We moved out of the apartment in Birmingham and we are HOME!!! Noah had his last radiation treatment on Wednesday, then we headed to clinic to see his neuro-oncologist and get another dose of Avastin. The appointment went well, and we scheduled his next MRI for Tuesday, April 19th. Dr. Reddy doesn’t see a need to continue the Avastin treatment right now; it was only given to limit the side-effects of the radiation, and it seemed to work nicely at that. So Noah will have several weeks free of port accesses, medicines, and so forth.
Wow, what a journey this has been. Several days ago I was cleaning up a pull-up diaper mess, thinking, there are so many things about being a mom that I just did not sign up for, but I wouldn’t change for the world! Haha...so many of you understand that thought completely. The first time I held Noah I had no idea what I was getting myself into, and I knew nothing about raising a child...but in that moment I DID know that I already had enough love for him that I would take a bullet for him. I never dreamed that he would be fighting an illness that I couldn’t cure with a little tylenol and love. Since last November John and I have been doing our best to live one day at a time, or at least one week at a time. Not thinking too far into the future, and not dwelling on what-ifs of the past has helped to keep us grounded. Several people have mentioned to me that the 6 weeks we stayed in Birmingham really passed quickly it seemed, and it’s true. I was so worried about it, but God provided for our every need and gave us grace and strength to get through each day...and even a little joy each day! There was always something to find joy in, even though we didn’t sleep well, were away from dad a lot, and spent a lot of time trying to find our way around the area! It was not a horrible experience, and God is still good, all the time. I came across a poem yesterday that resonated with me:
What God Hath Promised
God hath not promised skies always blue,
Flower-strewn pathways all our lives through;
God hath not promised sun without rain,
Joy without sorrow, peace without pain.
But God hath promised strength for the day,
Rest for the labor, light for the way,
Grace for the trails, help from above,
Unfailing sympathy, undying love.
-Anne Johnson Flint
Very simple and sweet, this author got it right - life is hard, but God will get us through when we ask for His strength and guidance!
We are especially taking life one day at a time now as we wait for April 19th. All of our futures are hinged on the outcome of the next MRI. We are still praying for and believing for a GOOD scan - one that reveals no more tumor growth, and a stabilized tumor, resulting in no more treatment for Noah! Please begin praying now for that good report.
We are preparing for our Make-A-Wish trip to Florida; we will leave April 6th and stay for a week. Noah is very excited about this trip, and I know he is going to have an amazing time! We are so thankful for this opportunity.
Please continue to remember 6 year old Lindsey in your prayers as she is struggling to fight this very aggressive cancer. They are in Maryland right now as she is undergoing more scans and tests. And as a praise, little Joel had a great report from his MRI scan and LP this week! God has healed this precious little guy and we rejoice with his family in that!
I say it all the time but you guys are so awesome to continue to read our blogs and pray for our sweet boy. Knowing that so many people love and care for us is overwhelming, and it’s hard to know exactly what to say (or write) to convey our feelings to you. But know we love you all, and we will keep you informed of how Noah is doing over the next few weeks prior to the MRI. Hope everyone has a great weekend and God bless!
"For this child I prayed; and the Lord hath given me my petition which I asked of Him; therefore also I have lent him to the Lord; as long as he liveth he shall be lent to the Lord." - 1 Samuel 1:27, 28
This is a story I read today that I wanted to share:
Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day, however, the little soul was sad for on this day he saw... suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied. "Little soul, do not be sad, for the suffering you see unlocks the love in people's hearts." The little soul was confused. "What do you mean?" he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."
The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts, much like the sun and the rain unlock the flowers within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this ...it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer ...to unlock this love...to create this miracle...for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave, let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that Miracle!"
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave, you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to take care of you on your journey. Those souls will help you create your Miracle; however, they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you."
God and the brave little soul shared a smile, and then embraced. In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel you have suffered enough, just say the word, think the thought, and you will be healed."
Thus, at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys...some regained lost faith...many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place.
The Miracle had happened. God was pleased.
Please take a moment to pray for 6 year old Lindsey. She was finishing up her second round of radiation when Noah started his treatment. Her mother hasn’t posted details yet on their site, but she has had a turn of events and is in the hospital right now. I found the above story on her Caring Bridge page. Lindsey was given 9-12 months to live when she was diagnosed almost one year ago. She is a precious little girl who always had sparkly pink shoes, bracelets all up her arms, a sweet smile, and a stuffed animal in tow every time we saw her. You wouldn’t know by looking at her that she is under attack. She has been fighting a VERY aggressive brain cancer and needs your prayers!
Noah is doing well. He complained of feeling sick yesterday, but I gave him another dose of Zofran and after that he felt fine for the rest of the day. He has 5 more treatments left. He is settled in this new routine now. When we arrived at the apartment in Birmingham Sunday night, he was upset that we weren’t going immediately to “Dr. Fiveash’s office” to get his medicine from “the machine.” He enjoys seeing the radiation and anesthesia staff every morning we are here. It’s strange how something that was at one time new and frightening has become almost a comfort to him now. I know he will miss everyone that cares for him at the radiation center once his treatments are completed.
