We made the trip down to Children’s Hospital early this morning for our post surgery check up. Noah had his stitches removed and was so tough while they took them out. He had the ipad to distract him while the nurse pulled them out and he sat very still and for a two year old I think he did pretty well! He didn’t whimper, cry or squirm. In fact – I was more nervous about it than he was. Nadine, his nurse, pointed that out to Jessica and I. We all had a laugh.
We have had a very, very good recovery. Noah has been full blast since we have been home. Our biggest challenge was to try to limit how active he has been. He is 100% little boy. He loves to run & jump, climb on furniture, jump off furniture, run up to furniture, climb up it run on top of it then jump off it and roll in the floor – then repeat. All Day, all night. In the back yard – he swings, slides, plays with the dog, plays in the dirt, etc. You get the point.
At times I forget that he has just come through brain surgery. I have to remind myself of how careful he should be. When I see him acting “normal” it is hard to tell he has had anything happen.
We have an appointment with his oncologist next Wednesday at 9:00 AM. We will be discussing further treatment. We ask for your prayers as we approach this decision. There are other treatment options we have not tried. Radiation is one. There are also experimental drugs that could be a possibility. We really don’t want to see Noah go through anything else. We want it all to be over. Please pray that we will have wisdom and discernment.
We have not yet heard about the pathology report. Dr. Wellons was confident that the growth he removed was the same thing as before. He is also confident that he removed all the new growth and the tissue surrounding it. That is great news! It is what we can’t see though, that concerns us. These cells, if left unchecked, will multiply and again grow into something that threatens Noah’s life. The best treatment is total resection. Let’s all pray that that is the case.
Thank you for all the prayers and messages of encouragement. We are so blessed as a family to be supported by so many. Noah received a package in the mail yesterday from a couple we have never met. Inside were several toys. One of these toys was a small stuffed puppy. He quickly named it Charlie Brown (his new favorite cartoon). He tried to take it in the bath with him – we had to intervene. He went to sleep with Charlie brown last night. I know this seems like a small thing, but as a father to see Noah comforted by an act of kindness from a stranger is somewhat overwhelming. I am constantly reminded of how much he is loved by things like this. The words “thank you” don’t seem to be enough – so until I can find better words – Thank you!!!
We are sitting in the room packed and ready to go. We are just waiting on the discharge papers and we are out of here! Noah is ready to go. He has already been roaming the halls and climbing on the furniture.
As soon as we get home - we will party !!
Thanks to all who have checked this blog to keep up with Noah. Continue to keep him in your prayers as in the coming weeks we decide what kind on treatment if any he will get. God Bless!!
We are in a room! Noah had a good night of sleep. He woke around 6:00 AM. We were not allowed back to where he was until 8:30, but Noah can be a handful when he isn't happy so they let Jessica back around 7:30 AM. At 8:30 we all went to the MRI and Noah did great! Dr. Wellons (his neurosurgeon) came and gave us the report. From looking at the scan he saw that he was able to remove all of the tissue affected by the tumor and a lot of scar tissue. He was very pleased with the scan and very pleased with Noah's recovery.
Noah has been talking up a storm, eating popsicles and playing with the ipad. All of his blood work looks good. If he continues to do this well, we may be coming home tomorrow night! It is amazing how well he is doing. His face isn't swollen as bad as last night so he can see. He hasn't complained very much about pain, only about the IV in his foot. He has been a little sick to his stomach, but that is about as bad as it has gotten.
Jessica and I are doing well. We feel a tremendous weight lifted off our shoulders. We really slept well last night and are both looking forward to going home. We thank God for his grace, and for bringing Noah this far.
God doesn't always say yes to our prayers. He often allows us to walk in valleys where we are confused and unsure, grasping for hope. He allows us to go through painful situations, experience loss and disappointment. It is easy to question your faith in these times. It's easy to give into anger and doubt. It is easy to walk away from God and turn your back on Him when you are devastated by tragedy. What is not easy to do is to let go and just trust Him. When we make our requests and say our amens, thats when we must leave it in His hands and believe that He knows best. I have made many sighs these last five days. Almost every one has been reminding myself that Noah is in God's hands and not mine. Sometimes His decision are not at all what we want, but He has always been faithful to work out all things for good.
