Noah and I are back home and both of us are excited about that. We have had a pretty good week - a long week - and we are realizing that even though Noah doesn't have any physical side effects from the radiation right now, he and I are both having emotional effects from the situation. Like I said, it has been a good week - it could always be worse! - but it's also been a trying week as well. I feel like Thursday will be the hardest day of each week through the rest of Noah's treatment, and Thursday afternoon/evening seems like an eternity, because I know as soon as treatment is over Friday morning we hit the road. But 12 treatments down, 18 to go! Thursday evening I was bummed, tired, and stressed. I looked around the apartment and noticed all the cards and pictures that have been sent to us, and was encouraged. I know we have people praying/interceeding for us from many different parts of the country - I have the letters to prove it! The notes of encouragement you send may only take a few minutes to write and slip into the mailbox, but I will look at them for weeks and remember that my family is loved and covered in prayer, so thank you!
It's hard for me to remember for some reason that I need to write blogs more frequently. I guess in my mind I think, this day is just like any other...nothing new to report. I appreciate those gentle reminders that you who read would like an update. Tomorrow is Noah's birthday party and our family will come over tomorrow evening to celebrate. I'm sure many pictures and videos will be made so I will post them asap, along with a few others from this past week. Hope you have a great weekend, and keep praying for Noah!
Everything is going well for Noah right now…well, as good as can be considering he has been moved from his home 5 days a week and has to be put to sleep every morning so the medicine can “shoot the boo-boo.” As long as I put that in a Star Wars perspective he is ok with it. He will get his play sword and gun, run around the apartment making light saber and gun noises shouting, “Fight the boo-boo! Get it! Fight!” Every morning of treatment gets a little easier; he is still slightly anxious while walking to the treatment room and he clings to either me or John until he goes to sleep. But there is no screaming or fighting, which means a lot of stress off of Mama. We have a super nice team that takes care of us at the UAB Radiation Oncology center. Everyone we come in contact with always has a smile and is willing to answer any questions we may have. Their love for Noah is evident, just as it is with the oncology clinic at Children’s, and John and I appreciate that so much. It is SO much less stressful to watch your child go through these treatments when the staff is gentle, caring, and loves your child almost as much as you do! Today Noah had an issue with his port; during his playtime yesterday he came to me and said his noodle hurt (he calls the line attached to the needle that accesses his port his “noodle”). It didn’t appear irritated where it was inserted so I didn’t think much about it, and didn’t remember it had happened until this morning when Noah started crying, “it hurts!” while the medicine was being pushed. The needle had slipped out of the port so the medicine was pushed under his skin and was burning. I felt so awful for him, but there was nothing John or I could do. We were afraid we would have to load Noah up and drive to Children’s to have him accessed again, but Miss Anita (his nurse anesthetist) came to the rescue! She worked the needle back into place, not causing him any pain, and we were able to continue with his treatment. I thanked God for her being there in that moment to fix the problem, especially because she has such a gentle way with Noah. It may sound like a small thing, but she took a huge weight off my shoulders this morning. Everything went smoothly after that, and we are now home and about to have lunch.
I was really worried about this part of our journey before we began, but the Lord has so far sustained me (and will continue to do so!) emotionally, financially, logistically, I could go on. He has done it through our friends and family, and people we don’t even know, but they love and pray for Noah everyday. I feel so lucky to be in this position with so much support and love. Cancer happens - to so many people every day, young and old, and I don’t know how families get through it without a huge support system, and without the Lord. I know I’ve said over and over that God doesn’t promise us sunshine and rainbows, but WHEN those hard times come He WILL provide and pull us through, - no matter what the outcome….and if we just let Him. I am aware that a lot of times these situations end in death, but even then we are promised a new life if we will just know and love the Lord.
When I am tempted to worry about our future, I am reminded that no one is promised even the next breath. I am so thankful that over the past year and 3 months my family has been “forced” to spend lots of time together. Maybe not in the most ideal environments, but we are together nonetheless. I get tons of quality time with Noah, and I am so thankful for that. John doesn’t get quite as much time with Noah as I do, but he does his best to make up for that when he can be present. I feel like our situation is much harder on John because he has to split his time between family, work, and traveling to get to one of those. I’m blessed to have a husband who loves his family first, and knows providing for us means being dedicated to his job (which just happens to be something he really enjoys doing!). He is such a hard worker, and I just want to publicly affirm him for being amazing! I love you John David Crowe!
Please pray specifically for John and what I mentioned above, and for our fellow apartment dwellers next door and especially just below us; the have no peace and quiet until Noah is asleep! :) (Right now he is tap dancing, clapping, and screaming his own praises - radiation hasn’t slowed him down, either.)