John is here today and once the clouds pass over we are planning on taking Noah to a nice park in Homewood and maybe meet up with some family for dinner. We are so thankful that Noah is doing so well and can still be an active 3 year old boy. I have to remind myself at least once a day that he has cancer…the only signs of his fight are his scars and hair loss. I think I mentioned in the last post that his MRI will be about 6 weeks after his last treatment. Please begin praying now for a good report!
We have met another radiation patient from Mississippi who has been very kind to us; you can read Mitch’s story on his Caring Bridge page here. Please pray for his healing as well.
I'm reading a book Mr. Mitch gave us called "The Red Sea Rules," by Robert J. Morgan. It has lots of wisdom for a person in a time of trial and pain. This excerpt is an entry from the journal of a South African pastor named Andrew Murray (facing a terrible crisis):
First, He brought me here, it is by His will that I am in this strait place; in that fact I will rest.
Next, He will keep me here in His love, and give me grace to behave as His child.
Then, He will make the trail a blessing, teaching me the lessons he intends me to learn, and working in me the grace He means to bestow.
Last, in His good time He can bring me out again - how and when He knows.
Let me say I am here,
(1) By God's appointment,
(2) In His keeping,
(3) Under His training,
(4) For His time.
It is a comfort for me to remember that there is nothing that I will go through, experience, no emotion I can feel that God does not understand; He will give me enough grace for each day. In the short 29 years that I've lived, I've found that it is when I am beat up and broken, hurting and confused that I feel closest to His heart. I have felt His love like never before in the last 16 months.
Thank you for the cards and gifts for Noah that keep coming! He gets so excited to check the mail, and most days there is something for him to open. May God give you His grace and peace as you let Him use you to bless our family!!
9 more treatments left!!! Noah is still doing well - hardly any side effects except hair loss. His Dr. told us today that Continuing to take the Avastin has helped prevent some of those side effects, like swelling of his brain. I am SO glad Noah has not needed to take any steroids...God has given both of us grace there!
Yesterday we decided to do something fun while Dad was in town, and we were given some tickets to the Barber Vintage Motorsports Museum. We did not think it would be that big of a place, and thought Noah would like to look at some motorcycles. When we arrived we realized, this is a serious place with some serious money invested into it! It was amazing, and was DEFINITELY not for a 3 year old who wants to touch and climb on EVERYTHING. There were about 5 levels filled with all kinds of motorcycles and cars. John was drooling, and Noah was trying to be as patient as he could...we lasted about 10 minutes. From now on I will do some research before we blindly head to a place someone gives us tickets to! You live and you learn...
Just to keep you updated on some of Noah's favorite activities: Lately he has really developed an interest in Star Wars. He has 2 older friends Mikey and Devin that have all the Star Wars guns and swords and movies, etc. and he wants to be just like them. He got a light saber and a Star Wars gun for his birthday, and he now only wants to use "pow-pow" stickers on his sticker chart. (We ran out of SW stickers today so he settled for Spiderman. I had to promise a trip to the store to re-stock our supply!) It is too funny to watch him try to recreate the positions and stances of the characters as they fight each other. And I think I've mentioned before that he often talks about going to "fight the boo-boo." Usually once a day he gets a handful of markers and crayons, tells me I need my medicine, and proceeds to take me to "Dr. Fiveash's office" (the bedroom). He tells me to lay down, gets his syringe (marker/crayon) and gives me the magic milk so I can take my nap under the big machine. (He is pretty good at making the loud humming sound he hears from the radiation machine every morning.) Then after he has shoved a marker into my chest a few times where a port should be, I am all done! Sometimes he even grabs his yellow stethoscope and tells me, "you ok!" It's really cute.
There are a few fundraisers planned for Noah; these are the 2 that I am aware of: Saddle-Up for Noah Family Fun Day will be held on Saturday, April 16th from 10:30am until 5:00pm. This event is hosted by Larry and Pam Berzett at P & L Farm located at 6315 Upper Snake Road, Rogersville, AL. They are encouraging people to "please join us for a Trail Ride (bring your horse!), Mule & Wagon Rides, Bands/Music, Silent Auction, 'Baked Goods' Auction, Volleyball, Horseshoes & of course Food & lots more!!! YOU DO NOT HAVE TO RIDE A HORSE...THERE WILL BE SOMETHING FOR EVERYONE TO ENJOY! DON'T FORGET YOUR LAWN CHAIR!!!"
The second event I am aware of is a benefit motorcycle ride being held on October 15th, and is sponsored by a motorcycle group called the Ghost Warriors from Arab. I don't have much information as of now, but since it is so far in the future I will post more information later.
