We are back home, Noah and John are watching Star Wars (again). It’s been a long day of waiting, wondering, praying, and remembering (2 years ago today a CT scan at Huntsville Hospital revealed Noah’s tumor). John described our situation last night briefly in his post, so I will pick up where he left off. This morning we awoke ready for Noah’s MRI and ended up waiting until about 10:30 for him to actually have the scan. When it was confirmed that his symptoms were a result of pressure from the growing tumor I was a little surprised. I honestly did not think that it would begin to have an affect on him this soon. Noah slept for a while after the scan, we ate lunch, and waited for a while longer. We had a few visitors to help us pass the time. When his neurosurgeon was able to come speak with us, I realized how anxious I was to hear what he had to say. In his always calm and collected way, he gently but matter-of-factly told us what I had (regretfully) expected to hear. He said that it is reasonable to go ahead with the surgery, it would be basically the same as before, but this time he would remove the normal tissue (which is more than likely not functioning) surrounding the tumor as well. Based on his history, we could maybe expect the tumor to come back within 3 months, though no one can really judge how effective the surgery would be. There is also a risk of morbidity; he could very well lose motor control and continue to decline. Obviously, without surgery, that risk becomes fact…it would only be a much shorter time that he would begin to decline and eventually pass away. So the surgery would buy us some time, though we are unsure of how much time.
John and I have been divided on the surgery option for a while, and we haven’t yet discussed the consultation with Dr. Wellons. This is such an extremely hard decision to make, and we can’t be leisurely about coming to an agreement. We are both praying for peace and wisdom from the Lord, and we ask that you pray with us that God will guide us to a solid decision, one that we will look back on and not have regrets about. His quality of life will be a major factor in our decision, and right now he is still doing very well, despite the scare we had yesterday. We are still leaving for our Disney trip this weekend, and if we do proceed with the surgery it will be sometime the week after we return. We also ask that you pray for his physical ability to not be hindered next week so he can have the most enjoyable experience at Disney World as possible. We have several super fun events planned for him, and we want him to have an amazing time with his family.
I can’t speak for John in this, but today I have felt very weak, physically and emotionally, and I find my peace and joy being tested. I told our hospital chaplain this morning that I was doing my best to push all sadness and grief aside because all I have is this moment and I don’t want to miss or regret anything that I could experience with Noah. But after loss of sleep, waiting, bad news, and pressure to make one of the most important decisions I’ve ever had to be a part of making, I feel just plain beat up and that leaves my heart not quite as guarded as I need it to be. So, I’m still claiming for our family Philippians 4:6-7 that “the peace of God which transcends all understanding will guard your hearts and minds in Christ Jesus.”
Even in my sadness today, I was able to give thanks to God. Noah was in the hallway outside of our room running as best he could, infectiously laughing, and giving out hugs (which looked more like full-body tackles) while another child pushed his walker in order to get a few laps in, a mom held her infant in a doorway with IV lines dangling as she tried to comfort her child, and behind closed doors in dark rooms other children tried to sleep, while still others didn’t have the ability to even get out and roam the halls. As we approach the Thanksgiving season, I’m often tempted to be reminded first of all the hurt my family has experienced surrounding this holiday: deaths, diagnoses, surgeries, etc. but no matter how bad a day may be I believe we can always find something good in that day - if only in the grace and forgiveness of Jesus Christ then that should be enough for us. I will have to remind myself of that truth again this Thanksgiving; we have so very much to rejoice in and praise God for, and we will live in today and make the most of it!
Thank you all for praying for us, for Noah, and I hope everyone has a wonderful Thanksgiving holiday!
Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus (1 Thessalonians 5:16-18).
Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you (Philippians 4:4-9).
The last few days have been a little discouraging for us. We noticed Wednesday of last week that Noah's legs were not as fast as usual. He couldn't run full speed and developed a limp. We started to get concerned. This is how we first began seeing effects of the tumor two years ago. Today began like any normal Sunday. We went to church, Noah went to class and had a good time, ate lunch with friends and came home.
He began throwing up around 2:30pm and didn't stop for an hour. Jessica laid him down for a nap around 3:30pm. He has gotten out of the habit of taking naps, so we knew something was wrong. He was still asleep at 6:30pm. Jessica tried to wake him but he would not wake up. She called his nurse who advised us to get him to Children's hospital. By 7 he was still not responding. She placed him in the van and we started down the road. He woke up in the van and began asking for food, which was a good sign.
Once at the hospital he ate a few pieces of chicken but soon fell back asleep where he wouldn't wake up. He is being admitted tonight and is being scheduled for an MRI in the morning.
We have an appointment with his Neuro surgeon in the morning. The new image from the MRI should give us a clear picture of what's going on and what we should do.
We desperately need wisdom.
Thank you for praying for Noah. Spread the word.