Thank you for everything and much love,
Noah had his first radiation treatment this morning. We arrived at the UAB Radiation Oncology building at 7:00 AM. Noah was greeted in the lobby by Dusty, a 9 year old shih tzu that is part of the 'Hand in paw' dog therapy program here. Children are scheduled for treatment first every day and the hand in paw program has a dog in the lobby every day for the children to enjoy while they wait.
Noah was a little scared at the new surroundings and all the new faces as we made our way down the hallway toward the treatment room. Once we were inside, he settled down. He has his port accessed so putting him to sleep was a breeze. He went to sleep and they immediately began the process of positioning him correctly and placing his mask over his face and chest. Noah will never be awake during this part of the process, so he will never know or remember being bolted to a table with a mask over him. Thank God.
Once he was secure, everyone left the room and a very large door, over a foot thick, closed him in. I was able to stand at the operator's desk and watch as they positioned the machine in just the right spot. Four cameras monitored his every move and we could hear him if he made any sounds. Once everything was correctly positioned, they began his first dose of radiation. This part of the treatment only lasted two minutes. Once it was over, Noah was awakened and brought to us in the waiting area. He was very loopy but wasn't crying or unhappy. We waited about ten minutes then he had a vitals test. Everything checked out just fine and we were released. We came home and Jessica made eggs, grits, and toast. We sat and watched "Super Why," one of Noah's favorite shows and ate our breakfast.
Jessica has made a chart for Noah to put stickers on marking off each day of his treatment. He has picked out his favorite characters to go on the poster. Spiderman made it to the first block. : ) He also gets a sucker after every treatment. He loves that part!
We want to thank everyone who has helped us in this new chapter of Noah's journey. Many of you have sent encouraging cards and notes to Noah, me, and Jess. Many of you have made financial contributions to help in Noah's expenses and we have recently heard of several fundraisers people and some organizations are putting on in Noah's behalf. All of this support has been such a blessing to us. We cannot say thank you enough.
Noah has another treatment tomorrow, then he and Jessica will come home to Athens for Friday and Saturday night, then return to Birmingham on Sunday.
Please continue to pray for Noah's healing and all the other children who suffer with cancer.
Spread the Word
Pray for Noah
Noah and I are settling in our new "home" tonight. John will be here for a couple of nights with us, and will thankfully be present at Noah's first radiation treatment on Thursday. Noah and I went grocery shopping - quite a larger feat than in the small town we are from where it takes 5 minutes to get to "the Walmart" down the highway. It will take some time adapt to the way of life in the city; the traffic, the parking, the TRAFFIC...but we can do it!
Tomorrow morning he will begin his tumor-starving therapy again, with the radiation treatment beginning on Thursday. The radiation is Monday through Friday, but I’m not yet sure of the frequency of the other treatment.
Ok, so I’ve had some texts with questions about the Make-a-Wish visit - sorry I’ve kept everyone in suspense. The visit went well; two volunteers from the North Alabama area came to the house on Sunday afternoon and brought Noah a toy 4-wheeler, so they were instantly his friends. We are so grateful that they gave almost 2 hours of their Sunday afternoon (Super Bowl Sunday, at that!) to spend with our family. They had Noah color a picture and asked lots of questions to try to find out his interests. He wasn’t as sociable as he usually is, and didn’t give up very much information, possibly because he was really distracted by all his toys in the house, and it was nap time. But we had a good visit, learned a lot about Make-a-Wish and the possibilities of his wish (which are almost limitless). It really is amazing what this organization, through it’s volunteers and donors, has done for so many families. After an hour and a half of trying to coax a wish from Noah, the adults decided on some options for him. Swimming with the dolphins is out because he is too young. His new favorite show is “Yo Gabba Gabba,” so meeting the characters/attending a recording of that show is an option. My personal favorite potential wish is Give Kids the World, which is such a cool place for children with life-threatening illnesses to stay while touring the different theme parks in Orlando. The third option is an amazing tree house/play house area in the back yard. Noah would be super stoked about any of these, so we will soon see which one he will receive. The next step in the wish process is finding a sponsor for Noah, and moving forward with the logistics of the wish. Fortunately, a school in Marmaduke, Arkansas has voiced interest in financing Noah’s wish. My aunt teaches at a school near Marmaduke and word of Noah’s story has spread in her area also. We are praying that everything works out with the sponsor and after his radiation is completed he will get his wish!