For some reason God has allowed Noah to go through these things. For some reason He has allowed pain, disappointment, and sorrow. We are not alone in this. From the beginning of mankind, pain and hardship has been a large part of life. Some people we know have never experienced pain like what we have experienced, and others have had it much, much worse. Through it all, in every circumstance, Jesus' words have been true. "In this world you will have trouble, but take heart, for I have overcome the world."
When we lay our pain and worry at the feet of Jesus, He allows us to experience victory. That victory is either here or on the other side of eternity. Either way - it's still victory!
I hope to do the next blog from my living room.
We are in the surgery waiting area. Noah has just fallen asleep which is a huge blessing. Soon the anesthesia doctors will come and give him some medicine (versed) to help calm him as they take him to the OR. Once inside Noah will have about 4 IVs. We were just told he is anemic so he may need a blood transfusion during the operation. It is scheduled to last about 5 hours. There is a good possibility the incision will not be as large as the first surgery, and that will make recovery easier. We will be kept informed of the progress as the surgery goes on. As much as I am able, I will pass on the information.
Please pray for Noah's safety. There is a risk of stroke and other more serious complications. Please pray for the clarity of his physicians and the attendants. Pray for calm hands and quick minds. Pray that this is the end of Noah's life with cancer. The best and only known way to cure this type of cancer is total resection. Today could be the best of days for Noah, The end of a long and hard chapter in all our lives.
4:20 PM I just talked to one of Noah's physicians and so far so good. He is doing well. They have given him a unit of blood already. The neurosurgeon currently is using a microscope to look at the area where the tumor is. No word yet on how much longer it will be. Hopefully we will be able to update that its all over.
5:54 PM Noah is now in recovery. The surgery went very well. Everyone on the team was pleased with how everything went. Noah is still asleep and we are waiting for the moment we can go see him. Dr. Wellons was able to remove all of the new growth and all of the scar tissue as well. He is sending all of it off for pathology report. Noah has an MRI scheduled for in the morning to look at the area. He will stay in the PICU overnight and hopefully be moved to a room tomorrow.
God is good! We are so thankful for every prayer and message of encouragement from so many of our friends, family and those of you we have never met. Thank you so much for loving our son.
It is 8:30 AM and Noah is in the MRI at the moment. Todays scan will give his neuro surgeon a 3D image of the area of the surgery. He will use this data to map out the procedure before the first incision. The small green tabs on his head are reference points he will use to know exactly where the tumor is. Dr. Wellons explained to us that the area the tumor is in is not the place we thought it was originally. For months we have looked at a small area of scar tissue and wondered if it was tumor. The new growth is not in this place.
One of the risks involved in the surgery tomorrow is that the area of the first tumor resection is now a fluid filled hole. Once the fluid is removed, the brain may fall in on itself, and the surgeons will have to dig to get to the new growth. This MRI will give them accurate information on where they should go, instead of them just having to look for it .
Noah's surgery will begin at 1:00PM. We have to be at the hospital at 10:30 AM for preparation. He will not be able to eat breakfast or lunch. The surgery is estimated to last five hours, after that he will stay in the pediatric intensive care unit. We do not know how long he will have to stay in the PICU but we hope it will not be for long. We are not allowed to stay with him overnight and during the day we have to leave every two hours. This is one of the hardest things for us to do.
After he wakes up from the MRI today he will be dismissed. We are so thankful to Jarrod and Marci Harrison and the Hanna Grace foundation for putting us up in the hotel. If you do not know their story, it is worth your time to read it. They are amazing people: www.hannahsgiftsofhope.org
I would also like to thank our family at Friendship. Your generosity gave us a great weekend to enjoy being with each other and it relieved a lot of stress.
Tomorrow Noah will need your prayers.
We have been overwhelmed by the support of so many people. In the last 24 hours we have received so many messages of encouragement, sympathy and hope. We are truly blessed to have so many friends who love our little boy.
Noah had a full day of fun. We took him to his Grandmother's house in Florence and he played with his cousins Evie and Aaron all afternoon. My mom said he played well with everyone and it was a good time. Jessica and I have planned a quick get away trip for us. We will be leaving early Friday morning headed to Atlanta. We want Noah to have as much fun as possible in the short time we will be there. Six Flags has a special Thomas the Train section I think he will enjoy, and I know he will love the aquarium. I hope that he has the time of his life.
Next week will be tough. On Monday we meet with his neuro surgeon, Tuesday we meet with the anesthesiologist and have another MRI. Wednesday he will have surgery. As of right now, we don't know what time the surgery will be.
