We spent the late afternoon/early evening in the emergency room. Earlier this afternoon Noah and I were driving home from having lunch with John, and Noah started saying, "Mama...mama...I can't talk anymore" in a very slurred, almost indecipherable way. He continued to attempt to answer my questions with these unintelligible phrases while the right side of his face began to look paralyzed, and while I attempted to NOT freak out. While successfully not having a wreck, I kept calm and determined that he could see, his right hand was not gripping as it should, and he looked like he had just left the dentist office (when I asked him to smile, the right side of his face did nothing). After a few minutes of trying to keep him alert and talking with me, he slumped down into his booster seat and began to cry and panic. He was aware of everything that was happening, and terrified that he couldn't form the words to tell me what he was feeling. I was outwardly unemotional, but inwardly I was dying because I thought, "this is it. This is what his ending will be like...losing his ability to communicate what he needs." And honestly that is my greatest fear: for him to be suffering and not be able to tell me. My heart was breaking. The episode lasted a total of about 2 1/2 to 3 minutes, and felt like an eternity for both of us, I'm sure. When I noticed his mouth beginning to move again, his words became more clear, and he sat up straight and began to calm back down. During all this I had turned the car around and headed back to pick up John. We all went straight to the hospital. Noah's speech has still not become what it was before the first seizure, which worries me. While in the E.R. he had another seizure, though not as pronounced. He was given a steroid dose and a hefty dose of anti-seizure medication; he will continue with both of these at home. We were discharged in time to move forward with our campout in the back yard. The night turned out well, but the events of this afternoon have left me wound up pretty tight.
Tomorrow we have lots of family coming into town, then a fundraiser to attend tomorrow afternoon. The Hope for Autumn Foundation is having it's annual crawfish boil and Noah is one of the children with cancer that they are sponsoring this year. We are very grateful that he was chosen to be a part of this event, and we are looking forward to a fun-filled afternoon, and praying it is free of seizures, headaches, and whatever else could possibly happen. Pray with me that Noah will have a great day visiting with his family (one of his favorite things to do) and at the event tomorrow afternoon. Thanks for checking in on us, and please continue to pray with us for a miracle!
I have felt very weary today, pretty much like the life is being sucked out of me. Do you ever have those days where you really don't want to do ANYTHING except stay in the bed?? I'm sure we all have. I've been in a Hillsong mood today, so I've posted a link to one of my favorite worship songs that helps build me up when I'm feeling low.
Noah was feeling fine this morning as we all got ready for work and school. He ate breakfast, played with his toys and put up a fight about what shoes he was going to wear. (Over the past few months he has become very interested in choosing his clothes for the day, so most days you can definitely tell he dressed himself!) He was very excited about seeing Ms. Elizabeth and his classmates, and they seemed excited that he made it to school today as well. Around 9:30 Noah got sick in class, and had a pretty bad headache. John brought him to his office; Noah requested all the lights be turned out and then took a nap. We were all disappointed that he wasn't able to enjoy the morning at school. After his nap he woke up feeling much better so we had lunch and headed to the hospital.
Our meeting with Dr. Reddy went just as expected, and we are left with pretty much the same options as we had after the last recurrence, minus surgery. 1. Noah qualifies for a phase I clinical trial that is available at the moment; it requires that he take one experimental drug along with 2 types of chemotherapy drugs and an antibiotic. Most doses would be administered at home (orally) with very few hospital visits. There are some likely side effects and as always a few very unlikely, but risky ones.
2. The second option is a chemotherapy that has had some success in children with medulloblastoma (another type of cancerous brain tumor) and would be given along with two other drugs (one is a chemotherapy and the other one is a type of drug that I'm not sure how to pronounce so I won't even try to spell it...). This treatment would require lots of time spent in the hospital to monitor his body's response to the drugs. 3. Thirdly, we could opt for no treatment for Noah, other than what he would need to make him comfortable. That could be steroids, pain medication, whatever would work for him. No one can give us an estimated amount of time that Noah would have if we choose this option, but today we were assured that Noah would progress gradually, and not as though a switch had been flipped, if that makes sense. John and I have already noticed that pattern over the past few weeks as his episodes of headaches and vomiting have been growing closer together.