We are so thankful for all of you who are planning and organizing events to help bring in more money for Noah's medical bills. We are praying that after Noah's next MRI, which should be about the first week of May, he won't need any more treatment. If...WHEN the radiation is shown to stop the growth of his tumors, he will just continue to have an MRI every 3 months to make sure everything is still stable. I'm trusting for that day when I can tell you that the cancer is not growing and he is stable, requiring no more treatment - for the glory of God!
As always, thank you for your prayers, gifts, encouragement...we are so appreciative of all who are caring for us at this time and we love you! Seeing the love of God through everyone who is loving us is one of the reasons I am still sane!! We couldn't do this without you, and know that you are prayed for and loved in return.
We are halfway through Noah’s radiation treatment! We are “over the hump” so I’m praying it will be downhill and smooth sailing from here. Noah has had a good week so far, but he is experiencing some hair loss and tenderness at the radiation site. He is not lacking for energy, though. This morning at the radiation oncology center he performed a tap dance routine for everyone in the waiting area, and after his nap the bed turned into a boat and we had to fight off the sharks with Elmo and Brobee pillows. This afternoon we met some friends at a local park with a playground and Noah could run and keep up with all the other kids…the only thing visibly different about him was the hair loss. It’s amazing how resilient he is.
Monday was Noah’s birthday and we celebrated on Saturday with family. It was a Yo Gabba Gabba party, complete with balloons, colored lights that danced with music, some of his favorite foods, his “jump-jump” (an inflatable basketball court), power wheels races in the backyard (which turned into power wheels and lawn mower races), and his birthday gift, a new trampoline. The kids (and some of the adults…) had so much fun I think we’ll do it again this weekend!
Another exciting bit of information: we have Noah’s Make-A-Wish trip planned! We actually just got it rolling today. We will be going to Give Kids the World, where we will have access to the Disney Parks, Universal Studios, and Sea World. It will be Noah’s first plane ride, and he is very excited. I have a feeling we will be spending a lot of time in the swimming pool, the splash pad, and the ice cream shop on the GKTW property. Our trip will begin on April 7th, so I’m praying now that Noah will feel at 100% to be able to run, jump, swim, play, and enjoy every fun and amazing thing that will be presented to him.
I’ve written about this before, but after Noah was born I would pray the same type of prayer over him most every night after he went to sleep: Protect my son, grow him to be a strong man, a man of respect and integrity, a man who follows after You, Lord, and will be a righteous man who leads many to Your love and grace. But above all, use Him for Your glory; He is Your child. I could not have anticipated how the sincerity of that prayer would be tested. But above all, use Him for Your glory. I have to be honest, it took me a while after Noah’s diagnosis to begin praying that last part of my prayer again, because I realized that oftentimes when we ask for God’s glory, it isn’t an easy route to find it. I wanted people to see God’s glory and provision through our lives, but not in this way. I’ve never doubted God’s sovereignty or purpose, but I’ve been angry lots of times, at God, for permitting this to happen. Why my son? Who wouldn’t ask this question? I spoke with another mother of a child with cancer, and this is basically what she said about that question: “Why my child? I have seen so many families struggling with this horrible situation that could not deal with it. They did not have Christ as the center. I thanked God that He chose my family, my daughter, and not another family that didn’t know Him and have God to lean on and help them through.” I was so taken aback my her selfless statement that I didn’t know what to say, but just cried. I wasn’t there yet. I’m still not completely there, but I’m getting closer to completely accepting this with open arms. This world is full of heartache and pain, death and destruction, and it’s what I do with my pain that shapes my life and my relationship with God.
This Sunday morning at church I was very upset, just overwhelmed with the thought that I would have to leave in a few hours to drive my son back to Birmingham without my husband. John had just preached a great message about the importance of the Holy Spirit and His activity in our lives. During the invitation I just pleaded with God to heal Noah, and give me strength to finish this part of our journey. I remembered that prayer I’ve prayed so many times, but above all, use Him for Your glory. And I felt the need to just let it go, and release my son to God. I’ve been holding so tight, trying to control what I can - whether it be planning and preparing for emergency or cleaning obsessively, etc. - and I really felt in my soul He was urging me to let go. Man, it’s a hard thing to do. It’s a hard thing fully trust God. But I’m allowing Him to give me strength to do that.
Tuesday before nap time Noah and I were snuggled in the bed; he was looking through his bible, pointing out the stories he knows and likes to tell in his 3 year old vernacular. He stopped all of a sudden and clasped his hands saying, “Dear God, please make my boo-boo better. God thank You for fixing my boo-boo.” And then he went back to looking at his stories. I tried not to let him see my tears…it was so sweet and I thought, I know You heard that Lord…grant his request!!
We are almost done with this week, and we appreciate your continued prayers and support! I still love getting your letters and emails…it’s good to be reminded that you’re still reading and praying. We love and appreciate you all!
“Not that I speak in regard to need, for I have learned in whatever state I am, to be content: I know how to be abased, and I know how to abound. Everywhere and in all things I have learned both to be full and to be hungry, both to abound and to suffer need. I can do all things through Christ who strengthens me” (Philippians 4:11-13).
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.