For the next three days we are going to try not to think about it. A few weeks ago, our pastor preached a sermon in a series called "one month to live." In the message he showed a clip from the movie "Dead Poet's Society" where Robin Williams whispers into the ears of his students "Carpe Diem" - Seize the Day! I can think of no better time than now to Seize the Day. So for the next three days I may not answer my phone, check my email or update this blog. I plan on disconnecting from everything except the laughter and giggles of a 2 year old boy who holds my heart strings. We may have as much fun in the next 72 hours as the average person does in a year. Why not - we might as well while we can. : )
Thanks for the prayers and the kind words. For those of you who know how to grieve with those who are hurting.. thanks for what you have said .. or rather what you have not said.
It may seem awkward to tell someone that you can't think of anything to say when they are hurting. In that moment give in to the awkwardness and just say the most important things - "I am sorry for your hurt." Most of the time, that is enough.
I imagine thats why Jesus wept when he arrived at the tomb of Lazarus. He saw his friends grieving and hurting. He was hurting too. Instead of telling them "everything will be alright," He chose to weep with them. He understood that sometimes the best things to say when someone is hurting are usually things not spoken. There is a time to grieve with those who are hurting, a time to encourage those who are discouraged and a time to celebrate with those who have something to celebrate.
I spoke with a man last night who has been through some tragedy in his own life with his children and he said to me, "You can usually tell when someone has gone through something like this; they are the ones who only say, 'I am sorry you are hurting.'"
We know Noah is in God's hands. We know his story isn't over. We know that God can and will work good out of every situation.
Now its time for me to sleep - for tomorrow we party!
Noah had his 5th MRI this morning around 10am and after he woke up we went straight to clinic to meet with his oncologist. The past 2 MRIs have shown a questionable spot on the outside edge of the cavity that remains in his brain. That spot hadn't changed as of late June, but the "spot" has grown to about 1 centimeter in 3 months and is being treated as new tumor growth. Chemotherapy has been cancelled and we now have a surgery scheduled for next Wednesday, October 13th. We will meet with Noah's neurosurgeon on Monday and remain in Birmingham for another MRI on Tuesday, then surgery Wednesday morning. We are unsure of the surgery time right now, and will have more details about the surgery after our meeting on Monday. What I do know is there is more tumor despite the chemotherapy treatments, and that scares me. I knew in the beginning that this was a very aggressive tumor and there was a possibility that it could return, I just didn't expect that to happen. Noah's neuro-oncologist is still searching for other treatment options - maybe radiation, since he is approaching his 3rd birthday and it is considered "safer" after age 3; maybe an experimental treatment or a different type of chemotherapy - we will discuss all that after this second surgery.
In the meantime John, Noah, and I are quickly planning a last-minute mini vacation to spend some quality time together before next week. We are unsure how long we will need to stay at the hospital following surgery. I'm praying that one night will be sufficient, but preparing for several nights. Of course this news is devastating to our family, but we also knew there was a possibility this could happen. We will continue to stand in faith, pray, and ask everyone to pray with us for Noah's healing and most importantly God's will. This is just another bump in the road and we will get through it, hopefully revealing even more of God's glory. There will be a time of prayer and laying on of hands at our church (www.friendshipumc.org) tonight during the 6:15pm believers service. We believe in the passage "Is anyone among you suffering? Let him pray. Is anyone cheerful? Let him sing psalms. Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. Confess your trespasses to one another, and pray for one another, that you may be healed. The effective, fervent prayer of a righteous man avails much. Elijah was a man with a nature like ours, and he prayed earnestly that it would not rain; and it did not rain on the land for three years and six months. And he prayed again, and the heaven gave rain, and the earth produced its fruit" (James 5:15-18). Please join us in prayer wherever you are.
We will keep updating as we have more news, especially on Monday evening once we have a surgery time and more information about the procedure. Thank you for continuing to support us and lift up our little boy.
James 1:2-8 - My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing. If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him. But let him ask in faith, with no doubting, for he who doubts is like a wave of the sea driven and tossed by the wind. For let not that man suppose that he will receive anything from the Lord; he is a double-minded man, unstable in all his ways.
2 Corinthians 1:20 - For all the promises of God in Him are Yes, and in Him Amen, to the glory of God through us.
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.