Based on past experience, the actual scheduled time for the scan means nothing; we hope Noah doesn't have to wait for hours without eating or drinking as he has in the past. 
We've had a good day: Noah had his port accessed in clinic today for general anesthesia in the morning, then we did some shopping and had a nice dinner. Even after a relaxing evening, I'm still really stressed and nervous about the scan. This is a really big deal, with one of three outcomes. 1. Noah has no residual tumor, the chemo has been effective and he will be declared in remission. 2. The spot that was found on his last MRI is still present and large enough to warrant more chemo treatments. 3. The spot that was found on his last MRI is present and growing, large enough to warrant another surgery and chemo treatments. Of course we are praying in faith that Noah is cancer free. Depending on the scan, Noah's neuro-oncologist and possibly his neuro-surgeon will read it to decide what our next step will be. 
After Noah's scan we will go back to the oncology clinic and wait for the results. I cannot promise that I will report through a blog tomorrow, but I will do my best. If anything I will report through facebook since I can do that through my phone. I want to say thank you to all who are praying, and to Julie for organizing the prayer vigil at our church. I've already got some encouraging emails about those who have had special experiences in prayer for Noah. No matter what comes of this test, we will still continue to trust in the Lord to bring glory to Himself through this circumstance. Pray with us that this season of our son's suffering is about to come to a close. Love to you all.

Noah so far is doing really well following his 6th chemo treatment. We went down to Birmingham on Tuesday afternoon so Noah could see the zoo once again. We were in the hospital from Wednesday through Friday morning. We expect his counts to drop in the next few days and a fever to hit him again, so we will more than likely be heading back to Children's towards the end of the week. Noah has an MRI scheduled for June 30th, and we should know that afternoon what the results are and if he will have to continue treatment. Please pray for a clear MRI! I will post when we have to go back to Birmingham.

Well, we had our clinic visit this morning in Birmingham, got Noah’s port accessed, and realized when his labs came back his ANC had dropped considerably. Because of this, Dr. Reddy thinks it will be best to wait another week before we begin treatment no. 6, and John and I are both in favor of that! We are now leaving the hospital and on our way to have lunch and spend a few hours in Birmingham before we come home. I hate that Noah’s body is having a hard time coming back from the last treatment, but I’m very glad that his doctor is willing to give him another week of rest. We are looking forward to a week without shots and some normalcy!

Thank you for your prayers , and I will post a more detailed blog tonight. 

Ok here's the more detailed blog:
We are home! As I wrote earlier today, Noah's blood wasn't quite as strong as it needs to be for the next treatment. We will wait until Tuesday to check his counts again and go from there. More than likely he will be able to go ahead with treatment number 6 on Wednesday. Now here's the news I wasn't expecting to hear. Treatment number 6 may not be the last. What I don't remember hearing when we began this chemotherapy process was that there are 17 treatments in Noah's specific protocol. All we heard and understood was that there were 6 scheduled treatments and an MRI after that which would determine the next steps. The nurse practitioner did encourage us that the previous 2 patients (and only other patients) that have used this protocol (at this hospital) did not need the full 17 rounds of treatments, and they are both doing well today. She seemed confident that he wouldn't need the full protocol. Anyway, right now we're definitely looking at one more chemo round and an MRI; the concern of the spot on the last MRI is ever constant in my mind. Still praying it won't be there at the end of June. The possibility of more treatments still exists, but we're also praying that number 6 will be the last! Noah has had a long day of traveling but still has lots of energy to get into EVERYTHING he shouldn't be getting into at home. So he is doing great. :) I will be sure to post when I have a definitive answer about next Wednesday.

It has been 12 days since I last posted, and I've been told that is too long. So, for that I apologize! I have been so caught up in life the I haven't made time to let you know what's been going on with Noah. He has had a really great 12 days. Since we left the hospital two Wednesdays ago he has not  had any problems at all. His blood counts came up really well, and his platelet levels are high enough to go ahead with his LAST scheduled treatment this Wednesday. After this treatment and the neutropenia that is sure to follow, we pray there will be NO MORE TREATMENT needed and our boy will be cancer free.
John had a great time in Chicago with the ABTA team and will post a blog with pictures about his experience there. We are still selling t-shirts to help support the American Brain Tumor Association; you can purchase them here. Thank you to all who have donated to ABTA in honor of Noah or bought a t-shirt to help support their cause. Through the 5k run the organization raised over $750,000 for brain tumor research funding. We are excited that we were able to be a part of that this year. Next year we plan on having our entire family there. :)
Prayer requests for this round of treatment are no different than what I requested for the previous rounds. We pray for Noah to keep his appetite and energy, for nausea and vomiting to be far from him, for cancer cells to die and good cells to live...I will post more on Wednesday after he begins that LAST treatment. God bless.

Noah's ANC came up remarkably this morning and we were told we would be going home. This was such a surprise for us. He is still neutropenic so we will continue to watch for fever and give him a nightly shot to stimulate his white cell growth. We will return to Children's on Friday morning for lab tests and a platelet infusion (outpatient). This is such a blessing for us since we expected to be in Birmingham through Friday! Thank you for your prayers!

Noah's ANC went up a little today and he hasn't had a fever at all. Hopefully after a few more days of this trend he will be well enough to return home! My mom saw the first printed t-shirt and she said it looks great; I will post an actual picture of the shirt on the Order Noah T-Shirt page as soon as we get home. I won't be able to blog for the next few days (my hp won't let me edit our site from the hospital & John will have his computer at home) but you can follow my status updates through Facebook. I'm sure the next few days will be pretty uneventful as we just wait for his counts to rise. Please pray for his neutrophils to grow! I will post again sometime on Friday - hopefully from my home. God bless, hope everyone has a great week. 

I had a great Mother's Day yesterday; Noah and I were lazy during the morning and then we had lunch with Daddy and Mimi. He even played outside for a while during the afternoon. His temperature started slowly climbing around 6pm, and by 9pm we were on our way to Birmingham. He had his port accessed and labs drawn while in the ER, then we were admitted upstairs around 230am. He is getting an antibiotic dose, has already had platelets this morning, and is now getting some red cells. His ANC is 2 today; I'm expecting that to bottom out and then begin the slow process of climbing up. We should be here about a week. I'll continue to update as the week progresses. Thank you for your prayers! 

I have created a T-Shirt Order Page; See the Order Noah T-Shirt link at the top of the blog for more info!
Quick Update: Noah is neutropenic, but is holding his own. No fever, a little energy to play outside w/ Dad and ride the lawn mower (before I get emails - not while cutting the grass, just a ride!) so we're just hanging out, having fun, and trying to make every minute count before the dreaded hospital stay. Hopefully that won't come until maybe Monday when he will more than likely need some blood products. So we're still home! I will notify of any changes. Hope everyone has a happy Mother's Day!! Love you Mom!

If anyone has asked about Noah this week, I've replied, "so far, so good!" We got a good report on his blood test yesterday; he has a pretty good amount of energy and has been visiting with family every day since we returned from his last treatment. Nevertheless, our bags are packed and we're prepared to head back to Birmingham at a moment's notice.
I don't have much to say except thank you - I hope that doesn't get old - to our family, friends, and community, and anyone who has ever lifted a prayer or supported us in any way. Everyday I am overwhelmed by the generosity of others. I will update if Noah's health changes so you will continue to know how to pray. Once again we're asking God to keep infection far from Noah, and keep fever at bay. Hope everyone has a great week! 

This picture is of Noah's last dinner before the chemo...he loves turkey and corn on the cob, so we had a Lawler's feast. I expect his appetite to dwindle as early as tonight. We are currently in Birmingham for his 5th treatment (of 6 scheduled) and should be here through mid-day Friday. The past week has been a great one. Noah's blood counts were pretty good, so we were able to get out of the house and even do some grocery shopping with him. He played outside when the weather permitted, and visited with his cousins for a day; he hasn't seen them since December, due to low white cell counts and sickness. Things were almost as good as "normal" so going into this treatment has been hard, knowing his health will begin to decline pretty much immediately and I will be back in hyper-sensitive keep-my-son-safe-mode! So keep praying for us please, especially for John as my patience decreases and my nervousness is on the rise, due to Noah's impending neutropenia and potential for infection. 
On a better note, we were able to meet up with a couple of families we've met through Children's that are going through all too similar experiences. It's unfortunate, but at the same time good to have friends to talk with that have "been through it" already, or are going through it with us. There is an instant connection, especially for me, with a mom who can look at me and not have to say anything, and her eyes speak to me, "I know." There is level of comfort in that; I hate it that there are others struggling through this same situation...but at the same time I'm thankful for their friendship and help. 
Right now Noah is getting his first chemo drug...the one that requires his blood pressure to be monitored during the entire drip (2 hours or so) and he is NOT enjoying being hooked up to two lines at once! This drug also will begin to make him nauseated, so please also pray against nausea and vomiting for him. He will have one more chemo drug tonight, two more tomorrow, and an antibiotic on Friday morning before we leave.  
It is dinner time, so I'm going to close for tonight. The pictures above are from last week...good times. Thank you guys for everything and much love!

I spoke with Noah's nurse practitioner yesterday and after talking his lab results over with the oncologist they decided it would be best to wait a week on the treatment and let his body bounce back a little more. So the next treatment will be Wednesday the 28th. He has lots of energy right now and is eating really well so I'm glad he will get an extra week of that.
This week has brought some unexpected media attention; there will be a story airing on our local Ch. 19 about some of the fundraisers for Noah, ABTA, and his oncologist's research. Also, last week John called the Dave Ramsey show to announce our freedom from debt (except for our mortgage!) and left a detailed message about our situation as of late. A respresentative called him back yesterday and wants us to be on the show this Friday. They want us to mostly talk about the importance of tithing and the provision of God. We will speak with them via skype on Friday morning, but I'm not sure what time the radio show will actually air, or if we will be on the Fox News program. Please pray the the right words will be said and will bring encouragement to others and glory to the Lord. (And pray I don't sound or look as completely uncomfortable as I will surely be!) Thank you for praying!

Noah's lab results came back ok today; white count/neutrophil count is rising, but his platelet count is a little low. He won't get an infusion, but if his platelet count doesn't come up enough by Monday then we will push his next treatment up a week to give his body time to recover (it is scheduled for this Wednesday). This is fine with me as I would like to see him have a week of good blood counts, and let him have some social interaction, which he is starving for!
Our Path for Progress team has already met nearly 70% of our fundraising goal. I am waiting on a price quote for our t-shirts and will get the order page set up as soon as I clear everything with the printer. I also spoke with a representative from ABTA today and we are able to request our donation to be set aside specifically for pediatric brain tumor research, which I am VERY happy about. I asked him what percentage of their funds go to pediatric research, and he estimated between 8%-10% (around $150,000). He said this ratio is consistant with the ratio of adult to pediatric brain tumors. The sad part of that percentage is that of all pediatric tumors, brain tumors are the leading cause of solid tumor cancer deaths in children through high school age (tbts.org). There isn't that much funding for it's research...and that sets a fire under my butt. Now, I realize that ABTA isn't the only organization funding pediatric brain tumor research; there are several other organizations that are dedicated to childhood bt awareness/fundraising/etc (cbtf.org, braintumorkids.org, pbtfus.org). But I know there still isn't enough money floating around in the sea of research funding to figure out why my son had a life-threatening tumor that grew rapidly inside of his brain, and how to effectively get rid of the cancer for good. His treatment regimn is still experimental...and that's kind of scary.  
Anyway, it's late and I'm rambling...but please know how much we (my family) continue to appreciate your prayers and gifts and encouragement. I will update again when I know our next date for treatment. Have a great weekend!

"Many are the plans in a man's heart, but it is the Lord's purpose that prevails" (Proverbs 19:21). Holding firm to His truth and promises. :) 

This one's short and sweet: We arrived home around 3pm yesterday afternoon! Noah is doing well and enjoying his toys and is happy to be able to run and play freely without the interruption of vital signs check or being hooked up to an iv, etc. We have 7 more days before we return for Noah's 5th round of treatment, and we're going to make it as fun-filled as possible. His blood counts will be checked again on Thursday, so hopefully they will be high enough to continue with the next treatment as planned. Thank you for your prayers; we are so excited to be back in Athens. :)

I knew I shouldn't have got my hopes up...I had convinced myself that today was the day, prayed in faith and stood my ground, but we're still in Birmingham. Noah's ANC was up from yesterday, he just got more platelets, and we're still waiting. I'm very disappointed, so I'm trying to recover from that. John and I have a marriage enrichment class later this afternoon that I was absolutely certain I would get to attend in person; now I have to try to "be there" via skype. This morning after breakfast Noah wanted his shoes on, then found his ball cap and put it on, then asked for his coat...he is ready to get home as much as I am, if not more. He looks good today, is feeling good, and wants to run and play in the sunshine...come ON neutrophils! So my hope is for tomorrow, while I struggle through the long wait for John to get here. Please excuse my negative tone, but I'm just being real. :) It's been a LONG week. Thank you for your continued prayers, hopefully tomorrow's blog will be from Athens.

We're still in Birmingham. Noah just got more platelets and is now playing with his new Thomas the Train set & helicopter (John had an emotional breakdown in the hobby shop). He's feeling a little better today. Yesterday afternoon he spiked a fever again and is now getting an additional type of antibiotic. His ANC is still zero, so we are waiting and praying for that to start going up. Blood was drawn yesterday for cultures, but I haven't heard anything about them - I'm assuming no news means no bacterial infection.
We had some friends visit on Tuesday, and Noah also got to visit with a sweet dog from the "Hand in Paw" program. Yesterday was rough; Noah didn't feel well and I was really tired, so neither one of us had much patience with the other! Thankfully John was able to come down yesterday afternoon to break up the monontony. It seems like the days drag when he is not with us, and then when he is here they fly by...I really miss my husband.
I'm not sure how long this stay will be, but please keep praying for Noah's neutrophils to grow, and for us to stay positive and full of joy and life while we're confined to this small, not very interesting space. :)

Noah woke up this morning very tired - he usually hits the ground running, but his blood counts are very low today (ANC is zero). If anyone has been around him for any length of time they know that he is ALWAYS  on the go. He will get blood and platelets today. John is with us but will have to leave for Athens tonight for a meeting. I may not get updates out every day due to computer issues, but hopefully I can get John to keep the site updated from home. Thanks again for prayers and support; we're hanging in there!

