American Brain Tumor Association
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 deductible. 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 email@example.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!"
MRI update: Noah's oncologist looked at the scan and said, "I'm pleased with this one." She said there were less enhancements on the MRI last week than the one he had in December. She did confirm the "spot" and wants to keep an eye on it, but it will not affect his treatment at this point, and she could not say for certain what it is. He will have another MRI after his last scheduled treatment in May. The neuro-surgeon has not been able to see the scan, but as soon as he does his nurse will call me with Dr. Wellons' opinion. We are pretty much still playing the wait-and-see game in this situation. But at least we know we have 2 more treatments planned, and then we can go from there.
While reading today, the story of Lazarus jumped out at me and as I read I was encouraged. Jesus said to His disciples about Lazarus,"this sickness will not end in death. No, it is for God's glory so that God's son may be glorified through it" (John 11:4). Jesus loved Lazarus, and yet He tarried, and essentially allowed Lazarus to die only to raise Him from the dead, "so that you may believe" (John 11:15). I don't doubt His power and ability to heal, but I also know that He may tarry and He is often "slow to act" according to my watch. As I wait on the Lord to completely heal my son, I am encouraged by the letters and comments I receive from so many of you who are praying and believing with my family for a miracle. And I see how even now God's is glorified through the work He is doing in Noah. Thank you for all you are doing and have done to show us the love of Jesus.
Waiting on official MRI reading
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 effect 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!
Finished Chemo 4
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.
MRI and Chemo 4
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 practitioner 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!
Zoo Day before MRI
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 talking 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 interesting 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 8:30 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.
My sweet boy
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...not 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!
So far so good
This is a picture my mom made. 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. :)
Grow neutrophils, grow!
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 still has no neutrophils, hardly any white blood cells at all...no immune system. So we are still waiting. Now I'm hoping that we will be able to leave on Friday. We just need to see a change for the better starting with tomorrow's labs. Please pray for those neutrophils to grow!
John came down last night and will be here with us through this afternoon. Pray for safe travel for him please. I'm about to leave the hospital for a much needed break from our recent "normal" activities. I will more than likely return with a(nother) new toy for Noah. :) I'm not sure if we should get him out of the room today, so hopefully a new toy will hold his interest for a while. It's been really hard on him to be in the room for the majority of past few days...I have cabin fever and I can't imagine what that's like for a 2 year old. Thank you for praying and encouraging...Coming home Friday is our new goal!
Beads of Courage
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 monthly 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, THANK 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:
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 flexibility 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 surprise 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).
These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.