Of course there are other "alternative" therapies out there and if we encountered one that appeared to be even somewhat promising (based on legitimate personal testimonies) we could consider those as well. In the beginning of Noah's treatment when he had his first surgery, then began his first chemotherapy regimen, we weren't really given any options because that was the typical protocol for his type of cancer. Sometimes that protocol worked, and sometimes it didn't. Now that Noah hasn't responded to any of the therapies that worked on other kids, the decision has passed from those who have spent years and years in medical training and research, to two people who have no medical background at all, but love and care for this child more than anyone else in the world. Geesh, this is hard. And I know we just went through all this three months ago, wrestling with making the right decision, choosing the right path, and that decision gave us 3 more really good months with Noah. So in order to make the best decision for Noah, and not for John and myself, we need lots of prayers lifted up once again for guidance and wisdom. To know that our family has so many people remembering us in prayer is absolutely amazing and encouraging...it fills me up on a night like tonight when I am just plain emotionally exhausted. John and I need some quality quiet time to ourselves to discuss and pray about our next steps, and one of us will post again when we come to a decision. I will do my best to keep you all informed of Noah's health, but by now you know I'm not one to update every day or even week if life is uneventful. So, "no news is good news" I suppose. Thank you so much for checking in on us, and keep passing the word to pray for another miracle for Noah!
"I will exalt You, my God the King; I will praise Your name for ever and ever. Every day I will praise You and extol Your name forever and ever. Great is the Lord and worthy of praise; his greatness no one can fathom. One generation will commend Your works to another; they will tell of Your mighty acts. They will speak of the glorious splendor of Your majesty, and I will meditate on Your wonderful works. They will tell of the power of Your awesome works, and I will proclaim Your great deeds. They will celebrate Your abundant goodness and joyfully sing of Your righteousness" (Psalm 145:1-7).
Shortly after this picture was taken Dr. Wellons and his sweet nurse Nadine came into the room to talk with us about the results. I could sense something was wrong from the look in Nadine's eyes. She coerced Noah from the exam room and the clinic nurses kept him busy while Dr. Wellons showed us the scans. The tumor is not only growing, but it has metastasized to other parts of his brain. More surgery is no longer an option. We have an appointment to meet with his oncologist on Wednesday to to find out if there is a clinical trial available for Noah to participate in. Noah's nausea, vomiting and headaches he has been experiencing the past few weeks are affects of the growth. Other than that he has been feeling well.
After we left the hospital we took our usual trip to Toys-R-Us for Noah to pick out his post-MRI prize, which he is now enjoying with Dad. John David and I haven't had a chance to talk about this, and we haven't been emotional in front of Noah; he picks up on our stress pretty easily so we are attempting to keep calm until we can find a moment to talk. I don't know if we will decide on a clinical trial if there is one available, I don't know how long we will have with him with or without any treatment...I just don't know what our next step is, except for this: we will continue to pray for his healing, continue to love him with abandon, continue to do our best to raise him the way we feel the Lord would have us, and make him as happy and comfortable as we can. There is only so much we as parent's can do to control our child's life, namely his health, and this reality has never been more clear to us as it is today. So we release his precious life to our Savior, praying for His will to be done, asking for wisdom/guidance, and pleading with Him to grant Noah another miracle on this earth. We appreciate your faithful prayers and encouragement, and we ask that you continue to pray for healing and peace. We are still riding out this storm, and we will not give up even though we feel as though we are drowning. I will update after we speak with Dr. Reddy on Wednesday afternoon. Much love to you all.
I have to say that God is good, all the time, and His faithfulness to provide where I am lacking is ever constant. If you read the last post you know that Noah has an MRI coming up this Monday morning, April 23. I haven’t talked much about it, or written much about it, but I have been internally worrying about it. This will be his first scan since the surgery in January. His neuro-surgeon gave us an estimate (before his surgery) that he might expect Noah’s tumor to grow back within a 3-month period, calculating that estimate based on the trends of past tumor growth. I know what that scenario will bring, and the battle in my mind and with my emotions is sometimes so strong that I become physically sick trying to fight off my thoughts and fears about the end of his life…vivid images of what it will be like, look like, feel like - it’s torture, honestly. The waiting and wondering, with my child’s life hanging in the balance is very difficult, as most could imagine, and as some have experienced. For two years and five months (to the day) I have lived with these thoughts of “the last stages.” They have been compounding like the interest on my Lowe’s credit card (big mistake, btw…especially since I’m a sucker for all things home improvement). They creep in when I least expect them to and I’ve allowed them to ruin many precious moments I’ve had with my family, just being normal. Speaking of normal, we really have had an amazing, medically uneventful three months. Noah is still enjoying his day school class and all that it entails, and has become very ritualistic about making his rounds to meet and greet at our church office once school is out. The new rental home in Calera has proved a good place to live. We are all slowly but surely developing new friendships while missing our old ones. Life is good, life is blessed; it is continually moving forward and every day closer to April 23rd has brought another worrisome thought to my mind. I quote Philippians 4:6-7 daily and for a moment I find peace, but that moment is gone much too quickly.