I am excited to announce that our ABTA Path to Progress team "Fighting the Flood" for Noah has already met it's initial "modest" goal of $500! We have now increased that goal to $1500. I am very close to being able to create a page on our blog specifically for our t-shirt sales; the proceeds will go to brain cancer research as well. We also have several more runners/walkers joining our team. If you are interested in joining/donating please contact me at hvnbnd182@msn.com or visit our Path to Progress Team Page.  Thank you so much for your contributions!!
Noah's lab results today confirmed that he is once again neutropenic, and we should expect a fever to spike at any moment. Our bags our packed, so we're just waiting for 100.5 while praying it won't come. Maybe my next blog won't be from Birmingham...

The American Brain Tumor Association is hosting a "Path to Progress" 5k Run/Walk in Chicago on Saturday, May 22.  Because of the lack of funding for brain tumor research, and specifically the lack of research/study of Noah's particular type of tumor, we have created a team in honor of Noah. So far John and our friends Dave and Rachel are participating in the race and in addition raising $ to support this cause. We are a little behind; we have less than 2 months until the event. If you are interested in donating money or joining our team to run please click on the link below to access our team page. Even if you are not from the North AL area, we would love for you to meet us in Chicago the day of the race and join our cause. Also, a donation of any amount will be greatly appreciated, and tax deductilble. We have set a very modest goal of $500 to begin with, but are hoping we can greatly surpass that amount as new team members join. In addition to donations we will be selling t-shirts to raise money for ABTA; I will post the t-shirt design (personalized for Noah) and how to purchase in the near future.
In addition to signing up through the ABTA website, please send me an email at hvnbnd182@msn.com if you plan to race.
Thank you so much for your help in raising brain cancer awareness and funding research!!!

"Fighting the Flood" for Noah team page - click here to donate or join our team and race down the "Path for Progress!"

It's good to be home. :) Noah has been doing ok; he's still vomiting here and there, as I'm trying to wean him off the Zofran. It's just taking a little longer this time. He ate some yesterday and drank a little, but today he isn't wanting to eat much of anything (except ice cream). He's had a few sips of milk, and I'm praying the appetite will come back soon. His temp. is going up and down, so I'm watching that really closely. Dr. Hawthorne told us before we left on Saturday that she would expect us back around this Wednesday and Thursday, since it's harder for his body to fight sickness with each treatment. He has a pretty runny nose and a slight cough, so I'm guessing the fever could spike at any moment.
We are still waiting on someone to call about his latest MRI; not having the surgeon's or the oncologist's opinion is leaving my mind open for a world of worry.
We are about to go to his ENT to get some ear molds made to keep water out  (Noah had tubes put in 5/09) since he pushed his down the drain while Dad gave him a bath. **We're also having a hearing test since a side affect of the drugs is hearing loss...praying there is none of that! Thank you all for still thinking and praying for us; I'll keep you updated if there are any changes in his health. Hope everyone has an awesome week!

**Passed hearing test!

Noah is finished with round 4, technically, but he will feel the effects of it for a few weeks to come. He is sicker this time. The Zofran hasn't worked as well as it usually does, and he has thrown up several times today. He did not eat or drink anything until dinner, when he ate a few bites of turkey and some m&m's (hey, whatever he will eat these days) and is still keeping them down. He's had a few sips of water tonight, and a small amount of Sprite. He will ask for milk but is unable to stomach it. His energy level isn't the norm...he's been sitting/relaxing with me and John a lot, which is pretty much unheard of. This season is going to get worse before it gets better, I'm afraid. Good news - we leave in the morning. We will begin his "white cell booster" shot tomorrow night, and begin the countdown 'til we come back to Birmingham. I'm praying for his nausea to subside and appetite to return soon.
I saw a post on another cancer patient's blog, wanted to share:

WHAT CANCER CANNOT DO

Cancer is so limited
It cannot cripple love
It cannot shatter hope
It cannot corrode faith
It cannot destroy peace
It cannot kill friendship
It cannot suppress memories
It cannot silence courage
It cannot invade the soul
It cannot steal eternal life
It cannot conquer the spirit.

Author Unknown

We arrived at Children's at 815am, Noah had his MRI at 1215pm and hit the recovery room around 1. Now we are in our room on 4 Tower and will start chemo in about an hour. 
Noah took a little longer to wake up after the procedure this time, and he is still a little drowsy in the above picture. He is eating well right now and we hope that will continue through the treatment. 
MRI results (sort of): Noah's neuro-oncologist and neurosurgeon were both out of town today, so we couldn't get an "official" reading. The nurse practioner showed us the image, and she agreed with the radiologist that there is a place of concern. There appears to be a "spot" or "enhancement" that was very very small on Dec. 30 (his last MRI) and has grown a noticeable amount. They don't know what it is - could be scar tissue, could be edema, could be tumor - so we're waiting for one of his doctors to take a look at it. It is definitely something we have to watch. Right now all we know is that if it continues to grow, it will more than likely be residual tumor and have to be removed. It's located on the edge of the brain next to the space that remains from the tumor. Hopefully this is something harmless, and if not then the remaining chemo treatments will take care of it.
We will keep updating over the next few days while we are at CHS. Thank you for your continued prayers!

As you can see in the picture, Noah wasn't very excited about the train ride at the Birmingham Zoo. He stuck pretty close to me and protested a few times before the ride started. About 2 minutes into it, he finally began to enjoy himself, and now he can't stop takling about the "choo-choo." The zoo was an ok experience for us. Because Noah is an active guy, he doesn't like being strapped in a stroller when there are new places to explore. Unfortunately, he doesn't respond to the word "stop" quite yet, and he fussed most of the time. Of all the animals at the zoo, he found the turtle the most intersting and wanted to watch him to entire time. Every exhibit we went to he would call for the turtle. :)
He had his port accessed around 2pm and saw his doctor, then we went searching for our hotel. It a good drive from the hospital, but it's a nice place to relax before our hospital stay (thank you Jennifer!). We need to be at CHS at 830 in the morning for Noah's MRI...I really doubt his MRI will take place before 9, but remember him in prayer all morning if you can! I'm getting anxious about it, but I know that this is in the Lord's hands. It does no good to worry - I'm telling myself that over and over.
Thank you for your thoughts and prayers; I will update tomorrow evening with more information.

Noah has had a great couple of days - his health is good, he has tons of energy, and his appetite is pretty much back to normal. But as soon as he reaches this point, it's time for another round of chemo and downhill from there. I'm especially nervous about this upcoming trip to Children's because he his having his 4th MRI on Thursday, which will show us what kind of progress he is making with the chemo - is it working, keeping the tumor cells at bay and killing any cells that remained after his extraction; is there any regrowth of the tumor...of course we're praying for an amazing outcome and for God's will, but it's hard not to be anxious. We have a clinic visit early Wednesday morning with Noah's neuro-oncologist; he will have his port accessed and labs checked, then we will be free to go for the day. Hopefully we will be able to plan a fun-filled day for him to enjoy and stay in a hotel that night. We won't know the exact time of his MRI until Wednesday afternoon. Hopefully it will be early Thursday morning so he won't have to go very long without food/drink, and also so that he can keep his chemo treatment on schedule. We are expecting to stay through Saturday, possibly Sunday, because of the set back due to the MRI. I am asking for prayer for the same things as before his last treatment (his health and response to the drugs, his appetite, strength, cooperation, etc.). Even though his white cell counts have dropped more quickly with each treatment and it has taken longer for them to climb back to where they need to be, he has not even seemed phased by it. Even when his red counts are so low that he needs an infusion, he still has so much energy and plays and laughs, and definitely hates being confined to his hospital crib...so thank you for praying. His resilience amazes me.
Since we are still not completely familiar with the Birmingham area we don't know what's available as far as fun things for Noah to enjoy (a zoo, kids' museum, etc.). If you have any suggestions please let me know - you can email me through the "how to contact us" link above, or post a comment on our guest book.
P.S. - Anytime Thursday morning, if you think about Noah, please lift up a special prayer for his MRI experience, that he will do well with the anesthesia, that all staff involved will take every precaution possible to keep him safe (once your child is burned in an MRI you will never completely trust those staff members again), that there will be no sign of regrowth, and that John and I will be at peace while Noah's in what has become a questionable machine - yet one that saved his life. I have to tell myself that the risks are worth it.

John was home with Noah tonight while I was at a meeting for a few hours. I called on my way home to see how everything was going and Noah just had his shot and was enjoying his ice cream reward. John told me that he was worried the shot would hurt more than usual because the numbing cream we use was rubbed off before it had time to take effect. While he was putting the needle in Noah's leg he apologized to him for having to give the shot, and for it hurting worse than usual. With the needle still in his leg, Noah reached up and put his hands on John's face, leaned over and kissed him. 
I wanted to share that story so you know what a sweet little boy we have...no to mention brave. I know I said many times before how amazing he is about getting his shot, but even his nurses have marveled at how well he does with it. As John said to me tonight, "He is my hero. " :) 
He is doing well; white count and platelets are still low, but hopefully that will change by Thursday when we get his blood tested again. Thank you for praying! 

This is a picture my mom edited. Just a quick update: Noah is doing well today; no fever. Hopefully the cut on his head will heal soon. We've had a fun day. Will check counts in the am and post on how he's doing!

Noah just had a small accident while throwing a tantrum and knicked his incision...it's a small cut - took a think layer of skin off, and his platelet counts are ok so it's clotting, but we are worried about infection since his white cells still aren't strong. Please pray with us against fever/infection...not only for his health, but to keep his next chemo round on schedule. The site has been cleaned with alcohol and covered w/ an antibacterial polysporan, but I'm still nervous. So please continue to pray for his health!

We are home! We were discharged around noon today. We will continue to monitor Noah's temp. because he is still more susceptible to infection. He has had a great day and his appetite has returned almost to normal. Thank you so much for your prayers for his health.
We are scheduled to be back in Birmingham on Wednesday, 3/24 for an MRI and his next round of chemo. Until then, we're going to enjoy our time at home. :)

Well, Noah's lab test revealed he had made one neutrophil! And one is much better than none. His doctor did the neutrophil dance to encourage him to keep making them...I'll try to catch that on camera tomorrow. ;) His ANC (absolute neutrophil count) is about 8; the goal for a chemo patient is 500; the average ANC is at least 1500. Since Noah has not had fever since Saturday, his blood cultures have not shown any bacteria, no infection...we should be coming home tomorrow IF his neutrophils continue to grow.  So pray for those little white blood cells! I can tell my patience is wearing out with Noah and his patience with me. Yes, we're together all the time anyway but we usually have about 1800 square feet to move around in. This hospital room (which is a really nice size and fits 2 chair-beds comfortably) is starting to close in on us. I am thankful that Noah hasn't been sick and on lots of meds; he's been able to sleep comfortably with only an occasional vitals check at night and he gets to play at the Lily Pad about once a day. Things could be so much worse, I know. But that doesn't make me any less ready to get home - especially since that's where my sweet husband is. John and I have never spent much time apart at all, so this is an adjustment in that aspect as well. I will post tomorrow, hopefully with news that we are HOMEWARD BOUND!!!

Noah's counts pretty much bottomed out today. His white cells are zero, his ANC was nearly zero, and he is going to need blood today. We thought we would wait until just before we headed home (which has changed to Thursday, best case scenario) but his counts are low enough that he is getting an infusion this afternoon. He got to play for about an hour today - rode a tricycle, went to the Lily Pad, watched cars drive under the walkway to the Children's Harbor, then he played there for a bit. By the time we got back to the room for lunch and washed any germs away, he was exhausted and fell right to sleep.
I had a great visit with some of my "sisters" that drove down last night, and Noah had a blast showing out for them. John will come down this afternoon and spend some time with us until he has to get back for service preparations on Wednesday. Please pray for him as he spends so much time driving back and forth from Birmingham to Athens...and praise the Lord for our reliable transportation! I don't know if I've actually posted this on the site, but we were blessed about 2 months ago when some of our friends gave us a van. That's right, GAVE us a van. It's a 2008 Dodge Grand Caravan. And they GAVE it to us. It wasn't even one they just had sitting around that wasn't being used. They went to the dealership and bought it for us. They saw our great need and had the faith to meet it. Oh my word...I can't even begin to describe what a help it has been. The engine in my car had gone out several months prior the Noah's diagnosis, and John's Jeep is great for getting around town and for hauling his trailer, but it still needed a lot of work. With all of the upcoming medical bills, I was stressing about what to do. (We could not afford another montly payment, or the interest that would come with it.) John had enough faith to tell me, "stop worrying - God will provide." And He did. And we're praying that one day soon, we can pay this forward...and we're working on that. :) That phrase "to whom much is given, much is required" is on my mind. I'm not sure who said it/where it came from...is it biblical? I don't know. But I do know that the level of expectation I've placed on my family is..well...BIG. It's obvious to me that the Lord allows trails and tribulation in order to grow His children, to shape them like a potter shapes his clay. I believe we are being molded and crafted, sanded and scraped for a greater purpose...to resemble Him more. And if this is what it takes to develop my character and move me closer to the likeness of Christ, then so be it. Who am I to question His ways? We have been SO taken care of through this entire journey, I have no doubt that in the future He will provide in ALL ways - physically, materially, spiritually, etc.
And you know I have to close by saying, THANKY YOU for your gifts and prayers and encouragement and love and support....we are so glad to be in the family of God.
But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus' sake, so that his life may be revealed in our mortal body. So then, death is at work in us, but life is at work in you (2 Corinthians 4:7-12).