I feel like I need to make an addendum to the last blog. If you haven't read my post from Tuesday, I wrote "My primary role for the past 3 ¾ years has been to love, nurture, protect, and care for him (Noah) to the best of my ability. With that taken away, I will enter a completely new season, my roles will shift (with no other children, I will obviously no longer be a mother) and I will face something completely different and that’s frightening." Most comments I've received have reassured me that I will always be a mother, and I do agree with that. But what I was referring to in my statement was my "role" as a mother. With no other children in our family, that role would change to something else. I wouldn't have anyone to "mother" anymore, and that would be an extremely difficult change for me. I decided I should expand on that comment a little more in hopes it will be interpreted the way I intended it. Thanks for all the encouragement you all have given me since the last post; I really didn't expect all the responses I received and I'm very humbled that God would use my writing to encourage others or remind them of the importance of trusting Him.
We have a meeting with Noah's surgeon on Monday afternoon, so I will update again once John and I decided what we are doing with that situation. Hope everyone has a great Sunday!
"Now faith is confidence in what we hope for and assurance about what we do not see" (Hebrews 11:1).
The steroids have helped to get rid of Noah's rash, but they have in no way helped his personality or already short fuse. He has been re-named the little Hulk. He finished his last dose today and he has pretty much gone back to being just a strong-willed child. (A strong-willed child on steroids is a tough match I would think for even the most seasoned of disciplinarians!) He spent the weekend visiting with his Grammy, aunts, uncles, cousins, and friends, and Mimi came down for a visit Saturday night. Many of us have loved him through his irritated comments and angry tirades last weekend. :) This boy will tell you to "Stop talking to me!" one minute and run to give you a kiss and tell you he loves you the next. He has always fought with everything he has and loved with even more. I know, as his mother, you expect me to believe he is wonderful. But beyond my relationship to him and my deep love for him, there is something so special that I would hope others could recognize...a God-given sweet spirit that loves Jesus already, that has compassion for others. There is slight glimmer in his eyes that tells me, "I'm going to do great things." I've written this story a while back (humble me if you've already read this), but when Noah was born I began praying a specific prayer over him most nights as he slept: "God grow this child to be a mighty man of Yours, a man who will follow you at no cost, who leads many to Your Kingdom, who will be a righteous man in an unrighteous generation. This is Your child that You have loaned to me and John, and He will be used for Your glory." I believe that to this day God is answering my prayer and unraveling His plan for Noah's life. This young man has an army of evil against him, but we will not cease praying for His power and goodness to overcome the evil of this world. Right now that evil is in the form of cancer. Tomorrow it could take another form. We don't know what tomorrow will bring forth, but we do know that we stand on Jesus the solid Rock, with a Holy Spirit that intercedes for us with groanings that we cannot understand, but that the Father does. When you are out of words to pray for my son - which I find myself in this position often, because I am asking constantly for healing - ask the Holy Spirit to pray for you. Please don't give up storming the heavens with prayers for Noah.
There are some of you who are reading that believe the medical reality that Noah cannot survive because there are no medical means that can save him. There are some of you who are reading that believe that God will heal Noah if enough people have faith as small as a mustard seed to move this mountain that is brain cancer. I must fall somewhere in the middle at the moment...I believe with everything that I am that God is all powerful, all knowing, and has the ability to just think the thought that Noah will have earthly healing and it will be. No matter how I am tempted to doubt with my mind, my heart has always been full of faith in God’s ability and power. My fear for the past two years has been: if God chooses not to intervene, will I still have faith in His plan and His will for our lives. Now that I am so very close to dealing with this situation, I can honestly say that I am filled with a peace that passes all understanding, and that my heart and mind are definitely guarded from any attack by anything unholy or untruthful (I understand that this will be a daily battle). There are so many theologies and opinions out there, and many are being tossed our way. What we find truth in, we store up in our heart; what we discern as hurtful/ignorant, we disregard as good intention. Right now, I know that my desire for Noah to be healed on earth is a purely selfish motive - I need him here. My primary role for the past 3 ¾ years has been to love, nurture, protect, and care for him to the best of my ability. With that taken away, I will enter a completely new season, my roles will shift (with no other children, I will obviously no longer be a mother) and I will face something completely different and that’s frightening.
