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 firstname.lastname@example.org 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.
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!
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.
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!
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.
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!
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!
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.