I'd also like to share about Beads of Courage. A friend posted the video below on facebook and I wanted to share with everyone who reads our blog. These Beads of Courage program help so many childhood cancer patients; it gives encouragement and hope. Noah is still too young to understand the concept (he just wants to put them up his nose) but I find great satisfaction in having a tangible thing to represent everything he's been through. And one day he will really appreciate them as well. But it needs funding just like any other program like it. You can click on the link above and follow these directions to give specifically to Children's Hospital Oncology Group Beads of Courage program:
1. www.beadsofcourage.org
2. Choose Shop, then Donate
3. Choose donation amt...
4. Location: Just because I care
5. Designate My Donation To: Child in Treatment
6. Write in the Note - Children's Hospital in Birmingham, Alabama - Oncology Group
* Step 6 is crucial to make sure it gets to Children's!

I was searching through our family pics and came across this one, which I love! Noah has always been such a fun and happy kid. He was 9 months old here; we were getting ready to decorate our tree after Thanksgiving '08. I call this his "super-baby" picture. :)
Today has been a good day. Noah's nurse asked the docs if we could take him off the fluids since he was drinking so well. They consented, so he is (almost) a free man! He has been freely running and jumping around the hospital room, and we took a walk down to 3rd floor where the Lily Pad is located (a play room for Noah's age group). He had a great time down there. Just before we left, we heard a med-flight helicopter approaching, and he was able to watch it land on the roof across from the playroom. So he is one happy boy today!
Last night nurse Jennifer came in to check on him, and he "wooed" her into staying a little longer and playing and dancing with him. He is such a flirt. (For those of you that don't really know us, he gets that from Daddy!) He loved on her, sat on her lap and looked at a book, played with her flashlight...it was really sweet that she spent so much time with him. All of our day/evening shift nurses have been so great with him, and I appreciate their compassion and love for him. I never get to really meet the night shift, because I'm trying to get as much sleep as possible, but I'm thankful for them also. I know their job comes with rewards as well as heartache, and I'm so glad they've sacrificed to be in their position.
As I'm writing Noah is sleeping while receiving some platelets. His blood levels were still about the same as yesterday, so we will be here for a few to several more days, depending on how quickly they rise. Best case scenario, we could be leaving on Wednesday. Whatever day we leave, Noah will get some blood and possibly another platelet infusion. John has to work today and tomorrow, then he may come back down on Tuesday afternoon and stay until we know if we're leaving on Wednesday. Wow, the flexibilty one must develop in a situation like this. I've always considered myself a somewhat flexible person, but this is pushing the envelope...well, my envelope anyway. I know other people are capable of so much more - but I'm a "planner."  I want to know what is going to happen and when. I don't like suprise birthday parties. I usually guess what Christmas and birthday gifts are before I open them. I make lists, and I check off each item as I finish it. In my world, organization = peace (but my home and my life don't reflect much of that right now). The past few months have been just the opposite of what I can handle, and my stress/anxiety levels, as well as my blood pressure, are proof that I'm not as flexible as I thought! But I'm growing towards flexibility with every chemo treatment and every fever that warrants a hospital stay. Hopefully when all this is over I will more skilled at handling the surprises life throws at us.
The pancake breakfast and the blood drive were both a huge success...thank you! (I posted a thank you blog below; I just can't say it enough!) John is already planning another blood drive in Noah's honor in is hometown of Florence. I'm really excited to see the outcome of it.
 When John arrived Saturday he came bearing gifts - cards, baked goods, etc - and the best one was a book called "Curious George Makes Pancakes." The book begins with George waking up excited about a Pancake Breakfast he is going to attend with the man with the yellow hat. (I really wish the author would have given the man with the yellow hat a much shorter name, like Bill or Bob.) Anyway, the breakfast is a fundraiser for the local Children's Hospital. As usual, George goes to the event, does his monkey business, gets dirty, makes a mess, but ends up saving the day. The book was given to Noah by the son of family friends. Brennan's mom told me it was his favorite book, and on several occasions he let her know that he wanted Baby Noah to have it...he made the connection about the fundraiser and he wanted Noah to share the joy he got from reading this story. This little book about pancakes has blessed my heart and I know one day when Noah is old enough to understand, it will bring him joy to know his peers were praying for him and loving on him from a distance. My mother relayed a story about a little girl named Hannah (daughter of a church friend) who took her bald-headed baby doll and drew a purple line down it's head "so it would have a scar like Baby Noah." These stories are so sweet, and I love to hear and document them...so please let me know if you have any more. :) We can learn so much from the compassion and love of a child.
Then Jesus called a little child to Him, set him in the midst of them, and said, “Assuredly, I say to you, unless you are converted and become as little children, you will by no means enter the kingdom of heaven. Therefore whoever humbles himself as this little child is the greatest in the kingdom of heaven (Matthew 18:2-4).

John is on his way down to Birmingham after service this morning and Noah is sleeping. He is doing well- no mouth sores, decent appetite, drinking pretty good, no more fever - but his counts are continuing to drop, so he will probably need some blood and platelets tomorrow. Hopefully after that his blood levels/ANC will begin to rise so we can head home. Thank you for your prayers!

"Then He took a little child and set him in the midst of them. And when He had taken him in His arms, He said to them, 'Whoever receives one of these little children in My name receives Me; and whoever receives Me, receives not Me but Him who sent Me.'" Mark 9:36-37
I don't have words to express my gratitude...I am so humbled by and indebted to my community for the gifts you've given, the blood you've donated, and the prayers you've lifted up for us. I am perpetually moved by the compassion and sacrifices made...I've never experienced the love of Christ like I have through this situation with Noah. I wept tears of joy and thanksgiving when I saw the pictures from this morning's fundraiser. You have given gifts, you have given blood, and you have lifted us up in prayer...and I thank God for you daily. Thank you for serving and honoring the Lord by loving on Noah - he would throw you a kiss and give a big hug if he could. Much love from an overwhelmed and thankful mother.

It is about 2:45 am and I'm just getting settled into my chair-bed in room 451. My mom and Noah are already asleep, but the control freak in me had to get everything organized and put away in the designated drawers and cabinets in our room before my mind could rest. We arrived at Children's ER at 10:30 pm and hung out there until 1:30, when our room was ready. Noah has been neutropenic since Thursday, so we've been expecting a fever to show up at any time; it came around 9 pm.  Thus far he has been given some antibiotics, had blood taken for lab testing, and is/will be getting IV fluids...so I'll be changing diapers about every 2 hours. :( He hasn't been drinking very well the past couple of days, so he could be developing some mouth sores. Never sure how long this stint will last...from past experience I expect to be here 4-6 days. With many prayers and much faith in a quick healing, hopefully we will be home much sooner. Although I can't complain about this at all - I've been following the blog of a young woman from the Huntsville area with Burkitts Lymphoma who has been in the hospital for 25 days following her chemo treatments; she just returned home yesterday. You can read her story and send her words of encouragement on her webpage here.
God is good, and in a few hours our church will open it's doors for another fundraiser for Noah, as well as a few FUMC ministries. John stayed behind in Athens so he could be a part of this special event...please know I would be there if I could. I can't wait to hear about it from him this afternoon. I get emotional thinking about how many people are lifting us up in prayer and standing with us and "holding up our arms" when we are weak. I have never experienced the love of Christ like I am experiencing it now through my brothers and sisters in Him...thank you.
And now I really need some sleep! :)

Yesterday was Noah's 2nd birthday. When he woke up I said to him, "Happy Birthday! Today is your REAL birthday, even though we had your party last week. You're 2!" He replied, "Me eat cake and ice cream?" So I asked my mom to pick up another cake for him and drop it by on her way to church. We had another party with Noah, Mommy & Daddy, which was a lot of fun - especially since Daddy was determined to get him the ultimate little boy birthday gift, which I will post pictures of above this blog.
The day Noah was born, I had no idea what his life would bring to mine and John's. Even though he looked like a really wrinkly, skinny old guy, he was the most beautiful, sweet thing to me. Two years later he has less hair than he had at birth, and a ginormous scar on his head, and he's still the most handsome, sweetest little man ever. :)  I never thought I would be so thankful to the Lord for Noah's 2nd birthday. But for the past week, every night he lays down his head and every morning he rises I give thanks for this child that almost didn't see 2. I think about what I would have missed had the tumor overcome him - his laugh, his smile, his sense of humor, his joy, his screams, his tantrums, his resilience. He's my miracle.
I forgot to let everyone know that we returned home on Friday (2/26). We will have Noah's blood tested tomorrow and Thursday, and we expect to be back in Birmingham by the weekend for fever/neutropenia. It seems that Noah has had less side effects since this last treatment; he is eating better and has been more active compared to the first few days following the previous treatments. It would be awesome if he didn't run a fever and we could take our time getting him to Birmingham for blood/platelet infusions (which are pretty much inevitable), because once his temperature starts rising we're told it's a very risky situation and he needs antibiotics asap. So we're taking precautions and praying against anything that could cause fever (while monitoring him very closely) and hoping for a leisurely, worry-free trip to Birmingham instead of a ride in an ambulance.
This weekend is the Pancake Breakfast at our church, where the men's ministry will be trying to raise money to help with Noah's medical costs. There will also be a blood drive in Noah's honor. If you happen to be at the breakfast, please give blood as well. And wherever you live, if you're able, please donate your blood! I was led to give blood for the first time about a year ago, and though uncomfortable it was rewarding to know that I was quite possibly giving someone else life. I've read that the cancer population really depletes the donated blood supply. My son has already had 3 transfusions, the first one more than his entire blood volume. Each time we stay at Children's, the hematology/oncology floor is filled with patients of all blood types who need your healthy blood. The next time you see a Red Cross "blood bus," please don't pass it by - give! :)
Once again, I have to close by saying "Thank you!!" to everyone who has helped us in whatever way you can. WIthout our support system, we could not survive the day to day stresses of the situation. I'm happy and grateful to say that with each medical bill/pharmacy bill that comes, we have been able to simply write a check and not think twice about it. Thank you for your blessings.

We arrived at Children's around 9 this morning and waited a while for a room to open up for us. Noah was very hungry and tired (which made those 4 hours pretty difficult); once we got in a room he ate a little and took a good nap. He got his first dose of chemo. shortly after he woke up and he's doing really well. He has played with his toys a lot, and just before he went to bed he had an audience of about four staff members while he played his harmonica, danced while Daddy played the guitar, and was just having a great time. He is now (finally) asleep.
We've had visits from a neuropsychologist and dietician today, and should see a dentist at some point during our stay. Everything is going really well, and we appreciate the prayers!

We celebrated Noah's birthday this past Saturday with our family. As you can see in the pictures below he was able to get outside and enjoy the beautiful weather and the birthday decorations some friends put in the yard. We even took him to the "kiddie carnival" where the Lion's Club was having a plate lunch fundraiser for him. It was a good weekend. And our house is now covered in EVEN MORE toys and balloons from one end to the other! Noah was really excited to have so many people in the house at once - he went from person to person hugging and soaking up the love. He definitely enjoyed all the attention he was getting! His actual birthday is Sunday (2/28) but since we have his third chemo treatment on Wednesday, we knew he wouldn't be well enough to have anyone over to celebrate this weekend.
Please remember us in your prayers these next few days as we prepare for the trip to Birmingham, the treatment, the side effects...pray for Noah's body to respond well to the drugs, for his appetite to rage, for his taste, for his temperament, for him to feel no pain. I had some blood drawn today, and I forgot how it hurts. This little guy was getting stuck in his arms twice a week for a while. He's tougher than I am! We appreciate all the help that has been given to us, and all the prayers for healing and comfort. We will update on Noah's condition while in the hospital. God bless you!

I just spoke with Noah's nurse practitioner about his lab results from this morning; they look pretty good. We will continue with the (GM-CSF) injection tonight and tomorrow night, then Wednesday night will be shot free! Thursday morning we'll check counts again to see if he can sustain without the injection. He is definitely getting used to the shot, and I'm gradually getting better at giving it, so there is less anxiety between the both of us each night. Last night we didn't have to restrain him at all; he just relaxed in John's lap and didn't even flinch when the needle went in. He's a tough guy now; I wish he didn't have to be.
When Noah was diagnosed, I knew immedietly what a long, physically/mentally taxing journey we, as a family, were about to begin. But I had no idea how my spiritual life, my relationship with the Lord, my theology, basically everything I knew/thought about God would be stretched, tested, doubted, increased, etc. I guess you could say I'm spiritually and emotionally worn out. I went for a drive Saturday (which I sometimes do to get away and think/pray) and I found myself, once again, asking the Lord to take this away from us, and most of all, from Noah. After crying and fussing and whining for a bit, I begin to just ask the Lord to come quickly. Come and relieve us from this world filled with sickness and broken hearts; come, and bring Your Kingdom with You. I know that anticipating the Lord's return is good, and we should all desire that. But I feel like my prayer was selfish in nature, because I'm tired of this world and it's sickness. What I haven't prayed in a while is, Lord use this trail to bring glory to Yourself. Lord use my son’s story to bring someone closer to You that hasn’t cared about You. Lord show someone who feels unloved by You that even in their pain, even in their “desert” that You are there, sustaining them, because of Your love for them. You never promised in Your word that we would be free from pain and suffering. You never promised that You would not give us more than we can handle. Paul pleaded many times to be relieved of the thorn in his flesh. When we are allowed to be given more than we can handle, more than we can bear, that’s when it’s so much easier to give it to You. Father take this burden and carry it for us. Let us be an example to others in pain, in grief, in the desert that in EVERY season of life You are still God. In EVERY season we still have a reason to sing, and most definitely still have a reason to worship You. It may be a little (or a lot) harder at times, but because of the hope we have in You we will get through this.
I'm posting a song below that I've been listening to about praising God in the different seasons of life. I hope it encourages whoever will listen.
Thank you again for still praying and encouraging us though this season. God bless!
P.S. And a special thanks to the Lion's Club for their fundraiser coming up this Saturday to benefit Noah and the medical expenses incurred for his treatment.