Thanks again for your prayers of faith for Noah, please keep them up; we need them now more than ever. Believing with you for a miracle for my sweet boy.
It is just after noon and we are already home from Birmingham; I believe this is the shortest trip we have ever made down there. Noah had his port accessed this morning at Children's and then we headed to UAB radiation center to have his scan and mask made. He woke up from the anesthesia a little quicker than I could get to him, so he wasn't happy about that but otherwise he did great. His treatment will begin a lot quicker than we expected - this Wednesday he will resume his tumor starving therapy and then Thursday morning he will begin the radiation treatments every morning (M-F) at 7am. So Noah and I will be officially "moving in" to the Birmingham apartment on Tuesday evening. It's a nice place, built in the 40s, plenty of space for our necessities, neat and clean, and only a few minutes drive from the treatment center. God is really providing our needs during this time, and we thank all of you who have contributed in some way or another!
I've been trying to teach Noah about his wish - what it means, what he could possibly do or have, and how endless the possibilities are. At first it was hard to distinguish the wish from a "witch" (he loves watching the Wizard of Oz and couldn't get past his wish being "mean and green"). I think he is finally understanding the concept and is trying to decide what he would most like to do. He talks a lot about swimming with sharks, but somehow I don't see that one coming to fruition. :) I will post more after our meeting with the Make-A-Wish volunteer on Sunday. Thanks so much for still reading and praying!!! Have a great weekend!
We met with Noah's radiation oncologist on Wednesday afternoon to discuss his treatment. During the meeting we found out that the LP results were clear and there is no concern with his spinal cord, praise God! So the radiation will focus on the cavity in his brain and really hit where the new growths are located. Noah may be receiving some additional chemo/tumor starving therapy during the weeks he gets radiation; Dr. Fiveash said chemo often aids in the effect the radiation has on the tumor. There are some risks involved as with every other treatment Noah has had, but the greatest concern we have today is saving Noah's life. I've mentioned before that Noah will have another MRI once this treatment is completed; what we need to see is a scan that looks the same as this last one. Our doctor explained that when the radiation works the growth will die, but not change size...it's not going to disappear. Please, plead with the Lord on Noah's behalf that He will use these amazing doctors, nurses, and technicians to heal our little guy.
We drove back home to Athens late last night, and will be driving back to Birmingham for a simulation appointment on Friday morning where they will do a mapping scan and make Noah's mask. His treatment won't begin until about 10-14 days later.
Because of Noah's circumstance the Make-A-Wish Foundation has been working quickly to grant him a wish. They are coming to our home this Sunday afternoon to talk to him about his wish, so I hope he is able to communicate to them what he most would like to have or do.
I will post more after our appointment tomorrow...happy weekend to everyone! Thanks for your prayers and support.
We arrived in Birmingham last night. We have been given a place to stay by the Homewood Church of Christ here in Birmingham. They own a series of apartments and offer them to families with medical crisis free of charge. It is a very nice place and we are so blessed to be here.
We received so many offers from some amazing people of places to stay during this new treatment. Thanks to all of you for opening your heart to us.
Noah had another MRI this morning and a spinal tap. The Doctors are looking at his spine and spinal fluids. Our hope is that the cancer attacking Noah is only in one spot. If it is spreading, the spinal tap will reveal it and the MRI will show where.
Currently we are in limbo. The scan came back with a few questionable spots on his spine. They are comparing todays image with Noah's past images and also passing them on to some colleagues for their input. The spinal tap usually takes 24 - 48 hours to get an answer. So we have a long night and day of waiting. We had hoped for a routine scan and an "all clear" report. We still hope to hear the all clear.
Our appointment with the radiation oncologist is tomorrow at 3:00PM. He will explain the process and answer all of our questions. After this initial meeting, they will schedule us for a "practice run" where they will put Noah to sleep and fit him for his mask. From what we have heard from other patients, it is a hard mesh cast that goes from the top of his head to his chest. Noah will be put to sleep everyday and the mask will hold him perfectly still during the treatment. If anything is found in his spine, he will be treated in both head and back with radiation.
On a lighter note, Jessica discovered that the D.I.Y. network, Food network and HGTV network are all beside each other on the cable down here. I heard her say with delight, "Oooo" at the discovery. Noah has his toys all over the floor and is singing every song he knows. As abnormal as this chapter in our life is, some things don't change : ) I saw a sign in the mall today (after we got off the carousel) that said "happiness isn't a destination, it is a decision." Not sure if I have settled into agreement with that statement, but I do know that even in the worst of situations, there are still reasons to smile, moments to laugh, and joy to be had.
Spread the word, Pray for Noah
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.