Noah has been through so much in his short lifetime. He has always looked like a normal healthy boy (with exception his bald period and monstrous scar), and I have often wondered if people understand how much children with cancer have to endure. In his experience alone: Brain surgeries, drains, steroids, PICU isolation without parents, loss of peripheral vision, port accesses, hours/days of chemotherapy drugs through IV, days upon days of chemotherapy side affects (vomiting, diarrhea, lack of appetite, metal taste in his mouth, no immune system, isolation because of potential for infection, toxic urine requiring anyone changing diapers to wear gloves, sores in his mouth, blood and platelet infusions, drug reactions, hair loss, potential for hearing/vision loss, potential to develop other types of cancer as a result of the drugs, weakness/fatigue, daily GMCSF shots in an attempt to boost white cell count), radiation (daily sedation, hair loss, loss of executive function, potential for long term IQ loss), very long and tiring clinic visits, very long (even extensive) hospital admissions during neutropenic states, lots of time spent in a car seat driving back and forth to the hospital, loss of a normal childhood…..this isn’t even all of it. There are things we have all experienced that have been blocked from my memory. I read other blogs from cancer parents and think, oh yeah, we did that…that was horrible. And there are children we see every time we visit Children’s that have been through and are still going through SO MUCH MORE. Children who have lost mobility due to surgeries or treatments; we are blessed that Noah can run. Children who aren’t able to speak or have major speech delay; we are blessed that Noah rarely stops talking. Children who have not had nearly the quality of life that Noah has….for these things we are blessed. For the past 2 years WE’VE BEEN BLESSED, and so very thankful to God for Noah's abilities. If the day comes that we have to say goodbye to this dear sweet and precious child of God, we will not ask God, “why did you not give us a miracle?” because the past 2 years have been nothing else but a miracle. Yes, he has suffered a great deal. He holds up well, and you would never know what he has been through at first glance. But he has fought very hard, and very well with very little complaint. And for him to be completely healed and whole, though not with me and John, will hurt us more than words can describe and at the same time give us peace beyond understanding. It is a very hard thing to watch your child suffer so, and have no control over his pain and sickness.
I had not planned to bring up this subject, but please know that I want you to continue praying for Noah’s earthly healing, as I said earlier, pleading with God to grant Noah a long and healthy life on this earth, doing His will here and helping to grow God’s Kingdom. But know that sometimes God says no to our prayers, and that does not make Him mean, as Noah often says of me when I tell him no, and that does not make God unloving, because just as you want to give good gifts to your children and make them happy, you cannot say “yes” to every request they have of you, because you can see farther ahead then they can. We as children of God cannot understand his ways because we can’t see ahead, and we wouldn’t understand even if gave us His reasons. Have you ever tried to reason with your child? :)
I love this little boy in a way that I love no one else; it will never die, it will never fade, but only grow. And Jesus loves Noah immeasurably more. In that, I find my comfort.
Noah has at several times come to John and myself (unprompted/unprovoked) to say, “I’m going to live with Jesus.” We smile and say, “one day we all will (when we love and follow Him) Noah, but right now we’d like you to stay with us here.”
These days have difficult moments, but overall they are sweet and wonderful, and we are trying to make the most of each minute, and make memories along the way. Memories that “will last us the rest of our lives.”
Thank you for sharing in this difficult, winding road we have been traveling and please know we love you all for all you have done for us. I hope you can take away something positive and encouraging from this post; I just wrote what was on my heart and I am trusting God it needed to be written. The song I posted below has reminded me to rest and trust in Him.
Noah began to develop what looked like a rash yesterday; I noticed it around lunch time and called his nurse. Overnight the rash spread all over his body and became increasingly worse. We were able to meet with his doctor and nurse this morning, and they immedietly decided it was an allergic reaction to the drug he was taking. Needless to say, he is not going to be taking the drug anymore and will be removed from the study. He is taking steroids that will hopefully get rid of the "rash" that is covering his body and making him pretty uncomfortable (he is itching and when he scratches the bumps they open up and begin to look like "whelps"). They have yet to see this response to the drug, and this would not be considered a side effect since it is an allergic reaction. We are just glad it didn't affect his breathing, and the Dr. was able to see him in time.
So - now we are back to square one. One option down, three to go...we are hopefully meeting with his surgeon sometime soon to get his opinion on a third surgery. We have not wanted to go this route, since after each surgery the tumor has continued to grow. There are so many risks with brain surgery, and we don't feel comfortable allowing Noah to go through it once more if the tumor is going to come back again in 3 months (which it did after the last surgery). But we want his surgeon's opinion before we close the door on it. Chemotheraphy is out of the question - too many side affects with very little, if any affect on the growth. Maximum dose of radiation has been given already. Doing nothing - well, it's just not even an option for us right now if we can help it. So we are still praying for guidance, wisdom, discernment, and most of all healing. Please join us as we pray, and ask others to pray with us...please.
It’s been a good weekend for the Crowes. Noah began Friday with a short visit to the doctor to have his blood tested and then have his port de-accessed. He is always very brave in these situations. Getting his port de-accessed is a little uncomfortable for him due to the adhesive that holds the tegaderm bandage over his “noodle”. But as always he toughened up through the process and we were out the door.
After a quick stop to drop one Grandmother off and pick the other up in Athens we headed to Memphis Tn. for the Yo Gabba Gabba live show at the Orpheum theatre on Beale street. If you are not familiar with the Yo Gabba Gabba show, just know its Noah’s favorite show. He had a great time.