We're home! This morning Noah's ANC went up a little more, so after another platelet infusion we were on the road to Athens. As soon as I started packing and he saw me bring out the stroller he was looking for his hat and coat. The boy was ready to get home. :) We've had a good day; Noah has played with every toy he owns, just making sure that they are all still here I suppose. We're getting ready for bed and excited about sleeping without being awakened every few hours by someone with a blood pressure cuff and a thermometer. :) Though they are much appreciated! We're just glad to be home.
Thanks for your prayers and encouragement (and offerings of food and other forms of assistance)! You are amazing servants of the Lord. God bless.

It seems like we may be here for a while longer. Noah's neutrophil count was almost nothing so we may be here through the end of the week. I guess I should stop getting my hopes up that we may leave a certain day, because honestly no one knows. We just pray that his daily labs begin to look better and better. There is no "magic number" he needs to reach, but he just needs to set a trend climbing up instead of down. He is still confined to his room, and is doing really well considering that he's been in the same space for 4 days. John is here tonight and will stay through tomorrow, so I'm going to get out and find a new toy to keep him entertained. (We usually get him a new toy or 2 with each stay!) He is also eating better and drinking MUCH better, so he doesn't need fluids constantly and only stays connected to the iv for his antibiotics. This has allowed him to move about the room without me fussing at him to watch his iv, so he's enjoyed today much more than yesterday.
If anything changes I will post again tomorrow; otherwise, we're just waiting!

"Wait for the Lord; be strong, take courage, and wait on God." - Psalm 27:14

Just a quick update - Noah had a better day today. His ANC dropped a little, and he had another blood transfusion late in the day. He was completely worn out from not sleeping well since we've been here, so he slept for 3 hours. When he woke up after the transfusion he was full of energy w/ color back in his cheeks. He played for a long time, and now I'm still trying to get him to settle down at 11:15pm! Hopefully his ANC will go back up tomorrow, and we may get to go home on Wednesday. We won't know if he has an infection for 5 days (I don't think we'll have to stay that long though). Thank you for praying!

The boys are asleep, and I'm hoping I can get there soon. :) Noah is still getting fluids and antibiotics and is still confined to the room. He received some platelets today; his platelet counts weren't as low as they were this time last month, but because of his fall/bump on the head, Dr. wanted to give them as a precaution. She said even though the ct looked good, there could still be some slow bleeding. So far he hasn't needed any blood, but that could change depending on how low his counts get. I'm hoping they jump up tomorrow and continue to climb through Tuesday so we can get home! His temperature shot up last night, but that's been controlled with a few doses of Tylenol this morning. He's been pretty cranky at times today, but has had many more happy and playful moments than yesterday. I've posted a few videos made today on our youtube page. John arrived around 3pm, about the same time as some friends who came to rescue me from isolation for a while.
Right now we're doing a lot of waiting again. Labs are drawn between 3-4am every morning, then we find out sometime after 8 what they look like. Tomorrow we will know if he has an infection or not. Then we'll keep praying as we wait for the next step. Thanks for your encouraging comments! Will keep you all posted.

It's almost Sunday as I write this...it's been another long day. Noah woke up at 8am w/ a fever, so we were told to go to Huntsville ER for some labs and antibiotics. It was a very stressfull experience; Noah decided to attempt an escape while I was reaching for a diaper and since his pants were around his ankles he dove headfirst for the ground, hit on the "fragile" side. His platelets were also low so he had a ct scan to make sure there was no bleeding or anything else going on under there. It checked out ok. He's just got a big bump and bruise on his head, and I've got one on my heart...it was something I could have prevented. After that he had to have his port accessed three different times, and another stick for labs (needed a different location). Labs showed him definitely neutropenic again, and he got some fluids and antiboitics over a few hours. By the time he finally got calmed down and was ready for a nap the hemsi showed up and stress hit us all again. Fortunately I got to ride in the back with him, and that helped him to nap for about an hour off and on while riding down to Bham. After arriving at Children's he continued to get fluids and antibiotics, and had a chest x ray. They think he may have a respiratory infection, but won't know for sure until Monday. Until then he is confined to the room, and basically "quarantined," where anyone coming in has to put on a mask and gown. We're praying that will end on Monday when they can determine what caused his fever this morning.
John is still in Athens since he has to lead worship in the morning. That's hard on all of us to be separated right now. My mom is staying with me until John can come down tomorrow afternoon.
Someone told me in the beginning of this that we had a long, hard road ahead of us - that it would get harder before it got easier...I'm praying this is the "harder" and from now on will be the "easier." Somehow I know that's not the case. Don't get me wrong I have lots of hope for my little guy and faith in the Lord, but this is still hard. I've cried a lot, I've been plagued with guilt, been angry at people, been breaking my back to try to keep Noah happy...but it's almost tomorrow and I know He brings joy in the morning. Maybe not that joy that comes with happy, no-problems, peaches and cream stuff...but the joy that raises from deep within when I realize that He is walking this really crappy road with us, and carrying us when we get too weak to stand. Joy that gives my arms that extra boost of strength when they feel like they will fall off from a 28 pound monkey constantly hanging off my hip. Joy that whispers, I will never leave or forsake you...especially in times like this.
God is still good, even when I don't understand. Thank you for still reading, praying, encouraging, and loving on us. You guys are amazing.
Psalm 30
10Hear, O LORD, and be merciful to me;
       O LORD, be my help."

 11 You turned my wailing into dancing;
       you removed my sackcloth and clothed me with joy,  12 that my heart may sing to you and not be silent.
       O LORD my God, I will give you thanks forever.

We're having an ok day...Noah is a little stressed out and letting us know, but he is reacting well to the chemo. He is working on his last dose of etopophos right now, followed by another dose of Zofran (no vomiting please!). The last drug he will need here is a switch from Bactrum, which Dr. Reddy believes caused his rash, to Pentamidine, another prophylactic antibiotic, which he will only have once a month during his treatments. We're praying there is no reaction to this one. After some regular fluids overnight we should be free to go in the am after dr.'s rounds. Because of his drop in ANC after the last treatment, we are prepared to be back here in about a week to week and a half for treatment for neutropenia.
This stay, as John mentioned last night, has been better than last month. Being here is like a wake-up call for me; we run into familiar faces that have been here since our first visit, we hear kids screaming in pain down the hall, see the scared faces of parents heading to the PICU, and realize that "it could be worse" or "at least we're not dealing with this".....helps us keep our perspective. And that seems horrible and makes me feel guilty when I think about it - us comparing our situation to others and counting our blessings, because that means someone else is dealing with a heavy load. I just pray God gives them strength and power to get through it.
Dr. Cook just came by and we will definitely be heading out sometime before lunch tomorrow, as long as Noah does well through the night! Good news, cause I am ready to get out of here. :)

I've been keeping up with a little guy named Joel Green from CO. He just had surgery to remove a tumor on his brain stem and is doing well as far as I can tell. His parents are still awaiting lab results and are rallying people to pray for his healing...please add him to your list as well. You can read about his story and see his sweet pictures at the website:

http://www.joelevangreen.com

God is good, all the time. And all the time, God is good. He will draw near to us when we seek Him, and prepare us for what lies ahead! We are still trusting in His promise for healing and taking it one day at a time. :) Thank you for your prayers and encouragement, and God bless!

I feel like I should be blogging more often, but there's really not much I can think of to write here lately, but I'll give it a try. Noah and I have been hanging out at the house mostly; I get out here and there when John or one of our moms can stay with him. Noah has been for a car ride several times, only to find he's getting out at the hospital or not getting out at all. But at least he gets a change of scenery. We had his labs done yesterday morning with good results. His ANC was as high as it's been since before the first round, so we got the thumbs up for the second round of chemo; we leave tomorrow morning at 7am and will probably stay at Children's through Saturday. Noah has a rash on his face, arms, legs, and bottom that's been sticking with him for about 6 days, and we're not sure what it is or why it's there. Hopefully we can figure that out tomorrow as well. He's had some headaches, and has been a little more clumsy and angry than usual. He is becoming even MORE strong willed than ever...he is approaching the 2 mark; I suppose that has something to do with it. It's SO hard not to laugh when I catch him doing something wrong (like sitting on the dining table) and he lookes up with a big grin and yells, "Hi Mommy!!!" in an attempt to distract me from what he's doing. 
I think this stay at the hospital is going to be better; we will definitely be more prepared as far as what to expect and how Noah will react. During the last treatment his nurse gave him a stethoscope to keep. They take his vitals a good bit, and in the beginning it was nearly traumatizing for him. Now, he helps put on the blood pressure cuff and actually pushes the button to start the machine, and he "helps" take his temperature with the "beep-beep" as he calls it. (The stethoscope is considered a "beep-beep" as well.) It's cute, but sad at the same time, that he knows the routine. 
I know this blog is very random: but right now Noah's working on a puzzle of motorized vehicles and yelling "race car" and "helicopter," which sounds more like "heh-cot-ker." He just learned those words in the past couple of weeks. I remember sitting in a small office with his surgeon moments after he removed Noah's tumor, with him telling us Noah could most likely be a special needs child. He would have to re-learn to walk, talk, even move his arms. He said there were a few moments when he almost just had to close him up because Noah was loosing so much blood - they almost lost him. Now looking at him running, playing, screaming, singing, dancing, throwing a tantrum, being disobedient....I have to praise God. If I'm not chasing him around the house, at least once an hour I find him in the bathroom washing something in the sink - yesterday it was the DVD player remote - but in those moments of frusteration I am SO thankful that he is here for me to be frusterated with!
Just to be honest: I've been in a pretty low spot this week. I know I've written before about staying strong and focused by comparing our situation to others, remembering that our situation could be so much worse, and letting the Lord remind me of the bigger picture, and I still believe that. But this week I decided to just grieve my loss of normalcy, to just be angry, to just cry, to just let those emotions go that I've been trying to pretend weren't there. John and I talked about how it's getting harder and harder to answer the question, "how is Noah?" 'cause that question is so relative. Some days I can say, he's doing great for his circumstance. Other days I want to say, well, he has cancer, and his life is in jeapordy if these chemotherapy drugs don't do their job. And even if they do the job, there is still a chance that this tumor could recurr and metastasize to other parts of his body. Now, this is nothing against anyone who would ask about Noah...it's just that this journey is an EMOTIONAL ROLLER COASTER; some days are harder than others to keep my emotions in check. So it's probably best that I am a bit ostracized from the public right now! :) Anyway, that's where I am. I know the road is long, but I also know that my God is FAITHFUL to provide what He has promised...healing for my son, in one form or another. Last night He reminded me that I can grieve for a time, and I may be angry for a time, but joy will come in the morning. And it has.

"Therefore we do not lost heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." - 2 Corinthians 4:16-18

Don't focus on present suffering, but on His joy to come.

The pictures above are of Noah playing baseball on the Wii last night. He's a pretty good pitcher! :) We've had a lot of fun playing and just being together watching movies, etc. for the past few days since Noah and I have been under house arrest. We haven't had any visitors, even the grandmothers, for a while. We're trying to do everything we can to keep him healthy. When we left the hospital on Tuesday his white blood cell count was under 3000 (average counts for a "normal" person should be from 5000-10000). We go to Athens Hopital on Monday to check his labs again. Even if the counts look better, we're still not going to have any visitors; it's just too risky, after what happened last weekend. I'm not going to be getting out much either, in an attempt to keep myself well, and I will have my Germ-X with me when I do! John of course is around people everyday, but he's trying to take precautions as not to bring anything "unwanted" into the house. It's hard to do, but it's for the protection of our child and it's only for a season.

Noah's dr. spoke with me briefly before we left on Tuesday about the potential of genetic testing/research in the future. I am all for this, since the first thing I questioned when I heard Noah's diagnosis was, have I passed a "cancer gene" to my child? I've written before about my dad - he was diagnosed with an astrocytoma grade II when I was a child, and died in 1988 from it. His mother passed about 6 years later from breast cancer that had spread to her lungs and other areas. Her mother also had breast cancer and eventually died from lung cancer. Dana Farber cancer institue began a case study on my family shortly after my grandmother died, and found that she had Li-Fraumeni syndrome, which is a defect in a tumor suppressor gene and increases your risk of cancer. My died was suspected to have the syndrome, and I believe one of his five brothers was tested and has it as well...correct me if I'm wrong guys! All that being said, Dr. Hawthorne is very interested in my family history, and hopefully Noah and I will have some testing done in the future. She (Noah's dr.) did encourage me to be on the lookout and have regular dr. visits since I could potentially be a carrier of the gene.

I've been walking around the past 2 days with one of those sticky link rollers in hand...Noah's hair has started falling out and it's worse than a long hair cat! I'm constantly rolling his clothes, the pillows, basically anything his head touches...and his head. :) It's a game for him now. I'm guessing he will probably be completely bald within a couple of weeks.

We have been notified of several fund raisers that have been scheduled for Noah, and we are SO grateful to those who are organizing these events. The bills have started coming, and every little bit helps to offset the cost of keeping him well! I'll say it again - we have such an amazing community and are so thankful for all the support we've received. We thank the Lord for you daily, and ask that you be blessed in return. I hope everyone has a great weekend - try a time of "house arrest" with your family like we are...it's actually a lot of fun! :) We're going to get some takeout, watch a good movie, play some Wii baseball...good times. I'll post more after lab results on Monday. Be blessed!!

Just a quick note: We are home!!! We were discharged around 6pm last night. Noah's ANC went up after the transfusion, and hopefully it will continue to go up! We are going to Athens Hospital on Monday to check his counts again.
I'm slowly learning how to upload videos to the site...I will do my best to get more posted so everyone can see how great Noah is doing. I'm so thankful for all the support and prayers! Will post a full blog soon.