As I type I am in the most decadent room I have ever stepped foot in on the 21st floor of the Ritz-Carlton hotel in Buckhead/Atlanta. I honestly don’t know exactly how I got here. Through a network of friends, by the generosity of strangers, and with a humbled spirit I sit in a bed with linens that are probably worth more than my entire wardrobe. I am definitely out of my element but I have enjoyed every minute here with my family. I haven’t needed to clean, do laundry, dishes, or anything on my daily punch list. The staff here is amazing and my family has been treated with such kindness and care. We have been totally pampered, and Noah has felt like a king (the staff continues to bring him plates of gourmet sweets). John is really happy about the complimentary boot shine, laundry services, and amazing food. I am just thanking God that we were provided with a weekend getaway to relax and enjoy each other before Monday. I didn’t know that a weekend relaxing in a 5-star hotel was what I needed to let go of some of the stress and anxiety I have been hording, and I am very thankful that it was orchestrated without my input! Sunday morning we are attending Buckhead church, a campus of North Point ministries, and I’m really looking forward to that service, and hoping to glean some more wisdom on how to release my cares to God. I know all the scriptures concerning it, but I am not very good at living it out and putting it into practice.
I have no idea what will happen on Monday. I’m trusting God to continue to show out through the miracle that is my son. I’m praying constantly for the Lord to continue to pour his healing into Noah’s body. He has been through so much and come out on the other side doing so well with very few side affects. (Noah was recently confirmed through psychological testing to have a cognitive disorder due to his surgeries and the trauma they have caused to his brain. He lacks executive function, and without almost constant redirection and lots of structure and proper discipline he becomes a very difficult child to handle. He becomes very angry and aggressive quickly, and the smallest inconvenience or unmet expectation will set him off like a rocket. We have been given some great tools to help guide John and myself through the process of parenting Noah, but there are days that it wears both of us down. On those days we have to remind each other that there are many other complications that could have manifested through Noah’s treatment; we just have to keep being consistent and push through the rough patches.)
Like I said at the beginning of this post, God is always providing where and when I need it. My battle with my thought life is going to be a life-long struggle as it is with everyone…I will not be tempted by anything that is not common to every other man/woman. But HE is faithful and just to provide a way out of that temptation. And he has always been there to offer a way out. It is up to me to choose whether or not to dwell on those “last days” thoughts, and often times I do, ending up with a face wet with salty tears and with a nauseated stomach. But tonight I am choosing to reach for the way out of these negative thoughts through the power offered by Jesus Christ. I am choosing to believe that He has more healing for Noah, the boy that never gives up. He just keeps going, and going, and going. Pray for Noah with me, and ask God to extend his hand of mercy once again this Monday morning. His scan is scheduled for the first slot, so we should have the results early to mid-morning.
A few verses before the scripture I mentioned above says this: “Rejoice in the Lord always. Again I say, rejoice!” (Phi 4:4). ALWAYS. Not sometimes…not just in good times, but always. I am rejoicing in the evidence of Jesus Christ and his promise to heal, whether in this life or through eternal life…He is our healer. Let us rejoice because He always provides a way of escape from temptation. Let us rejoice because He offers eternal life to any man/woman/child who would come to Him in humility and with belief in His forgiveness. Let us rejoice because death does not have to be the end of life. He is good to us on such a grand level that we cannot understand, and for that I will rejoice.
Thanks for reading my ramblings and confessions, and hopefully someone can take something positive away from this blog. Your encouragement and prayers help us through this journey…we appreciate you!
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.