We stayed the night in Memphis and woke to eat breakfast with Jessica’s aunt and uncle, Kerry & Erik Eliason and then headed to the zoo. Noah loved the playground and the petting zoo with the chickens, goats, pigs, cows & ducks. He also had a good time watching all the monkeys playing in their areas. It was a good day to be at the zoo.
We parted ways with Kerry & Erik and met up with my cousin George Welty, his wife Dana and son Brenan. We had lunch at a very unique diner called The Caritas Village. I encourage you to check out the web site and be inspired. We had a great visit and lunch and were back on the road toward home.
Noah has handled the new treatment well so far. There are a few things going on that may be side effects. His stomach is more upset than usual and his skin is dry and itchy. We are very proud of his ability to swallow pills and go without breakfast until 11:00 am on the days he takes it at the hospital. His nurse Julia is a very sweet lady. We can see her genuine care for him in the way she treats him. It is very comforting. Noah has an MRI on November 28th. This will mark Noah’s two-year battle with cancer. We are praying the scan shows this new medicine can stop the tumor. Please pray with us.
Some very generous friends have given us lodging for a trip to Orlando Florida November 29th – December 5th. Thank you to everyone who has offered us help in this area. We have been so humbled by the offers sent to us. Noah’s oncologist Dr. Reddy has told us she doesn’t think Noah will be hindered in any way on this trip. Conversations like this pull us into the reality of Noah’s situation. We are trying to make the most of every opportunity we have with him. We encourage you to do the same with your family.
Please continue to pray for Noah to be healed, that his life would fulfill the purpose God intends and for him and for me and Jessica.
Spread the word … Pray for Noah.
Hope everyone had a Happy Halloween! As you can see in the picture, we had a family theme going on. Big Darth Vader and the Storm Trooper just happened to be hanging around the RUMC Trunk or Treat event and jumped in the picture with us...it was great fun. Noah also went trick or treating at a friend's neighborhood on Monday night, and has now learned the meaning of Plex the robot's song, "too much candy's gonna make you sick!"
Noah had his first treatment with this new clinical trial on Tuesday. He did very well considering I had to be creative in entertaining him at the hospital for about 6 hours. He did well during his port access, waited patiently for his line to clear so the nurse could get a blood return, swallowed 2 pills like a champ...and was promptly rewarded with two age-appropriate Star Wars action figures. (I've learned over the past 2 years that this kid will go along with any medical procedure if he is promised a prize...not sure what that is doing to him psychologically, but my philosophy thus far has been "whatever works.") The only side affect he has encountered was an upset stomach, and I honestly believe that was the candy's fault from the night before. (After this week's treatment he will visit the Dr. once a week for labs/evaluation, while taking his meds every other day.) He went today for labs, tomorrow we go back to CHS to take another dose of medicine and labs, Friday we go back for labs, and then we are off to Memphis! We have purchased tickets to a Yo Gabba Gabba Live show as a surprise for Noah (he wanted to meet the characters of the show for his Make-A-Wish but they weren't all available.) Hopefully it will be a good experience for him. Saturday we will tour the Memphis Zoo, so it should be a fun weekend.
Tonight I have been looking at some of the blogs I'd posted throughout our journey, and God has reminded me of His faithfulness through it all. Even in my moments of ultimate weakness and exhaustion (many nights spent in the ER, days upon days of in-patient stays, several bad MRI results, 2 lengthy surgeries, miles of separation from my husband/Noah from his dad, watching my son loose his childhood to the affects of chemotherapy...) I have written about his faithfulness and goodness.
From a post I wrote one year ago: "God is so good, and this battle is not only ours but His…and in that we find comfort. The Lord can heal Noah through a number of means, but whether that is in this life or eternity we cannot say for sure. We are not promised tomorrow and we don’t know what a day will bring forth (for ANYONE), so we live each day to the fullest and spend as much time together as we can." This is an uncomfortably real and present truth that we are facing tonight, but despite the fragility of life we have a peace that passes all understanding, because we know WHO is in control, WHO we follow and trust, and WHO allows each and every breath that fills our lungs. Not one of us is promised that we will make it home from work, school, or that quick trip to the grocery store.
From last March: "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 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."
These past two years with Noah have been such a gift and a miracle, considering his medical condition, and we have been blessed to have the perspective on life that God has shown us. We are in no way giving up on Noah, and we are still fervently praying and believing for his healing on earth, but we also know that He belongs to the Lord and Noah's life is in God's hands. Thank you for continuing to pray with us for his healing and for God's glory!
"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
"But may the God of all grace, who has called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect, establish, strengthen, and settle you. To Him be the glory and the dominion forever and ever. Amen." 1 Peter 5:10-11
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.