Dr. Hawthorne and Dr. Watts came by earlier this morning with the lab results; Noah's white count, platelet count, red blood cell count, and Absolute Neutrophil Count all dropped today, with ANC going from 36 yesterday to zero this morning (that's the one they want at around 500). So, he's going to have a blood and platelet transfusion sometime today (hopefully before lunch but our nurse said you never know how long it will take to get the blood). Good news - since Noah looks really good and he has energy, etc. we MIGHT get to go home tonight or tomorrow morning! They will monitor him during and after the transfusion and see how things go. John went back to work today but will come back tonight and hopefully get to bring us home. :)
I'm really glad we may get to come home, but I'm also nervous...since his counts are so low I'm going to probably go into overtime trying to keep the house free of germs! Please keep praying for Noah's health, for a successful transfusion, and for us all to have strength for today. God bless and I'll keep posting when I know more.

I don't know how to make a video update, and actually have no desire to so here is my plain old fashioned blog. :) Noah is sleeping soundly and I pray he does all night! Last night was a little rough; he was woken up by a blood pressure cuff around midnight and let the entire floor know he wasn't happy. Tonight I believe the order is to do vitals only when awake! He had a good day - white cell counts are gradually climbing, but the ANC is still too low for us to safely leave...I'm ready to get home but not at the jeopardy of my child's health. I'm not very medically minded, so I'm still learning all of these terms and drugs and side effects, etc. It's so hard to realize that even though Noah looks healthy, plays hard, has no fever...he is still sick and his body can't handle being exposed to anything that could possibly cause infection. So, we'll stay here as long as it takes. And apparently this will more than likely be the norm for the next five months or so. 
Thank you for your continued prayers, and I'll let you know what's going on tomorrow!

All is well - or "good enough," as John would say - here in the Crowe house! Noah is feeling a lot better than when he first came home from Chidlren's a week ago. About 5am the morning after we arrived home he began vomiting and couldn't keep any of his medicine down. Thankfully we got that under control around noon and he hasn't thrown up since! We've even stopped the Zofran and he is showing no signs of nausea anymore. His energy level is definitely not what it once was, so he takes more breaks during play time and he naps about 2 1/2 hours each day...but other than that our little guy has had no other side effects from the first round of chemo, thanks be to God. The nurse gave us a whole slew of things to be on the lookout for, from fever to bleeding from certain areas....so far so good. We returned to Children's this Wednesday for a follow up visit. We had to wait quite a while, but the wait was worth it. Noah's labs looked good, we were told. His white blood cell count is down, as expected, but platelet counts, kidney and liver all look good. I'll take him to Athens hospital on Monday to be tested again; we will more than likely do that twice a week. Noah has pretty much been on lockdown since the chemo treatments. Because his white blood cell  count is down he is at a much greater risk of serious infection, so I am asking that no one come by the house at this time, sick or not sick. I can't control much about this situation, but I can control how clean the house is and who comes in and out, so that's what I'm doing. (All the mom's know what I'm talking about!) Of couse John is back at work, and I still have to get out and do some shopping, but we are very careful about what we touch and we use hand sanitizer by the gallon! We also give Noah a shot every night to help keep those counts somewhat elevated...but we won't be suprised if they eventually drop to 0.
Back to the visit on Wednesday: Dr. Reddy's fellow, Dr. Hawthorne, did a short exam and explained the lab results. John asked her what she thought about Noah's recovery from surgery and his reaction to the chemo., and she said, "he is doing spectacular, and you are blessed." Praise the Lord! We credit his amazing progress to God, and to all the prayers that are being lifted up on his behalf every day. I don't know why Noah was chosen for this...but I pray that his continued healing and the answered prayers on his behalf will be a testimony to millions throughout his lifetime. I know in my heart that his little life has a big purpose, and knowing that helps me not to focus on the "problems" but on the good that has come from his situation.

What a day. We arrived at Children's around noon and rushed to the clinic for Noah's 12:15 appointment. We had a few set-backs with paperwork, etc. but made it for the MRI appointment just a few minutes late. The imaging staff was so nice and compassionate - I was able to go into the room where the machine is while they sedated him. He was still frightened, but in about 2 minutes he was falling asleep, and I quickly left the room so they could get started. I'm so glad I was able to have that experience; it will be much easier to let him go in without me next time since I know how quickly it all happens. After the scan we were admitted to a room on the 4th floor - "4 Tower" as they call it - and so it began. Our nurse (once again) was amazing and  we should also have her during the day tomorrow. Noah has a huge crush on her - he has flirted with her and serenaded her with his harmonica since the first moment they met. :) I honestly haven't seen him this energetic and full of life and joy in a while. I can tell the prayers are going up! He has been stuck in a crib entangeled with iv lines and has only complained a few times...that is a miracle in itself! 
The first drug he was given was called Etoposide; they had to stop about 15 minutes in because he was having a slow reaction to it. Typically the reaction occurs immedietly, but the Dr. on call came down and decided to try a "cousin" drug in the morning that usually doesn't cause a reaction at all. They had to make sure there was no blood in his urine, then he was given a drug called Cyclophosphamide. So far he has been ok with it.
It is after midnight and Noah is still awake. I hope he can get some sleep before the next round starts in the morning. I feel a lot less stressed now that we have started the treatment. If it's possible to have peace in the midst of the "storm" of stress/anxiousness, that's what I feel. The devotion I read today came from Mark 4:35-41, where Jesus is asleep in the boat with a storm raging around Him. His disciples woke Him up saying, "Do you not care that we are perishing?" He calmed the storm then asked them, "Why are you afraid? Where is your faith?" In the past few weeks I have prayed that God would give John and myself that calm assurance that Jesus had in the boat. He knew there was a storm, but he also knew that He had a much greater purpose and that storm would not kill Him. Calvin Miller stated in the study, "Peace:" Can it be that most of our lives are lived without this recognition? Doesn't God have much more for us to accomplish? Should not our own security in troubled times come in remembering this? We have God's living Son on board in our lives. Therefore, we may have confidence that in our own stormy situations He will calm the turblence and give us the confidence of His presence. Then, once our storms are all at rest, like His disciples we may remark, "What manner of man is this Jesus that even our private tempests are subject to His calm?"
Praise be to the Lord for the peace that He gives, and for protecting Noah today. Thank you for your continued prayers...we will post more tomorrow/ as soon as we're able. God bless!

"Joy is more than a sense of the comic, more than earthly pleasure, and to a believer even more than what we call happiness. Joy is the enjoyment of God and all the good things that come from the hand of God." - Sherwood Wirt
I can honestly say that I have experienced more joy in this Christmas season than I have in seasons past. We spent Christmas Eve with my extended family and Christmas day with John's. Watching Noah interact with everyone and play with his new toys is just like watching any other normal 2 year old. His recovery after the surgery really has been phenomenal. His physical therapist commented today that his motor skills are where they should be for his age, and his hair hasn't even grown back yet (referring to the time it normally takes to recover). He has recovered really well, and John and I are very lucky, she said. We're not lucky...we're covered in prayer!
Because it has been such a wonderfuly normal past couple of weeks, I had pushed Noah's situation to the back of my mind, only to be reminded today that our Birmingham trip is quickly approaching. With that realization came the temptation to worry and fear. Chemotherapy is such a scary word, and with it comes so many unknowns. John and I are about to lead our son down what appears to be a dark path; I've read so many stories about how chemo affects children, and each one is different. We don't really know what we're getting into. It is here where there isn't any light showing us where our next step will lead that we must cling to the Light of the world. I have to keep reminding myself that He knows...and that is all that matters. I can only pray in faith, and that is what I'm doing - praying that the MRI will reveal there is no residual tumor and chemo won't be needed!
I write all this through tears, because I am really struggling to fight this fear. The enemy is trying to steal my joy, but I am fighting hard to keep it. When you pray for Noah, please also pray for me and John. Noah is so intuitive, and he knows me well...I don't want him to sense any fear from either one of us. We have got to be strong for him - be warriors for him. Pray for the Lord to encourage us and replace our weakness with His strength.
Noah won't be able to eat after 7am on Wednesday, and we are scheduled to begingthe 3-day process at 12:15pm. Noah's port will be accessed for the first time, and I'm unsure how he will handle that. After the MRI he is scheduled to begin the treatments. As always, John and I are so thankful for everyone who reads our blog and prays for our comfort and Noah's healing. We will try to post a blog as soon as possible after we get in a room on Wednesday and know exactly what the plans are. Happy New year to all and may it be blessed and filled with joy only the Lord can give. :)

The Lord is my Light and my Salvation - whom shall I fear? The Lord is the stronghold of my life - of whom shall I be afraid? When evil men advance against me to devour my flesh, when my enemies and my foes attack me, they will stumble and fall. Though an army besiege me, my heart will not fear; though war break out against me, even then will I be confident. One thing I ask of the Lord, and this is what I seek: that I may dwell in the house of the Lord all the days of my life, to gaze upon the beauty of the Lord and to seek Him in His temple. For in the day of trouble He will keep me safe in His dwelling; He will hide me in the shelter of his tabernacle and set me high upon a rock. Then my head will be exalted above the enemies who surround me; at His tabernacle will I sacrifice with shouts of joy; I will sing and make music to the Lord. Hear my voice when I call, O Lord; be merciful to me and answer me. My heart says of you, "Seek His face!" Your face, Lord, I will seek. Do not hide Your face from me, do not turn Your servant away in anger; You have been my helper. Do not reject me or forsake me; O God my Savior. Though my father and mother forsake me, the Lord will receive me. Teach me Your way, O Lord; lead me in a straight path because of my oppressors. Do not turn me over to the desire of my foes, for flase witnesses rise up against me, breathing out violence. I am still confident of this; I will see the goodness of the Lord in the land of the living. Wait for the Lord; BE STRONG AND TAKE COURAGE AND WAIT FOR THE LORD. - Psalm 27

I didn't post when I said I would...again. Sorry! John and I haven't heard much about the radiation report, which is more than likely good news. The lawyer had his "expert" take a look at it and he didn't seem to think the levels were too high, and we haven't heard from the oncologist yet. Noah's bald spot seems to be growing larger, and now we have no clue what could be causing it.
Other than that Noah is still doing great. He's as active as ever, and is really getting into Christmas. He loves opening all the gifts he's been receiving, and now he thinks that every gift under the tree is for him. I've had to re-wrap several times. :)
We've been to the store a few times and have been stopped by several people. I want to say thanks to those who approach us to see how Noah's doing and to let us know they're praying for us; it means so much that our community is standing behind us and is lifting us up in prayer. Just wanted to let everyone know we haven't officially heard anything on the radiation report, but we'll post another blog as soon as we do. I hope everyone has a blessed Christmas!

You're probably wondering why I posted this picture of the back of Noah's head. I'll get to that in a bit.
First I'd like to apologize for not posting anything in such a long time; we've had a week of PT/OT visits, Christmas shopping/preparation, and just normal life stuff. John and I had a great anniversary dinner at Ruth's Chris (we're high cotton now - thanks Abby & Courtney!), we fought the wait-'til-the-last-minute-to-buy-your-Christmas-gifts-traffic in Huntsville, and we took Noah to Santa's Village (where we did not see Santa), then ran into Santa at our church on the way home. Noah likes him from a distance but did not want to get close, so I'm glad we didn't wait in the line to see Santa while standing outside in 39 degree temperature!
 I posted the picture above because John and I noticed a small patch of Noah's hair had worn away (a few days ago) and last night we realized the small patch had grown to be a 1x4" area that looks dry and irritated. We had no clue what was going on (why would his hair just randomly fall out?), and we remembered a report on a local newstation about a woman who suffered hair loss (among other things) due to over-radiation from a ct scan at Huntsville Hospital. The hospital is being investigated right now, and we have contacted a staff member about this situation. Some people may think we're being paranoid by assuming he could have been given too much radiation, but it's happened to 60 other people in our area, and with everything else Noah has been through that "typically doesn't happen" we decided it's best to check into it. We are going to the hospital at 10am tomorrow to pick up a report that will tell us how much radiation he was actually given during his ct scan. If he was mistakingly given more than the normal dosage, this will mean that Noah was given too much radiation in his ct on Saturday 11/21 and then was burned during his MRI procedure on Sunday 11/22. I'm praying this was not the case. This could also more than likely affect his chemo. schedule which will start on Wednesday 12/30.  John has spoken with a lawyer who is handling many of the other cases that have occured at Huntsville Hospital.
 I have no idea what else could cause Noah's hair loss. Because of everything that has happened to him, I am assuming the worst possibility...please pray that whatever has caused this will not affect anything else in his body. If you have any other suggestions as to what can cause this  please let us know. We will also contact his dr. in Birmingham in the morning about this situation. Please pray for God's will to be done in this. Hopefully our instincts are wrong and it's nothing to worry about!
I will do my best to post an update on this situation tomorrow afternoon/evening after we have more info.
I hope everyone is having a great Christmas week, and remember the "Reason for the season!" Tonight John and I were discussing how this "holiday" has become something it shouldn't be; I hope this year will be free of stress and full of joy and peace....and family. We have 2 miracles for praise God for this Christmas - His son...and our son. :)

*We also apologize for the video error...John is working on getting that fixed.

We had a good day today - Noah's arm is healing nicely, so Dr. B. gave the ok to go ahead with treatment. We didn't actually have an appointment to meet with Noah's oncologist, but we stopped by her office anyway to see if our results were in. Thankfully we got to speak with her! Here is what we found out : the results of the lumbar puncture were clear of any cancer cells. The results from Dr. Burger at John's Hopkins were different from the original pathology report. He found that Noah's tumor is a choroid plexus carcinoma; we were told this is very rare. (WebMD reports between the choroid plexus papilloma and the choroid plexus carcinoma, "these types of tumors account for 0.4% to 0.6% of all brain tumors, 2% to 4% of brain tumors in children, and 10% to 20% of brain tumors manifesting in the first year of life. Papillomas outnumber carcinomas by a 10:1 ratio. ") Only 2 children in the past 8 years have been treated at Children's in Birmingham for this type of tumor. The same treatment regimn has been used on both children, and will also be used in Noah's case. We are confident in the ability of Noah's oncologist to choose the best treatment for him. We were told this is an aggressive, fast-growing tumor. The best form of treatment is surgery/chemotherapy. Since Noah has already been through surgery, our next step is chemo. He is scheduled to be admitted on Wednesday 12/30 to begin his first round of treatment (of at least 6). Each round will require a 3-day stay in the hospital, then 4 weeks later he will go through another round, and so on. Also with his first treatment he will have another MRI to see what kind of residual tumor is there....we're praying there will be NONE! If they do in fact find any "leftovers," they will wait until after round 3 of treatment to go in again, with the hopes that the chemo will have reduced blood supply to tumor (since it is so vascular) and will be easier to remove. Now, you may remember that after the last MRI Noah's neurosurgeon commented that he believed they may have removed most of the tumor. I realize that he has to choose his words wisely, and that this next MRI will reveal better how much tumor he actually removed...but we're still believing that it's completely gone! Back to the treatment: we have been given some information on 3 different drugs that will be used in Noah's treatment, and the side-effects that most likely will follow about 5 days after treatment. We are asking that you now pray not only for Noah's tumor to have been completely removed, but that the chemo will not have the typical affect on his body and it does on most children. We are asking God to keep him healthy, energetic, strong, etc. throughout the duration of this treatment.
Today was a sobering day, but a good day. Noah responded well to all the medical staff, he did great during the long haul back and forth to the hospital, he even lasted through about 30 minutes of our church's recognition dinner tonight. When we finally arrived home, he played the drums, "sang" and "played" his guitar, hit the baseball off the t a few times, ate some ice cream, hammed it up for my mom's new video camera....you would never guess my little man was ill. And that made it a good day.
Once again, thank you for your prayers, support, and love. Our story should print in the new "Athens Now" this week for those in our community that haven't heard our story. I pray Noah will continue to bring encouragement and hope to those who are searching for it...and I pray he will point many to the One True Source of hope - Jesus Christ. May God bless you! 

It was been 24 days since Noah's tumor was discovered, 21 days since his tumor resection, and 13 days since we've been back home. The past three days have felt (almost) normal! Saturday we laid around most of the day, did a little shopping, had some friends over. Sunday John was back in the saddle leading worship and Noah made it through the entire service. We had lunch w/ my family at my grandparent's, then took a fun family outing to the big city of Huntsville. :) Today was Noah's 6 month check up at the ENT; ear tubes are still in, and they look great. Praise God for that! He is doing MUCH better with allowing "outsiders" into our home, and going into large groups of people. When we first came home from the hospital even familiar faces (grandmothers, aunts & uncles, etc.) would cause him to panic and cling to me. I'm so glad that is over and he feels safe again. Hopefully John and I will be able to leave him with my mom on Thursday for our 4th anniversary dinner. :) 
Today Noah began to have a little hop in his step, as if he is trying to run. He's moving pretty quickly now. It's amazing to see when I think about where we were 25 days ago, wondering what was wrong with him. We are still waiting on the definitive pathology report from Johns Hopkins, and the LP results. I'm praying those will be ready when we go back to Children's this Wednesday for Dr. B. to check out his arm.   
 Today I have a little girl (EB) on my mind...she also was diagnosed w/ a brain tumor, and was still in the PICU on Friday after a surgery complication. Please pray for EB. A man from church, Bobbie Lassie, is awaiting results from a CT scan...there was a mass discovered on the R side of his brain. Please pray for him also. I trust God will work miracles in both these situations.
"God has not given us the spirit of fear, but of power, love, and of a sound mind" (2 Timothy 1:7). Over the past 24 days I have experienced a myriad of emotions...one of them being fear/anxiety. But each time this feeling tried to take over, I was reminded of this verse. I knew I had to have a clear head to share with John in the decision making process. The Lord has reassured me so many times of His soverignty, even in the midst of chaos and confusion. The devotion I read today reminded me that we need not fear "because greater is He who is in you than he who is in the world" (1 John 4:4). If I attempt to look too far into the future, I become overwhelmed with "what-ifs" and begin to loose my head. I just keep telling myself to take it one or two days at a time. Right now Noah is sticking a plastic drum stick up his nose, and shouting, "ho, ho, ho!" I'm praying that he will still be able to do these things after we start chemotherapy. But I'm not going to worry about or fear the upcoming treatment. I may be tempted to, but that is just a thought I can take captive and put out of my mind. (Remind me I said that!) I don't know what is causing your fear or anxiety today, but no matter how "big" or "small" it may be, you can take that thought captive and cast it into the sea. Ask God to lead, and think of those two scriptures above with me, and we'll kick the enemy, together, right in the face. I hope everyone has an amazing week! We will post a blog as soon as we hear anything about the reports. God bless!

Friday was a LONG day. John, Noah, and I were on the road at 6:30; were we told to be at Outpatient day surgery by 9:30. We walked into the day surgery registration area around 9am, filled out all the necessary forms, got Noah's vitals...then we waited. And waited. AND WAITED. By noon, Noah was starving and constantly asking for milk. (He hadn't eaten or drank anything since 830 the night before.) We were finally told that Noah was #5 on a list of 5 people his surgeon was working on that day. Despite his discomfort, Noah did well during the waiting and John & I were able to keep him entertained for the most part. At 1 pm we were finally called into an outpatient room. Then we waited more. Around 2pm a nurse came in and asked a few questions, and informed us that we were actually scheduled for surgery at 1pm and Noah could have eaten breakfast. About this time I was really losing my patience and becoming angry. Noah did not go back to the o.r. until 3:30. He had his burn excised (sp?) and stitched together, a port was placed through the area around his collar bone and threaded to an artery, and he had a lumbar puncture. We should receive the reports from the LP and Johns Hopkins around the same time - middle of this next week. We also go back this wednesday to have Dr. B check out the burn site. If it is healing  properly, and we have results from the tests, we should be clear to begin chemo.
We were told Noah did really well; all the procedures went as expected - he didn't need a skin graft!! So we were able to be discharged last night, and we drove home while Noah devoured several mini packs of Pringles and lots of milk and ice cream! At this point - I'm just glad he eats. :) He is doing great - right now he is walking around with a basket on his head and playing the drums.
Yesterday mine and John's patience was tested to the MAX...but we did ok. We had a small explosion occur when Noah returned from recovery to his room - we discovered staple marks in several places. The nurse explained that the drapes are stapled to the body to hold them in place. We never realized this was common procedure in the o.r. so we had to have to Dr. paged to explain it in detail. We now realize it is for the patient's protection from infection, etc. But when John saw those small knicks on Noah's legs and stomach, it was all he could do to keep his hands to himself. I was proud of the way he handled the situation. (Before that we had been told by a different Dr., once again, that the investigation board was not certain they had found the cause of Noah's burn, and they may not ever come to a definite conclusion. That was like throwing oil on fire.)  All throughout the day I had to keep telling myself that other people have been in our shoes...and much worse. We can make it through this, and we can do it in a godly way. We just had to keep asking the Lord to guide us...and it ended up being a great day - Noah did well in surgery; he didn't need a skin graft; we were able to come home to our own beds.
On a different note - Thursday I was making preparations for our trip to Birmingham and decided to take our cat to the vet (she had fleas and needed shots). I dropped her off and planned on leaving her for the night since we wouldn't be home. I received a call from Dr. Pitman around 5 - our cat had FIV, or kitty AIDS! He told me that with all we were going through we didn't need this, and Noah definitely did not need to be around her; he could get a bacterial infection. Jones had to be put to sleep...another unexpected bump in our plans. Dr. Pitman so generously offered to take care of her for us, with no charge, and bury her little body so we didn't have to come get her and worry with that. We are SOO grateful to him and his staff for having compassion on us and helping us out in this way. During our wait yesterday, I discovered online that only 2% - 3.5% of all cats in the US contract FIV. 2%. I believe that we heard about 4-5 times yesterday, "this typically doesn't happen but you should be aware of this risk...." I don't want to hear that anymore! For the past 3 weeks events that have occured in our lives "typically don't happen." They told us there was a small chance that Noah's lung could be punctured during the port procedure...I prayed really hard during this surgery! Praise God that He kept Noah safe and everything went well.
I don't know why these strange things keep happening...why God has allowed them to happen. But I do know that John and I will continue to call on the name of the Lord, because He is the source of our strength. If we didn't have Him, His word, and our brothers and sisters in Christ we would be crazy!

The Lord has really been using these hymns to speak to my heart...Because He Lives is another that came to mind this morning. I remember singing this with such sincerity just after I became a Christian at age 17. I weep now as I read ALL the lyrics...
God sent His Son, they called Him Jesus; He came to love, heal and forgive
He lived and died to buy my pardon, An empty grave is there to prove my Savior lives
How sweet to hold a newborn baby, and feel the pride and joy he gives
But greater still the CALM ASSURANCE this child can face uncertain days because He lives
 And then one day I'll cross the river I'll fight life's final war with pain,
And then as death gives way to victory I'll see the lights of glory and I'll know He lives....
Because He lives, I can face tomorrow; Because He lives all fear is gone...
Because I KNOW He holds the future, and life is worth the living just because He lives!

The constant reminder that God holds my son...our son...in the palm of His hand, that His protection surrounds him, that I can have calm assurance knowing that because Jesus lives Noah doesn't have to worry about his future...this gives me peace and floods my heart with love.
This is becoming my online journal I suppose, but I had to this down. He is so good and constantly giving us encouragement through many different ways. It's going to be a good day! :)

I was excited about writing the update tonight but John beat me to it. :) Once again, we had a pretty emotional day, and like John said it's hard to realize that our child has cancer. He had such a fun evening with his Mimi, laughed and chased balloons as John would blow them up and let them fly every which way across the living room, turned his nose up at a grilled cheese and requested just potato chips (becoming an every day staple, much to my chagrin). We picked up a super nice gift that a high school friend sent to Children's for him, and played with the puzzle for about 5 minutes, then he discovered the box it came in...the puzzle was history! He seems like such a normal 22 month old (aside from his ginormous scar) until I remember, this kid has cancer. I realize that in about a month I will be reminded of this truth every minute of every day if chemo. takes it's toll on him like it does so many others. And you know what is sad?? We are not alone in this predicament. Thousands of children are diagnosed w/ brain cancer every year. And I never knew that until now. I feel like I've been called to action to alert the world that this is serious, and it's probably in your backyard, or just down your street.  I don't know how I will do it...but I just want to reach out and hug any parent who has ever wept over their child, begging to take their place, pleading with God to move the cancer from the child's body to their's. It's the most helpless feeling I've ever had.   
We have a pretty "musical" family; we loves all genres. John and I both grew up immersed in anything music related, and we want the same for Noah. Right now he loves Michael Jackson and will dance around the house yelling, "Woohhh!" when he hears his favorite song. I've just recently picked up playing the piano again, so I was thumbing through my old Baptist hymnal, butchering most of the songs I attempted to play. :) I came to one that I'm sure is an old favorite for many. The words brought tears to my eyes, and I was encouraged in a way I never have been before by this great melody. Christ is my Rock...I will not be shaken by disappointment or grief, anger or sorrow. Here are the words penned by Edward Mote:
My hope is built on nothing less than Jesus blood and righteousness,
I dare not trust the sweetest frame, but wholly lean on Jesus name.
When darkness seems to hide His face, I rest on His unchanging grace.
In every high and stormy gale, my anchor holds within the veil.
His oath, His covenant, His blood, support me in the whelming flood.
When all around my soul gives way, He then is all my hope and stay.
When He shall come with trumpet sound, oh may I then in Him be found.
Dressed in His righteousness alone, faultless to stand before the throne.
In Christ the solid rock I stand, all other ground is sinking sand, all other ground is sinking sand!

I hope these words speak to someone else who is trying to stand strong in the "flood." He is our Rock!

I (Jess) received a call from Noah's neurosurgeon at exactly 1:46pm. These are the findings: Noah has a malignant tumor, it's called a Primitive neuroectodermal tumor (PNET). It turned out to be what Dr. Wellons suspected during the surgery. They have sent the sample on to Dr. Peter Berger (sp?) at Johns Hopkins to review for confirmation. He said there were lots of different cell patterns in Noah's turmor, and I don't know yet what that means. The tumor board at Children's is putting together a plan of action, will include surgeons, oncologists, radiologists, therapists, etc. I have no doubt that Noah will receive that best care possible. Dr. Wellons was hopefull about the scan after the surgery, that they removed most if not all of the tumor, so that is the hope that we have now. We are going to Birmingham tomorrow to meet with about the plan for his burn, and will also possibly meet with the neurologist, Dr. Reddy, while we are there. We will wait until we receive word from Johns Hopkins before Noah begins any treatment, and let his incision heal. As I'm typing this Noah sits in his high chair, eating Pringles, and laughing hysterically at his silly dad. :) He is always so happy...just looking for something to laugh at. Because he is so young, he has no clue what the future holds; he is oblivious what treatments lie ahead, and that is the best place for him to be. He just wants to laugh at life, and I'm praying that we can laugh our way through this battle. We're still believing for a healing, however long it may take. Thank you for praying, and continue to pray for healing in Noah's body! 
A quick note about my statement of being disappointed about the news segment last night: I was frusterated that we had so much good to say and it wasn't broadcasted. I do however want to thank all of the staff for the hard work they put into the segment; I know it wasn't easy creating a story from nothing in a matter of 4 or so hours.  Maybe in the future we can do a story on the miracles that have occured as God is bringing us through this difficult situation. Anyway, I appreciate the channel 19 news team and apologize for my candidness last night. :)
Here is a short excerpt from a book we were given at Children's called Childhood Brain & Spinal Cord Tumors, a Guide for Families, Friends, and Caregivers by Shiminski-Maher,Cullen and Sansalone: "PNET and medulloblastoma were once considered the same type of tumor that arose in different locations in the brain. Historically, medulloblastoma was the name given to this tumor when it grew in the posterior fossa and PNET when it grew outside of the posterior fossa in the cerebral hemispheres. For many years, the two names were used interchangeably regardless of where the tumor grew. Recent research has shown that the two tumors are biologically distinct. However, they are usually treated the same, although some institutions are using high-dose chemotherapy with stem cell rescue to treat PNET."
I will post the excerpt about medulloblastoma later tonight; I'm sure you can find tons of information online also. We still have hope, and we still trust God's plan for us, and we still believe Jesus is Noah's healer. Praise God for His soverignty; we don't have to worry about this.

This is Jess - adding to what John wrote earlier tonight: I have to keep saying thank you for the emails. I feel so at peace about whatever the outcome of the pathology report. God has encouraged, given us hope, peace, and comfort through scripture and the emails of His messengers - you.
John posted on facebook that a guy from newschannel 19 showed up at our door today around 1pm - unannounced by the way - and wanted to do a story on Noah. We accepted, and suprisingly Noah cooperated during the entire shoot! We talked mostly about the miracle of Noah's story and how the Lord has helped us through the entire process. We talked BRIEFLY about the burn Noah received. What we saw on the 6 o'clock news only spoke of the burn Noah received, and hoped the 10 o'clock news would offer up the ENTIRE story, but that didn't happen. I guess "controversey" is all that they were after. I'm deeply dissappointed in the outcome of the interview; I've been very nervous about the entire burn situation with the Athens newspaper and now the local Huntsville newstation becoming involved. Children's Hospital helped to save my son's life, will continue to treat his medical condition, and I want no ill repute with them. We've given them an opportunity to make this right without taking legal action, and I have faith that they will. I just hope that they don't feel that we have instigated these reports in order to make Noah's situation more "public."  
That being said, I'm off to bed. :) We should receive the pathology results in the morning - keep praying! We will post the news as soon as we have it! Here is a scipture that has comforted many times in my Christian journey, and I'm falling back on it tonight: "Wait on the Lord; be strong and take courage and wait for the Lord" (Psalm 27:14). He hasn't failed me yet - and I know He never will. So I will wait on Him to bring good news in the morning!

Jess

Well folks, we are still waiting for the pathology report. We will be calling the Doctors office in the morning and should have the answer.  Thanks for praying and checking in. We wait for good news!!!

John

It is about 10pm, my little man is sound asleep in his bed, my sweet husband is playing a song he's recently composed on his guitar, and I am in my favorite place to be...home. :) I haven't actually blogged in several days due to sickness and just plain being busy and tired. So here is what's been going on: Wednesday morning we anxiously awaited the neurology team to makes it's rounds. When they finally came by our room, Dr. Wellons said Noah looked good, we should watch the swelling, etc. and we're free to go! After being discharged, we headed for the parking garage and I don't think Noah had ever been so excited to see the car. He ate Cheetos and french fries on the way home (so nutritious), and got about an hour nap. We arrived home to find that some "elves" had rummaged through our attic and decked our home from top to bottom, inside and out! What a relief to not have to worry with putting up "Christmas," and Noah had a festive, peaceful place to come home to. We have some amazing and thoughtful friends! :)
Being home has been great; there is now some normalcy back in our lives. Even so, I've realized that nothing will be normal again. All day long John and I have been jumping at the sound of the phone ringing, hoping it would be Dr. Wellons or his nurse with the pathology results...no such luck. So, we'll just keep praying and expecting good news to come tomorrow.
Oh, by the way, Noah decided to walk last night! He slid off the couch, grabbed John's finger, and took off to change the DVD he was watching. Still a little wobbly, but he was pulling up his left leg, and placing a considerable amount of his weight on it. (A HUGE improvement from even Tuesday's PT session.) Praise the Lord, this child will be running before we know it.
For some reason, tonight I am at a loss for words as to what I should write in this blog. The only thing in my mind right now is the scripture from Matthew chapter 17: "When they came to the crowd, a man approached Jesus and knelt before Him. 'Lord, have mercy on my son,' he said. 'He has serizures and is suffering greatly. He often falls into the fire or into the water. I brought him to Your disciples, but they could not heal him.' 'O unbelieving and perverse generation,' Jesus replied, ' how long shall I stay with you? How long shall I put up with you? Bring the boy here to Me.' Jesus rebuked the demon, and it came out of the boy, and he was healed from that moment. Then the disciples came to Jesus in private and asked, 'Why couldn't we drive it out?' He replied, 'Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, Move from here to there, and it will move. Nothing will be impossible for you.' " (v14-23).  Right now my husband is praying ceaselessly for our son. Cancer is our demon. We are believing in faith that the Lord will drive it far from Noah. We know this mountain can be moved by our faith...if the Lord choses to grant us that. But if He doesn't....we will still continue to fight this battle, knowing that He alone is faithful. This is a daily battle and we are so grateful for all the prayer warriors that are fighting with us. We can't do this on our own, and we praise God for the support that has been given by so many. Because of the prayers of faith of so many, maybe one little boy will receive a healing that will bring glory to the Lord even beyond the days of his life...this is my prayer of faith.

We are now home. I apologize for not writting last night. We were both so tired and so enjoying being with little man we went to sleep without really unpacking.

Jessica is going to write the big blog tonight. I mainly wanted to tell you about something the Youth Group at our home church - Friendship - is doing. To help remind people to pray for Noah and help offset Noah's medical cost, the youth ministry is asking for a $5.00 donation for the PRAY FOR NOAH bracelet. The color grey represents brian tumor awareness and research.  

If you would like some of these bracelets, you may contact Friendship Church in Athens Alabama 1-(256) 232-4906 or email the youth Pastor Jody Hooven Jody@friendshipumc.org 

Thanks for all of your prayers and encouragement and contributions. God has really shown Himself faithfull through all of this.

We serve and awesome God!

John David

Sometimes you have to laugh at your situation. Noah's head is full of stitches and he has a tube coming out of the top draining fluid off his brain. He doesn’t need to touch any of it so they have this net around his head. Jess and I laughed because he looks so funny with it on. I thought about that guy from Fat Albert. It's not the same color, but if I can figure out a way to cut holes for his eyes - it might just be the funniest picture of him yet. He was eating Pringles when I took this and he was pretty serious looking while doing it. That just his style - He's tough and there is no denying it!

Well we are in our room tonight free from alarms, buzzers, phones and constant light and talking. Noah has been in a room (the PICU) with 24 hour light for 6 days straight. He also heard constant talking and noise so needless to say he is completely exhausted. He has slept so well this afternoon and we are so thankful.
 
We have made it through some pretty big hurdles this last week. We are breathing a sigh of relief right now because of the blessing of being with him in a room 24 hours a day and the peace that comes with it. It is a great room with a good place to sleep for one of us and a very nice bathroom.

The big hurdle comes next. Noah had a tumor - which could mean cancer. His pathology report comes back this week.
We are asking for every person possible to pray and ask everyone they know to pray for a negative report of cancer. We do not know what day the report will come but until then - Everyone pray!

He has recovered so well which is only because of His heavenly father. We believe his recovery will continue and be a testament to all who hear that the God we serve is indeed the one true God and that He still works miracles!

 

 

"And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." -
Philippians 4:7

Ahhhhh.....It's about 1 pm and Noah is sleeping soundly in his own room! Praise God! John and I feel as if 5 pounds of burden have been lifted from our shoulders. The lights are low, it's quiet...no screaming, no beeping...just peace.
Early this morning Noah had a ct scan, Dr. gave the ok, so we're free from PICU! They removed the turban, as you can see in the picture, but he will keep his drain in for as long as it's needed. John wants to shave the other side of his head and leave a mohawk....we'll see. :)  One of the neuro surgeons stopped by the PICU this morning before we moved, and really encouraged us that Noah is progressing very well...his words were "considering the situation, he's doing wonderfully." We are soooo blessed, and we're giving thanks for the "win" we've had today.
We are in room 687, but we've decided not to have any visitors today until Noah gets settled in, used to the new room, and until he understands that either Mommy or Daddy will be with him at all times. Hopefully when he wakes up we can clamp the drain, find a comfy chair and I can hold him for a while...it's been 5 days. Last night and this morning were really rough for me, as far as thoughts and what-ifs...I was remembering times when Noah had wanted me to play with him, or hold him, etc. and I had "other  important things" to attend to. My arms, and my heart, ached for him. As far as "what if's" go, I've been reading some material we were given by our social worker on brian tumors - statistics, types of tumors, etc. - and this new education is doing a number on my mind. I don't think I've mentioned this before, but my father passed away when I was 6 years old from a brain tumor. Needless to say, when I hear those words I equate them with death. When I first found out about Noah, I really had to rely on the Lord to sustain me - mentally and physically. I know medical science has changed so much in 21 years, and it really is amazing how people can recover from this situation...but the enemy is using that experience in my life as a means to impart doubt.  So I have a constant battle in my mind, but for seven days I have won (the God of peace will soon crush Satan under your feet, Rom 16:20)!  I know that my son is beyond a statistic, because John and I have placed his life and his spirit in God's hands. The Lord is working in him, and apparently THROUGH him...He is turning what could be a bad situation into good, for HIS glory.
Thank you for your continued prayers, and we will continue to keep udating the good news!

Thursday - 5pm

I realize that Jodie sent out a prayer request for Noah - please don't worry it's not life or death. John and I have had a REALLY rough, stressful day. As I mentioned early today Noah has been very hard to console. I believe he's in some pain, and it's possible the steriods have made him pretty much miserable, and very hard for us to deal with. When John sent the message we had been in the PICU with him since 7am, we were standing up hunched over his crib for hours, stressing out, trying to restrain him from ripping out IVs and hitting his head, biting his fingers, etc. It took both of us to try to keep him calm. So we were at our ropes end at that point (neither of us had eaten much or drank much). The nurses have given him several different drugs to try to minimalize his pain and calm him down; they really haven't had that much of an effect. The PICU dr. contacted neuro. surgery and they said since his vitals were fine, his drainage levels were fine, that he should be ok. He's still getting saline to raise his levels, but they had to put a tube in his nose to administer it since he wouldn't swallow it. Anyway, John and I are struggling today. Still praying, standing on the word...but it's been a little harder. We appreciate your prayers and we'll keep you updated on our little boy!

Wednesday Update - 650pm

Because of lack of time,  I have copied and pasted an email from our church contact, Celia. John contacted her earlier today to give Noah's status. I'll also quickly add that as of 615 pm, Noah had been extibated (sp?) and was really moving his limbs; he took his passie out with the left hand and handed it to me....He was aware that John and I had to leave so started crying , "Mama! Mama!" then he also said "Dada! Dada!" Praise God! We were told that he may not be able to speak for a while due to the part of the brain that the surgeons had to go through. He was also able to communicate that he wanted some milk. And once he shook his head no when I told him he  needed to go night night! That is SOOO Noah!! So, needless to say, we are praising God for His faithfulness and for healing. He is good!! I will do my best to post more after visiting hours are over at 10pm. Once again, thank you SOOOO much for all of your prayers, and support, and for loving my little boy. He's going to be ok. God bless!!


Friendship Family,

 

As we rely on God today for everything, I share with you a scripture Jessica Crowe shared in their blog regarding Noah:  “Many are the plans in a man's heart, but it is the Lord's purpose that prevails.” - Prov 19:21

 

We spoke with John David a short while ago. I quote John David, “This is a VERY GOOD day!!!” They have just met with the surgeon who says that from the MRI, it looks like they got ALL of the tumor!!!!!!!!!!  Also, and very unexpected, they see signs that the brain is moving back over into it’s normal position!!! Also, tests are showing that his motor function is better than the surgeon expected it to be!!! They will be taking Noah off of the ventilator later today and he may even be moved to a room (out of PICU) tomorrow!!!! AND, the surgeon is now not expecting Noah to have any more surgeries during this hospital stay!!!!!

PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!!!!

 

Please continue to pray that Our LORD will restore all of Noah’s motor function and speech and that God will be glorified in this! Pray as well for strength and perseverance for John David, Jessica and all of their families.

Update Tuesday 7:44 P.M.  - John David

Well folks, I was right - today was the worst day of our life - and also the best

We got a good report from the nurse around 2:00 that told us Noah had done well in the surgery and that the doctor had removed most of the tumor. We praised God and rejoiced in the good news

An hour later, the lead surgeon Dr. Wellons came out to meet us - and to take us to that private room - again.

Its hard to explain how long it took to walk 50 yards.

He sat us down and began telling us about the procedure. As they removed the part of the skull they noticed that the tumor was more agressive than what theyy had hoped. They had hoped to enter the inside of his brain through a small portion on the top left side. The tumor grew inside the middle of his brain. As they developed their game plan, they knew a tough decision had to be made. They had to remove the part of Noah's brain responsible for movement on his right side and speech in order to get to the tumor to remove it. Once they could see it they did say it was every bit as big as a grown mans fist. He told us only 5% of brain tumors in children ever get this big. If we had'nt taken Noah to the hospital on Friday and they had'nt found it and began steriods to stops it's growth, He would have been dead by Sunday.

The tumor had aggressivley attached itself to key parts of the brain and had several veins going through it, They had to work meticulously and slowly as a team to make sure noah remained stable. As the surgeons cut away parts of the tumor, they would have to stop frequently to put blood back in his body and get his blood pressure back to normal. It was very orchestrated  - very good teamwork. Noah lost 1 1/4 of his total blood volume.

At a certain time during the surgery the doctor said he made it to the top of the brain stem. It was at the point much of the tumor had been cut away - especially the parts that supply it with blood. Tumors begin changing color as they loose blood and it became difficult to tell what was brain tissue and what was tumor, so they stopped, sewed him up and got him ready for recovery.

Here is the bad news. A tumor that looks as agressive as this one does usually means it is malignant - cancer. We will not know for sure for 5 days at least. An MRI will be preformed tommorow so they can see just how much is left in Noah's brain.

This will be a process - and we have jummped the frist hurdle in a long race. 

Tonight, Noah is stable in the PICU. He is on life support to breathe for him and to help him maintain good blood presure  and other vitals. He is still asleep and will remain asleep until after the MRI which will not happen until after 11:00.

Jessica and I felt like we had all of the wind knocked out of us in that room. We stayed together there after the doctor left trying to figure out how we were going to tell our family and friends waiting in the lobby for us. It was so hard just to put one foot in front of the other, much less stand, as we walked to the crowd.

An old school friend of mine, Rachel Bobo Faulkner, sent us a message. She has seen tremendous loss and heartache in her life and I have respected her for years because she has kept faith in the midst of horrible circumstances. Her encouragement was "God has chosen those He trusts for His glory."

We know God is being and will continue to be glorified through Noah's life and testimony. God is going to "Show Off" using Noah!  God choose us to go through this. Asking "why me ?? " is useless - the answer is always "For God's Glory"

We are so exausted - I have never talked so little in my life - I have no words to say.

We know all things work for good for those who love him and are called according to His purpose.

The scripture we are standing on today is Hebrews 12:1-3
1 Therefore we also, since we are surrounded by so great a cloud of witnesses, let us lay aside every weight, and the sin which so easily ensnares us, and let us run with endurance the race that is set before us, 2 looking unto Jesus, the author and finisher of our faith, who for the joy that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God.
3 For consider Him who endured such hostility from sinners against Himself, lest you become weary and discouraged in your souls.

May God bless all of you who have prayed for noah. The gifts and outpouring of love have been overwhelming.

UPDATE

Surgery update 1pm
Just had the head surgeon's nurse, Nadine, come out to meet w/ me and John. She said Noah is doing good; Dr. Wellons is plugging aaway. He is taking him time, and is very meticulous in doing his best to cut away from the blood vessels in the tumor. She said the bleeding is contained. So they'll keep going as far as they can, getting as much as they can until they have to stop (too much bleeding, etc.) John asked how they handle eating, etc. Nadine said they don't...they just push through it until the job is done. He shed tears of gratitude, and thanked her for what they do. She said Dr. Wellons goes for a run to energize before the surgery, and they all do the best they can do and give the rest to God!!! We both thanked Jesus for a team of believers. Nadine also told us, with tears in her eyes, that she explained to her daughter last night that Mom would have to leave early to help a sick little boy. Her daughter asked if they could pray for him and they did. God is good, and He has Noah in His hands!!!
John and I feel the covering of everyone's prayers, and we are SOOO blessed to be surround by such love and support. We praise God for you every minute.

*I'm trying to organize this blog, I haven't really got the hang of it yet. I'll keep posting surgery updates at the top, but you can scroll to the bottom for additional stories, etc.



Tuesday November 24th 10:21am

Thanks to all of you who have contacted us about Noah. Your prayers and support have been overwhelming. For all of you who have researched and offered advice about his burn - thank you so much! We still have no answer from the hospital. He is scheduled for another MRI in the morning. Pray for his protection.

Noah is in the O.R. presently.  The nurse has contacted us and said he went to sleep just fine and the procedure is going well. They estimate a ten hour surgery. Pray the Doctors and staff stay alert, strong and dont succumb to fatigue.

We will be contacted every 1 1/2 hour by the nurse for status updates.

Jessica and I have a lot of emails to respond to. We have never experienced such an outpouring of concern and love from our friends and community and even people we have never met. I cannot thank all of you enough. We expect to be here for a while. The doctors have prepared us to expect to stay for weeks to months. We have a room at the Ronald Mcdonald house. This is an awesome place. If you go to the Mcdonalds resturant and have the opportunity to drop some change in the collection box for the house - please do. There are so many families in the same situation as we are staying in this place. Everyone is so overwhelmed and in shock about the crisis surrounding their children that to think about lodging and laundry and food is just to much to handle. This place is an oasis - a God send!

As we find time we will try to respond to everyones email. Thank you for your patience.
 
We also want to thank the Athens News Courier for the story on Noah. To know our community is praying for him is  . . . . I have no words.

As we know more we will update more

Thanks for Praying - This is going to make one great God story when it's all over!

John David

Today (Sunday Nov. 22nd) Noah had an extensive M.R.I to look at his brain, brain stem and his spinal cord. What they found was hard to swallow. The Neurosurgeon briefly spoke to us beside Noah's bed about the results, then asked us to follow him to the consultation room. We have never been in that room before - only seen it in the movies. The experience was like being in a dream. We all sat down as the doctor formed his hand into a fist and said, "The tumor in your sons brain is this big. It has pushed the left side of his brain into the right side of his skull."  Jessica and I sat speechless as he began to explain the game plan for treatment, extraction, and the risks involved. This tumor has been growing for some time but has taken a more aggressive turn in the last few weeks. This explains why he hasnt been able to walk straight, keep his balance, or use his right hand.  The tumor is pressing against his brain in every direction. Thankfully it has not intruded into the brain stem, which is why they are taking such strict precautions to monitor him in the PICU. If his condition gets worse, they will do emergency surgery to relieve the pressure.

Currently, Noah is scheduled for surgery on Tuesday. We have no idea what time. Until then, they are giving him treatments of steroids and other medications to cause the tumor to stop growing and decrease the swelling of the brain. 

He is eating more ice cream than what is allowed by law - at this point we could care less about getting what we want in his stomach. If he asks for it, he gets it. : )  He can still use his left hand. He can hold his juice cup and play with our faces. We have laughed a lot, hugged more and kissed constantly. As bad as this situation is, we have had some great quality time together.

We have met some great hospital staff and really like his nurses and doctors.  We know that God orchestrated his transport down here and preordained those who are caring for him. We are in awe of Gods perfect timing.

We are so completley overwhelmed and humbled by the outpouring of love and support from our friends. Words cannot express what your prayers and love have meant to us. 

Monday is going to be a long day of waiting; Tuesday will be the hardest day of our life. We know God works all things for good for those who love Him and are called according to His purpose. Noah is His. His life is in Gods hands. We were reminded by good friends Saturday night that the disciples were in the boat in the storm and Jesus was asleep in the boat with them. He didnt bail out and had total faith to make it to the other side - so much so he took a nap during the worst part, when every one else was freaking out. In our storm - Jesus was in the Huntsville Hospital, the helicopter, the PICU and the consultation room. He will be in the O.R. as well. We arent freaking out - but screaming at the storm "Peace be still!" 

More to come when we know - Thanks! 
John David
 

Upon arrival at Children's we rushed to the PICU to meet our little guy. We spoke w/ one of the surgeons who will partner in Noah's surgery and were shown the ct scan from Huntsville. To be completely transparent - I was terrified. It looked so large, and so scary, and I was just so angry. Talk about emotionally drained. Then we were bombarded w/ questions from lots of different people. It was all really a blur. But I do remember we cried a lot, prayed alot, and John anointed Noah with oil Pastor Steve prayed over and sent with him. 

Is any one of you sick? He should call the elders of the church to pray over him and anoint him with oil in the name of the Lord. And the prayer offered in faith will make the sick person well; the Lord will raise him up (James 5:13-15).

Two of our Friendship brothers drove down and secured us a hotel room (since they kick us out of PICU after 2am) and made sure we had a hot dinner. Talk about walking out your faith and sharing the love of Christ. Even though we were beat up, we were loved on a lot more!  

Noah is a typical toddler. He loves to run, climb, slide, play in the dirt, and "drive" daddy's lawn mower. His favorite tv show is Seasame Street, and he adores Elmo. He is very strong-willed, and has been known to throw a tantrum or two! He has always been on track with every aspect of his development, until the beginning of November. I noticed that he acquired a limp on his right side. Several days later John mentioned that Noah had stopped running when he chased him around the house. As we noticed Noah becoming more unstable, falling more often, and walking into walls/doors, worry began to set in. On Monday 11/16 I took him to his pediatrician, suspecting he had an ear infection, which could possibly explain his problems. There was no infection, so we were told to come back in a week if the problems persisted. That Thursday I watched him play with children several months his junior and my heart began to break. He would wobble around the room with his eyes set on a particular toy, but before he could reach it another child would run and scoop it up. The frusteration in his eyes was enough for me to realize something wasn't right. I scheduled an appointment with his doctor for the next day. Friday morning he woke up vomiting, and continued until we came to the doctors office. He was dehydrated so she had him admitted to Huntsville Hospital, and asked them to evaluate his leg also. Through several conversations with nurses and doctors John and I began to realize this was a much bigger problem than a stomach virus and an injured leg.
We thought Noah was going to be left-handed; he was beginning use that hand more and more. His right eye began to turn in slightly. And of course tthere was the issue with his leg not working as well. As we began to look back over the past few weeks we realized our normal, perfectly healthy baby boy had not been himself at all. When the doctor on call couldn't give us any answers she ordered a ct scan of his brain.

You know that "gut-feeling" that something really bad was happening? That's when I got it. I interpret that feeling as the Holy Spirit trying to prepare me for the news that was coming. We waited and waited. The sweet nurse on call, Katie, came in and informed us Noah didn't need to eat or drink anything else. That was all she said. John and I assumed they needed to do an MRI which meant either a) they couldn't get a good read of his brain w/ the ct or b) they were able to read it and it was bad. We waited and waited some more. Family and friends had come and gone, and John, myself, Mimi, and sweet Noah were the ones present when we got the news.

When the doctor pulls up a chair and looks like she's going to cry it's never a good sign. So I was as ready as I could be. "This is not good. The ct scan shows a mass on his brain. We need to get him to birmingham as soon as possible." It was like something from a movie, or an out of body experience. From that moment on, we knew this was out of our control. We are weak, but He is strong, and His strength is made perfect in our weakness. To God be the glory. Noah had his first helicopter ride to Children's Hospital, w/ His angles following close beside.

A week ago today (Sun. 11/22) I was at home w/ Noah not feeling well so I missed the Sunday service. I found the service of Calvery Assemby church in Decatur on tv and the message was basically "Who will you turn to in crisis?" He referenced the story of King Asa in 2 Chronicles 15-16 (which I had been led to study the week BEFORE). In reading Asa's story you see a man who was encouraged to seek the Lord in his distress and to be strong and not give up, for his work will be rewarded. Asa TOOK COURAGE because of the words of the prophet Azariah and he and his people entered into a covenant to seek the Lord, the God of their fathers, w/ all their heart and soul. Because of Asa's faithfulness to the Lord, he and his people had God's protection. At the end of Asa's reign, he suffered a loss of faith and made a bad decision that led to disease and death. I wondered all week, what in the world did that mean for my life? Asa came to a crisis and for some unknown reason decided that he could not rely on the Lord to help him. Well he lost his battle and I'm not going to loose mine.

But seek first His kingdom and His righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. -Matthew 6:33

Noah's pediatrician is located in Huntsville across from the Hospital. I got tired of driving 45 minutes for an office visit so I called a dr. in Athens in an attempt to get Noah an appointment on Thursday to have his leg examined. They weren't accepting new patients. Reluctantly, I called his regular pediatrician and they scheduled an appointment for him on Friday 11/21. Friday morning Noah began vomiting. When we arrived at Dr. Johnson's office at 245, Noah's vomiting was more frequent. The dr. said he was dehydrated and needed to be admitted.  She had a theory about his leg and said they would check it out. After contacting Women & Children's, Dr. Johnson told us that the attending physician for the weekend was Dr. Knight, a friend of hers. I should also add that Dr. Johson was my pediatrician as a child, and we have mutual family friends. Dr. Knight was the physician who broke the news about the mass, and the compassion and empathy in her eyes made it....well, what it was. Dr. Johnson also came to the hopsital Saturday morning to check up on Noah, and when we realized they were doing a ct, she asked them to call her w/ results. When she realized he had to be transfered, she came back to the hospital to talk with me about the situation and express her sorrow and hope; she offered her prayers, and offered to spread work to others to pray. Praise God for the 45 minute drive - I won't complain again!  Praise God that Noah began vomiting - he wouldn't have been admitted. Praise God that Dr. Knight and Dr. Johnson had a connection, and that connected her to us. Praise God that we had a sympathetic dr. to share the devistating news. Praise God from whom all blessings flow!

About our nurse Katie -
Katie was assigned to Noah's room at HH on Saturday for the 7a-7p shift. She was very sweet, very respectful of us, just had a great spirit about her. When we found out he was being med-flighted to Birmingham, she came in to check on me, making sure I had eaten lunch, wanted to see how I was holding up. Katie's parents live here in Birmingham, and we talked a little about the area surrounding Children's Hospital, and how to get there. As Noah was being prepared for the flight, Katie talked w/ my mom. She said, "I'm really not supposed to ask, but are you guys believers?" Mom shared w/ her our story, and Katie said she would have her brother, who is a pastor of a church near Birgminham, send out a prayer request for Noah to his congregation. She even offered to come visit us in the hospital when she came down for Thanksgiving. Thank you sweet nurse Katie for not just doing your job, but for encouaging us in the Lord, and sharing Noah's story w/ others.

On the way to Birmingham John and I were emotional basket cases. We did have enough sanity to realize that freaking out would get us nowhere. We quoted scripture to ease our anxiousness and grief. John turned on 91.3 the Fix (thanks Mark Allen!)  and every song we heard was about standing strong, trusting the Lord, hope....and we were encouraged. John reminded me of why Noah has his name. About 10 years ago, God impressed on his spirit to name his first born son Noah. He would be a righteous man in an unrighteousness generation, and lead many to Christ. He would live and not die. In believing that God has a great plan for Noah's life, I knew John and I had a big responsibility in raising him. Just about every night after Noah goes to bed, I would sneak into his room and pray for God's protection on him, for the Lord to bring him to Christ at a young age, for peace and the Holy Spirit to live in his heart, and for God to use him for His glory. God is answering my prayers - not in the way I expected or would prefer - but God is using Him. And healing Him. I also trust that Noah has peace in this surgery (which he's in as I type), and that Jesus is with Noah. I'm reminded that a couple of weeks ago Noah and I were heading into church for a Thanksgiving dinner we shared with our young adult bible study...we passed the big stained glass window w/ Jesus holding a baby, and other children scattered at his feet. He raised his hand to the window and started singing, "Bible, bible, bible!" (that's his version of Jesus loves me). I know that in Noah's sleep, Jesus is holding him, and singing "you are weak, but I am strong!"